A new beginning
Who gets to decide what is acceptable suffering for a cancer patient? It is quite a fundamental question. This patient likes to decide this question for herself.
Author
Ine van Zeeland
At the beginning of 2025, I celebrate that there is a new beginning, and that I made it through a year without a new tumor. 2024 was, by many standards, a fairly normal year. All year I worked full-time, a little too much even, as many people did. It was also a year in which there was something to celebrate: I earned my doctorate, turned 50 years old, and often enjoyed the company of good friends and family. In the meantime, I regularly had to visit a hospital or other healthcare facility for check-ups and short treatments, but that is not very unusual for someone my age.
The year before was very different. Starting in January 2023, I underwent six months of chemotherapy in different variants, I had surgery and, after recovering, received daily radiotherapy for weeks. My relationship crashed in the midst of all that, and one of the chemo drugs had suicidal tendencies as a side effect. In brief, it was not a great year. There is no silver lining to that experience, something like “I came out stronger” or “I learned a lot.” No, it was grim, and there is no need to sugar-coat that.
What it did leave me with was the Big Question: is life worth that sort of trouble? Not especially my life, which I am quite satisfied with, but life in general. What makes life so much worth living that you would give a year of misery for it? Is continuing to live the highest good, or might I just as well die if to continue living “costs” too much?
The doctors and other healthcare staff treating me were less concerned by such questions. Their main job was to help me survive no matter what. According to medical ethicist Mary Ann Cutter, medicine as an institution is committed to an ‘objective’ variety of minimizing suffering as the highest good, regardless of what patients value most. Consequently, in medicine preventing death, as the worst form of suffering, supposedly trumps preventing other forms of suffering.
This is quite a fundamental matter. I would rather decide for myself what I consider to be the worst form of suffering and whether I wish to accept the consequences of that assessment. I can decide that for myself, because I have no children or partner, and while my family and friends may be saddened by my demise (something I would certainly consider in my assessment), I do not think their input outweighs my own when it comes to what I find bearable. If my friends and family have little influence on what is bearable suffering to me, why would a stranger, a doctor, have more?
By 2025, I still don’t have an answer to my Big Question: is life worth that miserable year? That is no surprise, since humankind has been struggling for millennia with related questions about the meaning of life. The philosopher Wittgenstein even argued that we should not ask such questions, because they have no answers. From a pragmatic point of view, one could conclude that it is for the best that doctors have not waited until I knew whether my life was worth saving. Before I would have had a beginning of an answer, it might have been too late. Although I would not complain about pragmatism, this does not solve the ethical matter of whether it is appropriate to ignore such considerations of patients when making treatment plans. Who gets to decide what makes life worth living?
There are people who believe that cancer patients can make choices in treatment, as if a patient, after receiving a diagnosis, is presented with some sort of menu that offers ‘Treatment X’ with ‘Consequence X’, ‘Treatment Y’ with ‘Consequence Y’ and ‘Treatment Z’ with ‘Consequence Z’, and doctors ask: which one do you want? In reality, I wasn’t asked anything but simply presented with a treatment plan. I asked questions but there was little room for discussion, especially because it was not realistic for me to specialize in oncology in a few months, in order to assess my options with a sufficient degree of expertise.
Some might say: if you do not wish to be treated, you can also just stay away from the hospital. That is correct, but after that extreme choice there are not many other choices anymore, although there will be a quick resolution to the Big Question, namely that it is no longer relevant when you die. The question is not merely about the extremes – life or death – but rather about how much suffering a person wants to bear, if there are options.
While specializing in oncology within a few months was out of reach, I would very much like to have learned more about what was happening to me. At home, I have a small library about my type of cancer by now, but wouldn’t it have been nice if my treatment clinic already had a full library in which patients were helped to more information: ‘Here is where you find more information about your type of cancer, these are the latest important research publications on it, and these are the hours at which you can discuss various treatments with specialists and experts from experience. If you subsequently want to adapt your treatment plan, you can request a consultation with your doctor at the service desk.’ I would by no means want to call into question the knowledge and expertise of medical specialists, but if there are choices to be made about suffering, they can only be made by the individual who will have to undergo it.
Apart from these considerations, I am extremely grateful to the healthcare staff involved in my care and treatment and my friends and family, who were such sweet supporters, and for the healthcare system, society, the luxuries of Western Europe, everything and everyone, for helping me celebrate the beginning of 2025.
Author bio
Ine van Zeeland should perhaps have finished her philosophy studies, since she can't avoid the big questions anyway. She lives and enjoys life in Brussels, cancer treatments notwithstanding. Within the Symphony of Us project, Ine is one of the four patient-researchers who, together with the team, shape and conduct the research.