On the Matter of Life and Death

By Michael DiBello

The Death of Ivan Ilyich by Leo Tolstoy provides a chilling and sobering tale of death. Ivan Ilyich is caught up in the everyday routine of what most would consider a patently ordinary life. His main concerns are everyday problems and affairs. He holds an unreflective stance towards death, perceiving it as a simplistic event experienced by the other, not himself. Yet, that all changes when he begins to die. He grapples deeply with the meaning of life, suffering, and death. Questioning the core of his being, he starts to doubt how well he had actually lived his life and experiences an agonizing death.¹

For me, the novel raised several important questions, including: Can we truly live well and meaningfully without thoroughly reflecting on our own mortality? What, if anything, can be done to prevent deaths like Ivan Ilych's and other so called “bad deaths”?

People can live similar lives and die similar deaths. Nonetheless, just as every individual lives in a way fundamentally his own, everyone has a unique encounter with the specter of death. We can die quickly or slowly, painfully or painlessly, in denial or with acceptance, of old age or by accident, bitter or satisfied; the list of descriptions can go on and on.  Most people, when asked, could probably come up with an ideal conception of how they would like to go. While some undoubtedly experience a serene and graceful passing, surgeon Sherwin Nuland explains in How We Die that this is rare. Sadly, a norm for the end of life has become futile life support and unfamiliar doctors and nurses.² Perhaps educating ourselves on what we can more realistically expect to happen to us in the dying process can not only minimize physical suffering but also allow us to appreciate and reflect more deeply on what we distinguish as valuable and important in being a person. Indeed, what tortured Ivan Ilyich was that it was too late for he, himself, to think about what death really meant and hence, what life really meant.

How often do we really think of death in terms of ourselves? The philosopher Martin Heidegger was concerned that conceptualizations of death separate it from the self and are inauthentically placed in the public domain. He argued this was evident through linguistic expression that reduced death to an event that happened to “one” or “they”. As he says, “dying is not an event, it is a phenomenon that should be understood existentially… by its very essence, death is in every case mine, insofar that it ‘is’ at all.”³ Heidegger asks the question: Why is the concept of “dying” only utilized in the context of imminent death? In Being and Time he introduced “being towards death” as a philosophical idea.³ This means that dying is something happening all of the time to everybody, most importantly to oneself, not just to specific people at specific times.

Popular media and culture surrounding medicine play powerful roles in attitudes about death and dying. The latest reports about miracle drugs, while in some ways encouraging, may unconsciously cultivate unrealistic expectations about sustaining life when death is inevitable. These and other technological advances can give the illusion that dying is something we can control and have a choice in, or that the process can micromanaged. It is hard to deny that choice has become an integral part of the dying process in modern medical culture. A plethora of choice can foster hope for people in many medical situations. While hope can bring deliverance, false hope can bring suffering. Nuland explains that doctors (and the patients they influence) may tend to see death as something that must be conquered at all costs, as something for science to overcome. Unfortunately, he says the process devolves into a “puzzle” that must solved, far removed from real human emotions and needs.²

Ars moriendi, or the art of dying,² perhaps is the type of paradigm shift that is needed regarding mortality. Death should not be avoided at all costs, yet it should not always be readily accepted without medical intervention. It is an ambiguous, complex phenomenon that is not conducive to pure ideologies. Just as the artist does not look to science when he paints a canvas, one need not look to science to engage in an intensely personal experience. Doctors and other healthcare workers need not be the only “experts” on dying. Perhaps, ironically, grappling with the nature of mortality and what it entails can be healthy for an individual's sense of personhood. For example, upon learning he was terminally ill, Australian philosopher Julian Young was so inspired that he wrote three books in four years. A terminal patient describes a new-found vividness: “To live in the bright light of death is to live a life in which colors and sounds and smells are all more intense, in which smiles and laughs are irresistibly infectious, in which touches and hugs are warm and tender beyond belief…”.³

Henry David Thoreau may teach a further lesson on death and dying. A great thinker, social activist, and naturalist, he was clearly full of passion for the extraordinary life he lived. However, if we are to trust his comments in midst of a terminal disease, it is clear he gave quite a bit of consideration to his own mortality: “When I was a little boy I learned that I must die, and I set that down, so, of course, I am not disappointed now. Death is as near to me as it is to you”.³ 

1. Tolstoy, Leo, and Richard Pevear. The death of Ivan Ilyich and other stories. New York: Alfred A. Knopf, 2009. Print.

2. Nuland, Sherwin B.. How we die: reflections on life's final chapter. New York: A.A. Knopf :, 1994. Print.

3. Barry, Vincent E.. Philosophical thinking about death and dying. Belmont, CA: Thomson/Wadsworth, 2007. Print.

Mike graduated from Northeastern University in January 2014 with a major in biology and a minor in ethics. He is interested in a wide range of issues in bioethics and how they are applied in today's world.  

Mill and Kant on Feeding Practices: The Case of Mrs. P

By: Samantha Page

In this piece, I apply John Stuart Mill’s “greatest happiness” principle and Emmanuel Kant’s framework emphasizing autonomy to a case study on the issue of feeding practices among dementia patients, especially those with no directly expressed wishes regarding their end of life care. Mrs. P, a patient with declining health due to old age and dementia of increasing severity, is no longer capable of feeding herself and her caregivers must implement either a “comfort feeding only” (CFO) practice or a feeding tube in order to provide her with adequate nutrition (Palecek 580). What complicates the situation further is that Mrs. P has not directly expressed her wishes regarding this scenario, via living will or a conversation with her health care proxy and husband, Mr. P (Palecek 582). Emphasizing both Mill’s value of pleasure over pain and Kant’s priority of preserving individual autonomy justifies a CFO practice as the best accommodation for the patient and her caregivers (Mill 6; Kant 39).

“Greatest happiness” principle. John Stuart Mill stresses the “promotion of pleasure and the prevention of pain” in the lives of human beings, which ultimately justifies prioritizing Mrs. P’s comfort through hand feeding above the physical health she might gain from tube feeding (Mill 10). Although Mrs. P does not recognize family and friends, she still finds comfort in their presence and touch. While Mill does not consider comfort one of the “higher pleasures,” and does categorize health that way, the significance of this distinction shifts relative to the circumstances of Mrs. P’s state (Mill 13). Mill’s recognition of health as a higher human pleasure is contingent on Mrs. P’s cognizance of her health, which no longer exists. Hand feeding also maximizes the comfort, and hence pleasure, of Mrs. P’s visitors and caretakers, because CFO is a much more tolerable practice to bear and implement compared to a mechanized feeding tube. The tube may also cause Mrs. P pain, as the history of the device shows that it can distress patients with dementia who sometimes wake up unaware of the placement of the device and attempt to remove it (American Geriatrics Society). Choosing CFO minimizes the suffering attributed to feeding tubes, while maximizing the comfort associated with hand feeding for all parties.

Autonomy. Emmanuel Kant’s emphasis on autonomy supports hand feeding because the definitive death that results from CFO involves less estimation of the patient’s ambiguous or altogether unknown wishes, and therefore is less compromising of her autonomy. Because Mrs. P’s wishes about end-of-life feeding practices were not explicitly stated, she has little direct autonomy over the situation at hand. In order to best preserve Kant’s prioritization of autonomy, Mrs. P’s caregivers should minimize the circumstances, like the one at hand, in which her wishes are unknown (Kant 39). With CFO, death coincides with the patient’s cessation of eating and resultant malnutrition, starvation, or other similar consequences, and thus is definitive. Comparatively, the constant nutritional intake of tube feeding prolongs patients’ lives indefinitely, risking an eventual coma or persistent vegetative state. Because Mrs. P’s wishes regarding end-of-life care in these circumstances are not necessarily known either, they would force caregivers to consider a new set of questions and to pursue further bioethical debates. This would again force an estimation of the patient’s wishes and may compromise her former autonomy, a risk that implementing CFO could avoid. Further debate about a patient’s wishes also intensifies the distress of family and caregivers involved, ultimately increasing the net pain.

The synthesis of Mill and Kant’s philosophies on a just life and treatment of a “rational being” shows that CFO is the feeding option best suited for Mrs. P because it will promote pleasure and minimize pain, as well protect the patient’s autonomy (Mill 10; Kant 38). If comparable cases were to arise, where notable comfort is gained from touch and there is little to no instruction regarding the situation at hand, CFO should also be implemented because it ensures similar benefits in similar instances. This reasoning suggests that CFO should become the standard care treatment from a “best interests” approach for all dementia patients who find comfort in touch. Fully examining a best interests approach begins a foray into a deeply complicated bioethical issue; however, this case can be generalized, and allows us to use an individual’s most basic sense of pleasure to help estimate what is ethically beneficial care to offer them when their wishes are unknown. 

Samantha Page is a first-year student at Smith College, where she was first introduced to the field of Bioethics. She is interested in studying American history and art history.

Works Cited

Kant, Immanuel. Grounding for the Metaphysics of Morals, with On a Supposed Right to Lie Because of Philanthropic Concerns. Translated by James W. Ellington. Third edition. Indianapolis: Hackett, 1993.

Mill, John Stuart. Utilitarianism. Kitchener, Ontario: Batoche Books, 2001. http://socserv.mcmaster.ca/econ/ugcm/3ll3/mill/utilitarianism.pdf.

“Older Adults with Advanced Dementia Who Can No Longer Feed Themselves Should Be Fed By Hand, Not Fitted With Feeding Tubes, American Geriatrics Society Confirms,” The American Geriatrics Society. September 17, 2013. http://www.americangeriatrics.org/press/news_press_releases/2013_press_release_archive/id:4639 

Palecek, Eric J., et al. “Comfort Feeding Only: A Proposal to Bring Clarity to Decision-Making Regarding     Difficulty with Eating for Persons with Advanced Dementia,” Journal of the American Geriatric Society 58 (2010), 580-84.

Unintended Consequence: Obstructing Patient Choice for Death with Dignity

By: Sue Dessayer Porter

Oregon was the first state to legalize aid-in-dying. Since 1998 it has implemented “Death With Dignity (DWD),” which allows eligible terminally ill people to end their lives peacefully with a legal prescription. 

Contrary to fears asserted by the opposition, there have been neither slippery slopes, nor granny panels, nor hordes of people clamoring to Oregon to die. With over sixteen years of experience, DWD has demonstrated successfully that cautious adherence to the law provides safe choice and dignity with aid-in-dying.

In spite of this flawless record, there is ever-increasing obstruction against choosing this autonomous and personal end-of-life option. The problem? As religious hospitals merge with financially imperiled medical centers or acquire independent medical practices, they are enforcing policies which prohibit doctors from participation with DWD. This restriction applies to all doctors; therefore, a Muslim physician treating a Jewish patient is dictated by another religious doctrine. Doctors are not even allowed to have a conversation with their patients about DWD, so the “duty to refer” is not a consideration.

An unintended consequence?  Oregon’s DWD Act, Section 127.885 s.401 (5) (a), allows a health care provider to prohibit another health care provider from participating in DWD. [1] This was intended as a well-meaning compromise to appease the opposition and move the law forward. In retrospect, lawmakers in the early 1990’s could not have predicted the merger activity by religious hospitals twenty years into the future. However, the state of medical economics has changed so dramatically in the last two decades that private practitioners cannot sustain independently. Therefore, doctors who previously supported patients through DWD can no longer do so, because they are now employed by religious medical organizations. 

Washington state voted DWD into law in 2008 and is facing the same obstacles.

These health care leaders state that they are in savior mode, in that if it were not for them, many communities would be bereft of medical care. They say that they are “driven by a mission to serve the underserved,” with a commitment to help every human being. [2] However, patients requesting end-of-life choices are being denied lawful alternatives. This pervasive barrier to aid-in-dying affects increasing numbers of qualified terminally ill patients who try to avail themselves to DWD. Because their states voted DWD into law, residents of Oregon and Washington reasonably assume that health policy, combined with their doctor-patient relationship, entitles them access to aid-in-dying. Although this is a credible expectation, it is proving to be false too frequently.

Doctors are individually protected by conscience clauses to deny services that are in conflict with their personal beliefs.  Alternatively, as long as freedom of choice is protected for doctors who do not want to participate in specific procedures, the same principle of choice should be guaranteed for doctors who do choose to offer what they consider responsible, ethical, legal and dutiful medical care.  And logically, patients should be assured their rights to legitimate choice and self-determination.

Medical beneficence should be defined by the doctor and patient; it should not be dictated by a separate entity which controls with economic power by acquiring medical practices that cannot sustain independently, due to the current medical business model.

Sue has been a client case manager for Compassion & Choices since 2001, stewarding patients through Oregon’s Death with Dignity Act. She has a Masters of Science in Bioethics from Union Graduate / Mt. Sinai Med. Center (NY), a Masters in Business Admin. from St. Mary's College (CA)  and a diploma from Yale's Interdisciplinary Center for Bioethics (2013). Sue is also a national board member for Compassion and Choices, the leading advocacy organization for end-of-life issues.

 1. http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ors.aspx

2. http://www.nytimes.com/2013/05/13/us/hospital-mergers-in-northwest-