A peculiar desire

“Mystery creates wonder and wonder is the basis of man’s desire …” (Neil Armstrong) We all have infinite desires. In a sense, it is natural for us to desire anything that we can imagine or conceive. In fact, we were born from ‘desire’ and can’t recall a time when we were without it. The desire moves us, and, in moving us, gives our life direction and meaning. Often, we are not conscious of our desires, and only register them if they are intense or if they come into conflict with other desires. Even wishing to stop desiring is a ‘desire.’ It can be real or unreal, and ‘I hope’ or ‘I wish’ are commonly used interchangeably to express our desires, though have subtle differences. When the desire is something unreal, impossible or hypothetical that is unlikely to happen, it is expressed as a ‘wish’ and when it something real and possible, it is expressed as a ‘hope,’ even though the chance of it occurring may still be small. Read: Quebec tables legislation to allow advance requests for medical assistance in dying A few years ago, one of my patients expressed an unusual desire at the end of a routine visit. Mary (name changed), an 88-year-old woman and breast cancer survivor with stage 4 chronic kidney disease and compensated heart failure, made the special request outlined below. Me: “Do you have any questions or concerns?” Mary: “Doctor, I have one wish!” Me: “What’s that?” Mary: “Doctor. I wish I don’t die on Sunday night or at the beginning of the week.” Me: Taken back for a moment, after a short pause, I ask: “Why?” Mary: “I don’t want my son and his family to find my ‘stinking’ body.” Me: (thinking) In my three decades of practice, I had never had such a request. Mary (explaining further): “Doctor, if I die on Sunday night or the early part of the week, my body would be ‘rotting’ in the house for almost four to five days, before my son and his family find out when they come to visit me on the weekend, and I know that by that time my body would be stinking.” Read: Not being immortal Mary lives alone in her home, after her husband died four years ago and maintains a great demeanor. She was born and raised in England. She emigrated with her husband more than four decades ago and honored her ‘values’ throughout her life. Though lately over the past few years, she is apprehensive at times. Her son lives with his family in a neighboring town, about a 90-minute drive, and visits Mary with his family almost every weekend. After the weekend, she is alone in her home from Sunday night till next weekend, and during the weekdays she doesn’t want to bother her son or his family. Me: “Don’t you have a neighbor or a friend with whom you talk on regular basis, if not daily?” Mary: “Doctor, most of my friends have died and I have a friend who lives in the other part of town, and we both call each other daily in the morning to check on each other. Whoever wakes up calls the other to check in, without any further conversation.” At the end of the day and for the coming weeks, this discussion with Mary remains in my thoughts. It makes me wonder about the intricacies involved in this delicate yet complex issue, in an individual’s mind in the later years of life, when the end is in foreseeable future. We, as physicians, often discuss end-of-life care planning and directives with the patient and their family members, but often fail to consider such nuances. In fact, one of the pitfalls of written communication of end-of-life care is the challenge of appropriate interpretation of the patient’s wishes; that they are equally important and must align with the “values” of the individual patient in such circumstances. In a general sense, values are a culture’s standard for discerning what is good and just in society, and our own values stem from our beliefs or ideas about what we hold important. Often these govern the way we behave, communicate and interact with others, and ultimately these become standards by which we live our lives and make choices. Mary, throughout her life, upheld her values. After her death, she doesn’t want her son or others to find her in a dishevel state. This conflict between her values and the reality, brings her desire to the conscious state. We often seek harmony between our thoughts, expectations and reality to avoid contradictions or dissonance, and this conflict at the subconscious level may be contributing to the apprehension she has been experiencing lately. I make a mental note to discuss this with her during a follow-up visit, understanding that changing an individual’s behavior and beliefs in the later part of life is extremely hard. We as caregivers need to consider such issues and come up with reasonable and practical solutions aligning with the individual’s values and that of society. Meanwhile, another question comes to my mind. Could she be lonely as she lives alone? Sure, being alone doesn’t one is lonely as we could be lonely in a crowd and may experience joy and fulfillment when alone. But loneliness is complex and often an unpleasant emotional response to isolation. Mary lost her friends and many people near and dear to her, including her husband, but she likes her independence and wishes to live in her home if she can. She has a friend that unfortunately lives in the other end of the town, and they both practise ‘the morbid calls’—those daily, almost non-conversational phone calls between two members of a family or friends to check on each other’s status to assure that the other person is still alive. I bring up this conversation at her follow-up visit and try to persuade her to discuss her values and goals with her son. Perhaps she could consider a helper or caregiver at home, who may visit her and may help with errands at home. She remains resistant to such ideas. Eight months later, nature resolved her conundrum as she ends up at a nursing home after a stroke now surrounded by healthcare and support workers. However, in the current era of sub-specialization, care is often fragmented, and such intricate issues are often overlooked by most care providers. It is important to pay attention to such delicate issues, for all care providers involved in the management of individuals with chronic disease. Finally, as John Gregory said in the 18th century, “It is as much the business of a physician to alleviate pain as to smooth the avenues of death … as to cure disease.”1 Advance care planning is integral in caring for patients at the end-of-life, and effective advance care planning can assure patient autonomy at a time when patients have lost their decision-making capacity. But in addition to medical and ethical issues to consider at the end-of-life care, equally important is the need to consider an individual’s spiritual and personal beliefs. The short story highlights that we—the physicians and other healthcare providers—give in our current fragmented care may not consider some of the delicate and important issues that are often important to individual patients but may not be well discerned in the written advance directives. Malvinder S. Parmar, MB, MS, FRCPC, FASN, is a consultant physician and medical director, Internal Medicine at Timmins & District Hospital in Timmins, ON. Reference: Pernick MS. The calculus of suffering in nineteenth-century surgery. Hastings Cent Rep 1983;13(2):26-36.

A peculiar desire

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