One of ways that I explore the complex subject of death and dying is by reading books and discussing interesting arguments and points of view coloured with my personal perspectives. Doctors and hospice workers see and hear many interesting things and try to make sense of them by putting them in some kind of structure while I can respond with what it means to me as a person dying of a terminal illness.
Most recently, I read a book called "How We Die" by Dr. Sherwin B. Nuland. It is a well-known book and covers a lot of interesting territory encompassing how death manifests itself through a variety of diseases and mechanisms. I was most interested in some of his ideas about how one finds dignity in the process of dying.
In particular, he hightlights the idea put forth by others of "psychological autonomy" (Jay Katz) or the right to independent thought and self-determination and the choice by the patient not to exercise it. In other words, while we have the right to make choices regarding our own treatment, as I and many others have, there are many who chose to let others make these choices for us, whether it be our medical team or our loved ones. There is a lot of choosing going on here - choosing not to choose is a choice in itself - but some of it smells of cop-out to me. I can't argue that the choices to be made are tough but who benefits when someone other than the patient is put in the position of making critical decisions of life or death for us? I'm a control freak and will be until I die so I want to make the decisions that affect how I die while I am in a position to make them. I've done this and feel good about it. From my point of view, it just isn't fair to leave these decisions to my dear wife.
Going a little further back, in deciding on no further treatment for my incurable cancer, I have avoided being at the receiving end of a series of experimental drugs and chemotherapy choices that would only make me feel worse and would further tax the health care system. And for what? The real issue here is that many of us are so overwhelmened with the emotional and physical impact of a terminal prognosis that we don't have the psychological strength to exercise the control that we have. I suggest that, in these cases, it is critically important that our loved ones, caregivers and medical team work together with us to ensure we are aware of exactly what is happening to us, what is likely to happen as result of different decisions which must be made, and ensure that our true wishes are taken into account. Help us to help ourselves.
I further suggest that leaving the decisions to the medical team is not necessarily a healthy choice. This is at the heart of the decision of whether to continue treating a condition that is ultimately not going to turn out well and puts our doctors in a difficult position. When charged with the responsibility of continuing to "treat" our terminal illness, we are forcing them to make many large and small decisions that deny the reality that we are going to die regardless and satisfy a perceived need to be "doing something" that may have no benefit at all. The fact that the doctor is obligated to do these things, whether they think they are the right things to do or whether hope is already gone, is patently unfair in my estimation.
I believe that we find dignity in death by the measure of the life we have led up to this point and in ensuring that we make dignified decisions regarding our final days to avoid flailing about in uncertainty. For those who have difficulty with these final decisions, there is lots of help out there. The hospice community is well versed in processes to help and can provide tremendous support through the final days and beyond. If you are having difficulty on your own, then reach out and ask.
No one needs to die alone. We need to know we are dying, the circumstances of our death, and we need to know that we have cleared the way for a good death. A death with dignity. It's the least we can do for ourselves and for our loved ones.
I feel I am on the razor's edge of a balancing act with my medications. The palliative approach to managing symptoms, while working, has me on a fist-full of different medications which all must be fine-tuned. It's taken a couple of months already but my pain is now manageable and I can see a light. However, my fatigue is back and I am becoming more dependant on oxygen so life is not a bowl of cherries. But I soldier on.