PCLEC Training Manual

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Placer County
Law Enforcement Chaplaincy

P.O. Box 1111
Newcastle, CA 95658
(916)663-2427 (24 hours)
(916)663-9481 (Fax)

 

Chapter 6

DEATH & GRIEVING

 Index

1. DEATH NOTIFICATION CLASS

2. STAGES OF THE GRIEF RESPONSE

3. GRIEF INTERVENTIONS AND DEATH NOTIFICATIONS

4. PROTECT YOURSELF FROM THE DEAD

5. HANDLING DIFFICULT GRIEF CRISES

6. APNEA, SUDDEN INFANT DEATH SYNDROME

7. INFORMING THE FAMILY OF SUDDEN DEATH

8. COMMONLY ASKED QUESTIONS ABOUT SIDS:

9. FACT SHEET: SIDS INFORMATION OF THE EMT

10. SUDDEN INFANT DEATH SYNDROME

11. HOW TO DISTINGUISH BETWEEN SIDS AND CHILD ABUSE AND NEGLECT

12. WHAT DO WE KNOW ABOUT THE SUDDEN INFANT DEATH SYNDROME?

13. WHEN SIDS HAPPENS

14. SIDS CURRICULUM FOR EMERGENCY MEDICAL RESPONDERS AND FIREFIGHTERS

15. LINE-OF-DUTY DEATHS:

16 CHAPLAIN'S CORNER

17. MEN AND GRIEVING

18. HANDLING DISTRESSED RELATIVES AND BREAKING BAD NEWS

19. " HOW DO I ASK?"

20. THE WHO, WHAT, AND HOW OF DONATION

21. GIVE TO THE FUTURE: SUPPORT ORGAN DONATION

 

1.  DEATH NOTIFICATIONS: THE MOST DIFFICULT TASK

 

IMPACT:

Understand grief and grief response
Dealing with grief
What happens with grief
Initial reaction to death
Unable to come to grip with what has happened.
Denial: refusal to believe
Afraid of what has happened and what will happen.
Maximum stress

 

RECOIL:

2nd stage
Anger, protest, bitterness, guilt feelings
If I, could I, would I. loneliness
How will I go on?
Assist survivor with a need to go on
They will have a yearning for deceased not to be dead
You cannot recover from grief until you are in a past tense process: called closure
He was; instead of he is
Could be preoccupation of the person calling the deceased
Searching for deceased will happen
Desire to be with others, relatives, friends, neighbors
How we react is how the survivor will react!
Be positive, in a negative response
Sift from present tense to past tense

 

RECOVERY:

I have to go on!
I now must develop a new set of functioning rolls
Realize that life will go on
Set up new social life
Be both father & mother
Facing issues that I am going to be alone the rest of my life
Will need: counseling, financial, and religious
Anxiety; fatigue; stress
Pulling together the past, present, and future
No more denial is evident

 

DEATH:

End of life but do not sever the bond
Love still exists
What did he or she mean to you
Emotions are the same between long time relationships and short term relationships

 

LOSS:

Takes you beyond yourself
Loss hurts
We always want to say: I know how you feel
If you don't know, don't say you know, But we do know pain and pain hurts
We don't know feelings
You're never ready for what you will feel
Emptiness and loneliness do not come into focus until it happens
The Loss in death is permanent
Loss invokes feeling of fear and fright
The relationship is gone, it is over

 

GRIEF/MOURNING:

Grief is the pain of loss, it's over whelming
It can not be contained
It can tear us apart
Anger, disbelieving
Grief is the single most powerful emotion we will ever face

There is a reason why kids have little animals like hamsters, they do not have a long life expectancy; this helps them work through death

Grief shared is grief relief
Bottled up grief causes ulcers
Crying helps to mend
Grief: is the inability to accept what is inevitable
We all will die
Grief is the inability to accept it
Mourning is a process of healing
Everyone who dies has a relationship with someone that effect someone
Mourning: last until you get your sense back about yourself
It is the process to soothe pain
It can not be rushed
Healing takes time
Us who make death notifications will be effected


THE PSYCHOLOGICAL AUTOPSY (What do we do with it? Where do we file it?)

All deaths fit into one of four categories:

N. Natural
A. Accidental
S. Suicide
H. Homicide.

Imputed Lethality: How much of a role did the deceased help in his own death?

High Lethality: He planned it.

Moderate Lethality: He was in a position to die. (Motorcycle going to fast, jumping on a train, driving a car too fast without seat belts, careless and risky.)

Low Lethality: Forgot safety factors A mistake, stupid, caused His own death.

Absent Lethality: Person really wanted to live.
Failure on inside that caused his death.
Failure on the outside that caused his death.

To lethality: Add Age, Sex, family Status.

Example:  79 year old smoker, kids live across town. Natural death.
Coroners case. 911 verses 11 year old girl. Assaulted and murdered 911.
We have different feelings for the girl than we did for the old man.

Example:  21 year old man/boy Motorcycle 130 mph, crash into car, 911
This we deal with differently.
We pigeon hole death notifications.
Psychological autopsy: we file it.
19 year old girl takes pills, suicide, loss of boy friend.
High Lethality


IMPORTANT WORD:  TRANSFERENCE

33 year old female or 18 month baby, both are dead, you go to their home - who is that 33 year old girl or who is that baby?
Transference makes it mine.
Cynical slide: We must have a support system so that we can defuse.
Debrief, or else transference takes place..
What if someone was to tell your parents that you were dead?
Be prepared - altruistic response says that I can do it better.
The hedge between altruism and cynicism is debriefing.
Catharsis: A mental and verbal purging. emotional purging. It takes talking to get through a death notification.

 

IMPACT ON SURVIVORS:

Is anyone ready? Never!

A.C.I.S.: Acute Critical Incident Stress leads to Post Traumatic Stress Disorder, if not adequately handled.

How was notification handled?
What kind of support system is in place?
What information is available?

Even knowing the risk and the hazards does not help prepare for the handling of the loss of a loved one.

Our Reactions: How we feel, think, and act, can help or hinder there reactions!

 

MOST COMMON REACTIONS:

All Reactions will be either COGNITIVE, EMOTIONAL, OR PHYSICAL
Concentration: decision making problems
Confusion
Hostile
Feeling alone: uncomfortable in social places
Flash backs: intrusive thoughts
Fearing familiar things
How will I Survive?
Numbness: a lack of interest to go on
Guilty: I wish I had...
No one understands
Lowered energy: causing a slow down
Irritated, annoyed
Tense, keyed-up
Easily hurt
Over Imagining
Closure: understanding something is real is when reality settles in
Mind racing: keep repeating and thinking that same thought
Emotionally empty: going through the motions
Anger
Wishing others would take care of you
Sleeplessness
Feeling taking advantage of
Vulnerable
Over thinking decisions
Transference: anniversaries, birthdays, holidays
Angry for not accomplishing more: Why didn't I do...
Displacement

 

3 RULES TO LIVE BY:

1. If you can't improve on silence, don't!
2. If you can't improve the conditions in your home when you get there, then don't go in
3. We need to use soft words in our vocabulary: splendid, lovely, wonderful, beautiful

 

DURATION OF DISTRESS:

Will be related to the survivors need for contact. Wife, Mom, Dad, Husband, Sister, Brother
Time is not the healer, although it helps
We have to encourage pre-event behavior
Assist the survivor in doing the things they did before the death

 

SUPPORT POLICIES DESIRED:

Action Oriented Assistance.
Need to know means: Help me do what is next
Psychological and emotional support assistance
Conformation Information
Command Level Contact: very important
Pastor, mortuary, etc.

 

OVERCOMING GRIEF:

1. Take time to accept death, we can't deny it.

2. Take time to let go: Letting go indicates that we are not in control of life.

3. Take time to make decisions.

4. Take time to share:
        Loss of parents, grieve for our past.
        Loss of spouse, grieve for our present.
        Loss of a child, grieve for our future.

5. Take time to believe: There is a difference between fact and faith. Faith works because it is totally illogical. It is 28 to nothing in the last of the fourth quarter. Faith can win. Facts would say it is impossible to win.

6. Take time to FORGIVE: Non-forgiveness is a bitterness. It traps people in their past. Forgiveness is not pardon but it helps in looking at things differently.

7. Take time to feel good about your self.

8. Take time to laugh: laughter in humor is medicine. A merry heart makes like a medicine.

9. Take time to meet new friends.

10. Take time to give: time, energy, effort. Getting involved makes life go on.


DEATH NOTIFICATIONS: IN PERSON ONLY

DEATH NOTIFICATIONS: IN PERSON ONLY
(Suggestions/Recommendations)

1. Correct Information: (deceased and family)

Who, where, when, family, address, how it happened.
Absolute correct information.

2. 2 Person Detail / Parking / Time of Day:

Park down the road.
It doesn't make a difference what time of day or night it is, just do it.

3. Pre-event conditions of family: health, kids, neighbor/friends, (stability) if we need you can you come.

4. Knock and Introduce: Get In! Assess room conditions:

5. Get into a soft room: living room, family room, somewhere with soft chairs. (Tell everyone in the house at the same time.)

6. Relate the message using direct words: DEAD & KILLED

Don't say that "We are sorry" or "That we have bad news."
We are here to tell you that Philip is dead.
Take no personal effects with you.

7. Expect any type of reaction.

8. Limited facts only: ABSOLUTELY NO OPINIONS.

I don't know: is something you should not say.
I will find out: is OK or an investigation is taking place.
Absolute honesty is not always the best way to handle things.

9. Specific, but tactful.

                    This is the place where no jargon fits in.  Use soft language and plain language.

10. Empathy, not sympathy:

Be empathic not sympathetic:  You will most likely be a stranger.
Give no reason for false hopes.  People do not want sympathy from strangers.

11. Closure?  Quiet?:

                    Thinking of loved one in the past tense.
                    When you can not improve on silence do not anything.

12. Don't rush off:

Make phone calls, get someone else there to help, don't leave them alone.

13. What type of support systems are available to them?

14. What else can you do?

Pastor/Priest, Relative/Children, Neighbors...


EPILOGUE: CLICHÉS

Things that are said that people despise hearing:

Be strong for your children.
You got to get a hold of yourself.
It's natures way or God's will.
Buck up.
Your young, you'll make a life for yourself.
Time will heal all this.
Look around your not the only one going through this.
You need to stop reliving the past.
Only the good die young.
You need to count your blessings.
Think of your precious memories.
God needed Him more than you did.
He's happy now that he's with God.
I know how you feel.
If there's anything you need just call.
What you don't know won't hurt you.
Well you have 2 other children.
You can have more children.


Back to Chapter Six Topic Index

 

2.   STAGES OF THE GRIEF RESPONSE

Three Stages of Grief:

1. Impact

The initial reaction to death is that of the Impact stage. This phase is characterized by numbed, stunned and shocked feelings. The person is unable to come to grips with what has happened; he feels suspended form life. Usually the bereaved experience a restricted field of attention and are indifferent to their immediate needs. Often there is denial and a refusal to believe that the deceased is gone. Generally the person is not in touch with his own emotions although he may appear afraid. There is often somatic distress such as choking, shortness of breath, sighing, weakness and poor digestion.

The impact stage is the one where maximum stress is experienced. The time orientation of the bereaves is the immediate present. He is temporarily cut off from both his past and his future and can only deal with the present. This stage varies in length from a few hours to a month or even 6 months or more.

 


2. Recoil

When the initial shock and numbness of the impact phase begins to lift, the person experiences the first awareness of what has happened. Now the loss is felt most acutely and the bereaved feels restless, tense, and in turmoil. Now the first overt expression of emotion occurs. Anger, protest, restless irritability, irrational feelings, sometimes bitterness both toward others and at one's self, and guilt are feelings that are experienced. There is usually also a need to talk and ventilate. During this stage there will be acute periods of loneliness and often times a childlike attitude of dependency, wanting to be cared for and looked after. This is the time when there is an intense yearning and urge to recover the deceased. This manifests itself in many ways: preoccupation with thoughts of the deceased, a clear visual memory of the deceased, a sense of the presence of the deceased, calling and crying for the lost person, and even a conscious recognition of this urge to search for the deceased by going to his/her grave or places where he/she had been. Usually during this phase the bereaved will need to be with others and to have a stable, supporting environment. However, the initiative will usually have to be on the part of others. It is very easy to remain at this stage, to become fixated here, Furthermore this is a very crucial period and the response of other persons is of critical significance for the bereaved person's future.

The time orientation of the bereaved has now shifted to the past or immediate past. The length of this stage varies for one month to a year or longer.


3. Recovery

This phase of the grief response entails getting back to normal in so far as that is possible. The person begins to feel the stress is passed and has come to face the matters of everyday living in the new environment without the deceased. The permanence and fact of the loss are accepted, and the attempts to recover the deceased are given up. The bereaved now has to develop a new set of functioning roles which involves letting go of the past and the building of a new life.

Some of the tasks included in building this new life are as follows:

1. Learning to be alone.
2. Finding a meaningful social and emotional life.
3. Being the head of the household, breadwinner, both mother and father to the children and learning the role of the single parent.
4. Facing the issue or re-marriage.

Often times the bereaved will be in need of both vocational counseling and advice as to financial management. There may also be feelings of temporary anxiety, fatigue, and or depressive reactions.

The time orientation or perspective now includes the past, present and future. This phase may begin within three months to a year after the death, and last for the remainder of the bereaved person's life.


Back to Chapter Six Topic Index


3.  GRIEF INTERVENTIONS AND DEATH NOTIFICATIONS


THE PROCESS OF GRIEF (KUBLER-ROSS,1969)

Denial
Anger
Bargaining
Depression
Acceptance

GENERAL ELEMENTS OF EFFECTIVE GRIEF INTERVENTION

Importance of grief work
Ministry of presence
Variety of reactions

SPECIFIC ELEMENTS OF EFFECTIVE GRIEF INTERVENTION

Allow expression of feelings
Respond with empathy
Don't force yourself to be a theological "expert"
Prayer, if desired by griever(s)
Arrange for follow-up / referral

 


STRAIGHT TALK ABOUT GRIEF INTERVENTION

Last year my father killed himself with a handgun.

When you spoke of how "invasive" your presence seems to a family, I remembered wanting to strike the officer who barred my way into my father's room. I immediately hated him, and resented his presence. One of my sisters used language (to an officer) I'd never heard come out of her mouth before! We actually laughed about it later, but at the time, the violent feelings brought on by fear and shock were overwhelming!

Not long after, I saw one of the officers at a restaurant. It may have been purely coincidence, but at the moment of recognition, it seemed he, either out of respect for my privacy or his ( or in fear of my wrath!) moved to another area of the restaurant. I wanted to speak to him, but the lump in my throat prevented me from saying:

Thank you for being there.

Thank you for doing your job professionally, sensitively, and with obvious care and concern.

In that long wait for Homicide to arrive, and then do their job, thank you for behaving in a respectful manner.

Thank you for refraining from "small talk" with each other about sports, or cracking jokes to offset your discomfort and awkwardness in the face of our pain.

Thank you for your honesty and patience in answering questions again, and again, and again.

Thank you for your gentleness in handling my father's body. I noticed.

Thank you for pausing to let me touch the wrapped and covered remains of what I knew for a lifetime as flesh of my flesh - my father.

Thank you for cleaning up as much as you could in Dad's room. We could tell that you had made a real effort to make things as easy on us as possible.

Thank you for treating each of us with respect and concern.

Thank you for not avoiding eye contact with us.

Thank you for seeming to give us private moments as family members arrived, even though I knew you had to observe each one of us.

I remember the Homicide sergeant giving us his telephone number and offering to answer any ongoing questions. He respected my need for detailed answers, which others in my family didn't require. He was gentle and patient, and at the same time direct and painfully honest. He also told me clearly how to get a copy of the police report, how long it would take for the autopsy report to be prepared, and exactly what to expect and how to proceed.

As I anticipate the "year-anniversary" of my dad's suicide, I can look back and remember the support I have personally received.

 

 

DEATH NOTIFICATION: SOME RECOMMENDATIONS
By Hubert Looney and Jerry L. Winsor

Without a doubt death is a most unpleasant, yet ever-present, reality for law enforcement officers. Law enforcement is a high-stress occupation for a variety of reasons, and the ubiquitous necessity of dealing with situations surrounding pre-mature death are significant contributing factors to the occupational stress. "Frequently," writes Friedrich Wenz. "line of duty/crisis situations include incidents in which the office must face tragic duties." Such duties he notes:

"...Include situations like telling a mother of her child's death, having to take a dead person to the morgue, or having, to clean up a body after an accident. The police observe death frequently and in a variety of situations, and exposure to death of others must register deeply on the mind of the law officer."

Doubtless the term "death" to a law enforcement officer brings to mind much more than the subtle, yet pervasive, fear of his or her own physical vulnerability. Unfortunately, in our society, few officers are encouraged to discuss death rationally, let alone develop a philosophy useful in facing tragic situations that are job-related. The purpose of this article is to deal practically with one aspect of this law enforcement stressor - death notification.

 

SOCIAL SERVICE FUNCTION

Many police officers have found death notification to be the hardest thing that they have done. It falls into the department's responsibility when no one else is available to do it. Perhaps the hardest task in all of law enforcement is that of telling a father and mother that their young son or daughter has been killed. Officers are affected most by this kind of death.

Because of its social services nature, death notification training has taken a back burner to other police services. Police organizations traditionally structure their training to contain approximately 80% police-related material and 20% services or social service material. In actual practice, the work turns out to be 80% social service in nature and 20% police related. Communication activities with citizens comprise the bulk of the modern officer's time.

 

SUGGESTIONS

Some suggestions we believe are helpful in accomplishing the task of death notification. There are no easy answers to a difficult job. We offer following:

1. Never take death information over the police radio. If the radio operator starts to do this, ask him to stop. Have him/her call you on the telephone or vice versa.

2. Obtain as much information as possible: what, when, where, and sometimes if possible, how. Disregard the why of the incident, you should not get into that during the notification (a simple answer to why is "I don't know").

3. Before you break off contact with your source of information make sure you have positive identification of the victim. Nothing is more inept than to be making the notification and have the supposed victim walk into the room, call on the phone, or later contact the grief stricken party. They may be elated at the moment, but later their elation will turn into bitterness for you and your department because of the trauma that you have caused.

4. Operating patrol vehicle emergency lights and flashers is inappropriate if department rules permit, keep a low profile when you park in front of the residence.

5. Never, if possible, carry a personal item of the victim with you. Leave all those items at the hospital or morgue. A simple note pad with the name or description written down will suffice.

6. Try by all means to get inside the residence before you deliver the message. If a medical emergency develops behind a closed door, you'll never know about it.

7. Never make the notification by telephone; the consequences could be too great.

8. Never go alone--a friend (of the victim), preferably a relative, can help break the news more easily. If your agency is fortunate to have an auxiliary chaplain available,, he or she may be of great help. Most people would rather hear the news from a relative than a policeman. Failing this, one officer in civilian clothes can be a help. Where possible, a female and male team of officers may function well in this capacity.

9. Try to asses the stability of the individual to whom the news must be broken. If in the officer's judgment, the person may be so shocked by the death notice that hospital treatment would be required, the officer should attempt to make some arrangement (i.e., one officer recalled an accident in which the child of a pregnant mother had just been killed. The mother was taken to the hospital on the pretext of making an identification of the child, so that the hospital personnel would be able to treat her when she reacted to the news.)

10. Relate the message straight out using a direct approach; i.e., "Your son had been involved in an accident. He has been killed." There is no way to soften the initial blow of this reality. Avoid jargon such as "your daughter was injured fatally." The message should be very clear at first hearing leaving no room for false hope as the word "injured" may allow.

11. If the family breaks down, you try to console the best you can. Almost any behavior is possible---anger, denial, questions, etc.- Physical violence is always a possibility. This possibility underscores the need for two person going on such calls.

12. Beware of the variety of reactions---some pass out, some become hysterical. Assess the situation. Read the non-verbal cues and try to anticipate needs e.g., a place to sit...some water. A "quick read" of the living environment may give you valuable hints to possible reactions.

13. If the person is alone, ask if there is a friend they could call or you could call that could come and be with them for a while. Men are just as emotional sometimes as women and ;need the comfort of an understanding friend. If at all possible, stay until someone arrives.

14. It is usually better to be empathetic than sympathetic. The grieving person usually does not want sympathy from strangers. Feeling sorry for, is not as effective as feeling with the person. Some shared feelings may be most meaningful. In no case should an officer's behavior give cause for false hope.

15. Be specific but tactful and try to avoid police jargon when explaining the situation; i.e., words like "fatality," "vehicular flow." and codes 11-44," etc. are out of place. Use plain language. Do not obscure the message and do not pass the buck. Center on meeting immediate needs. Do not get involved in a discussion of possible future actions.

16. Be prepared to spend a few minutes there. Don't drop the bomb and turn and walk out. Try to access the situation. The family may have a question or two as soon as the initial shock can be handled. If questioned, be as ho nest about the situation as you can. They will let you know verbally or emotionally that they are handling it and will most of the time cue you in some way that they wish to be alone.

 

CONCLUSION

This is by no means a complete guide on the subject. Every call will be different. We believe that the subject of death notification needs to be included in academy training and in-service workshops, and even then it will still be a difficult job.

 

 

I'M SORRY TO INFORM YOU . . .
By Randy Sly


"I don't want to be here," the officer mutters to himself. he stands under the porch light, waiting for the door to open, knowing the news he has will drastically alter the world of those inside.

As the door swings open, a women stands apprehensively holding her toddler close. The officer swallows hard, for Daddy won't be coming home tonight. Or ever...

Of all the tasks in police work, death notification ranks as one of the most difficult.

Many police departments enlist the help of volunteer chaplains as a part of their notification procedures. Most police chaplains, members of the local clergy, have training or expertise that orients them toward the "people side" of problems. They can form a strong alliance with the assigned officer to become a complementary team who can present the news of a death, deal with the necessary details that need to be exchanged, and still provide person-centered support in the process.

A request for a death notification is a simple, standardized procedure in most departments. Usually the procedure is to order an officer or other representative to make contact with the party and inform them of the situation. Notices are received at all times of the day or night and for a variety of reasons. However, what seems to be a routine assignment may end up more ;complicated when the officer arrives at the person's residence. The outcome of the assignment may affect the party's ability to deal with the news effectively. This emotional jeopardy may seem overstated, yet the first moments of any tragedy stay with individuals for a long time. In addition, wrongful handling can also provide an opportunity for a negative experience in community relations. The following 10 action points are offered in order to maximize the ability of a department to carry out the task of notification effectively and efficiently.

 

1. ASSIGN A CHAPLAIN OR CLERGY PERSON WITH THE OFFICER.

While many departments use chaplains, they are oftentimes overlooked in their usefulness. A hectic shift might cause a supervisor to just give the assignment to a patrol officer. Contacting the chaplain is seen as an option rather than a necessity and is viewed as a nuisance when everyone is busy.

Utilizing a chaplain frees police officers, many of whom are fully capable to handle such a task, but who may be unprepared, untrained, or unable to handle what can follow. Responses to such news can be as varied as the people being notified. The problem is not so much one of carrying out the task, but in doing it well.

Hospital chaplains are taught to understand the "ministry of presence," meaning that they provide a needed function to an individual just by being there. They are a human extension of care and concern. The same principle holds true for the area of death notification, where the police chaplain of local clergyman becomes the "presence of compassion" during an extremely stressful time. This does not discredit the officer as a compassionate person, but softens the impact made by the image of someone in uniform.

 

2. VERIFY THAT CORRECT INFORMATION HAS BEEN RECEIVED.

Very early one morning, an officer and I knocked on a door and proceeded to convey the information as it had been communicated to the department. The woman became extremely distraught because we told her that her father had died, but gave the name of her brother. She wasn't sure who was dead and who was alive. It took several phone calls to clear everything up.

Informing a person of ate death of someone close is serious enough without confusion. While difficult to guarantee absolute accuracy, all those assigned to the task, chaplain, officer, supervisor, and dispatcher, should double-check all information for notification. This includes the name of the deceased, the name of the person to be notified, their addresses, the relationship to the deceased, and as much detail as possible surrounding the death. A follow-up call to the reporting agency may be necessary to re-confirm any ambiguous information.

 

3. TAKE SEPARATE VEHICLES.

When a chaplain and officer team make a notification call, each should travel in their own vehicle. This allows the chaplain to remain with the person while freeing the officer to return to patrol, etc. This is advantageous in most cases, except out-of-town calls, unusual circumstances or more dangerous settings.

When the team arrives at the location, they have no idea what they will encounter. Sometimes the person will become overly distraught and in need of longer term attention. Other times, he or she will become so disoriented that someone will need to make phone calls to bring friends or family for support. By arriving separately, each is able to stay as long as necessary without encumbering the officer in the process.

 

4. PLAN THE NOTIFICATION PROCEDURE.

The process should be outlined before the team leaves the station: who is going to do the talking, what is going to be said, how much can be said, etc. A death notification is usually better handled by the chaplain rather than the officer. The reason has less to do with ability than it does with position. A chaplain is traditionally viewed as the one charged with such responsibilities. He brings a sense of comfort into the process. I recommend that officers initiate contact with the person. The conversation might go something like this: "Good evening, are you Joe Taylor? I'm Officer Smith and this is Chaplain Jones from the police department. May we come in?"

The chaplain takes the lead in getting the people comfortable and giving the news. By proceeding this way, the officer provides authority and endorsement for the chaplain to do his work. He can add details and provide whatever support the chaplain may need.

This cooperative effort works to the advantage of the person being informed. One notification involved the tragic death of a little boy. I accompanied a female officer to notify his mother. After the news was given, the woman melted into the arms of the officer who provided exceptional emotional support at a critical time. We had already decided, before entering, that this would be the best way to handle the situation.

Chaplains, especially if the are new or infrequently used might not initiate the planning needed. As a volunteer, they feel somewhat awkward since this is not their domain. Officers should feel free to offer this opportunity to them, and invite them to take the lead.

 

5. THE TEAM'S PRESENCE ALREADY INDICATES SOMETHING HAS HAPPENED.

Those bearing bad news are tempted to hedge, to begin with small talk and avoid the real reason. The family would be better served by telling them up front what happened. The presence of an officer and chaplain has already alerted them of a problem. They have braced themselves and are not interested in idle chatter.

The actual notification procedure is quite simple. First establish the relationship between the party and the deceased. Next, inform the of the death, slowly and carefully giving any details available. Then, calmly answer any questions they may have. If you don't know the answer, assure them that one may be found.

 

6. TRY TO GET PEOPLE INTO A COMFORTABLE SETTING.

We already mentioned giving the information first thing, but a moment will be needed to move into the privacy of the home (or other more secure setting). This will place the person to be in a better position to receive bad news. Since you have no idea how the party will react, ask to go inside rather than give the notification on the doorstep.

Ask the person(s) to be seated, or, at least, find a comfortable position. If other family members are present, they will naturally move to a supportive position, so give them a moment to do that.

When the notification must be made at a place of business, the person's supervisor should be contacted first and asked for assistance in getting the person to a place of privacy. Request that the supervisor remain with the person and have another close friend at the business (if possible) be present as well.

 

7. BE SENSITIVE TO SURROUNDINGS.

This point is closely related to the previous one. Notifying someone of a death can result in extreme emotional behavior. Often, we forget that there may be little children around or others nearby who may not understand what is taking place. When approaching the location, try to determine the dynamics that must be taken into account.

I once had to notify a mother that her son had been killed in a school bus accident. Upon arrival in the dentist's office where she worked, we found she was the receptionist. We had no opportunity to talk to the supervisor first. We asked the woman to take us to a private room and proceeded to share the news. The officer remained with the woman, while I sought out the woman's supervisor - one of the dentist. He was able to come in and provide additional comfort and support. he also had to deal with another sensitive problem--the woman's cries were very disquieting to the waiting patients.

 

8. PROVIDE A POLICE DEPARTMENT CONTACT.

Many questions arise in the mind of the person after the officer leaves. Be sure to leave a card with the name and number of the officer, the chaplain, or someone with the police department (victim assistance, community relations, etc.) who can be of further assistance.

Also, people are often in shock after receiving the news of a death and can confuse the facts. This phone number will give them an opportunity to clarify any blurred information and lesson the possibility of a misunderstanding, which later could be blamed on the department.

 

9. INITIATE A FOLLOW-UP.

Some people might feel abandoned after the initial notification. Some want clarification, others are unsure how they need to respond, still others didn't know what arrangements are necessary. The work of a chaplain can continue until such time as the party has made contact with their own clergyman, counselor, or other appropriate person who can go through the details with them.

One of my hardest assignments involved the murder of a teenager. After notifying his parents, I checked back with them later and even met with the father at the funeral home when he identified the body. Through these contacts, I was able to put the family in touch with the correct people at the police department, victim assistance, etc.

 

10. ASK IF THERE IS A RELATIVE, FRIEND, OR CLERGY PERSON THE WOULD LIKE TO HAVE CONTACTED.

The officer and/or chaplain provides the first line of support. In order for that care to continue, inquire if there is anyone you can contact for them, thus removing the burden of making a call at a very emotional time. Those I have called really appreciated the call. I then try to remain there until they arrive.

No one likes to deliver death notices, yet departments are regularly called upon to render this service. Communicating this information is a common occurrence, but it must not be treated commonly. The impact of notification can make a big difference in the ability of the informed party to handle the news appropriately. By implementing a person-centered and person-sensitive approach to death notification, departments can serve their communities in a vital and meaningful way.

You may not see your work in this area praised by the press but, be assured, it is acknowledged and appreciated by the people you touch.

Rev. Randy Sly
Riley County Police Department
Manhattan, KS.

 

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4.   PROTECT YOURSELF FROM THE DEAD
Harold Elliott

Police officers are constantly being taught street survival, and most of us shudder at the behavior of an unthinking officer who fails to protect himself. There is the ongoing discussion of how large a weapon should be carried and how many spare bullets should be at the officer's immediate disposal. All this is important, but no less important is that the dead will kill you too. it just takes the dead a bit longer to do the job. The living will shoot you, knife you, club you, or run over you. The dead will blow your mind apart and vandalize your emotions until you become a shell of a human being. These are the trappings of death.

Ask any officer to describe the first death scene he worked and he will remember almost every detail. He can recall the position of the body, facial expression, open or closed eyes, location of wounds, and type of clothing worn. No matter how many years ago, he'll still remember. of all the things we forget, it never seems to be a death scene. That being the case, it only stands to reason that an accumulation of such sights eventually takes its toll on an officer, unless he safeguards himself.

There is a social norm among many police officers which says, "Thou shalt have no  unexplained reactions to the things which thou hast seen" So, they spend a bulk of their lives trying to convince themselves and others that they are totally unaffected by dealing with the dead.

Lectures on the subject can help, but they don't eliminate the impact of direct, prolonged experience; that can be a killer. I remember an old man who used to stroll the streets of my hometown with a sad face, bland personality, and a walk that resembled a funeral march. I never knew his name, but my mother always referred to him as "that old man who's dead and doesn't know it." The dead may not physically kill you but they can sap your emotional resourcefulness until you are about as useful as they.

How you receive death will make a considerable difference in the effect a corpse will have on you:

Those who equate human and animal death will likely become cynical, and persuade themselves that no scene is too bloody for them to view and remain unaffected. This illusion is generally exposed when the officer loses someone he loves.

Those who view death as the doorway into eternity will normally feel a sense of tender emotion. they may feel stress because of man's inhumanity to man or man's inhumanity to himself.

The job demands that an officer view death scenes. However, it does not demand that each officer view them in the same manner. Whenever I see a body, regardless of the circumstances surrounding the death, I view it as a wax figure in a museum. Some officers see the dead as mannequins. Others may view them as evidence in the overall investigation. Still another may see the victim as only an object that once was alive and is now only a shell. Whatever image one may concoct, the result is the same: dehumanization of the victim. This isn't wrong, in fact, it is a natural part of our built-in survival kit.

Some officers would rather not show their real emotions at a death scene. Certain feelings are simply natural to human beings, and should not be construed as signs of weakness. For example, when alone in a room with a body, experiencing an eerie feeling; if the victim is child, female, or helpless individual, feeling intense grief; if sexual deviation is involved, feeling repulsion.

Officers also feel angry if death and mutilation are related to drugs or alcohol; if the victim was viewed by a family member, especially children, the officer may be moved to sympathy; and he will feel shock, the same as any other individual, if the victim is known to him personally.

Though most officers will contain themselves at the scene, if the victim reminds him of a loved one, he will probably cry when alone. It isn't uncommon for sickness to affect those who must work an exceedingly violent scene. Nausea is common if the odor is overpowering and the body of the victim is decomposed.

The dead person troubles us, disturbs our peace, gives us the creeps, stirs our fears, and gives us nightmares. Even the policeman's badge isn't thick enough to prevent it, and there isn't enough authority in the book to ward it off.

But we aren't defenseless. Take a look at some safeguards against being overcome:

Talk it out. Talk is good therapy. Some officers choose to talk to other officers. However, there is always the fear of appearing weak in the eyes of a comrade if true emotions are revealed. In departments where a chaplain is present, the officer may feel a freedom to bare his soul with the assurance of strict confidentiality. The officer who shares with his spouse is utilizing a good source of understanding. Every blood and guts detail need not be divulged to relate the story and get relief.

Crying is OK. Obviously there is a time and place for everything, but it should not be forgotten that crying makes us no less professional. Tears are terrific for washing away hurt. Some officers have wept at the scene and there is certainly no reason for apology, but whenever possible the officer will normally do this when alone.

Humor. Although humor should never be crude, and great precaution must be taken to avoid its use in the presence of family members or persons outside the police department, it should be recognized that well-placed humor is great release. It isn't necessarily disrespectful to use some humor at a death scene. Humor is a real salvation to those who use it wisely and at the appropriate place and time.

Take a break. Though it is necessary to view the victim, photograph the entire scene, and sometimes handle the body, it isn't necessary to stare at it over a prolonged period of time without a break. Take time out to regroup your thoughts, get a breath of fresh air, and let your mind remove itself from the ugly sight of death.

Be prepared for, and understand something about, post-traumatic stress disorders. Two types of disorders are prevalent. First, the acute disorder has symptoms which occur immediately after or sometime during the event. They are things such as frequent urination, or an uncontrollable desire to just break away and run form it all. After a particularly difficult experience with a tragic death situation one officer said to me, "I hate this fob, I just want to get out of the whole mess." It had only been a few days before that he had sat in my office and related how much he loved police work.

Second, the delayed disorders are those which may occur two days, two weeks, or two years after an event or series of events. They include things such as sleep disorders, flashbacks, isolation and depression. I know one officer, who after working homicide in a major city, requested a transfer to any division in the department which didn't deal with death. Death had stacked up on him until he felt he could not stand it if he had to see another body. The number of gruesome death scenes the officer has experienced in a short time will obviously make him more prone toward post-traumatic stress disorders, especially the inexperienced officer.

The officer who is honest with himself will accept the fact that he is only human, and it is ;natural for humans to hurt at the sight of needless death, injury and mutilation. Wise is the officer who takes off his superman suit, and allows himself to be just plain Clark Kent.

Officers can't avoid blood in the alley and brains on the ceiling, but they can learn to deal with it in a manner which will preserve their own mental and physical health. If professional help is needed, get it. It is a weak person who thinks of himself as too strong to need support.

How strongly a person reacts to a situation depends on that person as an individual. The officer who continually holds in painful emotions or does not react at all, is a likely candidate for severe emotional problems. The wise officer takes the precaution of watching the living, avoiding needless danger, and not living in a mental graveyard.

Remember, the living can kill you physically, while the dead can kill you emotionally.

This article originally appeared in the April 1985 issue of Police Product News. Chaplain Elliott is full-time chaplain of the Arlington (TX) Pd.


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5.   HANDLING DIFFICULT GRIEF CRISES
Earl Grollman

Each death is different. When a parent dies, one loses the past. When a spouse dies, one loses the present. When a child dies, one loses the future. Even though grief is a common human experience, it is as individual as fingerprints-it shows itself in widely differing ways.

The following are some guidelines for the sorts of death experience that are encountered infrequently-where information may be scant. To be effective as clergy persons, we must be aware of al kinds of loss, the frequent as well as the less common incidences of death: loss of a newborn, sudden infant death, a death that was unanticipated, suicide, and the special feelings of the clergy person-so well acquainted with grief-when a loved one of his own has died. There are sources of help to assist the bereaved in coping with grief and loneliness and provide for continuing reassurance and understanding. People differ more widely in their reactions to death than they do to any other human experience. There is no magical procedure that will comfort all people, either at the time of death or during the period that follows.

The problem is not that the clergy person will not always succeed in grief counseling. The tragedy is that the clergy person may not be well-informed and at least attempt to do his or her best to help people in times of crisis. As Mark Twain said: "It's not what people know that gets them into trouble; but it's what they know that isn't so."

People differ more widely in their reaction to death than they do to any other human experience.

While bereavement and grief are the most universal of all human experience and the most human - they are also the most painful. Information is not adequate if it remains with the clergy person alone. Those insights must be shared in a non-threatening way to help make the agonizing period less stressful and less frightening. Then survivors will not be caught unaware and unprepared for their often bizarre but rarely spoken of sensations, thoughts, and behavioral changes. They need to understand that these changes are normal in the face of the very unusual and traumatic death in their family. And don't forget: just being with the bereaved is often more important than what you say.

 


LIVING WITH NEWBORN DEATH

How often do newborns die?

Within the first 28 days of life, approximately 35,000 newborn infants die in this country every year. In addition, 33,000 fetal deaths or stillbirths occur after the 20th week of pregnancy. Taken together, these 68.000 deaths add up to one death every seven minutes. The cold statistic translates into an enormous collection of human suffering for surviving parents, siblings, and the greater circle of family and friends. A child's death is no longer in the ordinary order of events. we expect older people to die-but not young babies. It doesn't seem fair before they have had a chance to live.

 

What about stillbirths?

Stillbirths occur in about one in 80 deliveries. After the birth and death, there is usually a conspiracy of silence. Parents are rarely encouraged to see and touch the dead body. Frequently, the baby is not given a name and the mother is quickly discharged - as if nothing had occurred. Rituals and rite of passage are seldom offered. The funeral (if there is one) is open private, without the mother and sometimes without the father being present. Most health professionals do little or no follow-up. Still birth is a non-event. It is as if the mother never carried her child. As if the father had no hopes and aspirations. There is no communication about the misery, the guilt, the shame, the failure.

 

What can the clergy person do in this tragic climate?

First, help the family to face reality. The child is dead. And no matter how brief the life, there are deep emotional attachments. The parents desperately need to cope and respond to their loss. How hard it is to grieve the death of a dream! Help the family make their baby-and their loss-more real with something tangible to hold on to-a hospital bracelet, a lock of hair, photographs, birth and death notices. These reminders dramatize the fact that a profound event indeed touched their lives, ever so swiftly. Let parents mourn a reality, not an illusion.

If the parents desire, let them view and touch their dead child. Too often, the infant is rushed from the mother to a special (care) unit, never to be seen again. Many parents who have had the opportunity to hold their child have remarked how therapeutic this touching had been. "Now I know my child lived. I an better able to accept that he died." This is true even when the infant is physically deformed. Beauty is in the eyes of the beholder.

As options are offered to the family, describe in advance the child's appearance, explain that the body is cold. We may offer our support by saying: "If you want, I'll stay with you. tell me what's best for you." Understand that funerals are not solely for people who have lived a long while. The importance of funeral rituals for infant deaths has been emphasized by Dr. D. Gary Benfield, Director of the Regional Neonatal Intensive Care Unit, Children's Hospital Medical Center of Akron and Jane A. Nichols, Bereavement Consultant. They afford both closure and relief.

 

 SUDDEN INFANT DEATH SYNDROME (CRIB DEATH)

Is there a typical history?

There is no classical case. Both rich and poor, white, black, and yellow are the victims. SIDS is not preventable no predictable. The infant is usually put to bed after a feeding without any suspicion that something is out of the ordinary. Sometime later, a few minutes, several hours or the following morning, whenever the parents next check on the baby, the infant is found lifeless. There is no outcry, no struggle. The infant may be lying face up or face down in the crib. occasionally, there is a pinkish froth coming form the hose, or a spot of blood on the bed. The face and remainder of the body may bear bluish-purple discolorations which may appear to be bruises. These are normal post-mortem changes and should not be mistaken for injuries.

"What did I do wrong?" "Was it my fault?" "Why didn't I detect that there was something wrong with my child?"

Lola Redford, wife of actor Robert Redford, tells how guilty they both felt after their first born died in his crib. "I had this notion that when you come from strong Mormon stock, you just don't have children who die." She also spoke of not being willing to hire a baby-sitter for her two subsequent children, of spending all her energy "guarding" them. For almost nine years, I gave those children my undivided 100% neurotic attention. I was so afraid they would die."

Some parents believe that they accidentally killed their child by allowing the infant to suffocate in the bedclothes or choke on regurgitated milk. There is no basis to believe this is true.

 

How about the grandparents?

Grandparents are often unaware of the mysterious, sudden, unexpected death called SIDS. They may believe that the tragedy could have been averted by some action of their children such as a more proper diet or closer observation during a virus. Worst of all, they may believe the baby died because of some omission or neglect. Grand parents need continual reassurance that the cause of the disease remains unknown and that the parents did not cause nor could they have prevented this crashing, bitter disappointment.

Grandparents often take charge of the funeral arrangements. After all, they are older and more experienced in the sad preparations for death. The clergy person might of well to say: "I know that you, too, are going through an ordeal. But you know of course, that your children are the ones who feel the loss most keenly. Perhaps it would be better for your children to come to their own decisions about what is best for them!"

 

What can the clergy person do to help the family?

Tell them that SIDS occurs in apparently healthy, normal, thriving babies who have received the most skillful and loving care. The death does not reflect in any way on the ability of the parents to care for their children SIDS is not suffocation or pneumonia. They did nothing to cause death

 

Should there be an autopsy?

Usually the examination reveals no disease sufficient to account for death. In approximately fifteen percent of the cases, however, post-mortem examination exposes a previously unsuspected abnormality or rapidly fatal infectious disease. This is one of the reasons autopsy on these infants is so important.

 

Did my child suffer?

Explain to the family that evidence underscores the point that the infant was not in pain. In most cases, death is sudden, almost instantaneous. There are examples when the child "just stopped breathing" in the arms of the parent. The adults report a sense of peacefulness and quietude.

 

 

DEATH BY SUICIDE

What is the incidence of suicide?

Once every minute, someone attempts to kill himself or herself with conscious intent. Sixty or seventy times a day these attempts succeed. In America, the problem has reached somewhere between twenty-two and twenty-five thousand annually or one suicide every twenty-six minutes.

 

Who would dare destroy something so precious as life?

Almost everybody at one time or another contemplates suicide. Death is one of the choices open to human beings. Suicide has been known in all times and committed by all manner of people, from Saul, Sappho, and Seneca to Virginia Woolf, James Forrestall, Marilyn Monroe, and Ernest Hemingway. Every person is a potential suicide.

 

How is suicide different from other death?

Of course, natural death has its share of emotional overtones: Loneliness, disbelief, heartache, and torment. With self-inflicted death, the emotions are intensified to unbelievable and unbearable proportions. Those left behind experience not only pain of separation but aggravated feelings of guilt, shame, and self-blame.

The act of self-destruction raises the obvious questions, "Why?" and "What could I have done to prevent it?" Anxious and grief-stricken, the survivors ask, "How can I face my friends? What will they think of me?" Death by suicide is the greatest of all affronts to those who remain. Special counseling skills are needed to cope with the runaway emotions of the bereaved. Suicide stigmatizes not only the victim but the survivors as well.

 

As a clergy person, can I suggest a public funeral? Wouldn't this run contrary to religious beliefs?

Judaism affirms the sanctity of life. Suicide is taboo. The custom arose of burying the suicide outside of the cemetery proper as a token disgrace.

 

Shouldn't the funeral be private?

It is understandable that when the survivors hear the shocking news their first impulse is to hold the funeral as quickly as possible. After all, there is an aura of shame and dishonor. As a result, a private service may be contemplated for the immediate family only.

However, no matter how great the humiliation the relatives cannot hide from the bitter truth. No one can run away form pain. A private funeral seems to say that because the family is unable to bear the disgrace they want to keep it "secret." The mourners overlook one important fact: When given the opportunity, friends can be of inestimable value. The funeral, where no one is invited but all may attend, affords a sharing occasion for supportive love at a time when it is so desperately needed. One person is no person. The solitary heart must throb with the caring heart of others.

Many people who themselves have experienced the death of a loved one have developed tremendous gifts of insight. They understand the value of sharing. They may help the bereaved to reach out of their isolation to an important support system. Fellow sufferers often become second families to each other. Some helpful organizations include:

Candelighters, 123 c Street, Southeast, Washington, D.C. 20003. This is an international organization of parents whose children have cancer or died form this disease.

Compassionate Friends, P.O. Box 1347, Oak Brook, Illinois 60521. A support group for bereaved parents who "need not walk alone."

Sudden Infant Death Syndrome Foundation, 8240 Professional Place, Landover, MD 20785. The group intervenes on behalf of stricken parents of SIDS or "crib death" with professional counseling services for adults and children.

Widowed-to-Widowed Program. Begun at the Laboratory of Community Psychiatry, Harvard Medical School, 58 Feinwood Rd., Massachusetts 02115. There are hundreds of these organizations throughout the United States. They bring together the widow and widower in fellowship and help them find a new way of life.

Parents without Partners, 7910 Woodmont Avenue, Washington, D.C. 20014. A nonsectarian organization with a membership of a hundred thousand in over 700 chapters concerned with the welfare of single parents and their children. it assures them that they are not alone. Their motto is "Sharing by Caring." If such an organization does not exist in your area, the clergy person could be instrumental in its formation.

 

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6.   APNEA, SUDDEN INFANT DEATH SYNDROME, AND HOME MONITORS:
PSYCHO-SOCIAL ISSUES
Judy A. Duncan, Ma., MSW.

Since the Sudden Infant Death Syndrome (SIDS) is the most common cause of death during the first year of life in both term and premature infants, the use of home monitoring is rapidly increasing. The psycho-social issues surrounding apnea and SIDS and the impact of home monitoring on the family are discussed.

The most common cause of death in normal infants and graduates of Neonatal Intensive Care units during the first year of life is the Sudden Infant Death Syndrome (SIDS). One of the fastest growing industries in the health care field is providing home monitoring. Subsequent siblings of SIDS victims are at increased risk for SIDS themselves, or are they? What should we do for the child with an apparent life-threatening event? How does all of this relate and how does it apply to perinatal health professionals?

 

SUDDEN INFANT DEATH SYNDROME

Is not possible to discuss home monitoring and apnea without talking about SIDS. They are regularly linked in the minds of the general public and the health care community as well. It is important to clarify that the relationship of SIDS to apnea is only circumstantial. There is also no conclusive evidence demonstrating that monitors can prevent SIDS.

By definition, SIDS is "the sudden death of any infant that is unexpected by history and in which a thorough postmortem exam fails to demonstrate an adequate cause of death." Therefore, SIDS can only be declared a cause of death after an autopsy. What the pathologist is really saying is that he does not know why the child died.

SIDS is the number one cause of death for all infants between the ages of 1 month and 1 year. The rate is about 2/1000 in the United States and kills about 6000 babies a year. The peak ages for death are from 2 to 4 months, with a sharp decline after 6 months of age. More deaths occur in the winter months. We do not know why there is an age or seasonal variation.

The parent needs to know that SIDS cannot be predicted. The parents are blameless. The first real indication of increased risk for SIDS comes when the parents find the baby already dead. The fear of SIDS exists for all families. We need to be extremely cautious about adding to that fear by exaggerating the incidence of SIDS. We also need to be cautious about leading families to believe that we know what SIDS is and how to prevent it. We clearly do not.

 

ISSUES of SIDS in the PREMATURE INFANT

In some ways SIDS following a premature birth causes even more anguish for the parents, and certainly hospital staff, than the death of a normal child. This is due to the fact that a premature baby may struggle to survive for weeks and sometimes for months, finally leaving the hospital and going home. For the perinatal health professional there has been more time to build a relationship with the family during the premature baby's hospitalization. The infant's death comes as a cruel blow to all who have provided care. Sometimes hospital staff members question their clinical judgments regarding discharge. They wonder if they missed something, or left something undone. Sometimes the family places blame on hospital staff. More often, though they share the tragedy.

Prior to discharging a premature infant, the basic work with the family may center on the resolution of acute distress and fear. All families need support and information about the child's condition and likely clinical course. They need the opportunity to explore their feelings about grieving for the healthy, full-term baby they expected, but did not get, and to learn to accept and appreciate the baby they really have.

Throughout the infant's hospitalization, the time is available to assess the family member's strengths, weaknesses, and interpersonal styles, as individuals and as a unit. We can help the family use or build networks. We can assess their ability to problem solve by watching which coping mechanisms they choose, and how well they use them.

Particular areas need special attention. By the time discharge draws near, the parents have usually become familiar with monitors and may be uncomfortable about going home without one. The majority of infants who have not had significant apnea or bradycardia for the week prior to discharge are not in need of home monitors. Infants must be carefully selected for monitoring and the advantages and disadvantages of this option clearly delineated. Once decided, staff should teach the family how to use the home equipment while in the hospital and use it for the remainder of the infant's stay. This plan helps establish an easier transition from hospital to home. It also allows the staff to tailor the learning process to the individual family's needs and gives the family a chance to practice in a safe environment. It also enables the hospital staff to reinforce the concept of competency of the parents as the primary caregivers. It is vital that the apnea program coordinator and nurse work as a team. It is also important that the parents become part of the team caring for the infant and responsibility for the child's well-being can be shifted gradually form staff to parents. Apneic events can be simulated so that parents gain additional experience with problem solving.

 

SIDS and the SUBSEQUENT PREGNANCY

The process of building a relationship with the family following a SIDS death can begin during the subsequent pregnancy, sometimes even during the period between the SIDS death and the next pregnancy. The sooner the process begins the better. The pregnancy following a SIDS death primarily will deal with two basic issues, the SIDS death and safeguarding the expected child. The first step is to confirm that the baby died from SIDS by reviewing the autopsy. We have found several cases where the previous sibling had not died from SIDS. Revealing this to a family and helping then deal with such information requires sensitivity and time. The second step in the counseling process is to determine what needs the family has. There is often much unfinished business related to the grief process, especially if the child has recently died. For some parents this is the first time they have ever talked about the death of their child and the impact of that death on them separately, as a couple, and as a family. It may also be the first time the parents have openly discussed their feelings, fears, and sense of loss with each other. I feel strongly that the initial session should be with both parents. A separate session can include siblings, grandparents, and other as appropriate.

Sessions can be done jointly by a nurse or a worker, and the physician. Families are more incline to believe the facts about SIDS from a physician. They usually direct medical questions to him or her. It is helpful to have a health team composed of one male and one female interview a couple to decrease issues of power, control, and transference, and enhance modeling and support. Any team member can provide legitimacy and offer generalized statements about grief reactions or SIDS misconceptions.

It is important to assess how other siblings in the family (if any) are dealing with their own sense of loss and their reactions to the subsequent child. Parents may need encouragement or reinforcement to approach such topics with their children. They also may need education about what is age appropriate. Parents and children alike may have been trying to protect one another by not sharing feelings of grief, anger, fear and guilt.

Equally important as the meaning of the loss is the meaning and place of the new child in the family. Is the child thought of as replacement for the dead infant? Or is the child thought of as a child in his or her own right?

Families may have the idea that the subsequent sibling is somehow sick or different that other newborn infants. Parents may experience strong tendencies to be overprotective. Others may find it difficult to approach the baby and begin the process of bonding and attachment. The vast majority of families can successfully accomplish the task of incorporating the new infant into their family structure in constructive ways. What they need is information and support over time. Meeting those needs is certainly not new to perinatal health professionals.

The family concerns for safeguarding the new infant present themselves in a wide variety of ways. Some families will not leave the hospital without a monitor; others will not use the monitor under any circumstances. Some wait to decide until the child is one month old, and some when the new baby reaches the age at which the previous child died. The decision to monitor or not belongs to the family.

Currently there is no testing available, whether simple impedance or full scale sleep studies, that can identify infants at risk for SIDS. Indeed, Southall's prospective study of over 9000 infants demonstrated that two channel impedance recordings were not predictive. Finally, parents and health care professionals need to be clear that monitors cannot guarantee that an infant will not die from SIDS.

The perinatal staff need to be sensitive to parental fears and anxieties. The usual nursery, postpartum and visitation arrangements may not be appropriate or adequate for these families. Mothers may be afraid to have rooming-in, or afraid to have the baby out of sight. Fathers may need to have longer and easier access to mothers and babies. Older siblings may need to actually see and touch the new baby. Mothers may have problems with breast feeding as a result of tension. Infants might have to stay in the nursery for observation and testing. Some may have to be transferred to hospitals equipped for such testing.

There is a special category of SIDS sibling, when one infant of a multiple birth dies from crib death. The survivor is at increased risk. Most programs will then automatically evaluate and monitor the survivor. The impact of the death is compounded by the problems associated with home monitoring. These families need especially intense and prolonged support.

 

INFANTS PRESENTING THROUGH EMERGENCY DEPARTMENTS

Parents are routinely seen in emergency departments with infants who have stopped breathing, turned blue or are limp or unresponsive. All of these complaints need to be taken seriously. If the infant arrives in poor condition, or if paramedic reports confirm the parent's story, then the child is seen and evaluated, even admitted for observation or workup. If the infant arrives in good condition with nothing abnormal on exam and there is no corroboration of the event, many facilities send the family home. Most parents get a clear message that they overreacted.

It may be that the infant experienced "normal" (very brief) apnea, or a physiologic event during sleep. Perhaps the child choked on secretions and could have spontaneously resolved the spell with time. Providing the parents with these explanations for physiologic apnea is a component of quality care. However, the worst scenario would be to send the family home because the baby looked fine, only to have the child return dead because of an undetected etiology.

The burden of proof to document the etiology of the spells resets with the medical staff. The reported event should not be taken lightly regardless of the child's apparent good condition.

If the parents work and the child is brought in by a caregiver, or if one parent saw the episode and the other did not, a more complex situation exists. Those who did not see the episode may not believe it really happened, or that it was a severe as reported. Or there may be anger and blame directed toward the caregiver for not really watching the baby or not responding in an adequate manner to the medical emergency. At the same time the caregiver may be feeling totally responsible for the event and need support for the quality of care he or she provided.

Each family member or caregiver will assign meaning and significance to the event. Most people equate any cessation of breathing, whether awake or asleep, with crib death in the making. Most people fear that there would have been brain damage or death if then had not intervened. Most will still have questions and fears about the possibility of brain damage. Most believe that the spells will recur.

It is important to know if this is the child's first episode, a repeat episode or an episode that has happened during home monitoring. The concerns of the parents may vary. if it is one of many episodes, the family may feel the child is not making progress. They may be angry with the medical staff for not identifying and better managing the child's condition. They may be resigned and feel defeated in their efforts to care for their child, or they may be relieved to have the child hospitalized and the burden of care removed from them, at least for a while. They may feel vindicated with a repeat episode when the initial episode was not taken seriously.

One of the most frightening things we can do to a family is to label these episodes as "near-miss SIDS" or an "aborted crib death." Can you imagine what you would think if you were the parent? You would fear or expect a real crib death are some future time. What does that notion do to feelings of security, family structure, and the continuation of attachment to the infant?

 

HOME MONITORING: IMPACT ON FAMILIES

It is not possible to introduce the element of home monitoring in to a family without creating change and the need to accommodate. Not all the changes are negative, not all are positive, but all families change.

There is always the possibility that the monitored child will be seen as ill or different from other newborns or other children in the family. At times the issue of home monitoring is seen as the cause of problems that actually predate the monitor and the child.

The basic explanation for many of the medical problems that result in home monitoring relates to developmental tasks the child must accomplish. Seen in this way, most families can begin to see their child as more normal that sick. This is a key concern for families and has to be addressed. Most often the social worker is the first to appreciate this.

Child abuse potentials exist for parents of monitored children just as they do far any et of parents. There are high levels of fear, frustration, anger, and isolation. Parents may be overwhelmed by the incorporation of the child into the family unit, let alone a child attached to a monitor. Assessing levels of parental expectations and realities is essential.

Practical issues of everyday life are also affected. The caregiver must always be physically close to the child to answer an alarm, as well as being able to hear the alarm. Simple chores like washing dishes or running a lawn mower have to be considered from the standpoint of alarm response time. None of these are impossible to do, but the parents need help altering their perspectives and learning to deal with such issues on their own.

There are many concerns about home monitoring. These notions may be held by the family, friends, relatives, or neighbors. We can provide anticipatory counseling so parents can go home knowing what to expect. Common misconceptions are 1) that the monitor can electrocute the child, 2) the child will be developmentally delayed by reasons of being confined and having movement restricted, 3) the child's condition is contagious, especially if the cause of the apnea is unknown, or if this is a SIDS sibling, and 4) the monitor will prevent death.

In the face of such enormous responsibility, stress, and fear, it is possible that the mother will become totally absorbed in the baby. This preoccupation can be to the exclusion of self -interest, involvement with other siblings, career goals, personal relationships, social activities, and marital relationships. Discord and dysfunction can occur in any or all of these areas. Sometimes the mother is burdened with the entire responsibility for the care of the infant. This may evolve from a lack of resources for respite. It may be self imposed, imposed on her by other family members (often the father), or because she believe the infant is vulnerable despite the monitor.

Parents can be overwhelmed emotionally by the impact of monitoring. It can be frightening to assume such responsibility. Strong negative feelings toward the child are not uncommon. The parent may feel anger and resentment toward the child. Just as quickly they may feel strong urges to protect and shelter the child. Having a chance to explore the variations in feelings prior to discharge is important. It is also vital to assess those feelings after discharged by phone, home visit, and use of public health nurses and or parent aides.

Parents need help to sort out their feelings related to home monitoring. They need to look at their expectations and make adjustment to their real situation. The implications of CPR need to be addressed. What does it mean to assess you child as lifeless?

It would be ideal for parent s to have time away form their monitored child. This is not always possible for many reason. The parents may be too fearful to leave the child. Family and friends may be unwilling to assume the responsibility. Day care regulations may prohibit accepting children using medical devices. Home care nurses may not be familiar with home monitoring. Costs to the parents may be too high to pay for such care.

In the face of so may negative elements it might be expected that parents would strongly resist monitor, or quickly abandon it once they got home. Yet many studies and my own experience say just the opposite. What seems to make it easier for them is strong psycho-social support, good education, cease explanations of the need for monitoring, continuous access to service people and medical care, established criteria for discontinuation of home monitoring, and help during the process of weaning from the monitor. For the great majority of families at hospital, the levels of stress and anxiety were greatly reduced. Babies were returned to the family structure as safely and as soon as possible. Parents again gained a sense of control and mastery over their lives.

Training for home monitoring can be done by a variety of health care professionals - nurses, respiratory therapists, health care educators, social workers, or physicians. The professional level is not as important as the quality of the educational process in combination with identifying and meeting psycho-social needs.


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7.  INFORMING THE FAMILY OF SUDDEN DEATH
Mark A. Robinson, M.S.W., U.C. Davis

 

Physicians are neither trained nor prepared for delivering the news of sudden death. the unique stresses which tax a physician during the medical or surgical emergency can affect the way he delivers the news. There are distinct strategies for preparing and delivering the news of death. An informative, chronologically ordered account of events up to and including the death, delivered after taking time to review all the facts, makes the task less stressful and is less likely to elicit unnecessary confusion and anger in survivors.

In dealing with medical emergencies, the physician is prepared to act quickly and efficiently to sustain life. Despite every effort, some of the patients in serious condition will die, and the physician will have to inform the relatives of the death. Since most physicians have had little formal preparation or training for this difficult task, they may experience anxiety before and during the encounter, and may be troubled by doubts about their style of delivery.

This article discusses the transition from dealing with medical trauma to approaching the family, and suggests ways of delivering the news of death.

 

PERIOD OF EMERGENCY TREATMENT

Medical emergencies are intense, action-oriented situations posing life-and-death problems that demand immediate identification and rapid attempts toward resolution. Diagnosis and treatment must occur almost simultaneously. This requires a high-quality combination of concentration, manual dexterity under pressure and leadership in applied medical-technical skill. Strong emotional reactions may be elicited by severely injured patients who are very young, who resemble one of the physician's family members or who are victims of criminal acts. These emotions can detract from the clear, objective concentration that is needed for effective performance. Setting aside these normal responses to maintain objectivity cannot be done without great effort and further energy drain.

When a patient dies after intensive efforts to save him, there is sometimes a dramatic change in atmosphere as activity comes to a halt and technicians, aides and nurses walk out to the treatment room. At this point, the physician is likely to be at a mental and emotional low point. When several hours of work and risks have been compressed into one, a person can be left temporarily exhausted. Unfortunately, it is at this time that the physician has to face family members and inform them of their loss. He cannot be certain how they will react to hearing such news; each family is capable of a wide range of feelings and expressions. This adds an immense surprise potential to the situation and may contribute greatly to the physician's anxiety.

The transition from dealing with medical trauma to dealing with family trauma is quick and dramatic. Objectivity must now be tempered by empathic sensitivity; role responses are replaced by interactional responses, and mechanical manipulation must give way to concerned involvement. it is not surprising that many physicians develop a defensive maneuver to protect themselves from the stress of their situation. One common maneuver is to avoid thinking about, preparing for as long as possible after the death has re-involving oneself with another patient. Another way the physician may minimize stress and discomfort is to proceed from the medical trauma to the family trauma without hesitation. This decreases the time available for experiencing anxiety about the task to come.

While at first glance these tactics appear to be effective ways for physicians to reduce stress, they may have the opposite effect. By delaying the news, the physician may increase the relatives' anxiety and thus decrease their ability to assimilate, acknowledge and deal with grief. On the other hand, rushing in unprepared increases the likelihood of presenting the news in an awkward manner.

 

TRANSITION: MEDICAL TO FAMILY TRAUMA

There are other, more effective ways a physician can prepare himself to deal with the patient's family. Some helpful suggestions follow.

 

ACKNOWLEDGE FEELINGS AND LIMITATIONS

When treatment is finished, identify any strong feelings you are left with. An unusually hectic trauma case that results in death may generate a mood of frustration and resentment. Such feelings should be set aside for later resolution rather than carried into the family situation. Relatives may interpret these residual feelings as being directed to ward them. One family remarked that the physician must have been angry because they had not called the ambulance soon enough.

Remember that your limitations are related to your particular level of capability on any given day. If you are at the end of a particularly busy day, you may be less than able to deliver an objective, reasonable and calm presentation of death to a family. If this should occur, you might ask another physician who was involved in the case to assist you or take over the task entirely.

 

REVIEW THE CASE

Before facing the relatives, review and, if necessary, make notes of the major points, symptoms, treatment procedures and patient's responses as they occurred. This will order your thoughts and help identify or anticipate areas which might be difficult to explain. One or two minutes of preparation can prevent unexpected verbal stumbling blocks during an unavoidably stressful situation.

 

ENLIST AN AIDE - THE CHAPLAIN

Have someone accompany you, if possible. Choose a person who is willing and able to provide additional support, because it is helpful to share the emotional demands of the encounter with someone.

 

OBTAIN DATA ON THE FAMILY

Find out as much as possible about the relatives to be confronted. The main points are who is present, what their relationship is, what they have been told about the onset or treatment and how they have reacted to the situation thus far. Obtaining this kind of basic information lessens the surprise potential and can better enable you to prepare for special problems. These facts may be gathered from any person who has had contact or been involved with the family, such as a registration staff member, a social worker, a nurse, a volunteer, the ambulance driver or a member of the pastoral care staff.

 

THE RATIONAL APPROACH

The rational approach to informing a family of a death is nothing unique or extraordinary; in fact, it is probably the way most physicians inform relatives of illness or injury situations which do not result in death. Common sense and simple terminology are used to tell the family what problems occurred, what actions were taken and what the patient's response was. This information is given in chronological order. Consider the following example:

"Mr. Smith arrived here at 7:10 p.m. He had collapsed at the grocery store. The ambulance crew found that his breathing was extremely shallow and that his pulse was very weak and irregular, so they began giving him cardiopulmonary resuscitation. That means pushing down on his chest in regular forceful rhythm while forcing in air to breathe for him. when he arrived here, we continued CPR and obtained an ECG tracing of his heart activity. We found ;that his heart had stopped beating altogether, so we immediately gave him several heart medications. Next, we tried to get his heart to copy the rhythm of a temporary pacemaker we inserted, but the heart didn't pick up the device's rhythm. After using the paddles and mild electric chock, we had no other ways available to us. I'm very sorry to tell you that we pronounced him dead as of 7:50 p.m.

 

DISCUSSION

When presenting this material to physicians, I am often asked two questions. One is: Why describe treatment and response when relatives are in a crisis state and are not likely to hear or understand much of what is said? This assumption is not valid. In a family of five, there are usually at least one or two who will accurately hear, perceive and retain what is said. These people will be able to repeat the facts to those who did not hear and to other relatives who will need an explanation in subsequent hours. Even those who do not full comprehend the specifics of what is being said will be able to recognize the amount of effort expended on the treatment attempt. When given this information, many families are amazed at the actual amount of work involved, much more so than after hearing the more common and vague cliché' "We did all we could."

The other common question I am asked is: What should the physician do if he approaches the family and they immediately demands to know whether the patient is alive or dead? When this happens, it indicates that the family has already considered the possibility of death and that they are going to be told. Relatives are more likely to confront the physician with this question when they have been well prepared with accurate updates on the patient's lack of response to treatment or when the patient has had previous severe exacerbations of some chronic disease, such as a previous heart attack. One physician responds to this question by saying he would like to explain briefly how things went; he then proceeds if the family finds this acceptable. Most family members will focus intently on every word of the physician's account. Frequently, they will add up the facts as presented, and one will utter the conclusion of death before the physician does.

The gentle and gradual yet factually informative approach facilitates an intellectual acknowledgment of death and a more solid cognitive basis from which to react with normal grief. It is also helpful in providing more accurate data with which to prepare and inform others of the death.

Some physicians add certain information that is not actually necessary to an understanding of how the death came about. Such information may include the likelihood that the ambulance crew's resuscitative efforts were more than adequate and that the patient was oblivious to pain or unaware of his predicament. Without this information, many relatives envision the patient's last minutes as being filled with intense pain amid strange surroundings and with feelings of being abandoned by the family. Some of these notions spring from the survivors' own fears about death, and their impact can be minimized by factual information to the contrary. The following case shows that the importance of these subtle points cannot be overstated.

After a head-on car collision, a three-year-old child was brought to an emergency room. The child's mother, who had not been in the accident, arrived at the hospital an hour or so later and was informed of the death. She was well supported by nursing personnel and physicians until her relatives arrived. During the following year, she had a recurring nightmare of helplessly watching her son screaming for help and suffering form pain while he was pinned in twisted wreckage. After consulting a therapist, she returned to the same emergency room and was fortunate enough to find a physician who had been involved in the case and recalled it vividly. He informed her that the child's particular head injury indicated that he had been rendered totally unconscious immediately on impact. The woman's nightmares ceased.

If only a few people can be spared months of unnecessary anguish, the extra time involved in delivering the news of death in this way is justified.

 

 

 TECHNIQUES TO AVOID

 

THE BLUNT APPROACH

The physician walks in, shakes his head and says, "I'm not going to pull any punches - he's dead." His blunt, curt announcement increases the likelihood that the patient's relatives will react with anger and confusion. The anger that this delivery elicits probably relates to its basically rude, insensitive tone at such an emotionally vulnerable time.

 

THE APOLOGETIC APPROACH

The physician walks in, sinks into a chair and sighs heavily. Hesitantly, he says, "This is one of the most difficult things I have to do as a physician..." or "I really hate having to be the one to tell you this but..."

This approach appears to be a sensitive way to approach the family. It may be an honest way to begin, because informing the family of a death probably is one of the most difficult tasks that a physician has to perform. The apologetic approach can be called a plea for mercy because it implies a need for forgiveness and thus may elicit pity and support form the relatives. That, in itself, is not objectionable because the physician has just provided a great deal of intensive work on behalf of the patient, and some expression of gratitude and empathy can be appropriate. The problem is that often a physician will elicit this response, accept the family's supportive attempt and then excuse himself to return to other patients. he is essentially getting more nurturing and support than he is providing, and thus is an additional drain on the family's already taxed resources.  

 


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8.  COMMONLY ASKED QUESTIONS ABOUT SIDS:
A DOCTOR'S RESPONSE
by J. Bruce Beckwith, MD

 

It is difficult to deal with the conflicting, confusing body of information and misinformation about SIDS that we're all confronted with in the daily and scientific press. We may be disappointed in our physicians because they give us information that conflicts with our physicians because they give us information that conflicts with our own intuition or experience about SIDS, or because they don't seem to know much about it. My assigned topic is "Using Accurate Information." The definition of "accurate information" for each of us who work in this field is information which agrees with our own ideas! The following are my answers to some commonly asked questions.

 

I. WHAT IS THE CAUSE OF SIDS?

It is common to read in newspapers that the "cause" for SIDS has been discovered. Some recent examples are elevated T-3, maternal smoking, prematurely, poverty or viral infection. I believe that SIDS is not a disease, but a way of dying. It's an episode which occurs over a very brief span of moments that results in the death of a baby. Things which proceeded that episode may or may not be relevant to SIDS. There are lots of so-called predisposing factors such as prematurity, but being a preemie is not the "cause" of SIDS. So many of the "causes" that we read about are really factors which describe a population of SIDS victims, but do not explain the cause of death.

In approaching SIDS, the thing that happened last is most important, namely how did the baby die? In other words, what was the mechanism of death? Perhaps the most significant original observation I've made on SIDS bears on that specific point - how they die. It is my belief, based upon many research findings, that at the end of a breath, as a baby lets out air and is ready to take a new bath during sleep, the airway closes off in the back of the throat. That closure makes it impossible for the baby to take a next breath. As a result, the baby may change position. The face may come to be straight down into the bedding, or might get wedged in a corner of the crib, or a blanket may be pulled over the head. These conditions may suggest the baby suffocated, but in fact, specific research has been done proving that even tucking the blankets on all four sides of the crib mattress does not cause blood oxygen levels to drop. So even when appearances may suggest the baby might have suffocated in its bedding, these appearances are misleading, and are the result of the way they die, not the cause of death.

If there is evidence of airway obstruction, how can we so confidently rule out suffocation? I emphasized earlier that the obstruction occurred at the end of a breath. One of the findings in the examinations of the SIDS babies are little pinpoint hemorrhages (petechiae) found in the chest organs of 87% of the cases. These hemorrhages result from instantaneous and complete closure of the upper respiratory tract at the end of a breath. If I were to go out and attempt to strangle somebody or put a plastic bag over their head, it would be almost impossible to produce the hemorrhages. The findings differ in SIDS and suffocations, with approximately 95% confidence levels.

So what causes SIDS? Again, I believe that SIDS is not a disease, but a way of dying. The mechanism appears to be sudden obstruction of the airway during sleep.

 

II. WHY CAN A HEALTHY BABY DIE SO SUDDENLY?

Why would the airway become obstructed during sleep in a healthy and thriving baby? Nobody knows for sure. If one accepts that we understand how they die, the next question is why do they die? A concept that I have found appealing for many years is that this stoppage, or obstruction of the airway is not due to a disease process or an abnormality of the baby, but is a reflection of the fact that babies at this time of life are undergoing an incredibly rapid state of growth and maturation.

Many important changes are occurring at the age when most SIDS occur. The infant is, among other things, coming into an age where he is beginning to sleep through the night. That's not just a simple change in habit pattern, but a change that is very fundamental and has to do ;with control mechanisms in the brain. Centers that are beginning to be active in the baby's brain didn't even exist when that infant was born. Virtually all of brain growth occurs in the first two years of life and the growth rate in the first six months is the most rapid of any time in life. During the time when these important control centers are in a period of transition, abnormal messages might come down to the organs of respiration, one of which is to "close off" rather than "open up." Normally, at the end of a breath, the throat collapses or closes, then opens up prior to a new breath being taken. But if the wrong message comes down from the brain, the throat may stay closed instead of opening. That wrong message isn't necessarily a result of this baby being abnormal, but occurs in a normal baby whose brain is growing at a tremendously rapid pace.

This view of SIDS is certainly one person's view; it's not shared by everybody who works in SIDS. It's a view which I find very reasonable and helpful; the concept is that the baby was normal when it dies, not abnormal. There is no way for anyone to predict that a normal baby is going to have this kind of abnormal event. Many factors may contribute to that event. Minor irritation of the airway may, by increasing the sensory input coming up the nerves form the throat to the brain, increase the likelihood of abnormal messages to come down. Thus, perhaps we have a connection with the minor respiratory infections which are present in many cases.

 

III. HOW IS THE SIDS DIAGNOSIS MADE?

In doing a post-mortem examination, we don't see the lethal mechanism directly. After death, muscles relax, so the pathologists don't find the throat muscles clamped shut. There are little things that we find consistently, such as the pinpoint hemorrhages I mentioned earlier, but none of those things account directly for death. They are only clues to the way they die, and helpful to the pathologist in diagnosing the case as SIDS.

The SIDS victim did not die of nothing. The baby died of a very distinctive entity. Any of you who are familiar with sudden infant death will know that the typical case falls into a narrow age range, and seemed to be okay except maybe for a cold, ate his last meal normally, was put to bed and was later found dead. You know when you hear that story what the pathologist is going to say. But when the story is different, then you really want to know what the pathologist found. When there are some unusual features to the case, the post-mortem becomes especially important, as there are many conditions other than SIDS which can kill infants and young children suddenly.

If we take all babies under one year, who have 1) died unexpectedly, 2) during sleep, with 3) no history of alarming symptoms, such as seizures, temperature over 105 degrees, and 4) no external findings to allow one to suspect a cause of death (like a fractured skull or a skin rash), 92% of cases will be diagnosed as SIDS after-autopsy. If the infant is 2 or 3 months old, it would be more like a 95% certainty. In some communities it is not possible to get an autopsy, but one can usually do an x-ray examination to add to these four criteria. With the presence of a normal full body x-ray, the chances the death was due to SIDS goes from 92% to 98.2%.

 

IV. MY BABY WASN'T A TYPICAL SIDS CASE.

Each of you who has personally experienced SIDS probably feels that your baby in some ways doesn't fit the classical profile. You read about "high risk" babies and it's very easy to confuse the concept of "high risk" with "typical." For example, a "high risk" baby might be born weighing less than three pounds to a disadvantaged family in the winter months. The risk to that baby is perhaps one in 50. If your baby was a full-term, 8-lb. baby who died in the summertime, and was a girl, it doesn't sound typical of the "high risk" baby that you hear about. But, if fact, most SIDS babies are not drawn form the "high risk" population. There are many more babies in our society who are in the "low risk" population, and the majority of SIDS babies are from this "low risk" population. Thus, the 8-lb. baby is a more "typical" SIDS victim than is a 3-lb. preemie. even though that preemie had a higher individual risk of dying. Because there are so many full-term babies, they constitute the majority of SIDS babies. The same principal applies to the other so-called "high risk" factors. Therefore, these things you read about "high risk" SIDS babies often lead to confusion and it is important to understand that "high risk" and "typical" are very different concepts.

Any one case is a single dot on the bell-shaped curve and it could fall anywhere on that curve. The description of a population as a whole does not describe each individual member of that population. That's an idea that's often difficult to get across. I don't know if the totally typical case of SIDS ever has occurred. Every baby that ever died was an individual, and every person who has lost a baby identifies SIDS with that particular individual - the hair color, behavioral patterns, and the medical history of the baby is the profile of SIDS to that parent and family. It's important for families to be able to appreciate that because that baby seemed different than the other children in that family, it doesn't mean that difference was in any way related to the death. My experience has made it very clear that there is no typical pattern of behavior, for example, in babies who later die of SIDS.


V. MY BABY CRIED OUT DURING THE NIGHT HE DIED, AND I FEEL SO GUILTY BECAUSE I DIDN'T RESPOND.

This was a death caused by airway obstruction and babies can't cry when their airway is obstructed. So when that baby was crying, he could not have been dying. He cried, went to sleep, and then died later. Not responding to that cry had nothing to do with the fact that the baby died. Babies do not die from crying.

 

VI. SINCE SIDS ONLY OCCURS DURING SLEEP, IF I HAD AWAKENED MY BABY, WOULD HE HAVE DIED?

My answer has to be "no, he wouldn't have died then." But how in the would could anybody know at what moment it was going to happen? The way to prevent SIDS would be never to let a baby sleep, and that's obviously impossible.

 

VII. IS SIDS CONTAGIOUS?

Again, the answer is "no." My personal experience with over 1,200 cases includes not one example where a SIDS victim was closely in contact with another SIDS victim (except for three cases of twin SIDS cases). There are times in every community when there are more SIDS than other times. When viral diseases of certain kinds are sweeping through the community, the incidents of SIDS will climb. But there is no "crib death virus."

 

VIII. WILL IT HAPPEN AGAIN IN MY FAMILY?

SIDS is not a hereditary disease. There are two widely quoted articles in the research literature that say that it may be familial. Each of those came up with a risk figure that scares everybody - of 1 in 50. Each of those two papers contains some important errors, so that the true figure is more like 1 in 125. Even these figures exaggerate the risk to siblings. There are two reasons for this.

One reason is the familial aggregation of risk factors, such as prematurity. For some mothers prematurity tends to occur repeatedly because of a relaxed cervix or other factors that make it difficult for her body to retain a baby in utero for nine months. Since 20% - 30% of any SIDS series will be preemies, any large SIDS series is going to include lots of subsequent preemies. Therefore, we would expect risk figures somewhat higher risk figures are not shared by the entire population of subsequent siblings, but only by the subsequent preemies.

The other reason is that there are some hereditary diseases that can kill babies suddenly and unexpectedly: heart disease, brain disease and a variety of bio-chemical disease that require some special studies to diagnose. If you take a large population of SIDS cases, it is likely to be contaminated by a few rare examples of these diseases. One of the most common that we know about is something that we now call familial infantile apnea, and that's a strongly hereditary disorder. If in the family background there are a lot of infant deaths, then a genetic disease mimicking SIDS could be a factor of concern. A few families will have genetic disease - most of these will have multiple sudden infant deaths in the family background as a clue to this fact. These few families do have a high recurrence risk the others do not. In summary, there is no reason to believe that most families who experience the loss of a baby to SIDS are at any increased risk of recurrence. 


Back to Chapter Six Topic Index

 

 


9.  FACT SHEET: SIDS INFORMATION OF THE EMT

Prepared by: Paula Pachon,
Information Specialist National SIDS Clearinghouse

Sudden Infant Death Syndrome (SIDS), the sudden and unexpected death of apparently healthy babies, is the major cause of death of infants between the ages of 1 month and 1 year. In the United States, SIDS, sometimes referred to as crib or cot death, is responsible for the death of approximately 6,500 infants each year. It has been estimated that annually up to two deaths per 1,000 live births will be the result of SIDS.

SIDS deaths produce intense and traumatic reactions among surviving family members, as well as health care providers. Lifelong feelings of guilt, sibling emotional problems, divorce, and even, suicide are all too often the result of this tragic event. It is clear that there are multiple victims of this disease - the dead infant and the surviving family members.

 

SOME BASIC FACTS ABOUT SIDS

SIDS is a definite medical entity and is the major cause of death in infants after the first month of life.
SIDS is at least as old as the old Testament and seems to have occurred at least as frequently in the 16th and 19th centuries as it does now.
Victims appear to be healthy prior to death.
At this time SIDS cannot be predicted or prevented, even by a physician.
There appears to be no suffering; death occurs very rapidly, usually during periods of sleep.

WHAT SIDS IS NOT

SIDS is not cause by external suffocation.
SIDS is not caused by vomiting and choking.
SIDS is not contagious.
SIDS does not cause pain or suffering to the infant.
SIDS cannot be predicted.

 

SIDS AND THE ROLE OF THE EMERGENCY MEDICAL TECHNICIAN

The Emergency Medical Technician (EMT) is often the first official person on the scene following the discovery of the infant. The parents or other caretaker of the infant - e.g. grandparents, baby-sitter - cling to the hope that the EMT can do something to save the infant even thought the child may be obviously dead. The role of the EMT in this situation is difficult. he should begin immediate emergency resuscitation efforts and comfort the parents whose reactions may range from numb silence to violent hysteria. By offering sensitive support to the family and gathering accurate information in a non-threatening manner, the EMT helps to alleviate the future emotional burden of the surviving family members.

 

HOW THE EMT CAN TELL IF THE INFANT IS A SIDS VICTIM

Only an autopsy can conclusively determine if an infant's death is due to SIDS. The EMT should make no assumptions about the cause of death. The death of a apparently healthy infant, and the general appearance of the infant in his crib may be misleading. There have been cases where SIDS has been mistaken for child abuse. Therefore, it is necessary that the EMT, as the first responder, know some of the identifying features characteristic of the SIDS victim as opposed to the abused child. The table on the reverse of this sheet provides a list of the general physical characteristics of each. This table will help the EMT in observing evidence useful to the medical examiner or coroner in identifying the possible SIDS victim as well as distinguishing this infant from a battered child.

 

SOME BASIC FACTS ABOUT SIDS

SIDS is a definite medical entity and is the major cause of death in infants during the first year of life.
The cause or causes for SIDS are not known.
Approximately 90% of all SIDS deaths occur annually in the United States.
Approximately 6,000 to 7,000 SIDS deaths occur annually in the United States.
SIDS occurs in all socio-economic levels.
SIDS victims appear to be healthy prior to death.
At this time SIDS cannot be predicted or prevented, even by a physician.
There appears to be no suffering; death occurs very rapidly, usually during periods of sleep.
Cases of SIDS have been reported throughout history, as far back as the time of the Old Testament.

 

WHAT SIDS IS NOT

SIDS is not caused by external suffocation.
SIDS is not caused by the type of feeding method used.
SIDS is not caused by immunizations.
SIDS is not caused by child abuse or neglect.
SIDS is not cause by overheating.
SIDS is not caused by vomiting or choking.
SIDS is not contagious, it is not an infectious disease process.
SIDS does not cause pain or suffering to the infant.
SIDS is not caused by a lack of love.
SIDS is not caused by a sleeping parent rolling over onto the baby.

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10.   SUDDEN INFANT DEATH SYNDROME

 

OBJECTIVES:

1) Definition of Sudden Infant Death Syndrome
2) Overview of State Legislation
3) Describe the typical baby that Dies of S.I.D.S.
4) Identify common signs and symptoms
5) Identify differences between Child Abuse/S.I.D.S.
6) Identify risk factors and non risk factors
7) Describe Emotional Responses of Survivors
8) Identify Resources Available for families and child care providers.
9) Identify Interview Methods 


Back to Chapter Six Topic Index

 

 


9.  FACT SHEET: SIDS INFORMATION OF THE EMT

Prepared by: Paula Pachon,
Information Specialist National SIDS Clearinghouse

Sudden Infant Death Syndrome (SIDS), the sudden and unexpected death of apparently healthy babies, is the major cause of death of infants between the ages of 1 month and 1 year. In the United States, SIDS, sometimes referred to as crib or cot death, is responsible for the death of approximately 6,500 infants each year. It has been estimated that annually up to two deaths per 1,000 live births will be the result of SIDS.

SIDS deaths produce intense and traumatic reactions among surviving family members, as well as health care providers. Lifelong feelings of guilt, sibling emotional problems, divorce, and even, suicide are all too often the result of this tragic event. It is clear that there are multiple victims of this disease - the dead infant and the surviving family members.

 

SOME BASIC FACTS ABOUT SIDS

SIDS is a definite medical entity and is the major cause of death in infants after the first month of life.
SIDS is at least as old as the old Testament and seems to have occurred at least as frequently in the 16th and 19th centuries as it does now.
Victims appear to be healthy prior to death.
At this time SIDS cannot be predicted or prevented, even by a physician.
There appears to be no suffering; death occurs very rapidly, usually during periods of sleep.

WHAT SIDS IS NOT

SIDS is not cause by external suffocation.
SIDS is not caused by vomiting and choking.
SIDS is not contagious.
SIDS does not cause pain or suffering to the infant.
SIDS cannot be predicted.

 

SIDS AND THE ROLE OF THE EMERGENCY MEDICAL TECHNICIAN

The Emergency Medical Technician (EMT) is often the first official person on the scene following the discovery of the infant. The parents or other caretaker of the infant - e.g. grandparents, baby-sitter - cling to the hope that the EMT can do something to save the infant even thought the child may be obviously dead. The role of the EMT in this situation is difficult. he should begin immediate emergency resuscitation efforts and comfort the parents whose reactions may range from numb silence to violent hysteria. By offering sensitive support to the family and gathering accurate information in a non-threatening manner, the EMT helps to alleviate the future emotional burden of the surviving family members.

 

HOW THE EMT CAN TELL IF THE INFANT IS A SIDS VICTIM

Only an autopsy can conclusively determine if an infant's death is due to SIDS. The EMT should make no assumptions about the cause of death. The death of a apparently healthy infant, and the general appearance of the infant in his crib may be misleading. There have been cases where SIDS has been mistaken for child abuse. Therefore, it is necessary that the EMT, as the first responder, know some of the identifying features characteristic of the SIDS victim as opposed to the abused child. The table on the reverse of this sheet provides a list of the general physical characteristics of each. This table will help the EMT in observing evidence useful to the medical examiner or coroner in identifying the possible SIDS victim as well as distinguishing this infant from a battered child.

 

SOME BASIC FACTS ABOUT SIDS

SIDS is a definite medical entity and is the major cause of death in infants during the first year of life.
The cause or causes for SIDS are not known.
Approximately 90% of all SIDS deaths occur annually in the United States.
Approximately 6,000 to 7,000 SIDS deaths occur annually in the United States.
SIDS occurs in all socio-economic levels.
SIDS victims appear to be healthy prior to death.
At this time SIDS cannot be predicted or prevented, even by a physician.
There appears to be no suffering; death occurs very rapidly, usually during periods of sleep.
Cases of SIDS have been reported throughout history, as far back as the time of the Old Testament.

 

WHAT SIDS IS NOT

SIDS is not caused by external suffocation.
SIDS is not caused by the type of feeding method used.
SIDS is not caused by immunizations.
SIDS is not caused by child abuse or neglect.
SIDS is not cause by overheating.
SIDS is not caused by vomiting or choking.
SIDS is not contagious, it is not an infectious disease process.
SIDS does not cause pain or suffering to the infant.
SIDS is not caused by a lack of love.
SIDS is not caused by a sleeping parent rolling over onto the baby.

Back to Chapter Six Topic Index



10.   SUDDEN INFANT DEATH SYNDROME

 

OBJECTIVES:

1) Definition of Sudden Infant Death Syndrome
2) Overview of State Legislation
3) Describe the typical baby that Dies of S.I.D.S.
4) Identify common signs and symptoms
5) Identify differences between Child Abuse/S.I.D.S.
6) Identify risk factors and non risk factors
7) Describe Emotional Responses of Survivors
8) Identify Resources Available for families and child care providers.
9) Identify Interview Methods 


Back to Chapter Six Topic Index

 

 


9.  FACT SHEET: SIDS INFORMATION OF THE EMT

Prepared by: Paula Pachon,
Information Specialist National SIDS Clearinghouse

Sudden Infant Death Syndrome (SIDS), the sudden and unexpected death of apparently healthy babies, is the major cause of death of infants between the ages of 1 month and 1 year. In the United States, SIDS, sometimes referred to as crib or cot death, is responsible for the death of approximately 6,500 infants each year. It has been estimated that annually up to two deaths per 1,000 live births will be the result of SIDS.

SIDS deaths produce intense and traumatic reactions among surviving family members, as well as health care providers. Lifelong feelings of guilt, sibling emotional problems, divorce, and even, suicide are all too often the result of this tragic event. It is clear that there are multiple victims of this disease - the dead infant and the surviving family members.

 

SOME BASIC FACTS ABOUT SIDS

SIDS is a definite medical entity and is the major cause of death in infants after the first month of life.
SIDS is at least as old as the old Testament and seems to have occurred at least as frequently in the 16th and 19th centuries as it does now.
Victims appear to be healthy prior to death.
At this time SIDS cannot be predicted or prevented, even by a physician.
There appears to be no suffering; death occurs very rapidly, usually during periods of sleep.

WHAT SIDS IS NOT

SIDS is not cause by external suffocation.
SIDS is not caused by vomiting and choking.
SIDS is not contagious.
SIDS does not cause pain or suffering to the infant.
SIDS cannot be predicted.

 

SIDS AND THE ROLE OF THE EMERGENCY MEDICAL TECHNICIAN

The Emergency Medical Technician (EMT) is often the first official person on the scene following the discovery of the infant. The parents or other caretaker of the infant - e.g. grandparents, baby-sitter - cling to the hope that the EMT can do something to save the infant even thought the child may be obviously dead. The role of the EMT in this situation is difficult. he should begin immediate emergency resuscitation efforts and comfort the parents whose reactions may range from numb silence to violent hysteria. By offering sensitive support to the family and gathering accurate information in a non-threatening manner, the EMT helps to alleviate the future emotional burden of the surviving family members.

 

HOW THE EMT CAN TELL IF THE INFANT IS A SIDS VICTIM

Only an autopsy can conclusively determine if an infant's death is due to SIDS. The EMT should make no assumptions about the cause of death. The death of a apparently healthy infant, and the general appearance of the infant in his crib may be misleading. There have been cases where SIDS has been mistaken for child abuse. Therefore, it is necessary that the EMT, as the first responder, know some of the identifying features characteristic of the SIDS victim as opposed to the abused child. The table on the reverse of this sheet provides a list of the general physical characteristics of each. This table will help the EMT in observing evidence useful to the medical examiner or coroner in identifying the possible SIDS victim as well as distinguishing this infant from a battered child.

 

SOME BASIC FACTS ABOUT SIDS

SIDS is a definite medical entity and is the major cause of death in infants during the first year of life.
The cause or causes for SIDS are not known.
Approximately 90% of all SIDS deaths occur annually in the United States.
Approximately 6,000 to 7,000 SIDS deaths occur annually in the United States.
SIDS occurs in all socio-economic levels.
SIDS victims appear to be healthy prior to death.
At this time SIDS cannot be predicted or prevented, even by a physician.
There appears to be no suffering; death occurs very rapidly, usually during periods of sleep.
Cases of SIDS have been reported throughout history, as far back as the time of the Old Testament.

 

WHAT SIDS IS NOT

SIDS is not caused by external suffocation.
SIDS is not caused by the type of feeding method used.
SIDS is not caused by immunizations.
SIDS is not caused by child abuse or neglect.
SIDS is not cause by overheating.
SIDS is not caused by vomiting or choking.
SIDS is not contagious, it is not an infectious disease process.
SIDS does not cause pain or suffering to the infant.
SIDS is not caused by a lack of love.
SIDS is not caused by a sleeping parent rolling over onto the baby.

Back to Chapter Six Topic Index



10.   SUDDEN INFANT DEATH SYNDROME

 

OBJECTIVES:

1) Definition of Sudden Infant Death Syndrome
2) Overview of State Legislation
3) Describe the typical baby that Dies of S.I.D.S.
4) Identify common signs and symptoms
5) Identify differences between Child Abuse/S.I.D.S.
6) Identify risk factors and non risk factors
7) Describe Emotional Responses of Survivors
8) Identify Resources Available for families and child care providers.
9) Identify Interview Methods 
OBJECTIVES:

1) Definition of Sudden Infant Death Syndrome
2) Overview of State Legislation
3) Describe the typical baby that Dies of S.I.D.S.
4) Identify common signs and symptoms
5) Identify differences between Child Abuse/S.I.D.S.
6) Identify risk factors and non risk factors
7) Describe Emotional Responses of Survivors
8) Identify Resources Available for families and child care providers.
9) Identify Interview Methods 

A call involving a death, especially that of a child, will be one of the most difficult calls a First Responder may be expected to handle. Completing this task in a efficient and caring manner may save the family from the additional trauma of repeated interviews.  all suspicious deaths should be treated! handled as a homicide until proven otherwise. The goal of this class is to point out the difference between S.I.D.S. deaths and those of child abuse and homicides.

This class has been prepared in accordance with California Penal
Code 13519.3, mandating instruction of this material. Revised 01/1996.

 


SUDDEN INFANT DEATH SYNDROME LEGISLATION

 

1) SB 1067 - Training First Responders
2) SB 1068 - Training Public Health Nurses
3) SB 1069 - Standardizing Autopsy Protocol
4) SB 1070 - State S.I.D.S. Advisory Council

 

I. Introduction

A. Definition

The sudden and unexpected death of an apparently healthy child or infant which is unexpected by medical history and which a thorough postmortem examination and Death Scene investigation fail to reveal an adequate cause of death.

B. No prior History of Serious Illness, Two distinguishing Factors:

1) Sleep
2) Age of babies at time of death

C) Autopsy provides no definite cause of death.

1) S.I.D.S. is an exclusionary diagnosis
2) Negative findings in autopsy


II. History

A. Has been studied for years

B. Many theories have been tested

C. No definite cause found (although there are only two (2) pathways to death, respiratory/cardiac).

D. Most recent theories

1) Nervous system disorder
2) Sleep pattern disorder
3) Heart Irregularities
4) Chemical Imbalances
5) Less Receptive to acetylcholine chemical, unable to respond to high levels of carbon dioxide

III. Typical Victim of S.I.D.S.

A. Age

1) 2 weeks to 1 year/ rare after two years of age.
2) Most common between 2 to 4 months (50%).
3) 90% will die before they reach 6 months of age.

B. No recent history of illness

1) No reason to suspect child would die.
2) Almost always occurs during sleep (99.99%).
3) No warning to parent or child care provider.
4) More common in boys than in girls (3:2 margin).

 

IV. Risk Factors

1) Maternal Smoking
2) Maternal abuse of drugs
3) Multiple births
4) Low socioeconomic status
5) Premature birth
6) Low birth weight

 

V. Non Risk Factors

1) DPT and Polio vaccines
2) Periods of Apnea
3) Race
4) S.I.D.S. death in sibling

 

VI. Physical Signs of S.I.D.S.

A) No evidence of trauma
B) Appears well nourished
C) No swelling (edema)
D) May have blood tinged sputum
E) Often has moved bowels/bladder as part of terminal event
F) Small marks (diaper rash) look more severe
G) Cooling/ rigor mortis takes place quickly in infants (3 hours), post mortem lividity
H) Other siblings appear normal and healthy

 

VII. DIFFERENTIATING S.I.D.S. FROM CHIU) ABUSE/NEGLECT

A. S.I.D.S.

        1) Incidence

a) 7,000 - 10,000 per year
b) Highest between 2-4 months
c) More prevalent in winter months (NOV-MAR)

2) Physical appearance same as above.

3) Initially suspect S.I.D.S. if all the above characteristics are present and the parents state the child was well and healthy when put to bed.

B) Child abuse and neglect

        1) Incidence

  
                 a. 1,000 - 4,000 deaths per year in children
                    b. 300 deaths per year in infants
                    c. No seasonal difference
                    d. All ages

      2) Physical appearance                    

a. Distinguishable and visible signs of injury

1. Broken bones
2. Bruises
3. Burns
4. Cuts
5. Head trauma
6. Scars
7. Welts
8. May be signs of obvious malnutrition (thin).
9. Other siblings may show signs/patterns of injuries commonly seen in child abuse and neglect.
10. May initially suspect child abuse/neglect if all of the above characteristics and the parent's (child care provider) story does not or cannot account for all the injuries to the infant.

 

VIII. The Grieving Process

A. Shock/ disbelief

1. No known reason to suspect death.
2. No known cause of death.
3. Reactions of parents at the time of death may vary according to each person's coping or managing severe, acute, stressful situations based on prior history and social/cultural norms.
4. Most parent's feel there must have been some way to prevent the event from occurring.

B. Numbness

1. Goes through motions of daily living.
2. Cannot distract parent from hurt.
3. Fear for safety of other family members.
4. Psychosomatic symptoms of illness may develop with other signs of prolonged stress.

C. Release of grief and guilt

1. May not give into the need to release anger and guilt (through crying, ect.) for weeks or months.
2. Parent at this point needs to talk it out.
3. Men and women often grieve differently which can lead/cause communication breakdowns between couples.

D. Dealing with reality and fantasy

1. Begin to accept death as being unchangeable.
2. Realize only they can pull themselves out of the pit of despair.
3. Begin to think about subsequent children, job outside home, or perhaps work with local S.I.D.S. parent group(s).

E. Dealing with memories

1. About a year later, relief periods of not thinking about baby begin to grow longer.
2. More able to talk objectively about their personal grief and death of infant.
3. Will be moments of relapse.

F. Becoming a new person

1. Suffering strengthens and changes a person.
2. Hopefully change is not crippling.
3. Not how fast, but how well person mends.

 

IX. INTERVIEWING TECHNIQUES

1. Be Sincere
2. Be supportive
3. Be open minded
4. Do not interrogate
5. Be a good listener
6. Be a good observer
7. Allow family to talk
8. Do not be afraid to show emotion

        Typical S.I.D.S. event:

1. Baby found non-responsive! non-breathing
2. Call by responsible party
3. Paramedics/Fire Department and/or Police respond
4. CPR
5. Transport baby to hospital
6. Infant is pronounced dead by Physician
7. Family informed of death
8. Chaplain Notified
9. Coroner is notified/responds
10. Coroner responsibilities: Local Health Department
11. Performs autopsy and death: Provides information and counseling
12. Scene investigation
13. Referral information
14. for peer support
15. Notifies local Health Department
16. Notifies State S.I.D.S. program State S.I.D.S. program
17. Signs death certificate
18. Notifies Parents of cause of death
19. Community education

 

REFERRAL AGENCIES

National S.I.D.S. Foundation
Two Metro Plaza, Suite 205
8240 Professional Place
Landover, MD. 20785

National S.I.D.S. Foundation
10500 Little Patuxent Parkway, Suite #240
Columbia, Maryland 21044
Tele: 1-800-221-SIDS
Tele: 1-800-369-SIDS

Guild for Infant Survival, INC. (Orange County)
P.O. Box 17432
Irvine, California 92713-7432
Tele: 714-474-SIDS

California Association of Public Health Nurses
3701 Branch Center Road
Sacramento, California 95827
Tele: 916-366-2345

Bereavement Network Resources of Sacramento
P.O. Box 660365
Sacramento, California , 95866
Tele: 916-363-3092

Valley-Sierra Chapter
The SIDS Alliance
564 La Sierra Drive, Box 78
Sacramento, California 95864
Tele: 916-368-SIDS

Law Enforcement Chaplaincy Sacramento
1023 H Street, Suite # B
Sacramento, Ca 95814
Tele: 916-446-5716

References Resources

Bereavement Network, Resources of Sacramento

Commonly asked Questions about Sudden Infant Death Syndrome, A

Doctor's response, Bruce Beckwith, M.D.

Facts About S.I.D.S., National S.I.D.S. Foundation

Facts About S.I.D.S. For Police Officers, National S.I.D.S. Foundation

 

Articles / Books

Archer, D.N. (1988), "Sorrow Has Many Faces", Nursing 88, May issue, pages 43-44.

Berman, AB. (1979), "The Sudden Infant Death Syndrome- What Can I Do", Medical Times, April

Burrus, W.M. (UNK), "The Riddle Of Crib Death"

Carson, S.H. & Duncan, J.A. (1985), "The Important Work Of grieving", Special care, September, pages 5-7

Counseling Team, "Emotional Impact on First Responders and Emergency Personnel in a SIDS Incident".

De Frain - Taylor- Ernst, " Coping With Sudden Infant Death" Epiro, P.D. (edit) (1984), "When Sudden Infant Death Strikes".

Keens, T.G., MD. (1987), "Public Health Grand Rounds Presents Sudden Infant Death Syndrome", State Of California

Korth, S.K. (1988), "Behavior Issues: Unexpected Pediatric Deaths in the Emergency Department: Supporting The Family." Journal of Emergency Nursing, 14:5, pages 302-305

Krous, H.F., MD (1988), "Pathological Considerations Of Sudden Infant Death Syndrome", Pediatrician, 15: pages 231-239

Guntherroth, R.G., MD (1982), "Crib Death- Sudden Infant Death Syndrome"

Thomas, D.O., (1986), "Thoughts On Pediatric Arrest." Journal of Emergency Nursing, 12: pages 406-408.

Wanz~t~id, J. (unk), "What To Say And What Not To Say To The Sudden Infant Death Syndrome Parent."


Back to Chapter Six Topic Index

11.   HOW TO DISTINGUISH BETWEEN SIDS AND CHILD ABUSE AND NEGLECT

Sudden Infant Death Syndrome

Incidence:
Deaths: 6,500 - 7,500/year
Highest: 2 to 4 months of age
When: Winter Months
Child Abuse and Neglect

Incidence:
Deaths: 1,000 - 4,000/year
Deaths in Infants: 300/year
When: No seasonal difference
Physical Appearance:

Exhibits no external signs of injury.
Exhibits "natural" appearance of dead baby:

Lividity - settling of blood; frothy      drainage from nose/mouth
Small marks, e.g., diaper rash looks more severe
Cooling/rigor mortis-takes place quickly in infants (about 3 hours)
Appears to be well-developed baby, though may be small for age.
Other siblings appear to be normal and healthy.


Physical Appearance:

Distinguishable and visible signs of injury.
Wounds
Broken bone(s)
Bruises
Burns
Cuts
Head trauma, e.g., black eye
Scars
Welts
May be obviously wasted away (Malnutrition)

Other siblings may show patterns of injuries commonly seen in child abuse and neglect.
May Initially Suspect SIDS

All of the above characteristics

PLUS

Parents say that infant was well and healthy when put to sleep (last time seen alive).

May Initially Suspect Child Abuse

All of the above characteristics

PLUS

Parent's story does not "sound right" or cannot account for all injuries on infant.

NOTE:  The determination of whether the child is or is not a SIDS victim is the responsibility of the medical examiner or medical coroner. It is NOT the responsibility of the Emergency Medical technician.

Back to Chapter Six Topic Index


12.   WHAT DO WE KNOW ABOUT THE SUDDEN INFANT DEATH SYNDROME?


1. SIDS Definition

A. Sudden death of an infant or young child usually under one year of age which was:

1) Unexpected by history (clinical) and
2) In which a postmortem examination (autopsy) and
3) Review of circumstances surrounding the death (death scene investigation)
4) Fail to demonstrate an adequate cause of death.

 

2. The most important facts about SIDS for grieving survivors are:

A. It can't be predicted
B. It can't be prevented
C. It is not the result of anything you did or failed to do. You are not to blame for the baby's death - it is not your fault.

 

3. Is SIDS an entity or a wastebasket ("If they just looked hard enough...")

A. Consistent evidence that marks the syndrome:

1) Age distribution
2) Association with sleep
3) Typical history
4) Typical autopsy findings

B. Classical vs. atypical SIDS
C. "Administrative" vs. "scientific" definition

 

4. Who dies from SIDS?

A. "Typical" vs. "high risk"
B. Risk factors in SIDS are not causal; they have no predictive power.
C. The majority of babies who die are typical babies. A baby in your family or your next door neighbor's, or in your church nursery on a Sunday morning.
D. Significance: Statistical vs. clinical. Example of maternal smoking

 

5. What is the Mechanism of Death in SIDS - the final pathway that leads to death?

A. Cardiac or respiratory
B. A clue from the autopsy: Petechial hemorrhages in SIDS, in other deaths, and in animal models.

 

6. Are babies who die from SIDS normal or abnormal before death?

A. Inherent abnormality
B. External abnormality
C. By-product of normal development

 

7. What about our next baby?

A. Typical or atypical death?
B. The average family with one typical SIDS death is not at greater risk with their next baby.
C. Continuing family risk factors.
D. Diseases which can be mistaken for SIDS
E. NICHD collaborative study - only .7% of SIDS deaths were siblings of previous SIDS victims.

 

8. What about monitoring?

A. Relationship between SIDS and apnea
B. Medical vs. emotional indicators

 

9. What about the new theory in the paper...

A. Anything can be published
B. Anything can be misunderstood by the media
C. Does it address the age distribution and sleep association?
D. Has it been replicated.

 

Sally L. Jacober, M.S.W., M.P.H.
SIDS Program Specialist
1-800-369-SIDS




Back to Chapter Six Topic Index

 


 

13.  WHEN SIDS HAPPENS

  • Baby found not breathing

  • Call 911

  • EMS, fire and /or police respond

  • Decision is made about CPR

  • Decision is made about transporting baby

  • Baby is pronounced dead

  • Coroner comes to home or hospital

Coroner's Responsibilities

Local Health Department's Responsibilities

Performs autopsy/death scene investigation

Notifies local health department

Notifies state program

Signs death certificate

Notifies parents of cause of death
Provides information and counseling

Referral information for peer support

Provides information to state program

Periodic follow-up

Community education (with peer group)

 


Back to Chapter Six Topic Index



14.  SUDDEN INFANT DEATH SYNDROME CURRICULUM
FOR EMERGENCY MEDICAL RESPONDERS AND FIREFIGHTERS

 

I. Define Sudden Infant Death Syndrome (SIDS)

A. Definition: Sudden Infant Death Syndrome, or "crib death" is the sudden and unexpected death of an apparently healthy infant, usually under one year of age, which remains unexplained after a complete medical history, death scene investigation and postmortem examination.

 

II. Describe the Characteristics of an Infant Who Dies of Probable SIDS.

A. Age distribution:

1. Approximately 85% of all sudden and unexpected post neonatal infant deaths are due to SIDS.

2. Approximately 90% of all SIDS deaths occur in infants less than six months of age.

B. Seasonal distribution: The greater number of deaths take place in the winter and fall months.

C. Identify the population distribution:

1. Greater number of male infants die from SIDS than females (60 vs. 40%).

2. SIDS occurs at a rate of approximately 2/1,000 live births.

3. SIDS occurs in all socio-economic, racial and ethnic groups.

 

III. Describe the Physical Features of an Infant Who Dies of Probable SIDS.

A. Visible features:

1. Infants who die of SIDS are initially indistinguishable from other infants who die of other causes.

2. Visible features found on these infants may include alterations in skin color, presence of frothy, blood tinged mucus draining from the infant's mouth or nostrils.

3. It is important to recognize that when the first emergency medical responder is presented with a critically ill or injured infant, no matter the cause, the first priority is the appropriate evaluation and if indicated, resuscitation of the infant.

4. The first emergency medical responder should document all the physical findings objectively and not pass judgment as to their causes.

 

IV. Describe the Typical Infant and Scenario.

A. SIDS almost always occurs when an infant is asleep or thought to be asleep.

B. The infant is usually healthy prior to death, but occasionally may have had evidence of a mild upper respiratory infection, or recent physical stress. Parents or caregivers may have placed the infant down for a nap and return to find the infant not breathing or appears to be dead. (This may be 10-20 minutes to several hours later.) Parents/caregivers report not hearing any signs of a struggle even though they were within hearing distance at all times.

 

V. Identify the Important Activities the Emergency Medical Responder Should Initiate.

A. The decision to institute or continue basic life support resuscitation efforts shall be according to local EMS agency policies.

B. Support of parents or caregivers:

1. Use a calm and directive voice.
2. Be clear in instructions to those present.
3. Provide explanations to the parents or caregivers about treatment and transport.
4. Reassure parents or caregivers that there was nothing they could have done.
5. Allow a parent or caregiver to accompany the baby if the situation permits.

C. Elicit a brief history at scene, if time permits. Refrain form asking judgmental questions. Examples of non-leading and open-ended question include:

1. What happened?
2. Who found the infant and where?
3. What did he or she do?
4. Had the infant been moved?
5. What time was the infant last seen alive?
6. How was the infant that day?
7. Had the infant been sick?

D. Perform an environmental check and document findings:

1. Observe the location of the infant upon arrival, in the crib or bed, floor, etc.
2. Observe for the presence of objects in the original area in which the infant was found.
3. Observe any unusual conditions such as high room temperature or odors in the environment.
4. Observe presence of medications (take all medications to the hospital, if possible).

E. Document all findings completely and accurately on the patient care record.

Failure to accurately document findings could result in unnecessary investigations or significant emotional stress to the parents or caregiver or emergency medical responders.

 

VI. Identify Potential Parent/Caregiver Responses to an Infant Death.

A. Responses of parents/caregivers to the sudden and unexpected death of an infant are not predictable. The responses may vary and could include: denial, anger, hysteria, withdrawal, intense guilt, or no visible response.

B. The parent/caregiver may or may not accept that the infant is dead.

C. The parent/caregiver may make demands of the emergency medical responder which could include:

1. Repetitive questions.
2. Request to not initiate care or terminate resuscitation efforts.
3. Request to be alone with the infant.
4. Request for the cause of apparent death.

D. The parent/caregiver may even interfere with appropriate care.

 

VII. Identify Potential Responses of the Emergency Medical Responder to an Infant Death.

A. Response of the emergency medical responder to the sudden and unexpected death of an infant may include the following:

1. Anger, blame and identification with the parent.
2. Withdrawal, avoidance of parent/caregiver.
3. Self-doubt, if the baby does not recover.
4. Sadness and depression.

B. The emergency medical responder may have expectations of how the parent/caregiver should behave and respond:

1. Expecting tearful and hysterical responses and unable to believe that not every parent/caregiver will initiate CPR.
2. Unable to accept a parent who has decided the infant is dead and does not want CPR started.
3. Unfamiliar with the mourning and grief behaviors of different cultures or religious belief.

 

VIII. Identify Ways the Emergency Medical Responders May Prevent, Reduce, or Stop the Critical Incident Stress.

A. Acknowledge that stress is an integral part of the job of the emergency medical responder.

B.Identify signs and symptoms of stress which may include:

1. Recurring dreams.
2. Anger.
3. Physical illness.
4. Depression.
5. Changes in eating and sleeping patterns.
6. Mood changes.
7. Inability to concentrate.
8. Withdrawal.

C. Identify strategies for decreasing the impact of stress. These may include:

1. Exercise, plan leisure time and limit overtime hours.
2. Get feedback from SIDS parent groups.
3. Request tape reviews and become educated about stress management and SIDS.
4. Talk to field supervisors, get adequate rest, eat a balanced diet, write a personal journal and obtain professional, religious or peer counseling.

D. Request professional assistance if the particular incident produces a profound emotional reaction. Request Critical Incident Stress Debriefing (CISD), if available.

 

IX. Identify the Community Resources Available to Parents/Caregiver.

A. California resource list:

1. Local country peer support groups.
2. Local county peer contact.

B. Local public health departments.

C. California SIDS Program (1-800-369-SIDS)

D. National SIDS Foundation and Guilds for Infant Survival (GIS) 1-800-221-SIDS/1-800-247-4370.

 

Back to Chapter Six Topic Index

 

 

15.   LINE-OF-DUTY DEATHS:
SURVIVOR AND DEPARTMENTAL RESPONSES
Frances A. Stillman, Ed.D., Research Director,
Concerns of Police Survivors

 

Introduction: Officer Brummett was performing a routine traffic stop when a passing car struck and killed him.. For the first 6 months after the incident, his widow refused to accept the fact that her husband had died. After 6 months, she accepted his death but felt emotionally numb and unable to grieve. She said she needed to be "strong" so she would not upset others.

More than 2 years after the accident, Mrs. Brummett remained distressed by her loss. plagued by nightmares of her husband, she had trouble controlling her thoughts about his death and her consequent problems. She could not concentrate at work and began to drink heavily. She felt alienated from most of her friends and family.

 

From the Director

The National Institute of Justice is proud of its efforts in "protecting the protectors" - reducing the risks police officers face on the job. The most dramatic example is the Institute's role in developing lightweight police body armor, which has been credited with saving the lives of more than 700 police officers nationwide.

But despite these and other efforts, far too many police officers still are killed in carrying out their sworn duty to protect citizens from criminal attack. Line-of-duty deaths, whether felonious or accidental, are a sad and frequent reminder of the danger inherent in police work. While the loss to the department and the community is serious, each police death leaves family, friends, and coworkers with the emotional trauma of a devastating loss.

There is a bond joining those in the "police family" that is formed by the shared experiences they have faced. A police death hits hard within that family, as others are reminded of their own vulnerability.

Many mistakenly believe that the spouses, children, and parents who survive police deaths are somehow more prepared for their losses than are other people. But knowing that the job can be dangerous does not prepare an individual for the actual experience of losing a loved one. Police survivors often endure prolonged psychological stress because they do not seek help. They are hurt by the misconception that, because they are part of the police community, they should somehow be stronger emotionally and better prepared for such a tragedy.

To learn more about the problems faced by survivors of police deaths, and how police departments can help, the National Institute of Justice sponsored this study by Concerns of police survivors. The findings presented in this Research in Brief clearly show the magnitude of distress survivors face.

Too often, when police survivors do seek help, it isn't available. As this Research in Brief indicates, police departments can do much more to help survivors cope with their loss. Many departments have no formal procedures for completing required paperwork and assisting family members with funeral plans and requests for benefits. Most departments do not consider the emotional and psychological needs of survivors to be a part of their responsibility.

When police departments establish systematic policies for dealing with a departmental death, they are better able to respond to the needs of survivors. Effective procedures allow a police department to respond in a prompt, organized manner and remain sensitive to the profound human emotions they must confront. The immediate and continuing response of police departments when an officer is killed has a definite impact on the well being of survivors.

Departments with no formalized policies can learn form those that have developed clear and caring procedures for dealing with line-of-duty deaths. The information form this study can help departments begin to meet this great unfulfilled need.

James K. Stewart
Director
National Institute of Justice

 


To some, Mrs. Brummett's reaction to her husband's death may seem extreme. It is not. In fact, it is typical of the intense, long-lasting reactions experienced by the majority of adult police "survivors" - that is, the spouses, parents, siblings, friends, and coworkers of police officers killed in the course of their work. (While children also are survivors, their reactions were not studied in the research on which this report is bases.)

Reactions of police survivors are often so profound as to be diagnosed as Post-Traumatic Stress Disorder (PTSD), a psychological disorder associated with traumatic events that are generally outside the range of usual human experience. Common PTSD symptoms include recurring recollections of the traumatic event, feelings of detachment or estrangement from others, hyper alertness, sleep disturbances, guilt about surviving, memory impairment, and difficulty with concentrating.

Many people and police departments are unaware of the devastating impact of an officer's death on survivors. Many mistakenly believe that police survivors are somehow more prepared for their losses than civilian survivors.

In fact, surviving family members of public safety officers may be more at risk than other survivors after their loss. Relatives of slain police officers often endure psychological distress for long periods of time and do not seek help or discuss their problems because they feel embarrassed or wish to avoid seeming weak. They may refuse existing community services because they believe that only other members of the "police culture" can understand their problems.

A survivor's level of distress is affected by the police department's response to the tragedy. Elements of the department's response that should be considered include:

The way survivors are notified of the death.

The emotional support provided by the department.

The information the department gives concerning insurance and benefits.

How these elements are handled has an influence on whether or not the survivor will develop a clinical psychological disorder such as PTSD.

However, most police departments lack formal policies for handling the aftermath when an officer is killed on duty. Some departments have provided policies concerning only felonious on-duty deaths, thus excluding accidental deaths, thus excluding accidental deaths. Others deal only with such tangible issues as notification procedures and funeral arrangements but neglect important intangibles such as counseling and emotional support.

To learn more about the impact of a law enforcement officer's death on adult survivors and on the steps a police department can take to help survivor, the National Institute of Justice sponsored a study on the psychological, emotional, financial, and practical problems faced by survivors of police deaths.

The study was conducted by Concerns of Police Survivors (COPS), a nonprofit organization that offers emotional and moral support to spouses, parents, children, siblings, other family members, and others who are affected by police line-of-duty deaths. The study examined the reactions of 126 survivors to their losses and the ways that 188 police departments responded to their problems.

This report discusses the study findings and provides recommendations that will assist police departments in developing workable, sensitive policies that help bereaved spouses and families.


METHODOLOGY OF THE STUDY

Data for this project were gathered from two main sources:

Surviving adult family members of police officers killed in the line of duty; and

Police departments that had lost an officer feloniously or accidentally.

The sample of spouses and of police departments for this research was drawn primarily from the U.S. Department of Justice, Public Safety Office, and Benefits Office data base. The office which provides financial benefits to eligible survivors, maintains records on officers killed in the line of duty whose departments file an application for the death benefit.

Most of the spouses included in the study were survivors of officers who died between November 1982 and February 1986 and whose applications for benefits had been received by the Office. Police departments surveyed were those that had submitted a claim for Federal death benefits through the Office between 1983 and 1985.

Participating survivors responded to a questionnaire; some also participated in personal interviews. Police departments responded to a mailed questionnaire. Responding departments, located throughout the Nation, ranged in size from less than 10 sworn officers to more than 5,000 and represented Federal, State, and local jurisdictions.


IMPACT OF THE LOSS ON SURVIVORS

This study found that when police officers die in action, surviving spouses, parents, and siblings are not more prepared for the death just because they are part of a law enforcement family. Knowing that the job could be dangerous does not prepare an individual for the actual experience of having a loved one die.

According to the COPS study, the following are common police survivors' reactions to their loss:

Having difficulty concentrating and making decisions, feeling confused, having one's mind go blank.

Feeling hostile.

Feeling different from others, feeling alone, being uncomfortable in social situations.

Fearing people, places, and things, and being anxious of one's ability to survive.

Re-experiencing the traumatic incident through flashbacks, dreams or thoughts.

Feeling emotionally numb, having less interest in previously enjoyed activities, or being unable to return to prior employment.

Having less ability to express positive and negative emotions.

Feeling guilty about the way one acted toward the deceased or as if one could have prevented the death.

These reactions are indicated by specific symptoms. Table 1 presents the most prevalent and acute symptoms identified by survivors as occurring at levels that clinically indicate serious distress.

The study also found that 59 percent of the surviving spouses of police officers killed in the line of duty met the criteria for having PTSD. This psychological disorder is common among victims of physical assault, rape, and natural disasters, prisoners of war, and persons taken hostage.

Factors that were found to intensify distress reactions among spouses include the way they are notified of the death and the length of time they had been married. Spouses who are not notified in person experience additional trauma, as evidenced by increased levels of hostility and guilt. Younger women, especially if married for 10 years or less, were found to have a ;more severe reaction to the death of a spouse than older women married for a longer period of time.

 

DURATION OF DISTRESS

It has commonly been assumed that survivor grief reactions are "acute, time-limited phenomena." Survivors are often encouraged and even pressured to return to pre-trauma behaviors and activities. For some, this is an impossibility. For others, it is possible only after an extended period of healing.

1. This study confirmed recent research that indicates that the grief response after an accidental traumatic loss may add to long-term emotional distress.

2. Survivors were found to have clinical levels of psycho-pathology in a number of areas and evidence of PTSD even 2 years after the traumatic death occurred.


TABLE 1.

MOST PREVALENT AND ACUTE SYMPTOMS IDENTIFIED BY SURVIVORS

             Symptom
                     
                 
Feeling lonely
Feeling unhappy or sad
Feeling low in energy or slowed down
Feeling easily annoyed or irritated
Feeling tense or keyed up                    


Easily hurt feelings
Trouble concentrating
Repeated images that won't leave your mind
Thinking about the same thing repeatedly
Trouble remembering things                  


Feeling emotionally numb or empty
Feeling angry
Wishing others would care for you
Difficulty falling asleep
Feeling uncomfortable in social situations


Feeling people will take advantage of you
Difficulty making decisions
Having to think carefully to make the correct decisions
Being angry at yourself for not accomplishing more

            Percent Reporting
       

75.2
70.4
68.3
67.5
                     66.7                    


64.3
56.3
53.9
52.8
                    52.4                   


52.4
51.6
51.2
50.8
                   50.8                   


50.8
47.6
46.8
49.6

The assumption that time heals all wounds is not valid in the case of police survivors since people who hold this assumption may be deterred from providing the support and intervention that survivors need to recover emotionally and psychologically from a personal crisis and to return to a pre-trauma level of functioning.

 

FELONIOUS vs. ACCIDENTAL DEATH

Responding police departments reported a total of 298 line-of-duty deaths during the time period studied. Of these, 158 resulted from accidental causes and 140 from felonious causes.

Deaths due to homicide traditionally have been perceived by society as more serious and threatening events than deaths due to accidents. Thus, it was believed that surviving family members of an officer who died feloniously experienced a more severe reaction than survivors of one killed accidentally.

This study indicates this assumption is not valid for surviving spouses. Spouses of officers killed accidentally and spouses of homicide victims experience the same level of distress.

Significant differences were noted, however, between parents of officers killed accidentally and parents of officers killed feloniously. The latter were found to be more traumatized, hostile, and depressed after the death.

Survivors reported that the type of death makes a difference in the response they receive from the police department, with homicides receiving more or preferential attention than accidents. The difference in police department response can add considerable pain to an already traumatized family - especially when the family expected a different type of treatment.

In addition, if the suspect accused of killing the officer is apprehended, the survivors may experience additional trauma as a result of the trial.

 

BENEFITS AND COMPENSATION

Ninety-one percent of the police departments surveyed reported that they provide explanations of their health benefits to officers and 89 percent said they provide explanations of death benefits. However, the departments were not questioned about how the explanations were carried out and whether the officers actually understood or were aware of the importance of the information. Some departments indicated this instruction was accomplished in a brief description, or by handing officers a booklet to read. Very few departments fully explain all benefits, options, and compensation and their implications for the officer and family.

Survivors may be excluded from the police department's group medical coverage within days of the officer's death. In such cases, a letter informing survivors of this separation is sent in the mail, forcing the survivor - still in a state of shock - to find health coverage for the family. In such cases, departments seem to fail to differentiate between a planned termination from police service and an unexpected line-of-duty death.

While survivors generally reported satisfaction with the treatment they received from police departments, they did report certain specific problems regarding compensation and benefits. Most survivors are not prepared for the delays that occur in processing benefit and compensation requests. Some survivors found that departments are uninformed about benefits.


PSYCHOLOGICAL COUNSELING

Of the police departments surveyed, 58 percent have a psychological unit but only 31 percent offer access to a staff psychologist. Only 5.4 percent of the departments offer peer counseling and police-family response services; 43 percent make counseling referrals; and 19 percent pay for outside counseling.

Survivors reported a lack of psychological counseling for family members. In addition, most believed that if such services were needed as a result of the death, the police department should pay for them.

Survivors also reported they felt abandoned by the police departments. The spouses wanted some type of formal and informal contact to continue. Most reported that contact ended soon after the funeral.


POLICE DEPARTMENT POLICIES

In addition to its impact on the family, the death of an officer can be a tremendous shock for members of the police department. For smaller departments that lack financial and personnel resources, the loss of an officer creates significant disruption. And, for police officers in departments of all sizes, the death of an officer can be a demoralizing reminder of their own vulnerability.

Yet 67 percent of departments surveyed lack formal policies concerning the death of an officer. Often no one is designated or prepared to deal with the legal and financial paperwork and to assist the surviving family members in planning for the funeral, with requesting benefits, or in preparing for the emotional and financial strain that may accompany the death.

In addition, most existing policies reflect an action-oriented, task-oriented, time-limited philosophy toward survivors. Most departments tend not to consider the emotional or psychological needs of survivors to be part of their responsibility.

Notification. Notification practices varied greatly among departments. Of the policy statements submitted to COPS (60 percent of the departments with formal policies submitted them), 50 percent dealt with notification. Some dealt only with chain-of-command notification procedures, but most specified the need to notify the family quickly.

Most departments do not have designated officers or teams for notification. Often any available officer or a group of officers is asked to notify survivors.

Maintenance of records. Accurate records of next of kin are essential to notification procedures. Yet records - in cases where they are kept - are not consistently verified and updated by most police agencies.

While almost 80 percent of the police agencies surveyed keep records of spouses, more than two-thirds lack records on parents of officers. Some 40 percent of the agencies update spouses' records periodically, about 27 percent never do, and another 23 percent do so only on change of duty. Agencies that maintain records on parents of officers update then infrequently.

Action-oriented assistance. Funeral and burial procedures appeared in 53 percent of the policies COPS received; information on amount of compensation varied greatly among departments. In 67 percent of the departments surveyed, the family pays for funeral and burial expenses.

Information and emotional services provided. Of the departments surveyed, 5.3 percent provide information on will preparation; 44 percent offer instruction on stress management; 92 percent provide transportation to the hospital after the incident; 92 percent provide assistance with the media; 97 percent provide assistance with benefits; and 32 percent provide financial counseling.

Policy suggestions for police departments. The results of this study suggest that more than half of the surviving spouses of police officers killed in the line of duty may need support and assistance from the police department. Recovery from such trauma may be a very long, involved process quite different from the recovery process after a death due to a terminal illness or other anticipated event.

Police departments can help family members, as well as their own officers, to cope with the loss of an officer by establishing and implementing both general and specific policies on how to proceed in the event of a death. By designing clear-cut policies concerning notification procedures, psychological services, emotional support, and benefits and compensation for survivors, police departments will be better prepared to respond to survivors in an organized and humane fashion.

However, being organized is not enough. Survivors and police personnel need to be aware that the death of a loved one of a good friend, of a partner, or of a coworker, is a stressor of the highest magnitude. Avoiding discussion of the possibility of injury or death, of possible plans of action, and of prescribing policies protects no one from death. But it means that if death does occur, the crisis management skills needed to help survivors will not have been planned and thus will not be readily available.

 


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16   CHAPLAIN'S CORNER
By Chaplain Jack Poe

 

Law enforcement officers are a brave breed of unique men and women. They know up-front the risks that are involved in their line of work, yet they choose to place their lives on the line every single time they put on their uniforms and walk out the door to go to work. Their journey through life often places them in situations seldom seem by the majority of the members of the communities in which they serve. More often than not they encounter the rude and the crude who make their living by taking from others.

Most of the time, what they take are material things that for the most part can be replaced. Sometimes they take that which can never be replaced. Sometimes they take that which can never be replaced, human life. Every 57 hours in the United States, a law enforcement officer's life is taken in the line of duty. Law enforcement officers take an oath of office in which they promise to protect and serve. Providing that protection and service to the community means they live "in the valley of the shadow of death." Chief McBride has often described the world that needs police as being made up of two types of people. The Takers and the Givers.

On the evening of September 29th, one of the Takers took one of the Givers. Our community will never be the same. Officer Delmar Warren Tooman gave his life in the line of duty, faithful to his promise to protect and serve. Warren was a living witness to what he believed. The poem, The Living Sermon, sums up Warren's life nicely. Part of it reads, "I'd rather see a sermon than hear one any day. I'd rather one would walk with men than merely tell the way. The best of all the preachers are the ones who live their creeds. For to see good put in action is what every body needs. I may not understand the high advice you give, but there's no misunderstanding how you act and how you live.

Warren had attached to his rear view mirror this verse of scripture. "And the Lord shall deliver me from every evil work, and will preserve me unto his heavenly kingdom: to whom be glory forever and ever Amen." (II Timothy 4:18)

Even though Delmar Warren Tooman, "lived and walked in the valley of the shadow of death" for him, death had no grip on him.. for he had decided a long time ago who was going to shepherd his life. And if death were to come as we know it, he knew he would be ushered into God's heavenly kingdom.

Delmar Warren Tooman has left behind for us a great legacy of service to his community. In the changing world in which we find ourselves today, two thing remain constant: A commitment to service, and: a willingness to do whatever is necessary to keep the peace. Sometimes the price is high. We commit ourselves to upholding the same high tradition. Those famous lines from the poem, "In Flanders Fields" reads, "To you from failing hands we throw the torch: be yours to hold it high". That is our pledge to our brothers who have fallen and the generations that are yet to come. We can do nothing less.

Post-Script:

Do not grudge your brother his rest, he has at last become free, safe, and immortal, and ranges joyous through boundless heavens: He has left this low-lying region and has soared upwards to that place which receives in its happy bosom the souls set free from the chains of matter.

Your brother has not lost the light of day, but has obtained a more enduring light. He has not left us, but has gone on before. -Seneca-

 


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17.  MEN AND GRIEVING
By Charles Collenberger

 

FOR MALES...AFTER A DEATH

You, a man, recently learned of the death of someone YOU loved. You may have been told by a police officer, doctor, or other spokesperson... or possibly you discovered it yourself. It really doesn't matter much whether it was murder, a drunk driving homicide, an accident, suicide, or a catastrophic illness. You are starting down a traumatic road which can, if you allow it, destroy your life.

At first, the sudden shock left you numb. You may even have cried a little. But then the little voice inside said, "Men don't cry." You then talked about what needed to be done, called the rest of the family, arranged the funeral, carried on with life.

You may have looked at the women in the family and found them incapacitated with outward displays of grief. Therefore, you decided to pull yourself together even more taking the pain like a "little soldier."

You kept busy so you wouldn't have time to cry. You met people at the door as will as in the funeral home. You supported your family. You might have remembered for a fleeting moment the last argument you had with the dead person, but it was quickly smothered. You couldn't lose a day of work. You had to pay for all of this.

You cram down the all-consuming anger over the way the death happened but have fleeting thoughts that you would rather be hunting down and killing the person who did this than working so hard to maintain control.

You get through the funeral, and then it's back to normal living, back to associating with people who don't know or don't understand. If you show too much emotion - or any at all-you are looked at with suspicion and run the risk of losing your job. You notice that after one "I'm sorry," colleagues look at the other way, seeming to hope you'll go away. They act like what happened to you is catching. So you bury yourself in your job, even though your lived one is in your thoughts nearly all the time. You try to push them aside and work. So, further down go the feelings, deep into the mind to fester.

Just about the time you think you'll survive, if was a murder or other homicide, the trials starts. Each minute detail comes out. Your loved one is attacked by the defense attorney. You realize that the killing is considered a crime against the State rather than against your loved one, and you don't count except as evidence. It takes days for the trauma of a few minutes to be relived. Even if the case is "won" an emptiness accompanies it. There can be no true justice. And, of course, appeals and other efforts to reverse the decision begin immediately and can continue for year.

You may begin to notice that come of the women in the family seem to have cried themselves into a semblance of recovery. They have cried together. They may have joined a therapy or self-help group. Because they seem to be doing a little better, you can't talk to them for fear of appearing weak and maybe sending them back into grief. So you draw away...and feel guilty about it.

You may begin to accept overtime or take on more than you can possibly get done. Extra jobs, which at first helped with burial expenses, continue to be an escape from facing up. You spend less time at home facing the guilt from which you must escape.

Sleeping may have become a problem, and during the day you experience wide mood swings. A well-meaning but foolish doctor may give you some sleeping pills. They help outwardly. They help you forget, so you become dependent on them for day-to-day existence. Perhaps you try more and different kinds.

Evenings are a real problem. You can't talk with your wife anymore, and just sitting watching television doesn't keep the memories from returning. A few drinks might help. Maybe going out with the boys can get rid of the guilt you feel while being with your wife. Maybe your wife is the one who died. You just can't stay home anymore.

 

WHO CARES????

Everybody does! But they are standing outside the barrier you have thrown up around yourself. Their hearts are broken as they watch you destroy the man they love so dearly. But they can't break down the wall. Only you can break down this impassable, invisible wall.

 

HERE'S WHAT YOU MUST DO:

  • FORGET that "men don't cry."
    FORGET to hide your feelings.
    FORGET that it's not manly to ask for help.

  • BUT MOST IMPORTANT OF ALL, allow yourself to cry long and loud until you begin to recover. It won't be easy. Years of crippling training have to be undone. It takes tremendous courage to cry...almost as much courage as it did not to cry all these days.

Your life will never again be the same. You will not have your loved one back physically. Your relationship with him or her is changed, and now it is memories that you hold in your heart. No one can take those away. But you can only cherish the good memories if you are healing. And you will only heal when you allow the tears to flow.

Charles Collenberger has survived the murder of a loved one. He says, "I can cry. I am healing. I am surviving."

 


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18.  HANDLING DISTRESSED RELATIVES AND BREAKING BAD NEWS
C. A. J. McLauchlan

 

Problems associated with breaking bad news in cases of trauma

Death or severe injury is sudden and unexpected
The victim is often young
The prognosis is often unsure
Staff are often very busy
Relatives may already ;have been notified in an unskilled manner
Alcohol intoxication may have been a contributing factor

Coping with major trauma is stressful for both staff and the relatives. Handling distressed relatives is an under emphasized part of the work, and medical staff may have had no training and little experience of it. It is a time that the relative will always remember and, if handled badly, will leave lasting scars.

 

Various outcomes of major trauma

Death
Serious head injury
Multiple injuries
Spinal injury
Major burns
Loss of a limb
Loss of sight

Giving bad news is never easy, but it can be especially difficult in cases of major trauma. The nature of the patient's problem and the bad news can be very varied. The management of the relatives may begin before they arrive at hospital and carry on until well after death or discharge of the patient. The principles of management apply to the accident and emergency department as well as the intensive treatment unit or admitting ward. Providing genuine understanding and support for relatives is the key to their management.

 

Initial contact

When a victim of major trauma arrives in the emergency room the priority is immediate resuscitation. Once the victim has been identified the closest relatives or friends should be notified.

 

Handling the initial contact with relatives

It may be preferable for a police officer and law enforcement Chaplain to make contact in person
Information on the telephone should be given by an experienced nurse or doctor
Relatives should not drive to hospital alone
The full severity of injuries or death may be best explained at the hospital

Communication with the emergency services is very important. The ambulance crew and police, as well as giving information on the incident, may have already seen the relatives or know their whereabouts. It is usually better for a sympathetic law enforcement chaplain and police officer to make the initial contact in person rather than for a telephone call to be made from the hospital. The police may also be able to help with transport.

If the telephone is used, information should be given by an experienced nurse or doctor and a lone relative advised strongly against driving to hospital alone. Mentioning that the victim is unconscious often helps to impart a certain severity to the lay person, although the full severity or death is usually best explained in person at the hospital. If relatives are not told of the victim's death, however, they may blame themselves for not arriving at the hospital in time to be with their loved one at death. It is important to dispel any self recrimination by giving the relatives the exact information, including the time of death. If the relatives have to travel great distances or from overseas the full details, including death, may have to be explained over the telephone. Find out if the relative is alone and, if so, suggest that he or she seeks support locally. Offer to telephone for support.

Anxious relatives should be met by a nurse and not be kept waiting around at reception for the department's or ward's communications to be established. Therefore, it is important that the nursing sister coordinates the information so that the staff, in particular those at reception, know that potentially distressed relatives are expected. They should be welcomed and not made to feel in the way. Staff should remember that it is not only the victim's relatives who may be distress; in some instances close friends may be severely distressed and should be handled in the same way as the relatives.

There should be a private room or office where relatives and friends can wait and be seen. Ideally this room should be solely for relatives and friends and be suitably furnished.

 

Breaking the news

Essential features of a relatives' room:

Privacy
Telephone
Hand basin
Mirror
Appropriate decor and furniture
Advice and information leaflets (out of sight)
Tea cups

Remember to ask relatives for the medical history of the patient. This history may be vital if the patient is receiving certain drugs such as steroids or anticoagulants, and an idea of the quality of life may be useful in elderly victims or those with disease. Providing a history can also make relatives feel less helpless and that they are doing something.

During attempted resuscitation relatives should at least be given early warning if the condition is critical. Regular updates by the same person (usually a nurse) are also appreciated and may help to break the bad news in stages. It also allows relationships to form, which will help in providing the support that may be needed later.

The contact nurse should introduce a doctor, preferably a senior one to the relatives as soon as possible to provide further information. Relatives expect to see a doctor for medical information and an idea of the prognosis: "Will he be all right, doctor?"

 

Advice for the doctor

Breaking bad news has to be tailored to the situation and the particular relatives, but the following principles generally apply:

On leaving the resuscitation area or theater you may be stressed, so take a moment to compose yourself and think about what you are going to say. Also remove evidence of blood stains, etc., so that you are physically and mentally prepared.

Take an experienced nurse with you. A nurse can be a great support and can carry on where you leave off.

Confirm that you have the correct relatives and who's who. Ascertain what information they already have.

Enter the relatives' room, introduce yourself, and sit down near the patient's closest relative. Do not stand holding the door handle like a bus conductor ready to jump out. Giving the impression that you have time to talk and listen is important.

In general look at who your are talking to, be honest and direct, and keep it simple. Be prepared to emphasize the main points. Avoid too much technical information at this stage (although with patients with multiple injuries there may be much going on). If death is probable say so; do not beat about the bush.

After breaking bad news allow time and some moments of silence while the facts sink in.

Be prepared for a variety of emotional responses or reactions. Some people may stick at one reaction whereas others go through several reactions.

Allow and encourage reactions such as crying. Provide tissues and facilities for relatives to make themselves presentable to the world again.

Although it is upsetting, close relatives appreciate the truth and your honest empathy.

At this stage there is no substitute for genuine understanding and support. A sensitive nurse is a great asset.

During the interview it is a helpful and natural comfort for staff to touch or hold the hand of the relative. Various social and cultural factors may influence the appropriateness of touching, but generally if it comes naturally then it is probably right.

Likewise, during the interview it may be natural for the staff to have sad feelings, and these need not be completely hidden. Some sign of emotion may help distressed or bereaved people to release that the staff do have some understanding and it is not just another case.

Avoid platitudes - for example, after a death comments such as "you've still got your other son, etc.," which are not helpful as it is the dead person whom the relatives want back. Also avoid false sympathy as in "I know what it's like," but rather empathize, as in: "It must be hard for you...." or "It must feel very unreal...," etc., reflecting back their emotions.

Encourage and be prepared for questions to be asked during the interview. These may disclose any misunderstandings and present a chance to re-emphasis the message. The questions of pain and suffering is common and should be discussed routinely, with reassurance as appropriate. The prognosis may be unknown initially, and you should say so. If death or serious disability is possible, however, then it is only fair to be honest and warn the relatives. It will be worse shock later if they have been protected from this knowledge. Do not be afraid to answer that you do not know the answers to medical or philosophical questions such as "Why me?" Other difficult questions ;may arise from feelings of guilt or when a relative was involved in but not injured in the same accident. Special problems may arise if the relative feels responsible directly - for example, as the driver in an accident. Other complications may include a recent squabble before the accident with subsequent self recrimination. The "If only..." rumination can be a type of guilt response that is fruitless and should be understood but discouraged at the outset.

If death has already occurred the same principles as discussed above apply. It is important to use the word "death" or "dead" early and avoid euphemisms such as "passes on." The news is usually hard to accept and so it must be as clear as possible, abrupt as it may seem. People usually need an explanations to the cause of death of a loved one. It may be helpful to explain the inevitability in the light of known injuries and that "everything possible was done." Worries about their own first aid at the scene of the accident may need talking through.

Children should not be excluded form the proceedings in the mistaken belief that they need protection. They will be afraid and may have fantasies and feelings of guilt and need information.

 

 

MANAGEMENT OF RELATIVES

 

Seeing the patient

Reality is preferable to fantasy so allow relatives to see even critically ill patients, albeit briefly.

Depending on urgency of further treatment it should usually be possible for close relatives briefly to see the patient before he or she is rushed off to the theater, the intensive treatment unity, or even another hospital. Although distressing, reality is usually preferable to fantasy. Also, sometimes this may be the last time that they will see their lives one alive. In addition, this contact may be beneficial to the conscious patient. Relatives may ask to enter or remain in the resuscitation area during emergency treatment, especially of infants and children. This is not yet generally accepted, but it seems that it can be beneficial provided that they are supported by an advocate such as a sensitive member of staff. Hospital staff may, however, be apprehensive about the presence of relatives, and their feelings must be considered.

 

Seeing the body after death

The opportunity to see the body after death should always be offered and gently encouraged if there is any doubt. Well meaning friends may try and discourage this act, which is an important part of accepting reality.

The imagination is usually far worse than reality, and cruel fantasies about the victim being disfigured or squashed flat can be dispelled. The actions and words of staff when relatives are with the body should give "permission" for relatives to touch, hold, kiss, or say good-bye to the loved one. Nurses will often carefully prepare a body before viewing in the clinical are or chapel. The relative may also like to be left alone with the body.

 

Checklist of actions in the event of death

Notify the general practitioner, other relatives and friends, and the coroner's officer
Ensure that the minister or chaplain has been called if the relatives wish
Give an information or help leaflet to the relatives
Notify the social worker if he or she is available
Give useful telephone numbers and contact addresses to the relatives (including your number)

 

Other actions

Although they are stunned by events, it is often the small touches of care that relatives appreciate and remember, such as being given a lock of hair from their dead child by a thoughtful nurse.

Always ask if there is anyone else whom the relatives would like to be contacted - for example, a close friend or minister. the hospital chaplains can be a source of great support to both relatives and busy staff.

If a mechanism of counseling and follow up exists locally consider borrowing their expertise in appropriate cases of trauma.

 

Follow up

Long term management and bereavement counseling is not within the scope of this article, but arrangements for follow up may need initiating on day one. If the nurse or doctor concerned in the emergency department feels able they can offer to see the relative again. Some departments have a social worker who can provide some practical help as well as coordinate follow up. If death occurs it is helpful to have a routine checklist.

An up to date leaflet explaining official procedures slipped into a relative's pocket is useful for later perusal. participation by the coroner's officer, who may be a policeman, should be explained. Warning relatives of the possibility of them developing symptoms of post-traumatic stress disorder is appropriate in certain cases. (An explanatory leaflet that includes ways to get help would be useful in busy departments.) Such symptoms include depression, anxiety, and flashbacks, with a wide range of severity. also, it may be necessary in follow up to warn them of possible avoiding or unhelpful actions by neighbors. Details of any local organizations, from which help and practical advice can be obtained from trained counselors, should also be given.

 

Staff's reaction

Lastly, do not forget the caregivers. There are many different reactions, the commonest of which are sadness, anger, and guilt. Staff may identify with particular people or situations. For example, a child being killed will be particularly upsetting, especially for staff with children of the same age. Part of the debriefing on major trauma must include an opportunity for members of staff to express their feelings. Hiding behind a defense of excessive concern with composure or tasks should be avoided.

Because of its suddenness and severity major trauma is especially difficult for relatives and staff to cope with. However bad the news is relatives need direct, honest information along with genuine understanding and support. Many doctors find this important part of their work difficult. Reasons have been suggested for this. Awareness may help the situation and lead to a greater emphasis in training.

In short, the principles of dealing with the distressed relative can be remembered as follows:

Empathize. Sit and listen to and reflect back relatives' reactions rather than make assumptions or categorize them. Sit and listen to and reflect back relatives' reactions rather than make assumptions or categorize them. Sit and listen to and reflect back relatives' reactions rather than make assumptions or categorize them. Empathize. Sit and listen to and reflect back relatives' reactions rather than make assumptions or categorize them.

Enable relatives to accept reality and to experience the pain. relatives to accept reality and to experience the pain. relatives to accept reality and to experience the pain. Enable relatives to accept reality and to experience the pain.

Encourage, as in "you will be able to cope" (with help if needed) as in "you will be able to cope" (with help if needed) as in "you will be able to cope" (with help if needed) Encourage, as in "you will be able to cope" (with help if needed)

Encounter your own feelings and express them later, perhaps as part of a debriefing. your own feelings and express them later, perhaps as part of a debriefing. your own feelings and express them later, perhaps as part of a debriefing. Encounter your own feelings and express them later, perhaps as part of a debriefing.

 


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19.   " HOW DO I ASK?"

Requesting Tissue Or Organ Donations From Bereaved Families
Sheila Howard, RN, BSN

Brian was pale and out of breath as he ran into the private lounge where his parents and I were waiting for him. The grief on his parents' faces told him what he least wanted to hear. I reached out to grab him as he fell into a nearby chair; his body shook with retching sobs.

No words were needed: Brian had just lost his bride of 4 months. A driver with a suspended license had run a red light, plowing into Claire's car and killing her instantly. She was 25 years old.

You could feel the pain and outrage in the room. WHY? WHY? WHY?

I had no answer. Who could?

As a transplant coordinator for a tissue bank, however, I did know of one possible thread of consolation. These tragedies are, in fact, the very basis of my job. If the patient meets the eligibility criteria, I approach the grieving family members, console them, and offer them the option of tissue or organ donation.

You might be taking on this responsibility, too: A federal law passed in 1986 requires hospitals to set up protocols to encourage donations for tissue or organ transplants. The hope is that form the devastating sorrow of people like Brian, some good may come for others.

How then, should you ask? How do you talk to families about donation when they've just had their lives turned upside down? And when? To do it immediately doesn't seem right. Yet that's when the donation is usually needed.

Though approaching a family about donation is never easy, two common barriers make it harder. Either our own anxiety and helplessness in dealing with the grieving family or a scanty knowledge of the donation process can stop us.

In-service education can bridge the information gap. But getting ourselves to feel more comfortable about asking is more difficult. My advice is to first acknowledge your feelings of inadequacy. Examining some of the fears, myths, and misconceptions that surround donation can also help.

 

Overwhelmingly accepted

One common myth is that asking for a donation as quickly as we must is insensitive to the family's grief, even offensive, because most people don't want to donate anyway. That simply isn't true.

Nationwide, the concept of tissue or organ donation is overwhelmingly accepted. In recent Gallup polls, for instance, up to 85% of the people surveyed said they'd be willing to donate the tissues and organs of their loved ones.

If so, then why aren't more donating? Well, acceptance of the concept apparently becomes more tentative when the reality hits home. People don't dislike donation; they dislike thinking about their own mortality.

Another reason is that many families who might donate aren't being offered the option at the time of loss.

If someone wanted to donate, you might ask, wouldn't he carry a donor care? Not necessarily. Best estimates show that perhaps on 2% or 3% of the adult population care donor cards. Again, people are reluctant to plan for death, even though donor cards can ease the burden of the donation decision for their families.

Donor cards don't lift that burden entirely, however; the family still must approve the donation. Although donor cards are legal in all 50 states, ;most hospitals also obtain consent from the legal next of kin. Enforcing the legality of the donor card over the family members' objections would only intensify their grief, so their right to refuse is typically respected.

As you approach the family, the, remember that most people are willing to at least consider donation. Their right to refuse ensures that you won't in any way override their feelings.

 

Talking to the family

Before you discuss donation with the family members, be sure, of course, that they've been informed of the death and that the patient is an appropriate candidate.

Your next step is to assess whether the family members are calm enough to discuss donation. Have they truly accepted the death or, in the case of brain death, do they understand that their loved one is dead - and that the ventilation support is to maintain the vital organs only?

One of the public's misconceptions, by the way, is that a potential donor's care will have been compromised for the sake of the donation. Your thorough explanation of the donation process can reassure the family members on this point; you might also let them know that the patient's doctor is in no way involved with the tissue or organ procurement.

Then, try to find out whether the patient had a donor card or whether anyone in the family has mentioned donation. Knowing that before hand can help the discussion go more smoothly.

To properly ask for consent, you'll need to identify the legal next of kin and his relationship to the patient. This is usually the spouse; if there's no spouse, an adult son or daughter (over age 18); if there are no adult children, either parent of the patient; and son on. But bear in mind that usually one family member or close friend - not necessarily the legal next of kin - is the main support person and decision maker. Failure to include this person in the consent process may spell failure to get the family's permission.

As you talk to the family members about donation, remember first of all why you're there: to comfort, help, and support them - and to offer them and option that's now available through your hospital.

If they do react with tears or screams of protest, try not to take it personally. This, too, could be part of their grieving, and not necessarily a rejection of your request or even a sign that they think of it as an "intrusion."

Perhaps the best way to demonstrate how donation can help console bereaved families is to tell you how I approached Brian, the young man whose wife was killed in a car accident.

As Brian moved his hands away from his face, he softly moaned, "Claire, Claire," I placed my hand on his shoulder and stooped down so he could see me clearly. "Brian, my name is Sheila Howard. I'm the transplant coordinator here. I'm so sorry about Claire.... Can I do anything for you? Would you like something to drink - coffee? A soda? Water?

Maintaining eye contact with Brian (without invading his space) helped clam him. Besides trying to give him something to focus on. I wanted him to know that I cared. Even the few minutes I spent getting Brian and his family sodas helped them regain some control of their emotions. They could then start thinking about the necessary calls and arrangements.

You may not always be sure of the exact moment to ask for the donation. Just remember, your first priority is to care for the family members during their bereavement. And the option you're offering can give them some comfort.

"Brian, would you like ;me to call someone for you? Can I answer any questions for you?" His eyes, flooded with tears, never left mine. I added, "Would you like to talk about Claire?"

Yes, he would: "How did this happen?" "Where?" And then, the hardest question: "Did she suffer?"

These questions are universal. Sometimes simply letting the family members talk about their loved one will open the door for more communication. The family needs to know who, why, how, could the death have been prevented? As part of their normal grieving, later, they'll probably want to review the death to see if they could have done anything to prevent it.

Most likely, despite your assurances that there was nothing they could have done, they'll feel anger, guilt, sadness. Yet the answers you give them now can help they resolve some of these feelings afterward.

I answered Brian's questions as truthfully and completely as I could, avoiding clichés such as, "It must have been God's will," "There must be a reason," or " at least she didn't suffer." When I was sure I'd answered all his questions about the accident, I explained my role.

"Brian, losing Claire must be terrible for you. I'm very sorry: I'd like to be able to help. When facing a tragedy like this, many people get a lot of comfort from donating tissue or organs. Our hospital can provide this option for you. Did you know that Claire carried a donor care?"

He nodded. "Yes - anything you can use. Claire and I talked about this once. It's what we both wanted."

What if Claire hadn't carried a donor card? Knowing that the concept of donation is widely accepted, I would have gone on to ask Brian if he'd like to consider the option. He probably wouldn't have thought about it unless someone mentioned it to him.

I'd never start the discussion by asking if the patient carried a donor card. In most cases, the reply would be no, and I wouldn't want to have the door closed on the subject before I could start.

Although Brian had given a resounding yes, I couldn't simply get his signed consent and leave. I had to give him the specific information he needed, such as which organs or tissues could be donated, which blood tests would be needed beforehand, when and how the surgery would be done and who would perform it, how long it would take, what effect the donation process would have on Claire's body and on the funeral arrangements, and what costs would be involved and who would pay them. (The costs of evaluating donor eligibility and the entire donation process are covered by the procurement agency involved.)

I also explained the potential benefits of transplantation. Success wasn't guaranteed, I told him, but important research would progress even if an organ or tissue proved unacceptable for transplantation.

Most important, I made sure Brian realized that he had the right to refuse donation and that his decision wouldn't be held against him in any way.

Only after I'd finished this explanation did I ask Brian to sign the consent form.

As I stood up to leave, I said, "Brian, I know this is hard for you, but many families say it helps to receive some information later about their donation. Would you like to know how many people Claire was able to help? I can't tell you their names, of course, but I'll be able to tell you how she helped them." He smiled slightly.

"Yes, I'd like to know. Yes. It's a way for Claire to live on, isn't it?"

 


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20.   THE WHO, WHAT, AND HOW OF DONATION

 

A recently deceased person can donate either tissue or organs, sometimes both. The two types of donation have important differences.

Organ donation includes vital organs such as the heart, lungs, liver, kidneys, and pancreas. These organs can be donated only by those who have suffered brain-death and whose vital functions have been maintained by a life-support system. The age limit for donating vital organs is 60 or under - for heart donations, much younger.

Once brain-death has been documented and the family's consent for donation obtained, the patient is usually placed on ventilator support to ensure maximum viability of the organs until the actual procurement occurs. Vital organs must be transplanted relatively quickly after being removed from the donor: heart and lung, within 2 hours; heart, within 3 to 4 hours; liver, within 8 to 12 hours; pancreas, within 24 hours; and kidney, within 72 hours.

Tissue donation includes the long bones of the arms and legs, the iliac crests, vertebrae, ribs, facial lata, dura mater, arteries, veins, heart valves, cartilage and ligaments, skin, and corneas.

Tissue donation can be accepted up to 24 hours after the cessation of circulation. Because the patient needn't have been sustained on a life-support system and the maximum age limits aren't as strict, more deceased patients can donate tissue than organs.

Every year in the United States, more than 500,000 operations require bone products for transplantation. Bone is perhaps the most versatile tissue transplanted because it can be cut and shaped as needed.

Some common uses of bone? Reinforcement for areas where bone tumors and cysts have been removed, spinal fusions, and reconstructive surgery. Advantages to the recipient include faster healing, shorter hospital stays, reduced costs, and less discomfort.

In bone and soft tissue donation, a surgical team removes the tissue, which is then sent to a tissue bank to be either freeze-dried or fresh frozen. The tissue may be stored up to 5 years for later transplantation.


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21.  GIVE TO THE FUTURE: SUPPORT ORGAN DONATION

THE CLERGY'S ROLE

 

In the course of performing clerical duties in a hospital setting, you may be requested to offer spiritual counsel to families who are considering donation of the organs of a loved one. This is a sensitive role for a counselor, whether you have had one or one hundred experiences with such a call.

The Uniform Anatomical Gift Act governs organ do nation in the United States. This Act allows individuals to will their organs. Also, relatives of the deceased can make the donation as long as there is no indication of the decedent's wishes to the contrary. Advances in medical science have made it possible to transplant as many as 25 human tissues and organs including the kidneys, corneas, heart, liver, pancreas, skin, and bone. While it is recognized that all are important, this brochure specifically addresses kidney donation and transplantation.

 

Kidney Failure and Treatment Options

Irreversible kidney failure affects many lives. There are now more than 60,000 Americans suffering from permanent kidney failure. When the normal function of both kidneys stops and cannot be restored, medical intervention is necessary to prevent death. Persons with end stage renal disease (ESRD) have two life-saving treatments available to them: dialysis and transplantation.

 

Dialysis

Dialysis is an expensive process of removing toxic materials from a patient's bloodstream. Patients on dialysis must devote many hours per week to this therapy. This schedule alone places great demands on patients and their families. Also, the dialysis process, while life-saving, rarely allows patients to feel as vigorous or health as they did prior to their illness.

 

Transplantation

Patients suffering from irreversible kidney failure often prefer kidney transplantation because of the less restricted life-style that is possible. Also, success rates for kidney transplants are impressive and are improving. Even through a cure for this disease has yet to be discovered, a kidney transplant offers the possibility for return to work and daily activities.

Kidneys for transplantation come from two sources: living related donors and cadaveric donor. For a number of reasons, it is not always possible for a family member to donate a kidney. The majority (nearly 75%) of transplants are made possible by cadaveric donations. If a sufficient number of cadaveric kidneys were donated, many more patients could receive kidney transplants. Although about 9,000 kidney transplants are performed in the United States each year, another 13,500 Americans remain on waiting lists because not enough kidneys are available. Obviously, donated kidneys are desperately needed.

 

The Option of Donation

When a family is faced with the loss of a loved one, the suggestion of organ donation can be overwhelming. The decision may not be an easy one, especially if the family has never discussed the issue. Your role, then, is one of offering support and answering questions as objectively as possible.

 

Working as a Team

While experienced health care professionals will already be on hand to respond to the physical, medical, and some psychological aspects, you have a fundamental role in offering support and religious guidance. Although you may not be the person who first presents the option of organ donation to the family (usually the request is made by a medical team member), you are often one of the key individuals to whom a family will turn to help with the decision. Good communications with health care team members is imperative to effective counseling. Two requests for donation may be as disconcerting to a family as no request at all, and family denials must be respected. In the event that family consent is given, all future arrangements for the organ donation are the responsibility of the health care team, but communications should be maintained if on-gong pastoral counseling is taking place.

 

Frequently Asked Questions

The specific questions family members ask are as varied as the individuals themselves. The concerns listed below are among those most frequently expressed about organ donation.

Is there any possible conflict between saving life and using organs for transplantation?

Many safeguards exist to prohibit such conflict. Organ donation occurs only after all efforts to save life have been exhausted and death is legally certified. The doctor who certifies death is not the one who removes the organs.

How are the donated organs used?

Sophisticated, modern communications can rapidly locate those patients with kidney failure who are waiting for compatible kidneys. Usually, donation of kidneys allows two patients the opportunity for transplantation, since a person can function adequately with one kidney.

What happens after the organs are removed?

The body becomes the responsibility of the family or next of kin. There is nothing involved in organ donation that should alter funeral arrangements.

Will the identities of the donor and recipient be kept confidential?

Because of respect for the privacy of both donors and recipients, names are considered confidential information and are rarely released to either party.

Why must this decision be made immediately?

A request for a decision in this hour of grief may seem insensitive, yet timely kidney removal is necessary in order to give life to others. This immediacy does not change the fact that the decision should be carefully considered and acceptable to family members.

Are there financial considerations?

There is no cost to the donor family for organ donation. These costs are wholly the responsibility of the organ acquisition facility. Costs for funeral arrangements, burial, etc., remain the responsibility of the family whether or not an organ donation has been made.

Is it a sin to desecrate the body? Will donation affect salvation?

Just as there are a wide variety of religious practices in our society, so are there many views on death and salvation. Common themes of sacrificial giving, sharing, and healing are found in numerous religious writings. Such themes represent the universality of the highest humanitarian and spiritual ideals.

Does organ donation conflict with religious beliefs of the family?

Religious leaders all over the world support organ donation which is essential to the lives of others. Specifically, some religious denominations have expressed their attitudes in the following faith statements.

A Lutheran tradition: "The decisions concerning replacement therapy have to be made in a responsiveness and responsibility toe the whole web of mankind." "By such a donation the very fact of death may be changed from a total physical loss for one to a second chance of a better life for another.

A Catholic tradition: "The public must be educated. It must be explained with intelligence and respect that to consent explicitly or tacitly to serious damage to the integrity of the corpse in the interest of those who are suffering, is no violation of the reverence due to the dead.

A Jewish tradition: "...there can be no greater Kevod Hamet [honor to the dead] than to bring healing to the living."

What good comes from organ donation"

Organ donation is an opportunity to make a positive, valuable contribution out of a tragic death. it is a considerable comfort for families to realize that they have helped others to live and to lead healthier, happier lives.

 

Summary

It is sincerely hoped that you, as the spiritual counselor, may share in the values of organ donation and transplantation. By supporting the concept of organ donation, you can offer those you counsel an opportunity to feel that something valuable was salvaged from their misfortune. Also, you can join in the concerted effort to enrich life for thousands of persons suffering from irreversible kidney failure.

 


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