Perhaps one’s views on death change as time goes on, but at the age of twenty-six I find it very difficult to imagine the experience of dying. That scares me, because when it comes to end-of-life care and preparing for someone’s death, all I feel is uncertainty and a profound sense of inadequacy for handling something sacred. I’m not sure what I would recommend to anyone; I don’t even know what I would do for myself.
I did the Five Wishes exercise for myself and found it challenging because I had to question my own decisions throughout. (For those of you who need tough love, get your sh*t together.) Would I really want life support withdrawn if I were in a coma? My first thought is to say yes, because it would be highly unlikely that I would make a miraculous recovery. But what if I did?
Anyone can give a guesstimate as to whether a patient will live or die. But no one can say so with anything more than statistical probability, and statistics don’t apply to individuals. I am risk-averse, but with regards to my own life and death, would I go with the numbers or fight no matter the cost? I don’t have a satisfactory answer, but I hope I can give one sooner rather than later.
During the exercise, I found that I kept returning to values of personal dignity and my family’s comfort. I want the benefits of modern medicine, but only up to my body’s natural limits—I don’t want to become broken bits of a person maintained by a machine if I am not going to return to being myself. I want to be respected by my caretakers, but not coddled. If I am able to choose, I want to be lucid and have time to mull over my life and work, settle my affairs, and give my blessings. Above all, I want to make sure that my family’s business is in order, that they are provided for, and that they will be comforted after I am gone. Other people may have different priorities, but I understand that everyone will have different wishes for their own interpretation of a “good death.”
Articulating individual values is essential to preparing for someone’s death. What makes end-of-life conversations difficult is that those values are buried under the humdrum of everyday living. It is not until moments of crisis that we need those values for spiritual, moral, and medical and legal reasons, but most often, what we get instead are confusion, shock, and frustration. Everyone has different values, but by maintaining respect, patience, and pragmatism in conversations about death, we can find the core of how to remain true to ourselves in what we wish for at the end of our lives.
The job of the physician is to grasp what the patient’s values are and give them the best medical option for maintaining those values. The physician should guide patients and family in medical decision-making that allow for acceptance of death, not feelings of futility or resorting to desperate, excessive measures.
I would urge patients to make their wishes known even if they are young and completely healthy—you can never rule out accident or unexpected misfortune. I would tell them to approach this exercise seriously, but not with dread, and to make sure they are not being unduly influenced by others.
But in medical settings that prize the preservation of life above all else, it is difficult to find the time and space to have conversations about death outside the ICU. There must be more time in our fast-paced medical educations for medical students to struggle with understanding end-of-life care, and more time for physicians to counsel patients and coordinate caretakers and people important to the patient. We need to take ethics, but more importantly, cherishing the patient experience, seriously. Then, we can come closer to developing the arts of dying well in our secular 21st century society.