Palliative Care: An Analgesic in an Impossible Time

BY SHAAN BHANDARKAR

The coronavirus pandemic has forced healthcare providers into a difficult ethical gridlock. How do physicians choose which patients to treat with a serious deficit in essential supplies like ventilators? What consolations can physicians offer families who cannot meet their loved ones in their final moments? In many horrific ways, the pandemic has magnified the importance of end-of-life care protocols in relieving the suffering of dying patients. End-of-life care may present some of the grimmest notions of medicine. Discussing death implicitly accepts the failure of medicine; death sounds antithetical to the very curative purpose of medicine. However, palliative care during end-of-life comprises arguably the most important obligation of physicians. Treatments may fail and the prognosis may look abysmal in the course of care, but that does not necessarily mean that medicine has completely failed the patient. Palliative care offers to attend to the pain and emotional needs of a patient and to make the final moments all the more peaceful in an impossible time. In an unprecedented time where death seems to be the most salient product of modern medicine, palliative care may be able to help physicians and patients cope with the current circumstances while setting the foundation for better post-pandemic health care.

Teri Schiavo suffered a cardiac arrest in February 1990 and fell into a persistent vegetative state. Arguments between her family members regarding withdrawal of her life-sustaining feeding tube sparked international attention.

Confronting the implications of death has been an age-old conundrum in medicine. Despite the sensitivity of the topic, death inevitably accompanies medicine and haunts practitioners of all eras and all cultures. These conversations mostly occurred privately until certain medical cases launched the issue of end-of-life care into the public eye in the late 20th and early 21st century. Dr. Jack Kevorkian, nicknamed “Doctor Death,” was an American pathologist specializing in administering voluntary euthanasia to terminal patients. He would create “mercy machines” which administered a lethal dose with the press of a button for the patient. In Kevorkian’s activism, he asserted a chilling conviction that euthanasia constituted the duty of all physicians. For the medical community, Kevorkian’s arguments struck the ethical core of what it meant to be a doctor. To the shock of the entire nation, one such euthanasia administration aired on CBS’s Sixty Minutes. Usually, Kevorkian’s patients would administer the dose themselves and attest to their consent. However, the ALS patient’s paralysis forced Kevorkian to actively administer the lethal dose himself, for which he was later convicted.  Thus, Kevorkian launched the initial “right-to-die” movement with great controversy, claiming that patients should retain as much control of their death as their life.1 The case of Teri Schiavo and the legal dispute between her husband and her parents, regarding the withdrawal of her feeding tube due to her persistent vegetative state, expanded the scope of cases where euthanasia could apply. Schiavo’s case also highlighted the ambiguity in which family members would be the surrogate in decision-making, as well as overall questions of accountability.2 Especially relevant to the case, the medical community could not even agree on whether Schiavo’s questionable state of consciousness actually qualified as living or as a clinical conclusion of whole-brain death. Kevorkian and Schiavo’s narratives would revitalize a discussion on medicine’s role in assisting terminal patients. Later advocacy for palliative care would conflict with that for euthanasia and hastening of death, sparking global debates on the benefits of these two types of end-of-life care regiments.

Palliative care is about alleviating pain for patients, both physically and psychosocially.

Palliative care is especially distinguished from other branches of health care in its unique allotment of patient autonomy. Palliative care offers a more holistic, multi-disciplinary approach to addressing all the psychosocial needs of a patient for improving their quality of life. Physicians employ palliative care as a synergy of cognitive-behavioral therapy, religious counseling, and medical means of allaying pain. As opposed to being a specialty, it’s more of a style of healthcare that achieved prominence in hospices and the sensitive environs of end-of-life care. However, other branches of medicine such as emergency medicine and oncology have incorporated palliative care to offer similar solace to non-terminal patients. Increasingly more physicians and patient advocates believe that palliative care facilitates more autonomy for patients and their families to make crucial decisions about their health care. Such physicians consider patients and their families as “units of care” to be given accessible and transparent information about end-of-life care options.

In many ways, palliative care represents a positive development in health care and its ability to fully serve patients. For many years during the increasing specialization of medicine, patients viewed health care as a depersonalized field. Patients would seem to be objectified in terms of their pathologies, as a list of symptoms to be managed and an expiration date to be marked as necessary. Abraham Flexner, a 20th century reformer who spearheaded the ideals of modern medicine, cautioned for objectivity and theoretical practice. Patient advocates claimed that these very ideals resulted in producing callous, unempathetic practitioners directly from their experiences as medical students. However, medical schools have responded to a deteriorating public trust in medicine by introducing more simulations of patient contact to emphasize empathy in their medical students.3 Palliative care truly began in Classical antiquity in Greece and Rome, drawing from their rhetoric promoting self-care regimens and an intimate mind-body connection. The Classical world conceived that the practice of medicine should happen in “healing environments” conducive to recovery, a stark contrast to a more commercialized world of medicine now. Hospice care started in Rome and included alternative healing methods like hydrotherapy, music and art therapy, and primitive forms of psychotherapy for healing the body through healing the mind. Unfortunately, end-of-life care and death were tabooed ideas in the Classical world, but that does not make Classical medical concepts completely useless.4 Current palliative care incorporates ancient methods like hydrotherapy as well as music and art therapy, while also prioritizing the emotional and physical comfort of the patient. Palliative care exemplifies the humane side of health care, serving the patient’s true needs in their journey to improve the quality of their lives.

However, several discrepancies exist even in a personalized style of medical management like palliative care. While the medical community and patient advocates have clamored for establishing “advance directives,” preferences for withdrawal of emergency medical care in times of incapacitation, only a quarter of Americans bear a living will. Many other patients may deviate from their priorly expressed preferences (such as regarding dependence on life support or “do not resuscitate” orders) once confronted with impending death. Questions of mental competencies, like in Schiavo’s case, can complicate decisions and create accountability issues. If the patient is incapacitated and has not designated a legal proxy for medical decisions, different family members may disagree on how to proceed. Additionally, medical protocols such as opioid treatments treat pain to only limited extents. The inadequacy and often ambiguity of pain-relieving protocols encourage the medical community to explore a historical alternative: euthanasia, which means “good death” in Greek. Termed as physician aid-in-dying, physicians can prescribe a lethal dose of a pain-relieving drug for the patient to take on their own terms. Palliative care abstains from such a hastening of death and allows death to naturally happen regardless of the pain endured. Some have thus claimed that euthanasia (via physician aid-in-dying) truly allows a patient to decide how they die. Netherlands, Belgium, Colombia, Luxembourg, and Canada have all legalized euthanasia completely. Washington, D.C. and U.S. states like New Jersey, California, Colorado, Oregon, and a few others legalized medical aid in dying after vociferous debates spanning the last two decades. Many physicians advocate for following a primarily palliative approach, with the option (given consent) of resorting to aid-in-dying in drastic cases of pain during active dying. 

Despite the seemingly noble intentions of such a regimen of care, certain cultures and religions frown upon ideas of physician aid-in-dying (PAD is favored as a more neutral term for physician-assisted suicide) as bringing about unnatural death through suicide. Even other opponents suggest that physician-assisted suicide could present as a slippery slope. The Heritage Foundation published an op-ed in 2015 claiming that allowing physicians to classify patients as eligible for death and to administer lethal doses under any circumstances could enable transgressions against the marginalized and vulnerable populations, as has occurred in historical eugenics movements with the mentally ill.5 Such patients may also believe they are financially burdening their families and extracting resources from curative health care. The disability-rights group Not Dead Yet asserted that “assisted suicide laws ensure legal immunity for physicians who already devalue the lives of older and disabled people and have significant economic incentives to at least agree with their suicides, if not encourage them, or worse.” PAD opponents also argue that slogans like “death with dignity” mislead and that a hastening of death would be even more undignified. Especially in cases where the patient is not competent or has been incapacitated, doubt has been cast on the ability of the physician to appropriately inform proxy decision-makers.6 The U.N. Humans Rights Committee has called into question the practices of infant euthanasia in the Netherlands on such grounds, especially since the physician’s opinion is all that can be taken to justify the necessity of euthanasia.5 Thus, PAD opponents believe that aid-in-dying perverts the healing purposes of medicine and severely corrupts the doctor-patient relationship.

The media greatly disapproved and mocked Jack Kevorkian’s right-to-die movement and his “mercy machines” through such cartoons.

We can debate the morality of medical euthanasia and PAD, but palliative care truly listens in to the concerns of the patient and their family while making necessary accomodations. Current medical school curricula do not delve too deeply into delivering palliative care, but such modules could greatly benefit budding physicians in preparing to serve the patient even in the toughest circumstance in medicine: death. Palliative care should also be considered a global public health issue. The World Health Organization supports palliative care as a human right worthy of integration in mainstream medicine, currently instituted with palpable disparities around the globe. 85% of the 56 million yearly deaths occur in developing countries. Research shows that these countries may not be adequately prepared to deliver such care due to lack of specialized staff and limited access to pain-relieving opioids, as high-income countries consume about 92% of medical morphine in the world.7 While end-of-life medical struggles may not be socially constructed in the same way as HIV, AIDS, or malaria, palliative care strikes at a core issue relevant to all members of our growing elderly population. Stigmas around discussing death and disparate cultural expectations further frustrate the global landscape of palliative care delivery. 

Modern medicine represents the best of mankind’s ingenuity and devotion to helping others, but also perhaps the worst of its arrogance. Rapid advancements in medical technologies like CRISPR/Cas9 have created a sense of invincibility and exceptionalism. Western cultures in medicine shy away from transparent discourse about death, due to these delusions and the understandable sensitivity of the matter. Palliative care offers the missing piece to the puzzle to bring the purpose of medicine to fruition. Our medical procedures and technology may fail and have their limits, but our capacity to help others and make the most of their lives is unlimited. Medicine is not all about prolonging the inevitable or about resetting the clock of life. Especially in this time where we find ourselves in an impossible setting of a pandemic, stories of palliative care delivery can inspire a revolution in people-centered medicine. Medicine, in its peculiar position at the nexus of public and private matters, can connect us with our friends and loved ones despite our social distance in these trying times. As the brave and dedicated members of Connecticut Hospice often say, “it’s not how you die, but how you live that matters.” The patient should never be reduced to a list of mere pathologies. Palliative care rightfully exalts patients as a thread of beautiful social narratives that should not be cut off too soon, but celebrated at their conclusion.

Shaan Bhandarkar is a rising sophomore in Morse College. Shaan is a Neuroscience & HSHM double major from Virginia. He can be contacted at shaan.bhandarkar@yale.edu 

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References:

  1. Stafford, N. (2011). Jack Kevorkian. BMJ: British Medical Journal, 343(7813), 43-43. Retrieved May 24, 2020, from www.jstor.org/stable/23048576
  2. Charatan F. (2005). President Bush and Congress intervene in “right to die” case. BMJ (Clinical research ed.), 330(7493), 687. https://doi.org/10.1136/bmj.330.7493.687-a
  3. Pohontsch, N. J., Stark, A., Ehrhardt, M., Kötter, T., & Scherer, M. (2018). Influences on students’ empathy in medical education: an exploratory interview study with medical students in their third and last year. BMC medical education, 18(1), 231. https://doi.org/10.1186/s12909-018-1335-7
  4. Papadimitriou, J. D., Skiadas, P., Mavrantonis, C. S., Polimeropoulos, V., Papadimitriou, D. J., & Papacostas, K. J. (2007). Euthanasia and suicide in antiquity: viewpoint of the dramatists and philosophers. Journal of the Royal Society of Medicine, 100(1), 25–28. https://doi.org/10.1177/014107680710000111
  5. Anderson, R. (2015, March 24). Always Care, Never Kill: How Physician-Assisted Suicide Endangers the Weak, Corrupts Medicine, Compromises the Family, and Violates Human Dignity and Equality. Retrieved May 15, 2020, from https://www.heritage.org/health-care-reform/report/always-care-never-kill-how-physician-assisted-suicide-endangers-the-weak
  6. Calabrò, R. S., Naro, A., De Luca, R., Russo, M., Caccamo, L., Manuli, A., Bramanti, A., & Bramanti, P. (2016). The Right to Die in Chronic Disorders of Consciousness: Can We Avoid the Slippery Slope Argument?. Innovations in clinical neuroscience, 13(11-12), 12–24.
  7. Singer, P. A., & Bowman, K. W. (2002). Quality end-of-life care: A global perspective. BMC palliative care, 1(1), 4. https://doi.org/10.1186/1472-684x-1-4

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