by Katy Butler
5 percent . . . gained more time: E. Horstmann, M. S. McCabe, et al., “Risks and benefits of phase I oncology trials, 1991 through 2002.” N Engl J Med 352, no. 9 (March 2005):895–904. See also, Anthony L. Back, Wendy G. Anderson, et al., “Communication about cancer near the end of life,” Cancer 113, 7 Suppl (October 2008):1897–1910. doi:10.1002/cncr.23653.
“desperate patients”: Jonathan Kimmelman, “Is Participation in Cancer Phase 1 Trials Really Therapeutic?” J Clin Oncol. 35, no. 2 (January 2017):135–138. Published online September 30, 2016. doi: 10.1200/JCO.2016.67.9902.
“a scorched-earth operation”: Siddhartha Mukherjee, “The Invasion Equation,” The New Yorker (September 17, 2017).
frequently shortens life: Holly G. Prigerson, et al., “Chemotherapy Use, Performance Status, and Quality of Life at the End of Life,” JAMA Oncology 1, no. 6 (2015):778–784. doi: 10.1001/jamaoncol.2015.2378.
Cancerous tumors: Siddhartha Mukherjee, “The Invasion Equation,” The New Yorker (September 17, 2017).
Marijuana for medical purposes: Michael Stolberg, A History of Palliative Care, 1500–1970: Concepts, Practices and Ethical Challenges (Springer 2017), p. 102.
Norma Jean Bauerschmidt: Tim Bauerschmidt and Ramie Liddle, Driving Miss Norma: One Family’s Journey to Saying Yes to Living (HarperOne, 2017).
CHAPTER 5: House of Cards
Although the Wind: Izumi Shikibu, “Although the wind . . . ,” translated by Jane Hirshfield and Mariko Aratani, from The Ink Dark Moon, Vintage Classics, 1990. Reprinted by permission.
of the following statements: Statements two through eight on this list are formal criteria for a clinical diagnosis of “advanced frailty,” characterized by weakness, slow movement, lack of stamina, weight loss, exhaustion, inactivity, and unsteady balance. Numerous studies have shown that frail people face greater risks from surgery and hospitalization, and so do people with several coexisting serious illnesses (multiple co-morbidities) such as diabetes plus heart trouble plus emphysema.
“the dwindles”: In the words of poet and longtime hospice volunteer Pam Heinrich MacPherson, “the dwindles” is a letting-go that “occurs in frail elders and moves slowly, only in one direction, i.e., toward life closure.”
more than twenty seconds: This is known as the “Timed Up and Go” (TUG) test. If this test alone takes you more than twenty seconds, you meet the definition of frailty and are at high risk of falling or having complications after surgery.
live in a nursing home: If you answered “yes” to three or more of the statements two through eight, you officially meet the American Geriatrics Society’s definition of frailty. You have a fifty-fifty chance of coming out worse, not better, from any hospital stay. The more “yes” statements you agree to, the greater your risks. See Daniel Hoefer, MD, “If Only Someone Had Warned Us,” Coalition for Compassionate Care of California recorded webinar, accessed in 2015, http://coalitionccc.teachable.com/p/if-only-someone-had-warned-us.
If Only Someone Had Warned Us: Daniel Hoefer, MD, has heard this phrase from numerous families after disastrous hospitalizations.
frail patients are more likely: Martin A. Makary, et al., “Frailty as a Predictor of Surgical Outcomes in Older Patients,” Journal of the American College of Surgeons 210, no. 6 (2010): 901–8. doi:10.1016/j.jamcollsurg.2010.01.028.
age of eighty-one: Linda Fried, et al., “Untangling the Concepts of Disability, Frailty and Comorbidity: Implications for Improved Targeting and Care,” Journals of Gerontology Series A: Biological Sciences and Medical Sciences 59, no. 3 (2004):M255–M263. doi: 10.1093/gerona/59.3.M255.
without house call services: Many states require assisted living residents to get a medical assessment within twenty-four hours of any “change in health status,” such as a fall. In places without onsite medical staff, this usually means a trip, warranted or not, to the emergency room. Meet with the home’s medical or executive director and see if you can sign a waiver, make alternative medical arrangements such as a physician house call service, or get a “do not transport” medical order.
keep patients out of the hospital: Paula Span, “The Patient Wants to Leave. The Hospital Says, ‘No Way.’ ” New York Times, July 7, 2017.
emergency room only for things: Symptoms of stroke include: facial drooping, a one-sided smile, slurred speech, or weakness, numbness or paralysis of one arm or leg. Clot-busting medications, administered early, can reduce permanent disability. Call 911, say “This is a stroke,” and get to the front of the line.
fifty thousand older people a year: Carijn Lelieveld, et al., “Discharge Against Medical Advice Among Elderly Inpatients in the U.S.,” Journal of the American Geriatrics Society 65, no. 9 (September 2017):2094–2099, epublished June 2017. doi:10.1111/jgs.14985.
DASH: Medicare and Medicaid reimbursed DASH on a fee-for-service basis, but didn’t cover travel time or reimburse for communications with the patient’s various doctors. Those significant costs were covered by charitable grants and the monthly fees paid by some patients.
financially supported: In 2016, in a pilot project called Independence at Home, Medicare provided additional funding to a selection of house call programs across the country with similarities to DASH. They are included in the resources section.
POLST: Sample copies and specific state regulations are available from POLST Paradigm at Polst.org. In 2018, about half of the states had POLST programs, and most others, with the exception of South Dakota and Washington, D.C., were developing them.
benefit from palliative care: Susan Mitchel, et al., “The Clinical Course of Advanced Dementia,” New Engl J Med 361 (October 15, 2009):1595–1596.
“Uncertainty is not”: Zygmunt Bauman, Alone Again: Ethics After Certainty (Demos Press, 1994).
draw out dying for weeks: “End of Life Decisions,” © 2016, Alzheimer’s Association.
For more detailed guidance: See Hank Dunn, Hard Choices for Loving People: Feeding Tubes, Palliative Care, Comfort Measures, and the [[p253]]Patient with a Serious Illness, 6th edition (Naples: Quality of Life Publishing Co., 2016).
letter I’ve written: My letter was adapted from, and inspired by, an online version that I can no longer access.
geriatrics specialists recommend: A reminder: this loosening-up is relevant for frail people in the House of Cards, not necessarily for vigorous older people who still function well on their own.
blood pressure: Veronika van der Wardt, “Should Guidance for the Use of Antihypertensive Medication in Older People with Frailty Be Different?” Age and Ageing 44, no. 6 (2015):912–913. doi: https://doi.org/10.1093/ageing/afv147. See also Athenase Benetos, et al., “Polypharmacy in the Aging Patient: Management of Hypertension in Octogenarians.” JAMA 314 (2015):170–180, doi: 10.1001/jama.2015.7517 and Michelle C. Odden, et al., “Rethinking the Association of High Blood Pressure with Mortality in Elderly Adults: The Impact of Frailty,” Archives of Internal Medicine 172 (2012):1162–1168, doi: 10.1001/archinternmed.2012.2555.
Blood pressure medications: Mary E. Tinetti, et al., “Antihypertensive Medications and Serious Fall Injuries in a Nationally Representative Sample of Older Adults.” JAMA Internal Medicine 174, no. 4 (2014):588–595. doi: 10.1001/jamainternmed.2013.14764.
Dietrich Mayer: “Dietrich” and “Betty” are pseudonyms.
CHAPTER 6: Preparing for a Good Death
Awakened: Czeslaw Milosz, Selected and Last Poems (Ecco reprint edition, 2011). Reprinted by permission.
palliative chemo: Holly G. Prigerson, PhD, et al., “Chemotherapy Use, Performance Status, and Quality of Life at the End of Life.” JAMA Oncology 1, no. 6 (2015):778–784. doi: 10.1001/jamaoncol.2015.2378.
arrange an informational meeting: You are most likely to die in the place where you are currently receiving your medical care. If hospice is not an option, explore a physician house call service, as discussed in Chapter 5, “House of Cards.”
list of myths: This list is adapted, edited, and expanded from American Hospice Foundation,
“Debunking the Myths of Hospice,” and from “Learning about Hospice,” Americanhospice.org.
local community nonprofits: Long-standing nonprofit hospices often have good reputations, but keep an open mind: some for-profit hospices do an excellent job.
life-extending rather than palliative: As of 2017, a few Medicare pilot programs allow people to get curative treatment and limited hospice benefits at the same time—another program I think should be expanded. (To my mind, anybody within about eighteen months of dying should have the right to medical care at home, whether it is called “home-based palliative care,” “serious illness management,” or “hospice.”)
lasting up to an hour or so: Medicare reimburses hospices at a higher rate for “continuous care” at the bedside or in a separate residential hospice for a few days if a patient’s symptoms become unmanageable or caregivers need respite. In practice, this respite is usually short term and rare. Ask for it if you need it.
Ask around about friends’ experience: “Hospice Compare” on the Medicare website lets you get a list of hospices serving your zip code and compare their ratings. Questions for your first one-to-one meeting, suggested by Hospice Foundation of America, are listed in the resource section.
rancher Jim Modini: The Modinis’ end of life story was told by their neighbor Judy MacDonald Johnston in her excellent TED Talk “Prepare for a Good End of Life.”
microbiologist Louis Pasteur: Michael Stolberg, A History of Palliative Care, 1500–1970: Concepts, Practices, and Ethical Challenges (Springer, 2017), p. 129.
novelist Léon Daudet: Devant La Douleur (1915), pp. 62–63, translation by Katy Butler. CF. Stolberg.
support for expanding: For more information on physician-assisted dying, contact Compassion and Choices (compassionandchoices.org).
Greek philosopher Cleanthes: Jerry B. Wilson, Death by Decision (Westminster Press, 1975), p. 22. Citing W. Mair, “Suicide: Greek and Roman,” Encyclopedia of Religion and Ethics, 1925.
chose to stop eating and drinking: See Phyllis Shacter, “Choosing to Die: A Personal Story. Elective Death by Voluntarily Stopping Eating and Drinking (VSED) in the Face of Degenerative Disease.” CreateSpace Independent Publishing Platform, 2017.
After spending his last week: See Derek Humphry, Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying (First published in 1991; Bantam Dell, 2010).
Phillip’s wife, Aida: Aida and Phillip’s names have been changed.
“Goodbye”: Ira Byock, The Four Things That Matter Most (Atria Books, 2014).
handbook: Cappy Capossela and Sheila Warnock, Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill (Touchstone, 2004). See Sharethecare.org.
CHAPTER 7: Active Dying
Late Fragment: Raymond Carver, “Late Fragment,” from A New Path to the Waterfall (Atlantic Monthly Press, 1989). Reprinted by permission.
named Gordon: Names and some identifying details have been changed.
a bone marrow transplant: “Stem Cell Transplant for Multiple Myeloma,” American Cancer Society website. https://www.cancer.org/cancer/multiple-myeloma/treating/stem-cell-transplant.html. Accessed January 8, 2017.
could kill him: Between 41 and 60 percent of people receiving bone marrow from another person die within the first year. See Memorial Sloan Kettering, “MSK’s One-Year Survival Rate after Allogenic Bone Marrow Transplant Exceeds Expectations,” online press release, March 26, 2012, https://www.mskcc.org/blog/msk-s-one-year-survival-rate-after-allogenic-bone-marrow-transplant-exceeds-expectations. Accessed January 10, 2018. Federally mandated survival statistics, by transplant center, are listed in the Transplant Center Directory, at Bethematch.org, accessed January 12, 2018.
morally responsible institutional culture: E. Dzeng, et al., “Influence of Institutional Culture and Policies on Do-Not-Resuscitate Decision Making at the End of Life,” JAMA Internal Medicine 175, no. 5 (May 2015):812–819. doi: 10.1001/jamainternmed.2015.0295. Accessed Feb 9, 2018.
“Buddhist perspective”: The notion that suffering is redemptive is not in fact a teaching of classical Buddhism, which holds that suffering results from not accepting things as they are.
To keep him from developing bedsores: Hospice nurses recommend turning every two to four hours, and less frequently when death is very near. Many people find cleaning the bottoms and changing the diapers of close family members—especially a parent or sibling—repellent. Anne had thirty years of practice as a nurse, and she approached the task matter-of-factly, and as an act of love. Not everyone can. “It’s important,” she said, “for people to honor their limitations. There is no shame in hiring an aide for these very difficult jobs.”
has been dead for hours: I recommend this explicit language to avoid traumatic attempts at CPR.
a chain of circumstances: In New York City and many other places, paramedics have performed CPR for as long as forty minutes, even when the person has been dead for more than an hour and family members plead that CPR be halted.
writing mentor Barry: Barry is a pseudonym.
Liz wrote on her blog: Liz Salmi, “Hacking the Hospital Death,” the lizarmy.com. April 30, 2016. Adapted with permission.
as the RESPECT protocol: RESPECT stands for: Restore order, Explain what happened, Stop other duties; be Present, Empathize, offer to call a Chaplain for spiritual support, and allow the family Time with the dead or dying person.
ritually wash the body: Debra Rodgers first learned about bathing rituals at a Metta Institute workshop for medical professionals led by Frank Ostaseski, a cofounder of San Francisco Zen Hospice, and author of Five Invitations: Discovering What Death Can Teach Us About Living Fully. Flatiron, March 2017.
CONCLUSION: Toward a New Art of Dying
death in the abstract: For this insight I am indebted to Bart Windrum, author of Happy Landings: A Gateway to Peaceful Dying.
pathway to a good death: PACE (Program for All Inclusive Care of the Elderly) is free to people on Medicaid who are over age fifty-five, need significant help with practical daily activities, and can, with support, live outside nursing homes (either with relatives, in assisted living, or on their own). It is only available in some areas.
People on Medicare can join PACE by paying the equivalent of their monthly Medicare premium, plus about $700 to $1,000 per month for prescription drug coverage. That sounds like a breathtaking amount, but it may be cheaper and less time-consuming (and much more fun and healthy for the frail elder) than full-time home care, assisted living, a nursing home, or a patchwork of private services. To see if there’s a program in your area, check the website of the National PACE association at npaonline.org.
GLOSSARY
Short-term survival rates: Brady, K. K. Gurka, B. Mehring, et al., “In-hospital cardiac arrest: Impact of monitoring and witnessed event on patient survival and neurologic status at hospital discharge,” Resuscitation, no. 82 (2011):845–852.
Overdiagnosis: For guidance on this and several other glossary entries, I am indebted to Slow Medicine (Italia) and its Le Parole della medicina che cambia: Un dizionario critico. Ill Pensiero Scientifico Editore, May 2017.
Permissions
Grateful acknowledgment is made for permission to reprint the following:
“I worried” from the collection Swan by Mary Oliver, published by Beacon Press, Boston. Copyright © 2010 by Mary Oliver. Used by permission of the Charlotte Sheedy Literary Agency, Inc.
“Perishable” by Jane Hirshfield, from Come Thief: Poems, by Jane Hirshfield © 2011 Jane Hirshfield. Used by permission of Alfred A. Knopf, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. All rights reserved.
“Although the wind” from The Ink Dark Moon: Love Poems by Onono Komachi and Izumi Shikibu, Women of the Ancient Court of Japan, translated by Jane Hirshfield. Translation copyright © 1990 by Jane Hirshfield. Used by permission of Vintage Books, an imprint of the Knopf Doubleday Publishing Group, a divis
ion of Penguin Random House LLC. All rights reserved. All third-party use of Penguin Random House material, outside this publication, is prohibited. Interested parties must apply directly to Penguin Random House LLC for permission.
“Awakened,” by Czeslaw Milosz from New and Collected Poems 1931–2001. © 1988, 1991, 1995, 2001, by Czeslaw Milosz Royalties, Inc. Reprinted by permission of HarperCollins Publishers.
“Late Fragment,” by Raymond Carver, from A New Path to the Waterfall, © 1989 by the Estate of Raymond Carver. Used by permission of Grove/Atlantic, Inc., and any third party use of this material, outside this publication, is prohibited.
“Nursing Care at the Time of Death: A Bathing and Honoring Practice.” Oncology Nursing Forum, 43 (May 2016): 363–373. © 2016, Oncology Nursing Society. Excerpted, adapted, and reprinted with the kind permission of the authors and Oncology Nursing Society. All rights reserved.
Excerpts from Five Wishes, by Aging with Dignity. © 1997 and 2010, Aging with Dignity, Tallahassee, Florida. Reprinted by kind permission of Aging with Dignity. All rights reserved.
Excerpts from “Hacking the Hospital Death,” by Liz Salmi. From the blog TheLizArmy, April 30, 2016. Reprinted with permission of the author. © 2016 Liz Salmi. All rights reserved.
Index
A note about the index: The pages referenced in this index refer to the page numbers in the print edition. Clicking on a page number will take you to the ebook location that corresponds to the beginning of that page in the print edition. For a comprehensive list of locations of any word or phrase, use your reading system’s search function.
acupuncture, 99, 217
ADLs (activities of daily living), 55, 213
advance directives (ADs), 24, 28, 214
comfort measures on, 119, 126–29, 133, 192, 217, 229
dementia and, 119–21, 129, 133