When I realized I had breast cancer, I panicked. Fear of death gripped me by the throat. That fear had no factual basis. The chance that I will die in the short term is no greater today than before my diagnosis was made. But fear doesn’t matter. People who are afraid of mice or spiders know this all too well. Everyone knows that he will die someday, and everyone lives as if he didn’t. Death is behind us, and what is behind us we see not. Yet we do not feel that our field of vision is incomplete. Because of the diagnosis, death had looked right at me, just around the corner. Now he is back behind me, in his place. But I don’t trust him anymore. Who knows what he will do next.
The terror that I felt, the terror that every patient feels in similar or much worse circumstances, is picked up by everyone around. And everyone deals with it in their own way. Actually, I have to say: don’t deal with it.
My young adult children were so shocked that their mother, who was never ailing, suddenly had a disease, that they – figuratively speaking – ran away. It was impossible for them to face, let alone talk about Mama having a potentially fatal disease. Neither for me. But when I didn’t get ready to drop dead on the spot, they breathed a sigh of relief, placed diagnosis and consequences where they wouldn’t get in the way, and went on with their lives. Like me, I must confess. Repressing is a very useful and underappreciated coping mechanism.
‘Displacement is a very useful and undervalued coping mechanism’
Family and friends made well-intentioned comments, often so clumsy it was painful. And I noticed that almost everyone knew how to deal with the diagnosis. “You have to stay optimistic, you know!” Actually, this person said, “because I can’t handle it if you’re not optimistic.” The inability of people to endure the suffering of another. That starts early. When our daughter’s favorite rabbit is dead in his hutch one morning, we say we’re going to buy a new rabbit tomorrow. We don’t help the girl feel and express the sadness of Flappie, we don’t teach her that her tears are the measure of her love for the rabbit, we even deny the existence of that special love by pretending another rabbit Flappie directly can replace. Her grief must be put away. Why do we do that? In my opinion, not out of love for our daughter. But because we cannot bear her sorrow.
All the well-meaning comments and advice I received fell into the category: ‘we’re going to buy you a new rabbit’. What’s going on is too bad, we can’t bear it, the suffering must be gone. My agony confronts them fully with their own terror.
I would like to highlight one specific comment. This one is also well-intentioned, but in reality very false: “You will see, you will come out of this stronger.” Here the speaker not only declares a blatant untruth, but also releases himself from the (moral) obligation to support the sick person. After all, it will come out stronger on its own. In short, nice game!
‘The patient’s fear of death makes the doctor aware of his own fear of death’
The doctor who has to treat the patient in agony also suffers from all of the above. Doctors are like people. The patient’s fear of death makes the doctor aware of his own fear of death. And unless he has worked through that agony vigorously, the doctor can no more deal with it than a random passer-by. These things are simply not included in the training. There is only one specialty where doctors are invited to reflect on themselves and their emotions. That’s psychiatry. Most doctors do not become psychiatrists. The internship in psychiatry lasts 6 weeks. On a 6 year course.
The doctor has more experience with death than a random passer-by. But being exposed to suffering and dying is not the same as being able to cope well with suffering and dying. Not with others, not with your own.
And so the reactions of many doctors are painful in their clumsiness. I think everyone recognizes the reaction patterns below.
- The Distant Doctor. Pretend you don’t see what the patient is going through. “I’m there for the chemo, for the rest they just have to be with the nurse.” This doctor is not insensitive: he may feel too much. But it’s too bad. Running away, my children’s reaction.
- The scientist. Technical details, trials, statistical significance. If science is advanced, suffering is not meaningless, and therefore easier to handle.
- The Messiah reaction. The doctor is going to save the patient. Variant of the ‘new rabbit’. All therapies that make sense are unleashed on the patient. Plus another couple that you can question.
- the sick roster. The doctor steps out of his role as a practitioner with appropriate professional distance and becomes a comforter, comes too close, takes over the suffering.
“How did you do that when you were a pulmonologist?” you will ask. I drifted in a different direction. I became more and more convinced that I had to bring my patients to the end of life in a decent way. Don’t treat too much, quality of life at the top, you’re going to die anyway. With that I entered the path of therapeutic nihilism, because not treating or treating with restraint because the patient will die anyway is a self-fulfilling prophecy.. I found myself in the situation of a pastor who is sure that God does not exist, and yet has to preach His mercy every Sunday. It’s good that I stopped.
But no matter how you feel as a doctor: it’s a tightrope walk, and you rarely do it right. Moreover, I see a complicating factor between the doctor, the patient and death. That is the treatment relationship. The doctor can treat, can keep death at bay, or so the patient thinks. The doctor often thinks so too.
And I believe that treatment relationship stands in the way of an essential conversation about meaning, life, suffering, dying and death.
I will discuss this in more detail in part two of this blog.