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Shifting Paradigms for the
End of Life
by William G. Hoy
Editor’s Note: Back by popular demand, this somewhat edited column from 2014 honors hospice caregivers who work tirelessly in helping people “live fully until they die.” Thank you for all you do.
In the next few days, I will address at least three groups of hospice professionals in Orange County, California and a couple of weeks after that, another group in Lincoln, Nebraska. Because of the head injury I suffered last winter, my travel schedule is drastically reduced—but few things in my schedule bring me as much joy or cause me to sense more honor than to interact with these colleagues. My own patients over the years have often referred to these bedside professionals as “angels” and I cannot find a more fitting label.
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 A surprising number of research studies and a truck-load of clinical experience paints the same picture: the vast majority of dying people do notwant to die in hospital Intensive Care Units tethered to mechanical ventilators and other apparatus of medical technology we euphemistically call “supportive care.” When given the choice, most people will forego “extra time” in order to share what time they have with the people who matter most—family members and close friends. Like most of my colleagues in bereavement counseling, I could not even begin to catalog the number of family members with whom I have worked in the weeks and months following a loved-one’s death who lamented, “If we had just called hospice sooner…”
Of course hospice is not the only service available for people who are nearing life’s end. While hospice services are provided to patients who have ended curative care, palliative care teams provide support to patients and families who have serious, unremitting illness, even while curative care is still being sought. The common factor in both kinds of care is that comfort is upheld as a high value. Excellent hospice resources can be found at the National Hospice and Palliative Care Organization (www.nhpco.org) and at the Canadian Hospice Palliative Care Association (www.chpca.net).
 A clearly needed emphasis, however, is the necessity of conversation. Dozens of resources are available to help people carry on these conversations including video and discussion guides from www.considertheconversation.org. Families, faith communities, health care providers, and community agencies all have a vital role to play in helping people talk about life’s most inevitable fact: dying. Discussions must occur about what choices are available at end-of-life, what values are most important to patients and families, and what patients choose to be the non-negotiable factors in treatment.
Most readers know that my “day job” is in mentoring and teaching pre-med undergraduates about the importance of end-of-life and bereavement care; most of these students start medical school this August or next. During these last few days of January, we are talking about hospice program options and the importance of having conversations before a person enters the last era of an illness. In this course, I teach students to practice with their own families by asking questions like, “The last time someone in our family died, how did it ‘go down’ and how would you like it to be different for you?” or “What do you think about hospice care and what are the circumstances under which you think it would be useful in our family?”
My sense is that getting comfortable talking with their own families is an elementary step in becoming more comfortable talking with other families. More important even than having the conversation, however, is having the perspective of importance in thinking about end-of-life options before the end of life. Reading, viewing films such as the 24-minute moving documentary entitled Extremis in class yesterday, writing reflectively, and talking with fellow students about choices at the end of life helps to prepare these women and men to make life better for my generation than we made for the one ahead of us.
The Author: For more than three decades, William G. Hoy has been counseling with the bereaved, supporting the dying and their families, and teaching colleagues how to provide effective care. After a career in congregation, hospice, and educational resource practice, he now holds a full-time teaching appointment as Clinical Professor of Medical Humanities at Baylor University in Waco, Texas.
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Resource Review
 Extremis is a profoundly moving documentary from Netflix available for viewing at no additional charge even with Netflix’s minimum $ 7.99 monthly package; fortunately, this library is available to anyone with a computer and an internet connection. In my opinion, Extremis is worth several months’ payment on its own.
This extraordinary film chronicles a medical team in an urban ICU while they tend to patients and their families. There are “snippets” from several patient stories, but the documentary especially follows the stories of two patients whose families are struggling to make care decisions in the face of very poor prognoses. After viewing the film in class January 29, one of my students’ first response was simply this: “The catalog description for this class ought to say you should never come to class without your Kleenex!” Perhaps that is testimony enough. |
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Your Professional Library
Gawande, A. (2014). Being mortal: Medicine and what matters in the end. New York: Penguin.
 In addition to his role as a top-rated surgeon at Boston’s Brigham and Women’s Hospital, Atul Gawande has become known as an author who simply, elegantly, and straightforwardly takes on the industry of western health care delivery. When friends of mine in California Chandrabala & Rusi Alamshaw gave it to me a couple of years ago, I read the book in three days, unable to put it down.
Readers of this newsletter who make their lives in hospice and other end-of-life professions will find great refreshment in the no-nonsense perspective of this surgeon. His 263 pages are divided into eight chapters, an introduction, and an epilogue; there is a compelling story or fact about end-of-life care on every page. He tells the compelling stories of cases where health care “got it right” and far too many where we “got it badly wrong.” The text seems discouraging at times as Gawande elegantly teases out the facts: care for the aged in North America champions “safety” over quality of life issues such as privacy and control. Too frequently, “long life” has been exchanged for quality in living. An astounding 25% of all Medicare payments are expended in the final months of life, and the limited data from “developed” nations of Europe indicate similar results there. Clearly, Gawande says, things must change.
Training health care professionals—especially physicians—differently is one of those needed changes. Equally important, however, is the necessity of having conversations within families, communities, and houses of worship about preferences for end-of-life care and the values that matter most. With stirring clarity, he declares, “A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives” (p. 243).
My only “critique” of the book, as one who is sometimes called the “grammar Nazi” by my students, is that the book’s bad grammar, informal style, and overall poor editing would receive only a C if submitted as a paper in my class. While the volume may not be a stirring example of grammatically-correct prose, the strength of Gawande’s message overcomes this shortcoming. In the end, this is a fabulous book that celebrates what is right as well as what must be transformed in providing authentic, values-informed care to people at the end of life.
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Wright, A.A., Zhang, B, Keating, N.L., Weeks, J.C., & Prigerson, H.G. (2014). Associations between palliative chemotherapy and adult cancer patients' end of life care and place of death: Prospective cohort study. British Medical Journal, 348 (3), 1-11.
 After the death of a patient, many family caregivers lament that much of life’s quality was sacrificed in the final months of life while patients, family members, and medical teams worked to stave off the fatal consequence of disease. The researchers in this study wondered how providing chemotherapy in the final months of life in the presence of a limited life expectancy would alter how and where cancer patients died.
This study examined 386 terminally ill cancer patients, 216 (56%) of whom were receiving palliative chemotherapy when they began the study, a median of four months before death. After adjusting scores to account for variables, researchers discovered that the use of chemotherapy at enrollment was associated with higher rates of cardiopulmonary resuscitation, mechanical ventilation, or both in the last week of life as well as late hospice referrals. Nevertheless, the use of palliative chemotherapy demonstrated no difference in survival. Patients receiving palliative chemotherapy were more likely to die in an intensive care unit and less likely to die at home, compared with those who were not receiving palliative chemotherapy when enrolled in the study. This study also confirmed that patients receiving palliative chemotherapy were also less likely to die in their preferred place, compared with those who were not receiving palliative chemotherapy.
In the researcher’s concluding comments and policy recommendations, they write:
Our results suggest that less use of palliative chemotherapy among patients recognized to have a life expectancy of six months or less—or more frequent end of life discussions in this group—may reduce intensive end of life care and promote earlier access to hospice services, thus improving the quality of advanced cancer patients’ end of life care. Future studies should determine the mechanisms by which palliative chemotherapy is associated with increased risk of receiving intensive care at the end of life and dying in an intensive care unit and examine explicitly whether palliative chemotherapy is associated with patients’ goal attainment. Our study has important implications for oncology providers, patients with advanced cancer, and caregivers facing decisions about treatment. It suggests that end of life discussions may be particularly important for patients receiving palliative chemotherapy, who should be informed by data on the likely outcomes associated with its use. The findings also suggest the need for oncology providers to elicit patients’ preferred site of death to ensure that patients’ end of life experiences are congruent with their values.
Because of Open Access provisions in the publication of this article, access to this article for downloading and printing is free here.
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