Practice in a hospice
Michel Ayguesparsse, Basel Dojo, Switzerland
Abstract : Trained as psychologist, he testifies about his long experience of about 300 accompaniments he made in the End of Life Center, created in the 80ies at the time of the ravages of AIDS. (Switzerland) He worked in a large team, with fifty volunteers.He talks about the « ideal » end of life, the "postcard" death, and the ideas we make of our death : how, with whom, we would like to die... But reality is often quite different from what can be imagined.We also have ideas about what is good for others when they are dying, and how important it is to always check the requests of the patient and his relatives, and help them realize what they wish. There is never A standard solution.Michel points out : « The person who has little time is the dying, who should then have the top priority and full attention. His family and friends circle has more time ».
My relationship with accompanying people at the end of their lives and its origin
My experience with accompanying people at the end of their lives took place in end of life centres or hospices (" Hospice " in German).
Apart from the fact that I am 64 years old and will also die, my relationship with accompanying people at the end of theirs lives, began in the 80s when I had to face death when many of my friends died suddenly because of the ravages of AIDS which started back then. This pushed us to establish a unit within the institution of the Basle Lighthouse Project, whose purpose is to care for people at the end of their lives, in a safe manner, and also to accompany them at home. I led this institution for 12 years and in this context I accompanied about 300 people on their final journey.
I have now changed careers, but this experience has left such a lasting impression on me that I continue in my current work environment. For ten years now, I have been doing supervision for caregivers in hospitals or end of life wards, as well as for Swiss Red Cross volunteers involved in end of life care.
Examples of practice
Through these examples, I would like to broach on ideas that one has about what death, and specifically “a good death” mean.
The delusion of: "I do not have to die "
I'll start with an idea that is not very common in our present group: the delusion of not having to die. When we opened our unit, media interest was huge. So we limited interviews with journalists to one a week. A reporter from the newspaper Zeit, a very serious German newspaper asked me the usual question: "How do you volunteers cope with being surrounded by dying people?" I replied: "Even if there are not many links between us, what connects us is the fact that we all have to die. " that was 30 years ago, and I still see him before me , he stopped taking notes and told me: "But that is not a given , we do not yet know the progress of medicine! " Even last fall in Swiss and German newspapers, there was an interview with an American physicist called Michio Kaku, who is extremely well known in the United States, and the title of the interview was: "It is not a Law of Nature that we must die! " He described all the current research to eradicate death in the future!
This is obviously a pretty extreme point of view, but even as we care for the dying, we are sometimes faced with the far-fetched idea that one should not die. The softer expression of this is: " Not now, I 'm too young , in a year , a month ... "
The ideal, “picture postcard” end of life:
I'll tell you an example of the practice of the time, which illustrates what Roland said Y. Rech in his introduction that the dying can also bring us something.
Alois’ case illustrates that very well. Alois was 24 years old when he came to us in Basle Lighthouse. He was already very sick and weak, and although he was not bed-ridden, he spent a lot of time indoors, visiting other patients, talking to volunteers: he was a model patient. One day he called the unit leader and myself, his parents were sitting next to his bed; he was so weak he was almost unable to speak. We sat down and he said he wanted to tell us something important. He turned to his parents, and I knew how difficult his relationship with them was. His parents were members of an independent church and they were struggling with their son’s lifestyle. He turned towards them, he thanked them for the life his parents had given him and everything he has received from them, without mentioning at all the difficult times they had been through. He then turned to us, thanked us for the stay in the centre. Then he said that the time had come, closed his eyes. The four of us did not know what was happening, and after two minutes, the unit leader stood up , took his pulse and confirmed his death. It's really an ideal death, a dream-like end of life, "picture-postcard”, as we say in German.
If I tell you this, it is also to provoke you, because we are often delusional about death, about how, who will be there when we die, but often the reality is completely different from what we can imagine. We also have misconceptions about what is good for others when they are dying.
The "good" or "bad" end of life for others (our projections about that)
One of the qualities of end of life centres is that there is a lot of work done with volunteers, and so they have plenty of resources, as well as people who have time to accompany others. Since there are so many people interested in caring for the dying, we wanted to know what their motivation was. One day a lady, Mrs. C. joined our volunteer team; she was radiant. She told us she had already helped a lot of old people in a nursing home and she knew exactly what the dying needed in their last moments. The more we talked, the more I was sceptical to integrate her into our team. At the time there were still audio cassettes players, she pulled out a tape, and said: "I can sense whenever someone is dying, and I play this tape." It was Swiss folk music! She would play it whenever people were dying! You may laugh, but this lady was totally earnest and utterly convinced of its effectiveness! It goes without saying that she did not join our team ...
Alone at last!....
Jean David, 45, originally came from Geneva, and wanted to be free to live openly as a gay man far from his family. He was always happy, very handsome... He came to us with a skin cancer and he already had lesions on his face and because of that he came to live with us so that no one would see him in this state. His mother, who lived in Geneva, came to visit him, trying to renew contact with him. She spent a lot of time at the centre by her son’s side. Jean David told his mother and the team on several occasions that he couldn’t cope with this situation. The mother was adamant that she wanted to be there when her son died. The son resisted and did not want to die. The mother continued to come, she would stay in his room and would only leave his side to go to the toilet; there was no way she was going to miss the moment of his passing. However, she also happened to sick and had to undergo a treatment, which she kept postponing. One day she had to accept to leave the centre for 10 hours. Fifteen minutes after her departure, John David died.
We often believe that it is important for the person dying to do so in a special environment, not alone but surrounded by family... Actually, it is essential to check with the patients and their loved ones what they, themselves, truly desire and help them achieve this. Another example is that of a young patient with cancer, Jean Marco. He was first admitted at the University Hospital of Basle with a cancer of the oesophagus. The hospital staff had more and more problems coping with him because John Marco realised that bathing eased his pain and the hospital staff ended up locking all the bathrooms so that he would stop taking baths everywhere! His first request when he came to us was to make sure that he could take baths. In fact, he spent several hours a day in the bath, and it is sitting on the edge of the bath that we had the most beautiful and profound conversations with him.
A dying person may turn out to be a teacher who shows the Way
I have not talked a lot about spirituality.
To come back to the case of Alois, he had a registration form on which he had put "Buddhism" as his faith. I asked him once or twice, what it meant for him, but I never got an answer, it would remain vague. Then I asked myself a lot of questions. He died in the spring and in July of the same year, I embarked on the way and started practising Vipassana Buddhism. So, indeed, we can also see the dying as masters...
What relieved the pain in the bathtub?
One thing I 've learned is that you do not need to understand everything, but simply accept it, if that is what the patient says.
How do you cope, when you're back home, with your experiences of the day ?
There is no separation between the time at centre and the time when I leave, but that does not mean that you do not distance yourself a bit. But things merge into one another. You cannot decide not to think about it. And if you are self- conscious of your own mortality, as I was from a very early age, it's not a problem. But this does not mean that you don’t have to have a healthy, balanced mind-set. We were a great team of fifty people with the volunteers; and we would have feedback sessions every two weeks and could speak up about our experience. It also helps when you know and accept your own limits and are not too upset when you run up against them.
When you see that there is a disagreement between a dying person and his or her family, when you decide to intervene and suggest something?
There is no simple, standard answer and it depends on the situation. There is the dying person who has very little time, so it is better to protect him first, because the family around him has more time.
I remember a case of a mother whose son was no longer able to eat. Yet, when there was no one around, his mother kept on feeding him although he could no longer swallow anything. So, whenever the mother left the room, we had to empty the patient's mouth. It was a kind of a compromise, between letting the mother do what she thought was good for her son, and on the other hand having to get rid of the contents of her son's mouth.
You have accompanied a lot of people, some of whom you knew very well, friends of yours, was there a difference for you?
Every person is different regardless of the relationship, there are also people that I like and others I feel less close to. And so, depending on that relationship, it touches me more or less deeply. I also lost my partner at that time.
In your set up, everyone is trained to care for dying patients, but sometimes people have to do it without prior training. What advice can you give to those who are in this situation?
In a provocative way, I would say that it is not necessary to have a training to care for dying patients. Of course you need some medical knowledge... With death, it's like birth, there are midwives but people can give life without being a midwife just as you can help someone to die without being a professional. I think we are all care givers.
Frauke B. The situation is strange today. Before, we used to die at home, surrounded with family and the body was put on display. Now this is no longer the case, but I think we should restore that tradition once more. It is a good thing to have professionals, institutions, and palliative care because in today’s society, sometimes there is no family or the family is very busy and has no time ... But it would be nice to reaccept the idea that the family is ready to take care once more, and that the possibility does exist for the dying person stays at home with the help and support of ambulatory palliative services. Because dying at home is definitely the best thing. But it is also good that there are these hospices, where the family can be present and find support, it is not only their sole responsibility, but it is important as everyone participates in the process.
What would you do if someone did not accept you as a caregiver?
It happened to us. Boti Moka , who came from Central Africa, would not come to our unit, but there was no institution that would take him. He bit a few of our team. His refusal was very strong. We had to learn to deal with it, he cried out, once we tried to put him in a psychiatric ward, but three hours later they sent him back to us! Eventually, we found a solution by chance: we noticed that one of our rooms on the ground floor had a window overlooking a large tree and we had observed that whenever he was in the garden in a wheelchair, he calmed down. So we made sure he had this room where he could die in peace.
But when the refusal is there, it is there... There is no point in getting into a fight. But if a volunteer wants to care for someone, and is rejected, it is pretty hard to swallow because he would tend to say: "I am so kind! Look at me sacrificing myself " That's why we need psychological monitoring.
Did you ever encounter a situation where there is a dying man, and next to him there is a parent who cannot cope with the situation, who is crying, and suddenly, the dying person cannot stand it either and suffers too.
Yes this often happens, we cannot bear the end of life of a loved one, and again it is up to us to be supportive. But once again, it is the dying person who has very little time and should have priority. This is similar to the moment of birth even if the father faints, we must first take care of the mother and then the father !
What is your advice when both the dying person and his relatives cannot cope?
There is no simple solution. There are different forms of communication in the family. We cannot provide the miracle solution; we can only try to make a difficult communication a little bit easier.
Heike. You can start things moving. Often things remain unsaid or not expressed. So we can try to identify them, and then try to offer something. Not only through communication, what may feel right at that moment can be a ritual, for example. We must try to sense, intuitively, what is good.
We also had examples of loved ones who have lost someone very dear, and even years after that death, the family came to the institution to exchange, to share their experiences with other families. Some of these people offered to help as volunteers.