PAPER CALLS FOR GLOBAL CHANGE ON “BRINGING DEATH BACK INTO LIFE”
A Lancet Commission on the value of death calls for global sweeping change in how death is handled and how the process of death and dying become more balanced and less contradictory. Dying in the 21st century, says the report, finds “ While many people are overtreated in hospitals with families and communities relegated to the margins, still more remain undertreated, dying of preventable conditions and without access to basic pain relief.” Addressing this out-of-balance and “contradictory picture of death is the basis for this Commission.” The authors of this report come from the United Kingdom, Australia, United States, China, Singapore, Malawi, Netherlands, Norway, and India.
The Commission believes that death and dying must be recognized as valuable—and not just normal. The executive summary issues a global call for change: “To achieve the ambition of radical change across death systems we present a series of recommendations, outlining the next steps that we urge policy makers, health and social care systems, civil society, and communities to take…. Care of the dying and grieving must be rebalanced, and we call on people throughout society to respond to this challenge.”
Many are living longer, and death has moved from a family setting to a healthcare setting. Futile treatments continue; families are less knowledgeable about death and dying; and, there is more focus on clinical interventions.” COVID-19 has stressed health systems, and death has become more medicalized.
“In high-income countries between eight percent and 11.2% of annual health expenditures for the entire population is spent on the less than 1% who die in that year.” While some of this is justified, says the report, costs for treatments that continue too long are too much of this spending. The report imagines “changes across death systems—the many inter-related social, cultural, economic, religious, and political factors that determine how death, dying, and bereavement are understood, experienced, and managed.” The complexity of the needed changes is significant.
To improve the value and process of death, the researchers offer five principles, summarized in an article in Cosmos. The researchers outline five principles to improve the value and process of death:
- “Death, dying and grieving must be made more equitable: all people should be able to lead healthier lives and die more comfortable deaths.
- The relational and spiritual process of death must be recognised in addition to the medical event, to allow for better care.
- Families and wider community members should be more heavily involved in caring for the dying, alongside professionals.
- Public conversations and debate about death and grief should be encouraged.
- Death should be recognised as having value.”
In order to seriously rethink death and dying, we must update expectations around death and refocus in order to best serve patients. An article in Webmd notes that in order to achieve the changes envisioned by the paper, “the Commission sets out key recommendations for policy makers, health and social care systems, civil society, and communities.” The article describes these proposed changes:
- “Education on death, dying, and end of life care should be essential for people at the end of life, their families, and health and social care professionals
- Increasing access to pain relief at the end of life must be a global priority, and the management of suffering should sit alongside the extension of life as a research and health care priority
- Conversations and stories about everyday death, dying, and grief must be encouraged
- Networks of care must lead support for people dying, caring, and grieving
- Patients and their families should be provided with clear information about the uncertainties as well as the potential benefits, risks, and harms of interventions in potentially life-limiting illness, to enable more informed decisions
- Governments should create and promote policies to support informal carers and paid compassionate or bereavement leave in all countries.”
The full report, online at the first two links below, explores the issues in depth, offers input from various country’s experiences, describes panels that worked together to address different issues, and shares “an example of a dynamic map of an end-of-life system. The paper also examines some emerging trends. The paper, in section 15, offers recommendations “for all,” “for health and social care systems,” and “to governments and policy makers.” Section 16 shares next steps in this work. Starting now, say the Commission, work begins on their “realistic utopia.” The Commission will seek to raise funding for this work, “welcome partnership with participants from every country and with different perspectives” to work together in this effort. They seek a global network that will work together for reform.
The report ends with their call to all people to join the work to recognize and value the experience of death. The depths of this 48-page paper, and a full review of all of the various sections of reports are at the link to the full paper. Other summary articles, from Cosmos and Webmd are included for further review. (Lancet, online 1/31, https://www.thelancet.com/action/showPdf ; Lancet, 1/31, https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)02314-X/fulltext; Webmd, 2/1, https://www.webmd.com/a-to-z-guides/news/20220201/rethink-needed-death-dying-commission; Cosmos, 2/1, https://cosmosmagazine.com/people/culture/death-dying-overmedicalising-care-lancet-report/)
PALLIATIVE NURSING IS “ESSENTIAL”
“On Becoming ‘Essential’” is an article from Betty Ferrell, Editor of Journal of Hospice and Palliative Nursing. Ferrell traces the history of palliative care nursing, began in 1941 with Jeanne Quint Benoliel, who served with the US Army Nurse Corps in World War II. In the 1960s, Beneoliel, and her colleagues, engaged in research that helped to break the code of silence that existed when physicians and nurses failed to talk with seriously ill patients about the truth about their health.
One thing that they learned in their research was that “nurses took longer to answer the call bells of patients who were expected to die and that patients with the poorest prognoses were routinely assigned to rooms farthest away from nurses’ station. This research by Beneoliel, says Ferrell, “started the conversation about the quality of care of the dying.”
In 1974, Florence Wald started the first hospice in the United States. As she advanced the work of caring for dying patients in the early hospice years, she was “highlighting nurses as central to providing holistic, interdisciplinary care.” The work of these two leaders, says Ferrell, lead to “amazing progress” and, more recently, to palliative nursing as a specialty.
In 1997, Ferrell and her colleagues “made the case for nursing education in palliative care” and began a partnership with the American Association of Colleges of Nursing (AACN). These leaders did an assessment of nursing textbooks, and found that “less than 2% of the content in these leading texts had any relationship to any topic in palliative care.” They then launched the End-of-Life Nursing Education Consortium (ELNEC) project, again partnering with AACN.
The first ELNEC was offered in 2001, and has now trained 1.4 million nurses “and other clinicians trained in all 50 states and 100 countries. AACN’s partnership has been critical, says FerrelI. 2021 ACCN released an updated “Essentials” document. That document outlines four sphere of care: “(1) Promotion of Health and Well-being/Disease Prevention, (2) Chronic Disease Care, (3) Regenerative or Restorative Care, and (4) Hospice/Palliative/Supportive Care.”
Now, Ferrell says, it is a time to pay that responsibility for progress forward. Hospice and Palliative nurse leaders need to support nursing schools, she says, lecture, serve as preceptors, and share clinical expertise. “Palliative care nurses are valuable colleagues for nursing school faculty, as educators revise their curricula to integrate these essentials into courses and clinical rotations.”
Ferrell proclaims, “There has never been a time in our history when palliative care was needed more.” And the supporting schools of nursing, is“Essential.” (Journal of Hospice and Palliative Nursing, February 2022, https://journals.lww.com/jhpn/Citation/2022/02000/On_Becoming__Essential_.1.aspx)
* An article in AXIOS is titled “Humana starts hospice sale process.” The article reviews last year’s purchase, by Humana, of “the 60% of Kindred at Home it didn’t already own, which included Kindred’s home health, hospice and community care business.” Humana’s sale of the hospice is anticipated. The article reveals details about the sales of hospices. One factor impacting hospice sales, says the article, is the unknown future of hospice carve-in to Medicare Advantage. (AXIOS, 1/31, https://www.axios.com/humana-hospice-sale-process-6b7441d3-8b0f-4518-b8f9-2bf7ff55c2e6.html)
* Journal of Palliative Medicine has shared, for a limited time, open access to a May 2020 article. The article, “Experiences of Lesbian, Gay, Bisexual, and Transgender Patients and Families in Hospice and Palliative Care: Perspectives of the Palliative Care Team,” is online at the link below. (Journal of Palliative Medicine, 5/29/20, https://www.liebertpub.com/doi/10.1089/jpm.2019.0542)
* West Virginia’s HB 4013, meant to repeal the state’s Certificate of Need law, was voted down by the 12-member Health and Human Resources Committee of West Virginia House of Delegates on 2/2. Before the final decision was made, says an article in West Virginia’s Weirton Daily Times, home health, hospice care, and personal services were excluded from the bill. Supporters of the bill, including two nurses on the Health and Human Resources Committee, believe the repeal of CON would improve access to care, healthcare savings, “and possibly save more lives.” (Weirton Daily Times, 2/2, https://wvdn.com/26319/)
PALLIATIVE CARE NOTE
* “Vynca, a leading technology-enabled provider of holistic care for those with serious illnesses,” partners with providers of care to serve people with serious illness. In a press release, Vynca describes themselves as providing “virtual palliative care services, advance care planning, care coordination, symptom management and provider engagement…” With $30 million new funding from Questa Capital, Vynca plans to expand their services to more of the 90 million Americans with serious illness. Vynca says it currently offers palliative care services to thousands and “has delivered over one million unique advanced care plans across all 50 states to patients and families.” (PR Newswire, 1/31, https://www.prnewswire.com/news-releases/vynca-secures-30-million-in-funding-to-expand-integrated-palliative-care-platform-301471493.html)
* End of Life University offers the podcast “Better Place Forests: Reimagining Cemeteries with Sandy Gibson.” Gibson, who leads Better Place Forests, shares how early losses in his own life led him to “reimagine cemeteries and make them good for the entire world.” The podcast explores Better Place Forest, choosing a tree in advance of death, rituals at life’s end, and dealing with grief. (End of Life University, 1/31, https://eolupodcast.com/2022/01/31/ep-336-better-place-forests-reimagining-cemeteries-with-sandy-gibson/)
* Dr. Anna Beck, oncologist, palliative care physician, and the director of end-of-life care at Utah’s Huntsman Cancer Institute, says, “hundreds and thousands of people in America develop depression and anxiety as a result of a cancer diagnosis.” And, she adds, there is not a lot that can treat this “existential distress.” Huntsman has a study underway with a team of researchers “exploring experimental treatment for the demoralization and anxiety that often accompany cancer: group psychedelic therapy.” Saying that psychedelic medicines are “the only thing that has been shown to make a difference in terms of alleviating some of the existential distress,” they plan to see if such group therapy and the use of psilocybin “can safely help people confront the sense of their own mortality.” In a KUER radio segment, Beck specifically talks about using this therapy with patients with terminal illnesses. Paul Thielking, a palliative care physician, helped design the clinical trial and shares more in the radio segment. The radio presentation on KUER90.1 is online, as is the transcript, at the link below. The segment shares more about the history and the hoped-for future of psilocybin to treat depression and anxiety. (KUER90.1, 1/27, https://www.sltrib.com/news/health/2022/02/01/clinical-study/)
* “A Neuroscientist Prepares for Death: Lessons my terminal cancer has taught me about the mind,” appears in The Atlantic. The article is written by David J. Linden, a neuroscience professor at the John Hopkins School of Medicine and the Kavli Neuroscience Discovery Institute. Linden shares his experience with malignant synovial sarcoma cancer, which is embedded in his heart wall and cannot be fully removed surgically. Linden was given a prognosis of six to eighteen months left remaining in his life. Linden offers a personal reflection on his experience – from “white-hot angry” to his enduring love of his wife Dena. He reflects on his rich life, his love of science and his career. He observes that “it is possible, even easy, to occupy two seemingly contradictory mental states at the same time.” So, he says, “I’m simultaneously furious at my terminal cancer and deeply grateful for all that life has given me.” Linden’s reflection are honest and thoughtful ones. (The Atlantic, 12/20/2021, https://www.theatlantic.com/ideas/archive/2021/12/terminal-cancer-neuroscientist-prepares-death/621114/)
* An article in Futurity explores the variation of state laws in end-of-life policies in US prisons. The variation between state and national policies impacts how prison inmates “can complete advance care planning documents, how they are granted access to document their end-of-life wishes, and who can serve as their surrogate decision-makers.” The need for change is urgent, with growing geriatric and end-of-life persons in US prisons. The article reviews the evolution of end-of-life care and causes for the increased in aging patients. The National Commission on Correctional Health Care set standards giving prisoners rights in these decisions. But, researchers say, restrictions complicate the end-of-life plan-making for incarcerated persons. The issue of compliance needs to be addressed, and researchers found this oversight minimal. (Futurity, 2/1, https://www.futurity.org/end-of-life-prison-2690072-2/)
* An article in PsychCentral explores the symptoms of delayed grief and offers tips on coping with this grief. The article discusses grief, as unpredictable and inconsistent, and then looks at “delayed grief” – often experienced months or years after the event. The article brief outlines basic features of anticipatory grief, uncomplicated (or simple) grief, disenfranchised grief, traumatic grief, compounded grief, prolonged grief, delayed grief. Insights into each form of grief, and suggestions for coping are noted. At the end of the article are links to books and podcasts for grieving. (PsychCentral, 1/31, https://psychcentral.com/health/delayed-grief#causes)
* After fifteen minutes of discussion, Florida’s SB 988 was approved by the Senate Appropriations Committee on Health and Human Services. “The bill would require health care providers to allow visitors in end-of-life situations, times of emotional distress and when patients need support from family members or caregivers to eat or drink, as well as any other circumstance the Agency for Health Care Administration deems appropriate.” The Florida Senior Living Association, while it supports legislation that puts “patients and families first, says they are concerned that “some unintended consequences are out there” and that they cannot support the bill as it reads right now. The bill, if it passes another committee, will then go to the full Senate. The link below leads to an article that shares more about this development. (Florida Politics, 2/2, https://floridapolitics.com/archives/492698-no-patient-left-alone-act-ensuring-hospital-nursing-home-visitations-advances/)
* CMS issued a press release saying that, for the first time, it will be sharing nursing home “staff turnover rates and weekend staff levels for nursing homes.” CMS has now posted this information at the second link below. (CMS press release, 1/26, https://www.cms.gov/newsroom/press-releases/advance-information-quality-care-cms-makes-nursing-home-staffing-data-available; Medicare.gov, https://www.cms.gov/newsroom/press-releases/advance-information-quality-care-cms-makes-nursing-home-staffing-data-available)
* An article in VOX, shares a reprint of a 2019 interview of a senior advisor of Thich Nhat Hanh, Buddhist priest who died recently. The article explores Thich Nhat Hanh’s understanding of death, and his sense of being a part of his ancestors. In 2014, he had a stroke that left him only able to communicate with his left arm and his facial expressions. What he taught his community about making “the transition [to die] was to live each moment consciously, and to “let go” as a spiritual practice. Long before his death, says Phap Dung, Thich Nhat Hanh shared that he did not want a stupa—a shrine for his remains. He commanded this should not be done. A paraphrase of what he said: “‘Please do not build a stupa for me. Please do not put my ashes in a vase, lock me inside, and limit who I am…If you must build a stupa though, please make sure that you put a sign on it that says, ‘I am not in here.’ In addition, you can also put another sign that says, “I am not out there either,’ and a third sign that says, ‘If I am anywhere, it is in your mindful breathing and in your peaceful steps.’” (Vox. 12/21/2021, https://www.vox.com/2019/3/11/18196457/thich-nhat-hanh-health-mindfulness-plum-village)
Thanks to Chris Zinn, Barb Hansen, and Meg McCauley for contributions.
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