ON DEATH AND DYING (From Elisabeth Kubler-Ross, M.D.)

Elisabeth Kubler-Ross originally published her book, On Death and Dying, in 1969. It is still considered the major text in working with the dying or terminally ill patient.

Death has taken on such a different meaning and ritual today. Compare Kubler-Ross’s memory of the death of a neighbor:

“I remember as a child the death of a farmer. He fell from a tree and was not expected to live. He asked simply to die at home, a wish that was granted without questioning. He called his daughters into the bedroom and spoke with each one of them alone for a few minutes. He arranged his affairs quietly, though he was in great pain, and distributed his belongings and his land, none of which was to be split until his wife should follow him in death. He also asked each of his children to share in the work, duties, and tasks that he had carried on until the time of the accident. He asked his friends to visit him one more, to bid good-bye to them. Although I was a small child at the time, he did not exclude me or my siblings. We were allowed to share in the preparations of the family just as we were permitted to grieve with them until he died. When he did die, he was left at home, in his own beloved home which he had built, and among his friends and neighbors who went to take a last look at him where he lay in the midst of flowers in the place he had lived in and loved so much. In that country today there is still no make-believe slumber room, no embalming, no false makeup to pretend sleep. Only the signs of very disfiguring illnesses are covered up with bandages and only infectious cases are removed from the home prior to the burial.”

In order to understand the wishes of dying patients better, Kubler-Ross and 4 theology students decided to hold seminars to interview a dying patient to learn several things. 1. There is an interdisciplinary group if hospital personnel who are eager to learn from the patient. The first question asked is something to the order of, “How sick are you?”

2. How did you find out what your prognosis was?

3. What can we do to better help you through this time?

4. What type of care are you receiving?

5. Would you like for us to visit you again?

Problems that made these seminars difficult:

There was more of a philosophy or question of should we tell a patient he is dying or only tell the relatives?

Some physicians were adamant that their patients no be told of their diagnosis and refused to allow the patient to be interviewed. Kubler-Ross found that most patients were aware of their diagnosis based on the behavior of those around them, even if they did not know the exact diagnosis or outcome.

The changes in the laws that require full disclosure and informed consent have generally eased this total lack of discussion, although there may remain physicians who are still not comfortable in discussing end of life issues with their patients.

What helped most patients was that bad news be conveyed with a sense of empathy. If they were given reassurance that everything possible would be done, that they would not be “dropped”, that there were treatments available, that there was a glimpse of hope– even in the most advanced cases, then patients would continue to have confidence in their doctors and would have time to work through the different reactions to cope with this new and stressful life situation.

Stages of Dying:

1. First Stage: Denial and Isolation Almost all patients interviewed reacted to the awareness of a terminal illness with the statement, “No, not me, it can’t be true.” This initial denial was as true for those patients who were told outright at the beginning of their illness as it was true for those who were not told explicitly and who came to this conclusion on their own a bit later.

Some clients will go to great lengths to deny their illness– they may believe that there has been a mix-up in the lab, or they got the wrong person’s X-rays, etc.

This anxious denial following the presentation of a diagnosis is more typical of the patient who is informed prematurely or abruptly by someone who does not know the patient well or does it quickly “to get it over with” without taking the patient’s readiness into consideration.

Denial, or at least partial denial is used by almost all patients, not only during the first stages of illness or following confrontation, but also later on from time to time. Kubler-Ross believes this is because patients can consider their own death from a while but then have to put this consideration away in order to pursue life.

Kubler-Ross favors talking about death and dying with patients long before it actually happens if the patient indicates that he want to. She believes that a healthier, stronger individual can deal with it better and is less frightened by oncoming death when it is still “miles away” than when it is “right in front of the door”. It is also easier for the family to discuss such matters in times of relative health and well-being and arrange for financial security for the children and others while the individual is still functioning.

Denial is a temporary defense and will be replaced by partial acceptance. Some patients will use denial selectively with staff members or family members where they may discuss getting better since they know these individuals cannot tolerate the thought of their demise.

2. Second Stage: Anger When the first stage of denial cannot be maintained any longer, it is replaced by feelings of anger, rage, envy, and resentment. The logical next question becomes: “Why me?” This stage is very difficult to cope with from the point of view of the family and staff. Typically, the individual will displace his/her anger on others in the environment in a random fashion, making things very unpredictable. People and staff who rush busily around the sick patient remind them that they cannot do many things for themselves now. Wherever the patient looks, he will find grievances. So, the patient makes sure that he Death & Dying 3

is not forgotten. He will raise his voice, he will make demands, he will complain and ask to be given attention, etc. Unfortunately, many of us do not think of the reasons for patients’ anger and take it personally, when it has nothing or little to do with the people who become the target of the anger. When we respond with anger, we only feed into the patient’s hostile behavior. 3. Third Stage: Bargaining If we have been unable to fact the sad facts in the first period and have been angry at people and God in the second phase, maybe we can succeed in entering into some sort of an agreement which may postpone the inevitable happening: “If God has decided to take us from this earth and he did not respond to my angry pleas, he may be more favorable if I ask nicely.”

The terminally ill patient knows that there is a slim chance that he may be rewarded for good behavior and be granted a wish for special services. His wish is most always an extension of life, followed by the wish for a few days without pain or physical discomfort. Most patients will hold out for being able to attend one more special event– a final Christmas, the birth of a grandchild, marriage, etc. Once the event is over, many will continue to bargain for another special occasion. Bargaining is an attempt to postpone; it has to include a prize offered “for good behavior,” it also sets a self imposed “deadline” (the son’s wedding, etc), and it includes an implicit promise that the patient will not ask for more if this one postponement is granted.

4. Fourth Stage: Depression When the terminally ill patient can no longer deny his illness, when he is forced to undergo more surgery or hospitalization, when he begins to have more symptoms or becomes weaker and thinner, he cannot smile it off anymore. His numbness or stoicism, his anger and rage will soon be replaced with a sense of great loss.

With the extensive treatment and hospitalization, financial burdens are added: little luxuries at first and necessities later on may not be afforded anymore.

There may be the added loss of a job due to many absences or the inability to function, a role reversal with the partner, etc.

At this point the patient may need what Kubler-Ross calls preparatory depression. This is a type of depression in which the individual is preparing for the impending loss of all the individuals he loves and everything in his life in order to facilitate the state of acceptance. If he is allowed to express his sorrow he will find a final acceptance much easier, and will probably be grateful to those who can sit with him during this stage of depression without constantly telling him not to be sad.

In preparatory grief, there is little or no need for words. It is much more a feeling that can be mutually expressed and is often done better with a touch of a hand, a stroking of the hair, or just a silent sitting together. This is the time when the patient may just ask for a prayer, when he begins to occupy himself with things ahead rather than behind.

5. Fifth Stage: Acceptance If a patient has had enough time (not a sudden, unexpected death) and has been given some help in working through the previously described stages, he will reach a stage during which he is neither depressed nor angry about his “fate.” He will have been able to express his previous feelings, his envy for the living and healthy, his anger at those who do not have to face Death & Dying 4 their end so soon. He will have mourned the impending loss of so many meaningful people and places and he will contemplate his coming end with a certain degree of expectation. He will be tired and, im most cases, quite weak. He will also have a need to doze off or to sleep often and in brief intervals, which is different from the need to sleep during times of depression. There is a gradually increasing need to extend the hours of sleep.

Acceptance is not a happy stage. It is almost void of feelings. It is as if the pain had gone, the struggle is over, and there comes a time for “the final rest before the long journey.” This is also the time during which the family needs usually more help, understanding, and support than the patient himself.

The dying patient’s circle of interests have now diminished. He wishes to be left alone or at least not stirred up by news and problems of the outside world. Visitors are often not desired, and if they come, the patient is no longer in a talkative mood. He often requests limitation on the number of people and prefers short visits. Communication becomes more nonverbal than verbal.

The Role of Hope In almost all patients, including the most accepting and realistic, all left open the possibility that some cure, a discovery of a new drug, or the last minute success of a research project would be found that would insure their survival. This sense of hope allows the individual to maintain their spirits. If a patient stops expressing hope, it is usually a sign of imminent death.

Two main conflicts are seen in regard to hope. The most painful one is when hopelessness is conveyed either on the part of the staff or family when the patient still needs hope. The second source of anguish comes from the family’s inability to accept the patient’s final stage; they desperately cling to hope when the patient himself was ready to die and sensed the family’s inability to accept this fact.

The Family Family members undergo different stages of adjustment similar to the ones described for patients. At first many of them cannot believe that it is true. They may deny the fact that there is such an illness in the family or “shop around” from doctor to doctor in the hope of hearing that this was the wrong diagnosis.

Just as the patient goes through a stage of anger, the immediate family will experience the same emotional reaction. They will be angry at the doctor who examined the patient first and did not come forth with the diagnosis, as well as the doctor who confronted them with the sad reality. They may project their rage to the hospital personnel who they believe do not care enough, no matter how efficient the care is in reality. The family may experience much guilt an wish to make up for missed past opportunities. The more we can help the relative to express these emotions before the death of a loved one, the more comfortable the family member will be.

When anger, resentment, and guilt can be worked through, the family will then go through a phase of preparatory grief, just as the dying person does. The more this grief can be expressed before death, the less unbearable it becomes afterward.

If members of a family can share these emotions together, they will gradually face the reality of impending separation and come to an acceptance of it together. Probably the most heartbreaking time for the family is the final phase, when the patient is slowly detaching himself from his world Death & Dying 5 including his family. The family often does not understand that the dying person who has found peace and acceptance in his death will have to separate himself, step by step, from his environment, including his most loved ones. How could the individual ever be ready to die if he continued to hold onto the meaningful relationships of which he has so many? The family must be helped to understand that the patient is not rejecting them, but is detaching himself/herself in preparation for death.