Why do cancer patients die
How society deals with dying and death from the perspective of women's self-help after cancer
Dying and death is one of the great taboos in our society. In earlier times several generations lived under one roof. Births, life, death, it was a unity. These family units hardly exist today.
In our groups of women self-help after cancer there are many lonely elderly people who are afraid of having to die alone. But also younger cancer patients who would like terminal care. And it is certainly one of the tasks of the associations of the chronically ill to offer terminal care, as is done in our association.
But what exactly is terminal care? I think everyone expects and sees things differently from their point of view.
But: The first and only decisive thing is: I have to accept the dying person - pick them up - at the point where HE is where this person is standing.
"Today is the first day of the rest of my life", the content of this quote was the thought I had after the diagnosis of cancer. The saying suddenly had a special meaning, at 40 you don't really think about the rest that much - the duration - of life.
I have cancer - I have to die - but not yet!
No, that is impossible, what should become of my children, what of my husband? I love her so much!
Death: surely, someday everyone dies - sometime a long way off - but not now!
Those were just a few thoughts that went through my head back then, 15 years ago.
During the long, uncomfortable therapy, death lost its horror. Yes, sometimes he became a friend who promised rest, redemption, peace.
The fear of death has given way, the fear of "how will I die" has come: of pain, infirmity, long suffering.
It is the same for a great many cancer patients, and it is good to be able to talk about it with one another.
But: how afraid, how lots Sleepless hours could be taken from seriously ill and dying people if there were legally valid living wills for this situation, which would release doctors from the therapy of painful life extension.
The disease cancer is still synonymous with the word death. We often find out when we visit someone who is newly ill. "Do I have to die now?" Is often the first question. Then it is relatively easy to say: "No, I don't think so, I do live I have had cancer for so many years. "This answer is also sufficient. As a new patient, I just want the confirmation: No, you will not die (so soon?).
You learn to live with your illness, to accept it. It becomes a part of future life. Once the disease has progressed and death is within reach, we are often asked for help. It is relatively easy to provide information or to find and inform appropriate nurses for this person yourself. Almost all groups have very good contacts with the care facilities, e.g. Caritas, the Red Cross, the on-site social stations, the home care services, etc. The groups of women self-help after cancer do not do any care or housework. We accompany the dying by giving them our time.
However, terminal care is very difficult for people you do not know. There are no points of contact. I don't know anything about the dying man! What preferences does he have, which topics should I avoid, to what extent does he know his real situation? How does he feel about his family?
I think that the helpers in the self-help groups are then overwhelmed. Cancer is almost always a long, chronic disease. So it would be desirable to make contact with cancer patients in a self-help group in good time, if the patient is still doing reasonably well.
We must also not disregard the fact that terminal care is provided for people who are or have been sick with cancer. These are then repeatedly confronted with their own fate. It is simply necessary that there is a certain familiarity, a basis of trust, in order to walk this difficult path together.
This basis exists when life is coming to an end for a person you have known for a long time. Openness is necessary here and, above all, truthfulness.
If such a person turns to me and wants to talk about dying and death, then I have to give him all my attention, my human attention. I have to "listen". And only this person with his questions, fears and concerns should be authoritative for me.
In many cases the relatives do not want the patient to be discussed about the end of his life. He is incapacitated! Arguments such as: it would upset him too much, it is too stressful, he would give up and no longer fight against the disease, death is too terrible, are put forward. It is often the fears of the loved ones that resound from these words. Above all, the children, especially when they are still young, should, in the opinion of the family, remain unencumbered by dying and death! Younger children in particular have a very natural relationship with death if they are not led into constraints that they cannot understand. What an agony for everyone involved.
I want to tell you about my girlfriend. She was 43 years old when she died. She died of metastatic breast cancer, brain metastases. The patient, her family and friends knew about the diagnosis. They were still hopeful that she would be better soon. Soon my friend could no longer walk, she felt terribly dizzy and nauseous, her eyesight deteriorated, death was inevitable and foreseeable.
However, the family forbade the doctor to speak to her about impending death; When he asked me to mediate, this ban also applied to me. In her fear for the life of her wife, mother and daughter, I was threatened with a change of doctor and a ban from the house. Everyone felt miserable and depressed. One day when I went to visit my girlfriend in the morning, she was feeling very bad. I sat down by her bed and she suddenly asks me: "Tell me, will I get well again?" My thoughts raced, lying to her was out of the question and I gave her the answer, rather with difficulty, that she should ask me, please, what I would do if I were her. I told her. We clung to each other and cried terribly together. Then we talked to the family and it was a very good conversation. The time they had together was about My friend had the opportunity to manage all of her affairs, including the funeral service and pastor's talk, and when she died she left her family peaceful and comforted.
How often do families fail to talk to their dying people? How often do you want to say something important or unimportant to yourself? I think that here, too, there is a task for us to very carefully lead these people to discussions with one another, also to have an enlightening effect. It is far too little known, for example, that people who are in a coma perceive their surroundings but are no longer able to express themselves.
Another point is the pain of the dying. It still happens, in this enlightened world of ours, that the dying at home receive inadequate pain therapy. Statements such as: the strong painkillers would be addictive or could have a life-shortening effect are unethical and inhuman.
But what can we, the volunteers from the self-help groups, still do? Well, what we like to do is take some of the burden off the families. We sit down at the bedside of the seriously ill and dying, giving the families time and space for themselves. This means that you can go to the doctor, run errands, go to the hairdresser or just go for a walk on your own without any time pressure.
So far I have mainly talked about dying at home, in the family. Most people, however, die in the hospital. Be it that the care for the relatives becomes too difficult, that the dying person is at home alone or for completely other reasons. We have to live with this fact.
But there, too, care for the dying is possible for us, as in the patient's apartment. There, too, we can sit by the bed and talk to him or keep silent. If so desired, we can say a common prayer there too. We have time, because the time has to be there and we are unencumbered by care and other constraints. Prayer is very often dismissed as nonsensical and unproductive. But we have found that there is a time for that too.
It may be because dying cancer patients have typically fought the disease for years. They are no longer so very young and the youthful rebellion against death may have dried up in the long years of illness. However, and this concerns us all, there should also be the opportunity in hospitals to die in human dignity. Not, as is still practiced, deported to a bathroom or a broom closet, but in a quiet and appropriate environment, with the family or other people who are important to the dying person. However, this also means that the nursing staff and voluntary helpers receive appropriate support and free training opportunities in dealing with dying and death.
The voluntary helpers from the self-help movement see themselves as relief and not as competition to the commercial specialist organizations. Only acting together and, above all, talking to one another can make the hard work a little easier for everyone.
© Friedrich Ebert Foundation | technical support | net edition fes-library | March 1999
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