by Rachel Yang
Graphic design by Geneviève Groulx
Losing a friend to a bacterial infection or the common flu at the age of 25 is undeniably shocking. In a world where modern medicine and skilled physicians are expected to have the answers, such a tragedy seems unthinkable. Strikingly, just over a decade ago, the passing of a young person due to these illnesses wouldn’t have garnered as much attention, as it was commonly perceived as an inevitable part of life with limited ability to intervene with the outcome. However, the past decade has seen an astonishing surge in medical and technological advancement, resulting in a drastic shift in our readiness towards illnesses and an increase in average human life expectancy.1 With this rise in life expectancy comes a new paradigm of death. Now, we have both the privilege and the necessity to contemplate how we want the final chapters of our lives to unfold. This is especially pertinent when dealing with end-stage illnesses like cancer, where patients are now confronted with a plethora of treatment options, each presenting its own ethical quandaries. Should one continue chemotherapy, which may offer perhaps a 25% chance of slowing tumor growth but comes with unbearable side effects that impede quality time with family? Or should one halt therapy, even if it might offer a sliver of possibility of extending survival? My perspective on this matter has been profoundly influenced by Atul Gawande’s book, Being Mortal: Medicine and What Matters in the End. In this article, I present my argument for why, more often than not, palliative care can yield better outcomes for terminal patients and their families when compared to aggressive treatment. While I am neither a medical ethicist nor a physician, I will offer a piece of my insight into this profoundly intricate and multifaceted topic.
When providing medical guidance, physicians rely on ethical principles to navigate their decisions.2 End-of-life care presents a challenging scenario where ethical principles of beneficence and nonmaleficence can collide because there is often no clear-cut line determining when potential benefits (i.e. extension of survival) are enough to justify the associated harm (i.e. treatment side effects).2 Physician and author Atul Gawande highlighted in his book Being Mortal: Medicine and What Matters in the End, that “whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life.”3 He emphasizes the importance of discussing what a patient values most at that juncture in their life. Key questions arise, such as whether the patient seeks to minimize suffering and pain to spend their remaining time with loved ones, or whether they wish to pursue available treatments for a chance at prolonging survival, even if that means enduring challenging side effects. In a Canadian study, patients facing severe illness and their families emphasized the importance of trust and effective communication with their physician as a critical component of quality end-of-life care.4 Despite its apparent simplicity, discussing the topic of death is rather difficult with studies revealing that a mere 35-39% of physician-patient discussions regarding prognosis take place. 5 Death is an ending to a life that should be approached on one’s own terms, lived with dignity and autonomy until the very end. For this reason, without delving into what matters most to the patient in their final days, they may inadvertently choose a treatment path, such as continued aggressive treatment, that does not align with their true desires.
The issue at hand results from the over-medicalization of the end-of-life process. It has become commonplace for individuals to pass away alone in hospital rooms, enduring unnecessary pain during their final days.6 Presently, a typical senior might be someone who recently experienced a heart attack and eventually find themselves making increasingly frequent visits to the hospital, progressing from monthly to weekly. Conversely, an individual might be diagnosed with lung cancer, and despite enduring rounds of chemotherapy, they discover that the cancer has metastasized, with their chances of long-term survival being slim to none. In both cases, these individuals find themselves in a continuous cycle of medical intervention. The central question I wish to address here is: At what point do you say no to making repeated hospital visits and further treatment and instead, pursue palliative care and spend time with your loved ones in your final moments? In a study involving interviews with over 200 patients with advanced cancer and their primary caregivers, it was shown that aggressive therapies within a week prior were associated with higher levels of physical distress, increased psychological distress, and lower quality of death. Conversely, patients in long duration of hospice care showed contrasting results, reporting lower physical distress and a higher quality of death.5 As Gawande aptly observed, a physician’s role is not solely to ensure health and survival in a straightforward manner but to enable overall well-being. The ultimate decision regarding one’s end-of-life journey is a culmination of thought processes that have gone through extensive and rigorous deliberation; therefore, it goes without saying that there can be very valid reasons for someone to pursue additional treatment attempts, even when facing a terminal illness.7 However, my appeal is for individuals to deeply consider their desires for their last days. It is undeniably courageous to fight for survival, both for oneself and for one’s family. Yet, in cases where the prognosis is terminal, and all promising available options have been exhausted, perhaps the wiser course of action is to explore palliative care and savor precious moments with loved ones, rather than enduring aggressive treatments and unnecessary pain during one’s final days.
Sickness and mortality are intrinsic aspects of the human experience. By reshaping our perspective and discourse on illness and the end-of-life, we can effectively advocate for palliative care as an acceptable and rational choice. This approach enables those who desire it to experience reduced suffering and embrace their final days in a comforting environment, enveloped by the warmth of loved ones, all while maintaining their dignity until the very end.
References
1. Statista. Life expectancy (from birth) in the United States, from 1860 to 2020*. 2022. Available from: https://www.statista.com/statistics/1040079/life-expectancy-united-states-all-time/
2. Varkey B. Principles of Clinical Ethics and Their Application to Practice. Med Princ Pract. 2021 [cited 2023 Oct 18]; 30(1):17-28. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7923912/
3. Gawande A. Being Mortal: Medicine and What Matters in the End. New York: A Metropolitan Paperback, Henry Holt, and Company; 2021.
4. Heyland DK, Dorek P, Rocker G, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ. 2006 [cited 2023 Nov 1]; 174(5):627-33. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1389825/
5. Mohammed AA, Al-Zahrani O, Salem RA, et al. Aggressive Care at the End of Life; Where Are We? Indian J Palliat Care. 2019 [cited 2023 Nov 1]; 25(4):539-43. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6812417/
6. Rome RB, Luminais HH, Bourgeois DA, et al. The Role of Palliative Care at the End of Life. Ochsner J. 2011 [cited 2023 Oct 18]; 11(4):348-52. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3241069/7. Matsuyama R, Reddy S, Smith T, et al. Why Do Patients Choose Chemotherapy Near the End of Life? A Review of the Perspective of Those Facing Death From Cancer. J Clin Oncol. 2006 [cited 2023 Oct 18]; 24(21):3490-6. Available from: https://pubmed.ncbi.nlm.nih.gov/16849766/
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