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Death and Dying RESEARCH ARTICLE | HUMANITIES | FALVEY SCHOLAR 2018 Death and Dying: The Literature, Philosophy, and Practices of Adult and Pediatric End-of-Life Care Simran Kripalani How does one “live a good life?” While it is good to explore what it takes to live a fulfilling life, it is equally important to understand how to confront death. Societally, little to no emphasis is put on death, let alone dying a “good death.” We are immersed in a death-avoidant culture and only give death attention when it impacts us. Is dying a good death possible? What factors play into dying a good death? Does this change when we confront the death of a child-- an untimely death? This thesis is comprised of three parts: a general account of dying a good death and the factors it takes to die a good death, pediatric end-of-life care and dying an early death, and the issues that healthcare professionals must consider. This thesis argues that both adults and children are able to die a “good death,” and that certain factors can help with this process. Because the death of a child is nuanced, there are additional factors to consider, such as establishing a legacy and upholding the role of family and loved ones in a child’s death. In the last part, healthcare professionals illustrate how to work with patients in the end-of-life stage, and how healthcare professionals, as human beings, can aid in the dying process. With more attention, the topics of death and dying can be viewed as more than just a taboo. Introduction if it is viewed from a holistic view: a brief time of Over time and across the world, the meaning goodness or happiness is not enough to have led of dying a good death changed depending on a good and complete life. Aristotle believed that the context of the period. During the prehistoric the human life and “the human good comes to be time (between 2,500,000 to 4,000 BCE), humans disclosed as being-at-work of the soul in accordance anticipated death and dying. During a part of this with virtue” (2). A good life, and, therefore, a good period, the Stone Age, death occurred suddenly death, is one that is whole, complete, and lived in and there was no room for reflection of dying or accordance with reason and virtue. preparing for death (1). Death primarily occurred The Bhagavad Gita, an ancient South Asian due to accidents or via predation, which limited text written at some point between 400 BCE-200 the consciousness and prior thinking that went CE, is not far off from this theme (3). Though this into such an important aspect of life. Therefore, is an influential Eastern text, it still has a common dying a good death was not to be determined by theme associated with the era, as well as with the individual who died. Instead, it was based on the viewpoint of other prominent figures around what the survivors thought—an odd way to end the world. The Gita questions how we can live a based on today’s norms and standards. spiritually meaningful life through the teachings In the Historical-Pre-Modern Time (from 3500 of Lord Krishna and his conversation with Arjuna, BCE to the 15th century), the dying experience leader of the Pandavas. As stated in the Gita, life changed since it was more predictable than before. is not just what is on earth, but what transcends Most of these deaths were associated with old age after it. Like Aristotle, the Gita shows that a or infectious diseases, such as smallpox, which led good and complete life is a continuation of one’s to dying in a more gradual and prolonged manner physical life here on earth: whether it is by future in comparison. This allowed the dying to have a kin, according to Aristotle; or by a non-material more active role in their death and allowed them existence, according to Lord Krishna. Krishna to ponder the meaning of what it meant to die well. teaches in the Gita that, “Whoever, at the end of his In general, a good death meant dying with the help life, quits his body remembering Me alone at once of family and community. The view reflected the attains My nature. Of this there is no doubt” (4). vision that a “good death was the result of a life Achieving Krishna consciousness, or transcendence well lived” (1). and oneness with the Lord is important at death, Aristotle, the prominent Western and Greek but for a pure soul and to have lived a good life philosopher during this time, corroborates this means that one should practice this consciousness viewpoint. For him, a good life is one that is and remembrance from the very beginning of life. complete, and “the complete is what is chosen Again, having lived a virtuous and pure life is what always for itself and never on account of anything leads to a good death. else” (2). Consequently, the human life is good only While people may believe that Eastern and Kripalani, Veritas: Villanova Research Journal, 1, 45-76 (2019) 45 RESEARCH ARTICLE | HUMANITIES | FALVEY SCHOLAR 2018 Western ideas and lifestyles are opposites, both of the Institute of Medicine: “decent or good death their conceptions on death and dying are not so is one that is free from avoidable distress and far off from each other. Not only do Aristotle and suffering for patients, families, and caregivers; in the Bhagavad Gita have a lot in common on this general accord with patients’ and families’ wishes; subject, but St. Augustine also has a similar view and reasonably consistent with clinical, cultural, on death and dying. In St. Augustine’s City of God, and ethical standards”. To die a good death meant the same principle of life transcending an earthly to end with the least amount of suffering for life is referenced, as it is in the Gita. Therefore, by both the patient and their loved ones, all while emphasizing a life without materiality and placing considering other areas of life that are important significance on the afterlife, Augustine states that to the patient. This complex understanding of we should not be concerned with how we will what meant to die a good death led to the rise of die. Whether you are wealthy and lead a more palliative care and hospice movements, starting lavish life, or if you are poor but are good and one with the opening of St. Christopher’s Hospice with God, death is inevitable and it will not have in 1967 in London, England. Elizabeth Kübler- mattered how you led your life with material and Ross, psychiatrist and pioneer in palliative care earthly possessions when you are faced with death. and hospice care, furthered this movement by Saint Robert Bellarmine furthers this idea in his developing and explaining the famous stages of work, The Art of Dying. St. Bellarmine believed dying, as well as coming up with ways to help in an essential spiritual aspect of dying well, and terminally ill patients make peace with the natural wanted to incorporate the process of dying into process of death. The World Health Organization living. He believed that death produced by sin is then expanded the definition of palliative care to evil, yet can bring you blessings such as ending be an interdisciplinary way to improve quality of miseries of life. He was characteristically known life for both patients and their families so that they for his belief that if you want to die well, you must are able to make peace with their death. By helping live well by loving God and living a simple, pure medically, physically, emotionally, psychologically, life. By furthering that a good death is not only and spiritually, healthcare professionals can ease a part of dying, but also a large part of life and the hardships and thoughts associated with death living, St. Bellarmine echoed the sentiments that and dying and can help individuals die a good previous figures and texts furthered in this era. death. Death and dying during the Historical-Modern While each period has distinct features on what Time (the 16th to 20th centuries), were perceived it means to die a good death, all of them play a role differently due to the rapid development of in painting an accurate picture on what it actually healthcare and technological advancements. The means to die a good death. Yet presently, while main sentiment on death in this era was that dying there is an emergence of palliative and end-of-life a good death was not characteristically determined care and holistic ways to approach dying a good by living a good life. Instead, a good death was one death, there is still a persisting tension between that was well-managed by healthcare professionals ending life well and prolonging it. A good death and medical protocols. It also included involvement does not only encompass the dying moment, but of the patient with the other medical professionals also the life a person led before this turning point. when discussing plans of action and management What exactly does dying a good death entail? To of various aspects of dying, a way to inform the pursue these matters, I will first be examining patient about their probable future. However, when what contributes to a good death. With examples death did occur, it was not viewed as a natural part from Wendell Berry’s Hannah Coulter, Leo Tolstoy’s of life, but rather as a failure that could have been The Death of Ivan Ilyich, Robert Martensen’s A avoided.
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