Palliative medicine: the fear of leaving

ChroniquesDuVasteMonde Woman: Mr. Müller-Busch, this is not my favorite topic. I know it's important to talk about the last things, but to be honest, I'm afraid of the end.

Dr. Christof Müller-Busch: Yes, that's the way it is. Woody Allen once said, "I'm not afraid of death, but I do not want to be there when I die."

ChroniquesDuVasteMonde Woman: Why do we have such sensations?

Dr. Christof Müller-Busch: The topic "dying" touches many uncertainties. When you ask people about the most important experiences in their lives, they often talk about situations that involved both farewell and death. Death is something that shapes the survivors. However, as dying and death really are, we do not know that this experiment is yet to come. But we can and must deal with this certainty that belongs to life in advance.



ChroniquesDuVasteMonde Woman: A French proverb dating from the 16th century: healing - sometimes. Relieve - often. Consoling - always. The last two points describe what palliative medicine does today. Why did it take 400 years before we think about making the last phase of life as worthy as possible?

Dr. Christof Müller-Busch: Dying today is less of a natural process than it used to be, which is only determined by the course of a disease. Due to the many possibilities of life-extension medicine, the type and timing of dying have become very dependent on decisions. But do you want to do everything medically possible to prolong your life? Or, in certain situations, can one refrain from doing so and try to make the process of dying as bearable as possible? Previously you did not have these alternatives.



Palliative medicine: accept the limits of life

Professor Christof Müller-Busch is President of the German Society for Palliative Medicine.

ChroniquesDuVasteMonde Woman: In June 2010, the Federal Court of Justice acquitted a lawyer. He advised his client to let her mother, who had been in a coma for years, die by cutting through the feeding tube. Some consider this judgment a milestone in the case-law on euthanasia. They also?

Dr. Christof Müller-Busch: No, not really. The verdict confirms what has long been known in law, but is not always taken into account in homes and by some doctors. In palliative medicine, it is a matter of course that the will and well-being of the person concerned are at the center of the dialogue of all people who accompany him - even if due to illness he can no longer communicate or currently can not decide for himself. If everyone involved communicates well with each other, we do not need methods such as cutting through a nasogastric tube.



ChroniquesDuVasteMonde Woman: More and more people want to determine how they die. Seven million have made a living will and more than 60 percent support active euthanasia. As understandable as this is in a particular case - sometimes I have the impression that today we are dealing with the end of our lives as "efficiently" as with life itself. We want to keep control. Sorrow and despair are not provided for. Is not there a grandiose suppression of the horror that death has behind this omnipotence fantasy?

Dr. Christof Müller-Busch: Of course, repression indicates that something is busy, which is hard to bear. How difficult this topic is can be seen in the emotionally charged debates about so-called active euthanasia. Even surveys on this topic you have to look more closely. In a study by psychologist Christina Schröder of the University of Leipzig, while 60 percent of respondents supported a legal regulation of active euthanasia, only 20 percent would want to claim the killing on request. To suicide only six percent are ready.

ChroniquesDuVasteMonde Woman: And then the doctor comes into play ...

Dr. Christof Müller-Busch: Why is killing in the form of active euthanasia, as well as the support of suicide, taken for granted as a medical task? I find it difficult to regard assisted suicide, as permitted in Switzerland and the Netherlands, as a therapeutic option. No type of death leaves as many questions as a suicide, as understandable as it sometimes is. Although suicide ends a conflict, it does not solve the underlying problem.

ChroniquesDuVasteMonde Woman: What do you mean?

Dr. Christof Müller-Busch: No other type of death raises so many questions about how to work together, about communication and neglect in relationships.There is no kind of death as self-centered as suicide. He who kills himself only sees himself.

ChroniquesDuVasteMonde Woman: How did you come to this?

Dr. Christof Müller-Busch: I remember a 94-year-old patient who, despite severe pain, was desperate to go home to look after his 92-year-old wife, who was also seriously ill. The patient practiced daily walking seven steps on a staircase. And we in the clinic were very proud when we were able to dismiss him. Two days later he hanged himself in the basement of his house. He had to go down exactly seven steps. His wife was left alone. And we were very concerned that we just did not see enough of the social situation of this old couple.

ChroniquesDuVasteMonde Woman: Is not it very often social hardships that cause old or seriously ill people to despair? I consider it cruel to be completely dependent on the help of others as a nursing case. Is this the result of an absolutely individualized society that only an autonomous life seems desirable to us?

Dr. Christof Müller-Busch: We also have to learn to accept that one becomes dependent again in old age and that this is nothing negative. I never imagined that I would wind up and feed my mother once. She was 96 years old and died a few weeks ago. She suffered a lot from being misaligned. But there were moments when she was very clear. Then I realized how ashamed she was that she was no longer the independent, clever, and efficient woman she had been. The loss of independence and autonomy and feelings of shame play a major role in making the last phase of life so stressful for many.

Letting go is the acceptance of finitude.

ChroniquesDuVasteMonde Woman: My mother is also 96 years old. She also has to be washed like a child, sometimes she does not know if it's morning or evening. She too is ashamed to be only a burden.

Dr. Christof Müller-Busch: Yes, this is a very bad transition phase, when you realize how needy you are, and that you can not change it anymore. Many older people then think: I have to get over it now, I've been burdening my family for far too long. The psychiatrist Klaus Dörner once said: The disease of our time is that we have no meaning for others. For the elderly, this feeling of being a burden is a huge problem. And the whole public discussion about pension problems and too many old people reinforces that.

ChroniquesDuVasteMonde Woman: We like to shorten the drama of dying with the lapidary sentence: you just have to let go. But how can you just let go of the only thing you have - life?

Dr. Christof Müller-Busch: Letting go means accepting finitude. From a philosophical point of view, it is lucky not to have to live forever. In everyday life, letting go means becoming aware that you have to break up. From such situations, so is life.

Palliative Physician Christof Müller-Busch took care of his 96-year-old mother until her death.

ChroniquesDuVasteMonde Woman: If it were easy, there would not be the death knell. Is this just a physical process?

Dr. Christof Müller-Busch: No, I think it's mainly the emotional confrontation with the relentlessness of death.

ChroniquesDuVasteMonde Woman: And why does one fall asleep peacefully, and another tortures himself?

Dr. Christof Müller-Busch: That's hard to say, but it has nothing to do with insights or wisdom. I have seen people who were very religious and had a severe death struggle. And I have seen a young mother who could accept her death with great serenity. But in general, very old people are less attached to their lives than people still needed by many. Even in dying situations relationships play an important role.

ChroniquesDuVasteMonde Woman: The essence of palliative medicine is to involve the family in the dying process. What are the biggest problems of the relatives?

Dr. Christof Müller-Busch: In the confrontation with dying, relatives also need distance, and the dying person needs closeness. Some relatives can not afford to be with the dying person for a long time, sometimes day and night. They become ill themselves. That's not necessarily tragic. Because mourning begins even before the death of the other, and that includes thinking of oneself, finding aloofness. Relatives may and should, even while accompanying a dying person, always do something good for themselves and take advantage of offers of assistance without guilty conscience. Not only the dying, but also the relatives must learn to let go.

Palliative medicine involves involving relatives

ChroniquesDuVasteMonde Woman: How to deal with pain and grief? Do I burden my mother when I show her my feelings? How was it with you and your mother?

Dr. Christof Müller-Busch: Yes, that's a problem. It was not so common for us to show emotions.Especially old people vary greatly in their feelings. Sometimes my mother was fine, but she often quarreled. That's probably the same with your mother. However, we hold the feelings of others hard when we are doing bad. If my mother was unhappy, it was hard for me to be with her. Part of good health and dying is to allow feelings and to try to communicate feelings with gestures, looks or words. You should try it anyway ...

ChroniquesDuVasteMonde Woman: And if you have a bad day yourself?

Dr. Christof Müller-Busch: That too should be possible. Relatives are often under a lot of pressure. On the one hand old conflicts come up, also feelings of guilt, that one did not care more before. You want to make everything right now. On the other hand, you feel overwhelmed. I think you can react with impatience in difficult situations. But better is humor.

ChroniquesDuVasteMonde Woman: Dealing with dying makes relationships even more intense?

Dr. Christof Müller-Busch: Yes. What relatives experience when accompanying a dying person is one of the most important experiences of their lives. This also includes telling the mother, the husband, the daughter everything that one would like to communicate. Do the last important things with each other. By the way, this is also true for the dying. An example: We once had a patient who had a great need to tell his wife on his deathbed that he had a lover for 20 years. After this confession, the woman was completely shaken, but later she was very calm. It would have been much, much worse, if she had known after his death, she said. So his decision was right.

ChroniquesDuVasteMonde Woman: In Germany 840000 people die each year. Most would prefer to go out with a good medical care and in the presence of their relatives from life. But we only have 300 palliative wards and hospices. Why is there no more public pressure to promote palliative care?

Dr. Christof Müller-Busch: The topic of dying and death is still a big taboo compared to other countries. The first hospice was founded in London as early as 1967; it was not until 1983 that we had the first palliative care unit at the University Hospital Cologne. In the UK, the hospice movement employs 600,000 volunteers. Here we are proud of 80,000. The Germans still donate more for animal welfare projects or rescue from distress than for hospices.

ChroniquesDuVasteMonde Woman: And some people who work in the field are looked at a little bit obliquely ...

Dr. Christof Müller-Busch: That's right. But this attitude will change. The over 80s are the highest percentage in the population. There will be much help needed. In geriatric medicine, the palliative approach plays a major role. Meanwhile, care is taken in retirement and nursing homes very much on what life story a patient has, under what conditions he suffers and what he needs to feel comfortable.

ChroniquesDuVasteMonde Woman: And if someone has no place in a home or hospice and is cared for at home?

Dr. Christof Müller-Busch: Not every old person needs a special palliative treatment, but everyone needs good support. Seventy to eighty percent of old or sick people could be at home until the very end, if we had a good ambulant palliative care and hospice care in addition to inpatient care.

ChroniquesDuVasteMonde Woman: What is needed for this?

Dr. Christof Müller-Busch: Every doctor should know about planning of preventive care, the basics of pain therapy and decision-making problems at the end of life - also in conversation with relatives. Medicine still has a lot to learn about the physical, mental, social and spiritual accompaniment of a dying person. We all need to learn to deal with life's limits. And the medicine and us humans too.

palliative Medicine

Palliative Care aims to improve the quality of life of patients with incurable diseases whose life expectancy is limited through a holistic approach. Pain therapy should alleviate the suffering as much as possible. And the treatment of stressful physical, mental and psychosocial problems is to help the patients and their relatives in the management of the disease and allow a tolerable dying in dignity.

Professor Christof Müller-Busch, 67 years old, has headed a palliative care unit at the Community Hospital Havelhöhe in Berlin from 1995 to 2008 as head physician for anesthetics with a focus on pain therapy. He is President of the German Society for Palliative Medicine and member of the Central Ethics Committee at the German Medical Association.

"Palliative Pain and Symptom Management" by Emma Jones, MD for OPENPediatrics (March 2024).



Mourning, Healing, Woody Allen, Federal Supreme Court, Leipzig University, Switzerland, Netherlands, Conflict, Grief, Death, Palliative Medicine, Farewell