Who works to heal death
"We have patients with whom we have laughed a lot over the past few days" - a conversation with two palliative care doctors
Two palliative care doctors, one from Ticino and the other from Basel, talk about a new life with death and explain why honesty and hope are not mutually exclusive.
The new disease reached Tanja Fusi-Schmidhauser in Lugano in February 2020, for Sandra Eckstein in Basel it was still a long way off. Eckstein is the head of the palliative care department at Basel University Hospital, and in the following weeks and months she often spoke to her colleague in Ticino. Fusi-Schmidhauser had already cared for many patients with Covid-19. Eckstein and her team tried to learn from their colleague's experience. For this conversation we meet Tanja Fusi-Schmidhauser in her Spartan office in the Ospedale Civico. Sandra Eckstein joins in via zoom.
What exactly happens when a patient dies of Covid?
(Both are silent.)
Sandra Eckstein: Tanja, would you like to answer? You followed more patients.
Tanja Fusi-Schmidhauser: Patients often die relatively quickly. They have a very low level of oxygen saturation and as a result they lose consciousness. Most of the time they don't feel short of breath. Our experience shows that.
Many people fear suffocation.
cornerstone: We take this fear very seriously and ask about it. We have a lot of patients who have to wear an oxygen mask. They find the mask much more uncomfortable than the shortness of breath itself.
What does «die relatively quickly» mean?
Fusi-Schmidhauser: That can be half an hour.
cornerstone: Sometimes we did rounds in the morning and thought the situation was stable, and at night the patient was already dying.
Fusi-Schmidhauser: We weren't prepared for that. There was one day at our hospital in Lugano on which four patients died within two hours. We saw them in the morning, and by noon they were dead. We were surprised by these developments, they have completely changed our everyday lives. We all didn't have the time to think about it and talk about it right now. But we made up for that later.
How have the patients been?
Fusi-Schmidhauser: In the first wave they were isolated and mostly alone, which was difficult for the patients. The loneliness was new to us too. We tried to let the families with their relatives under all necessary protective measures if they were very badly off.
Could the patients even come to terms with death?
cornerstone: We had very different cases. A woman said when she was admitted: "I have finished with my life." Her condition quickly deteriorated and she accepted it with great serenity. It was important for them to know: I am looked after, I am taken care of. My relatives can say goodbye, the pastoral care comes to me. But there were also very old patients who were with us for weeks and had a lot of time to think. It often had to happen very quickly for patients who have to be ventilated. This is an emergency situation in which you don't have time to think about the big questions in life.
How did you experience the relatives?
cornerstone: Many of them were very stressed. They knew, for example: “My mother is in the hospital, I want to say goodbye to her. At the same time, my father is Covid-positive at home. How does that work? How can I take care of both of them? " There were a lot of difficult questions.
What was your role in these dying processes?
Fusi-Schmidhauser: In conversation we tried to find out what the right treatment for a patient is: An admission to the intensive care unit? Does anyone even want that? Or does he stay in the normal department? The treatment itself was relatively simple and clear. The challenges were psychosocial care and communication.
Since the outbreak of the pandemic, there has been a discussion about scarce intensive care beds and what kind of life is worth living.
Fusi-Schmidhauser: We try to discuss with the patient and their relatives which therapies are useful. We consider what kind of quality of life a patient might have after the treatment and whether it would be appropriate for him. There are patients who say: "I've lived my life, I don't want to spend two months in the intensive care unit." Even if they had a chance of recovering from the disease. Others desperately want any treatment, simply because they want to live. What was your experience, Sandra?
cornerstone: In the current situation, I am concerned that patients may feel triaged. This has to do with the fact that many people are afraid that there are not enough beds. This discussion is very present in the media and in the public. But if we can then have an open, appreciative conversation, it usually turns out well. It is important to be gentle. I don't ask: "Do you still find your life worth living?" Many people feel very well what is right for them at this moment.
What was your job during the treatment?
Fusi-Schmidhauser: The patients and their relatives could no longer exchange views directly, so we became the patient's mouthpiece. If the patient was still stable, we tried to establish contact with the relatives using video messages. They were only allowed to come for the dying phase. Then we accompanied them and explained how to behave - at a distance, of course. It was very difficult for everyone. The wife, partner or children come in and still have to stay away.
cornerstone: I noticed that many employees were also unsettled. They wanted to accompany the patients as well as possible. Some had very practical questions, for example: If someone has died, can visitors still go to the bed to say goodbye? We wrote a little guide. We talked to the patients about their wishes. We tried to take their fear away.
What do you say to someone who is afraid of dying?
cornerstone: I primarily listen. I don't downplay the fears, I just am there and try to understand what moves this person. I am then a kind of supporter: medically, but also psychologically. Sometimes the point is simply to put up with dying and acknowledge that it is a dire situation.
What is the patient's concern?
cornerstone: There were many patients who worried about their loved ones who they could not see. They asked: "What happens to you now?" One woman wanted to know what was happening to her husband, whom she had previously looked after at home. We organized someone to help him. Sometimes I organize pastoral care if someone so wishes.
Are you also some kind of substitute pastor?
Fusi-Schmidhauser: I have my role as a palliative care practitioner and the pastor has his. But especially with isolated patients, I also talked about spiritual needs, because they only had a few people they could trust.
Cornerstone: There is a study from Munich that looked into the question of who the patients want to be approached about their spiritual needs. The result was clear: from the doctor. We experience this again and again. Patients look for someone they can trust, someone with a duty of confidentiality and perhaps also with a certain amount of authority. It may well be that the choice falls on us. But we cannot replace pastoral care, we have different competencies. We take a multidimensional approach.
What does that mean?
cornerstone: We try to comprehend the patient holistically, i.e. the physical, psychological, social and spiritual dimension. Of course, if someone is in severe pain and has only a short time to live, I do not take a detailed anamnesis of where they live and how things are with their relatives. There is the so-called dignity question from the Canadian palliative psychiatrist Harvey Chochinov, which can serve as a guiding principle. It reads: What do I have to know about you as a human being so that I can treat you well?
And what's the answer?
Fusi-Schmidhauser: The patient's wishes are most important.
cornerstone: We ask people very specifically about it. Reticent or rather anxious patients are not in bed and seek a conversation immediately. You have to approach them.
What do the dying want?
Fusi-Schmidhauser: Most of them don't want to be alone.
cornerstone: They don't want to suffer and keep their dignity. I also experience that it is difficult for people to talk to their neighbors about what moves them. It can help if I am there to deliver a message. Some patients are also very pragmatic and want to arrange their funeral.
It sounds as if the dying are able to formulate their wishes. Don't you miss the language at the end of your life?
cornerstone: Yes, the pastors tell us that too. If you have not dealt with death in your whole life, you can no longer catch up and cope with everything in the last few hours. Some people don't even know what they want, they just want to be left alone. Others are very reflective.
Fusi-Schmidhauser: In the first wave of the pandemic, we had married couples who were both infected with Covid-19. Perhaps the trends indicated that the woman survived and the man might not. We then wanted to find out what was bothering them and whether they wanted to stay together.
Have you been honest about that?
Fusi-Schmidhauser: As honest as possible. We weren't sure what was going to happen. When we've seen someone's condition worsen significantly, we've openly addressed it. A woman, whose husband was dying, said: "We have been together for forty years, I certainly don't want to leave my husband alone." The two daughters came along too, and the family could say goodbye together.
cornerstone: Honesty is the basis of our work. Patients sense when we are not true. I am often asked whether honesty and hope are contradicting one another and I clearly believe: No. To be honest does not mean to be brutal or rough. It takes a certain cautiousness in honesty.
Fusi-Schmidhauser: If the situation is critical and a patient knows that he will die soon, we want to understand: What does hope mean? It is no longer about living as long as possible, but perhaps not feeling any pain, not having difficulty breathing, being able to say goodbye to loved ones. We adjust hope, it is also part of dying.
cornerstone: A patient once said to me: "Before talking to you I was afraid, and now I can see doors that have opened again, now I see what is possible." I thought that was a beautiful picture. The unspecific, diffuse fear is often worse than knowing what could happen. Even if it means to die.
Is it about creating certainty in uncertainty?
Fusi-Schmidhauser: You could say it that way. We talk about what is realistic, what could happen.
Are people more afraid of dying than they are of dying?
Fusi-Schmidhauser: Many patients are afraid of dying because they are afraid of suffering. But there are also those who are more afraid of death, of parting. They don't want to leave their family alone.
cornerstone: To die also means to say goodbye to yourself, to let go of your own life. For many people this is too much and I can understand that very well. At the same time, there are patients who face dying calmly.
Have you learned anything new about death in the past few months?
Fusi-Schmidhauser: I realized again how quickly death can burst into our lives. I knew this from my previous work in the emergency department, where death sometimes comes abruptly - and yet few patients die very quickly. Now we often no longer have time to maintain our rituals, to call relatives in good time so that they can accompany someone, and to prepare the team. I have seldom seen people die alone in recent years. That moved me a lot. The contrasts were stark. For example, once I accompanied a patient who did not have Corona and the whole family was there. It was particularly sad when 24 hours later an elderly patient in the corona department in another hospital died all alone. The daughter did not come because she was afraid of being infected. I am happy that we can better prevent being alone in the second wave.
cornerstone: I also found the loneliness of the patients stressful. I became a palliative medicine specialist in order to provide comprehensive support to people. Now restrictions have restricted our work.
Does this pandemic change anything in our relationship to death?
Fusi-Schmidhauser: Until the end of February last year, we lived in a hypertechnological medicine that gave us the impression that the possibilities were endless. I noticed this when I spoke to patients: They were convinced that there was still an alternative, still a therapy. Death was repressed.
Fusi-Schmidhauser: The past few months have taught us that medicine cannot cure everyone. The pandemic has brought death back into our lives. We're back to where we were maybe a hundred years ago. Death is a certainty for all of us, it unites us in finitude. Perhaps this pandemic is a reminder that we shouldn't live life as if death didn't exist.
cornerstone: We exclude him less. He is more in our midst again. We are all closer to death. There are more younger people who write a will or fill out an advance directive.
Are the boys also afraid of death?
cornerstone: There were people in the first wave who tested positive for Covid-19 and neither suffered from severe symptoms nor were particularly at risk. But they had a massive fear of dying. After the diagnosis, they were worse off than cancer patients. They felt that Covid was a death sentence. Probably because the disease was so present. Everyone was confronted with it all the time. I tried to absorb the fears and explain that they actually had a good prognosis. That was a big challenge, which our psychosocial care team in particular was concerned with. We knew: the majority of Covid patients survived.
Last year, over 7,000 people died of Corona in Switzerland. You don't really talk about her that much.
Fusi-Schmidhauser: I watch that too. Much is said about the number of infected people and the number of hospitalizations. But the death rate is pushed aside a bit. Perhaps the public shouldn't be burdened too much, a kind of protective measure.
Cornerstone: Perhaps there is also a shame to talk about death - or relatives find it difficult for other reasons. We have to take care of these people, because for many the farewell was traumatic, especially because rituals were missing, because there was no funeral, for example.
Can you make up for grief?
Fusi-Schmidhauser: We should pay close attention to what happens to these grieving people over the next few months and years. We have to make sure that we catch up on certain rituals, otherwise the relatives cannot process their pain. And then grief can become pathological, a chronic burden.
cornerstone: Grief is not linear, it is dynamic like a spiral. It makes perfect sense to open rooms for it again at a later point in time. But not all people have the resources inside them. If someone is still sad after a year, others ask: Why? Especially when the relative was perhaps older or did not have to suffer. Unprocessed grief leads to persistent chronic stress, in the worst case to trauma.
Fusi-Schmidhauser: We also noticed in this pandemic that there are many feelings of guilt: married couples who have been infected, children who have infected their parents. Then when someone dies they feel guilty. This is something very special that we have never experienced before. These people should be supported.
Would we handle this crisis differently if more younger people died?
cornerstone: We would certainly all be more affected, and there would probably be even stronger fears, for example among hospital staff.
Fusi-Schmidhauser: We saw in the 1980s and 1990s with the HIV epidemic that many young patients died. You were very scared at the time. We also see this with diseases such as cancer. When a patient aged thirty or forty dies of cancer, the affliction is greater than when someone dies of the disease at the age of eighty. It wouldn't be any different with Corona.
Is it easier to die if you dealt with death early on?
Fusi-Schmidhauser: Intuitively, I think it helps to consciously think about the fact that life ends sooner or later. Or when you wonder what it will be like if something happens to you. But is it better, after all, to die?
Cornerstone: You can deal with dying all your life, and yet the moment of death changes everything again. When death comes close, a serene person can suddenly become scared. And someone who has resisted can suddenly say: It's a good thing.
Do Ticino people die differently than German-speaking Swiss?
Fusi-Schmidhauser: I don't think they die differently, but they experience death differently. I come from a German-Swiss family and grew up in Ticino. I know both sides well. The Ticino people tend to suppress death. Here it is more difficult to talk to the patient about it. I experience it differently in German-speaking Switzerland, death is more present. An example: Compared to the rest of Ticino, there are an excessive number of residents in the Locarno region with living wills. The explanation is obvious to us: Many retired German-speaking Swiss live in Locarno who are more concerned with death.
How does culture influence death? Do other countries deal with death differently than the Swiss?
cornerstone: We are a very heterogeneous society. I am also experiencing this in the hospital at the moment. There are relatives from southern Europe who are more likely to complain and demand the maximum possible medical measures to the point of death. This can also be people with a Swiss passport, but who have a different cultural background.
Is it difficult?
Fusi-Schmidhauser: Conflicts can arise, for example with life-sustaining measures such as nutrition. In Italy this is often continued until death. We have a different approach here. It is not medically indicated to artificially feed the dying. You're in the middle of a dilemma.
Does Humor Help You Die?
Fusi-Schmidhauser: It's important, yes. I believe that one should enable patients to experience the last phase of life as they have led their entire life. We have patients with whom we have laughed a lot over the past few days.
cornerstone: If we are only concerned and cautious at the end of life, we may take something important away from the patient. Just as grief belongs to the bedside, humor also belongs to the bedside because it is part of being alive. Man is only dead when he is dead. Dying is also alive. Therefore one can laugh.
Fusi-Schmidhauser: You only die once. The Canadian palliative care doctor Balfour Mount has said that the last phase of life is not just about ending things, but also about honoring this moment.
People today are increasingly concerned with the desire for eternal life. Is it actually a good thing that we are dying?
Fusi-Schmidhauser: I think it's right that we go through a cycle, finiteness gives life its meaning, it lets us take certain steps. I wouldn't think it would be good if we could keep putting it off. Personally, I don't want to live forever. Do you want that, Sandra?
cornerstone: No. And I certainly don't want to be kept alive for months in a comatose manner. But I would like to live a while longer. I have often been asked whether my relationship with death has changed as a result of my work. I have an inner attitude. If we consider humans as a developing being, then finitude is also part of it. You don't have to keep thinking in your head that you might be dead tomorrow. But death challenges us, it helps us to take certain steps in life. Death makes something possible in its own way. But he can also be infinitely sad if he comes at the wrong time.
This article is from the January issue of NZZ-Folio on the subject of "On the High Seas" (published January 4, 2021). You can order this issue individually or subscribe to the NZZ Folio.
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