The Art of Dying Well

by Katy Butler

  sixty-five editions: Philip Meggs, et al. Megg’s History of Graphic Design (Wiley and Sons, 2016), Figs. 7–14.

  Ars Moriendi: My summary is drawn from William Rylands and George, Bullen, eds. The Ars Moriendi, Editio Princeps, Circa 1450, A Reproduction of the Copy in the British Museum (Wyman and Sons, London, 1881); William Caxon and Heinrich Seuse, The Book of the Craft of Dying and Other Early English Tracts Concerning Death, edited by Frances Comper (Longmans, Green, London, 1917); and Nancy Lee Beaty, The Craft of Dying: The Literary Tradition of the Ars Moriendi in England (Yale University Press, 1970).

  three-quarters of Americans: Liz Hamel et al, “Views and Experiences with End of Life Care in the US,” Henry J. Kaiser Family Foundation, in partnership with The Economist, April 27, 2017.

  fewer than a third: Centers for Disease Control, WONDER database, accessed January 28, 2016. http://wonder.cdc.gov.

  die in an ICU: Joan M. Teno, et al., “Change in End-of-Life Care for Medicare Beneficiaries,” JAMA 309, No. 5 (February 6, 2013). Susan W. Tolle and Joan M. Teno, et al., “Lessons from Oregon in Embracing Complexity in End-of-Life Care,” N Engl J M 376, no. 11. (March 16 2017), Fig. 1., p. 1079.

  “torture”: See Jessica Nutik Zitter, MD, Extreme Measures: Finding a Better Path to the End of Life (Penguin Random House, 2017).

  is intensifying: Last-minute hospice enrollment is increasing, but so is the proportion of people who spend time in an ICU in their final month.

  assembly line: The metaphor of the “end-of-life conveyor belt” was formulated by Jessica Nutik Zitter, MD, in Extreme Measures (Avery, 2017). I first came across the metaphor of hospitals as “body repair shops” in Bart Windrum’s Notes from the Waiting Room: Managing a Loved One’s End-of-Life Hospitalization (Axiom Action, 2008). A similar metaphor is used by Victoria Sweet, MD, in Slow Medicine: The Way to Healing (Riverhead Books, 2017).

  A 2017 poll: Liz Hamel et al, “Views and Experiences with End of Life Care in the US,” Henry J. Kaiser Family Foundation, in partnership with The Economist, April 27, 2017.

  “a gentle, mild and sweet”: Schulz, Zacharias Philipp/Alberti, Michael, De euthanasia medica, Vom leichten Todt, diss., U. of Halle 1735, p.10. CF Michael Stolberg, A History of Palliative Care 1500–1970: Concepts, Practices, and Ethical Challenges (Springer, 2017). p.33.

  CHAPTER 1: Resilience

  “The River Grows Wider”: From Bertrand Russell, Portraits from Memory and Other Essays (Allen and Unwin, 1951).

  cardiac rehabilitation: People who participate suffer fewer deaths from heart disease, are less likely to be hospitalized, and report better psychological health and quality of life. See Hasnain M. Dalal, Patrick Doherty, and Rod S. Taylor. “Cardiac Rehabilitation,” BMJ (Clinical Research Ed.) 351 (2015):500; and Dean Ornish, et al., “Intensive Lifestyle Changes for Reversal of Coronary Heart Disease,” JAMA 280, no. 23 (1998):2001–2007.

  halved Doug’s risk: A study of over 30,000 heart patients found that those who changed their diet, exercised more, and didn’t smoke were half as likely to die within five years of a first episode, or suffer another heart attack than were sedentary smokers who ate a lot of meat., J. Booth, et al., “Effect of Sustaining Lifestyle Modifications,” Am J Cardiol 113 no. 12 (June 2014):1933–1940.

  by a fall: People over seventy who regularly practice t’ai chi are half as likely to fall as those who don’t, and half as likely to be injured if they do fall.

  major threats: Neil Mehta, and Mikko Myrskyla, “The Population Health Benefits of a Healthy Lifestyle: Life Expectancy Increased and Onset of Disability Delayed,” Health Affairs 36, no. 8 (2017).

  prolong your time in Resilience: Mark Hamer, et al., “Taking up physical activity in later life and healthy ageing [sic]: the English longitudinal study of ageing,” British Journal of Sports Medicine, 48, no. 3 (February 2014). People who started exercising after age fifty-five had a sevenfold reduction in their risk of becoming ill or infirm eight years later.

  spiritual and social strength: Group support to change life habits is available at Diabetes Prevention classes, offered at more than two hundred Ys around the country and covered by Medicare because they are effective. Others find success in free twelve-step support groups like Alcoholics Anonymous, Smokers Anonymous, Overeaters Anonymous, and Food Addicts in Recovery Anonymous.

  break a sweat: In a study at the University of Pittsburgh, sixty sedentary older adults walked together several times a week, briskly enough to break a sweat. After one year, their hippocampuses had grown by an average of 2 percent, more than reversing the brain cell loss recorded in normal aging. The hippocampuses of a comparison group who only did nonaerobic stretching and yoga shrank by the normal 2 percent. See Kirk I. Erickson, “Exercise training increases size of hippocampus and improves memory,” Proceedings of the National Academy of Sciences 108, no. 7 (February 2011):3017–3022.

  “never going back”: For those interested in lifestyle changes, I recommend three excellent books: Younger Next Year, Food Rules, and Blue Zone Solutions, a National Geographic–funded study of health habits common among cultures around the world where people tend to live long lives without developing dementia. All are listed in the resource section and favor a “non-Western diet” heavy in fruits and vegetables and low in processed foods. Researchers continue to confirm the magnitude of its positive effects on reducing cancer, heart disease, and other degenerative illnesses.

  “failed back surgery syndrome”: See Cathryn Jakobson Ramin, Crooked: Outwitting the Back Pain Industry and Getting on the Road to Recovery (HarperCollins, 2017).

  with little vetting: See Brent Ardaugh, et al., “The 510(k) Ancestry of a Metal-on-Metal Hip Implant,” N Engl J Med 368 (January 2013):97–100.

  “postoperative cognitive impairment”: Ingrid Rundshagen, “Postoperative Cognitive Dysfunction,” Dtsch Arztebl Int. 111, no. 8 (February 2014):119–125.

  your legal and moral right: Doctors cannot be forced to terminate a treatment if they consider it unethical to do so, but they are professionally obligated to refer you to a more sympathetic doctor.

  “Five Wishes”: This document meets the legal requirements for advance directives in forty-two states and the District of Columbia. It is not legally approved in Alabama, Indiana, Kansas, New Hampshire, Ohio, Oregon, Texas, and Utah; people in these states should fill out the standard forms recognized there.

  handwriting a letter: I suggest handwriting because it is easier to authenticate an entirely handwritten letter than a generic computer printout that is signed but not witnessed. In many states, handwritten (holographic) wills are legally binding even when not notarized or witnessed.

  “There is no way”: This version of the “Five Remembrances” comes from the tradition of the Vietnamese Zen master Thich Nhat Hanh.

  CHAPTER 2: Slowing Down

  the afternoon of life: Carl Jung, Collected Works, vol. 8.

  following statements: This list does not define a formal medical syndrome, but practical, commonsense signs of your current state of health, and the forms of medical care most likely to be helpful.

  “seldom ‘fixed’ by a drug”: Dennis McCullough, My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for Your Aging Loved Ones (Harper Perennial, 2009), p. 44.

  primary care physicians: Comments section, Katy Butler, “Imagine a Medicare ‘Part Q’ for Quality at the End of Life,” in The End, New York Times, December 9, 2015. https://opinionator.blogs.nytimes.com/2015/12/09/imagine-a-medicare-part-q-for-quality-at-the-end-of-life.

  All-under-one-roof HMOs: In 2007, in the San Francisco Bay Area, where the Kaiser Permanente HMO dominates, people in Medicare Advantage plans spent one-third fewer days in the hospital than those in “original” fee-for-service Medicare.

  emergency room visits: Daniel S. Budnitz, et al., “National Surveillance of Emergency Department Visits for Outpatient Adverse Drug Events,” JAMA 295 (2006):1858–1866. doi: 10.1001/jama.296.15.1858.

>   (and no other purpose): A thorough medication review will require at least a fifteen-minute appointment, and should not be combined with other health concerns.

  medication review: Walgreens offers a medication review by a pharmacist to their prescription drug customers.

  Cholesterol lowering statins: See the nonprofit, physician-run “Number Needed to Treat” website (www.thennt.com) which assesses drug treatments, runs no advertisements, and takes no pharmaceutical industry money.

  can cause kidney damage: Mehul Dixit, et al., “Significant Acute Kidney Injury Due to Non-steroidal Anti inflammatory Drugs: Inpatient Setting,” Pharmaceuticals (Basel) 3, no. 4 (April 2010): 1279–1285. Published online April 26 2010.

  Anticholinergics: American Geriatrics Society’s “Beers List”: Therapeutic Research Center, “Potentially Harmful Drugs in the Elderly: Beers List.” Pharmacist’s Letter/Prescriber’s Letter June, 2012, updated 2015. Accessed February 18, 2016 at pharmacistsletter.com.

  develop dementia: In 2015, researchers at the University of Washington School of Pharmacy studied the health records of three thousand people over sixty-five, all cognitively intact at the start of the study. Those who took anticholinergics daily for three years or more had a 54 percent greater risk of being diagnosed with dementia ten years later. Occasional use (five to ten times a year) did not increase risk. See Shelly L. Gray, et al., “Cumulative Use of Strong Anticholinergics and Incident Dementia: A Prospective Cohort Study,” JAMA Internal Medicine 175, no. 3 (2015):401–407. doi: 10.1001/jamainternmed.2014.7663.

  Benzodiazepines: Jennifer Glass, “Sedative Hypnotics in Older People with Insomnia: Meta-Analysis of Risks and Benefits,” BMJ 31 (2005):1169. doi: 10.1136/bmj.38623.768588.47.

  relaxation or self-hypnosis audio: I recommend Michael Sealey’s free audios on YouTube, Emmett Miller, MD’s, CD or MP3, “Healing Journey,” and John Vosler, “Yoga Nidra.”

  PSA (prostate cancer tests): See the Society for Post-Acute and Long-Term Care Medicine, “Don’t Recommend Screening for Breast, Colorectal or Prostate Cancer If Life Expectancy Is Estimated to Be Less Than 10 Years,” Choosing Wisely, last modified March 20, 2015, http://www.choosingwisely.org/clinician-lists.

  Colonoscopies: The U.S. Preventive Services Task Force recommends no routine colon cancer screening for those older than seventy-five, and no screening at all for those over age eighty-five. Because polyps grow slowly, it’s unlikely they’ll develop into full-blown cancers before death arrives from another cause. See Paula Span, “Unnecessary Colon Screenings for Elderly Patients,” New Old Age, New York Times, May 25, 2011, https://newoldage.blogs.nytimes.com/2011/05/25/unnecessary-colon-screenings-for-elderly-patients.

  Antidepressants cannot cure: The antidepressant Wellbutrin is sometimes better tolerated by older people.

  “hole in our home”: I am grateful to Doug von Koss for permission to draw from his unpublished essay about this experience.

  CHAPTER 3: Adaptation

  You may find this chapter: The criteria for this chapter correspond roughly with mild to moderate frailty on the Clinical Frailty Scale.

  Marin Villages: See Marin Villages website, marinvillages.org.

  prenuptial agreement: Some couples faced with this dilemma get a legal “Medicaid divorce” to financially protect the healthy spouse.

  exercise class: See “Jane Fonda: Fit and Strong Level 1,” YouTube.

  Inside the house: A thorough fall-proofing checklist is downloadable at www.Marinvillages.org and at www.techenhancedlife.org.

  occupational therapist: Medicare requires a doctor’s referral for occupational, speech, and physical therapy.

  Hearing aids: Costco has good prices. A new generation of less expensive “Personal Amplification Devices,” not regulated by the FDA, can do the job nearly as well.

  pay for some services: Some religious and charitable groups, such as local Catholic Charities and Jewish Family and Children’s Services agencies, offer services on a sliding scale, and you do not have to be of any particular religion to qualify. In your search for services, start with your county’s Area Agency on Aging. Many areas also have a social services referral hotline: dial 211.

  Caregivers experience: J. K. Monin, et al., “Spouses’ Daily Feelings of Appreciation and Self-Reported Well Being,” Health Psychology 36, no. 12 (December 2017).

  nursing homes: Valery Hazanov, “What Working in a Nursing Home Taught Me about Life, Death, and America’s Cultural Values,” Vox (December 2, 2015). http://www.vox.com.

  t’ai chi: This ancient “soft” martial art increases ankle flexibility and thigh and core body strength. Once only known in pockets of the country with many Asian residents, it is now offered in many senior centers and assisted living residences in the Midwest and elsewhere. A hands-on teacher is best, but the basics can be learned via the highly rated iTunes app for the iPhone, T’ai Chi for Seniors, by Discovery Publisher Limited.

  CHAPTER 4: Awareness of Mortality

  end stage: If doctors use the term “multiple organ systems failure,” death is probably close, and the chapters “Preparing for a Good Death” and “Active Dying” will be more helpful.

  Ron Belcher, who was seventy-two: “How patients make decisions about cancer care: The story of Ronnie Belcher,” Stanford Ace Aging videotaped panel with Tim Belcher, V. J. Periakoyl, MD, and Charles Von Gunten, MD. https://aging.stanford.edu/2013/11/making-hard-decisions/part 1. Accessed Jan 2, 2018.

  fatal lung cancers: H. A. Huskamp, et al., “Discussions with physicians about hospice among patients with metastatic lung cancer,” Arch Intern Med 169, no. 10 (May 2009):954–962.

  mistaken impression: J. C. Weeks, et al., “Patients’ expectations about effects of chemotherapy for advanced cancer,” N Engl J M 367, no. 17 (October 2012):1616–25. doi: 10.1056/NEnglJM oa1204410.

  a clear understanding: Jennifer W. Mack and Thomas J. Smith, “Reasons Why Physicians Do Not Have Discussions About Poor Prognosis, Why It Matters, and What Can Be Improved,” Journal of Clinical Oncology 30, no. 22 (2012):2715–2717, doi: 10.1200/JCO.2012.42.4564; Thomas J. Smith, et al., “A Pilot Trial of Decision Aids to Give Truthful Prognostic and Treatment Information to Chemotherapy Patients with Advanced Cancer,” Journal of Supportive Oncology 9, no. 2 (2011):79–86; and Andrew S. Epstein et al., “Discussions of Life Expectancy and Changes in Illness Understanding in Patients with Advanced Cancer,” Journal of Clinical Oncology 34, no. 20 (2016):2398–2403. doi: 10.1200/JCO.2015.63.6696.

  overestimate their patients’ survival times: Nicholas A Christakis and Elizabeth B. Lamont, “Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study.” BMJ 320, no. 7233 (February 2000):469–473. On average, doctors overestimated survival length by a factor of 5.3.

  common trajectories: All but the third trajectory, which is my own, were created by geriatrician Joanne Lynn and reprinted by Atul Gawande in Being Mortal. Joanne Lynn, “Living Long in Fragile Health: The New Demographics Shape End of Life Care,” Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Special Report 35, no. 6 (2005):S14–S18.

  “apalliating” . . . “by gentle remedies”: Giovanni da Vigo (1450–1525), Chirurgerye (first English translation, 1543.) CF Michael Stolberg, A History of Palliative Care, 1500–1970: Concepts, Practices, and Ethical Challenges (Springer, 2017) p. 21.

  American Heart Association: Lynne T. Braun, et al., “Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement from the American Heart Association/American Stroke Association.” Circulation 134, no. 11 (September 2016):3198-e225, epublished August 8, 2018.

  American Society of Clinical Oncology: Betty R. Ferrell, et al., “Integration of Palliative Care into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update,” 2016.

  often live longer: Jennifer S. Temel, MD, et al., “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer.” N Engl J
M 363 (August 19, 2010):733–742. doi: 10.1056/ N Engl J M oa1000678.

  palliative care specialist: Amy Berman. “A Nurse with Fatal Cancer Says End-of-Life Discussions Saved Her Life.” Washington Post, June 1, 2016.

  a single carefully focused burst: “Choosing Wisely” website of the American Board of Internal Medicine (ABIM).

  Jerry Romano: “Preventing Deathbed Shocks: Jerry Romano’s Story,” Author interview with Soo-Ling Chang, 2016, and videotaped panel discussion at Stanford University with Katy Butler, Dipanjan Banerjee, MD, and V. J. Periakoyl, MD. Broadcast on YouTube and on “Ace Aging” website, Stanford Medical School, Palo Alto, California, recorded September 2013. http://aging.stanford.edu/2013/11story-jerry-romano/ Accessed July 18 2016, no longer accessible. See also interview of Katy Butler by V. J. Periakoyl, MD: https://aging.stanford.edu/2013/11/knocking-heavens-door-conversation-katy-butler/.

  patient’s survival time: John Fauber and Elbert Chu, “The Slippery Slope: Is a Surrogate Endpoint Evidence of Efficacy?” Medpage Today, October 26, 2014, https://www.medpagetoday.com/special-reports/slipperyslope/48244.

  the law of diminishing returns: The American Society of Clinical Oncology (ASCO) does not recommend third and fourth lines of treatment for people with lung cancer and impaired health and function. See ASCO NSCLC Decision Aid, ASCO 2009.

  fourth line produces: Ashahina, et al. “Retrospective analysis of third-line and fourth-line chemotherapy for advanced non-small-cell lung cancer.” Clin Lung Cancer 13, no. 1 (January 2012):39–43.

  “buy and bill”: Blase Polite, MD, et al., “Reform of the Buy-and-Bill System for Outpatient Chemotherapy Care Is Inevitable: Perspectives from an Economist, a Realpolitik, and an Oncologist.” Am Soc Clin Oncol Educ Book, 2015.

  FDA never approves: 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. Accessed January 18, 2018.