Being Mortal: Medicine and What Matters in the End (33 page)

Equally worrying: Data on certifications in geriatrics from American Board of Medical Specialties and American Board of Internal Medicine.

350,000 Americans fall and break a hip: M. Gillick,
The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies
(Harvard University Press, 2006).

Several years ago, researchers at the University of Minnesota: C. Boult et al., “A Randomized Clinical Trial of Outpatient Geriatric Evaluation and Management,”
Journal of the American Geriatrics Society
49 (2001): 351–59.

In a year, fewer than three hundred doctors: American Board of Medical Specialties, American Board of Psychiatry and Neurology; L. E. Garcez-Leme et al., “Geriatrics in Brazil: A Big Country with Big Opportunities,”
Journal of the American Geriatrics Society
53 (2005): 2018–22; C. L. Dotchin et al., “Geriatric Medicine: Services and Training in Africa,”
Age and Ageing
41 (2013): 124–28.

The risk of a fatal car crash: D. C. Grabowski, C. M. Campbell, and M. A. Morrissey, “Elderly Licensure Laws and Motor Vehicle Fatalities,”
JAMA
291 (2004): 2840–46.

in Los Angeles, George Weller: J. Spano, “Jury Told Weller Must Pay for Killing 10,”
Los Angeles Times
, Oct. 6, 2006,
http://articles.latimes.com/2006/oct/06/local/me-weller6
.

3: DEPENDENCE

In 1913, Mabel Nassau: M. L. Nassau,
Old Age Poverty in Greenwich Village: A Neighborhood Study
(Fleming H. Revell Co., 1915).

Unless family could take such people in: M. Katz,
In the Shadow of the Poorhouse
(Basic Books, 1986); M. Holstein and T. R. Cole, “The Evolution of Long-Term Care in America,” in
The Future of Long-Term Care
, ed. R. H. Binstock, L. E. Cluff, and O. Von Mering (Johns Hopkins University Press, 1996).

A 1912 report: Illinois State Charities Commission,
Second Annual Report of the State Charities Commission
, 1912, pp. 457–508; Virginia State Board of Charities and Corrections,
First Annual Report of State Board of Charities and Corrections
, 1909.

Nothing provoked greater terror: Haber and Gratton,
Old Age and the Search for Security
.

the case of Harry Truman: M. Barber, “Crotchety Harry Truman Remains an Icon of the Eruption,”
Seattle Post-Intelligencer
, March 11, 2000; S. Rosen,
Truman of Mt. St. Helens: The Man and His Mountain
(Madrona Publishers, 1981). Two bands have put out songs inspired by Truman: R. W. Stone’s 1980 country rock hit, “Harry Truman, Your Spirit Still Lives On,”
http://www.youtube.com/watch?v=WGwa3N43GB4
, and Headgear’s 2007 indie rock single, “Harry Truman,”
http://www.youtube.com/watch?v=JvcZnKkM_DE
.

In the middle part of the twentieth century: L. Thomas,
The Youngest Science
(Viking, 1983).

Congress passed the Hill-Burton Act: A. P. Chung, M. Gaynor, and S. Richards-Shubik, “Subsidies and Structure: The Last Impact of the Hill-Burton Program on the Hospital Industry,” National Bureau of Economics Research Program on Health Economics meeting paper, April 2013,
http://www.nber.org/confer/2013/HEs13/summary.htm
.

Meanwhile, policy planners: A key source for the history of nursing homes was B. Vladeck,
Unloving Care: The Nursing Home Tragedy
(Basic Books, 1980). See also Holstein and Cole, “Evolution of Long-Term Care,” and records from the City of Boston and its almshouse:
https://www.cityofboston.gov/Images_Documents/Guide%20to%20the%20Almshouse%20records_tcm3-30021.pdf
.

As one scholar put it: Vladeck,
Unloving Care
.

The sociologist Erving Goffman: E. Goffman
Asylums
(Anchor, 1961). Corroborated by C. W. Lidz, L. Fischer, and R. M. Arnold,
The Erosion of Autonomy in Long-Term Care
(Oxford University Press, 1992).

4: ASSISTANCE

Your chances of avoiding the nursing home: G. Spitze and J. Logan, “Sons, Daughters, and Intergenerational Social Support,”
Journal of Marriage and Family
52 (1990): 420–30.

“Her vision was simple”: K. B. Wilson, “Historical Evolution of Assisted Living in the United States, 1979 to the Present,”
Gerontologist
47, special issue 3 (2007): 8–22.

In 1988, the findings were made public: K. B. Wilson, R. C. Ladd, and M. Saslow, “Community Based Care in an Institution: New Approaches and Definitions of Long Term Care” paper presented at the 41st Annual Scientific Meeting of the Gerontological Society of America, San Francisco, Nov. 1988. Cited in Wilson, “Historical Evolution.”

In 1943, the psychologist Abraham Maslow: A. H. Maslow, “A Theory of Human Motivation,”
Psychological Review
50 (1943): 370–96.

Studies find that as people grow older: D. Field and M. Minkler, “Continuity and Change in Social Support between Young-Old, Old-Old, and Very-Old adults,”
Journal of Gerontology
43 (1988): 100–6; K. Fingerman and M. Perlmutter, “Future Time Perspective and Life Events across Adulthood,”
Journal of General Psychology
122 (1995): 95–111.

In one of her most influential studies: L. L. Carstensen et al., “Emotional Experience Improves with Age: Evidence Based on over 10 Years of Experience Sampling,”
Psychology and Aging
26 (2011): 21–33.

She produced a series of experiments: L. L. Carstensen and B. L. Fredrickson, “Influence of HIV Status on Cognitive Representation of Others,”
Health Psychology
17 (1998): 494–503; H. H. Fung, L. L. Carstensen, and A. Lutz, “Influence of Time on Social Preferences: Implications for Life-Span Development,”
Psychology and Aging
14 (1999): 595; B. L. Fredrickson and L. L. Carstensen, “Choosing Social Partners: How Old Age and Anticipated Endings Make People More Selective,”
Psychology and Aging
5 (1990): 335; H. H. Fung and L. L. Carstensen, “Goals Change When Life’s Fragility Is Primed: Lessons Learned from Older Adults, the September 11 Attacks, and SARS,”
Social Cognition
24 (2006): 248–78.

By 2010, the number of people in assisted living: Center for Medicare and Medicaid Services,
Nursing Home Data Compendium, 2012 Edition
(Government Printing Office, 2012).

A survey of fifteen hundred assisted living facilities: C. Hawes et al., “A National Survey of Assisted Living Facilities,”
Gerontologist
43 (2003): 875–82.

5: A BETTER LIFE

In a book he wrote: W. Thomas,
A Life Worth Living
(Vanderwyk and Burnham, 1996).

And other research was consistent: J. Rodin and E. Langer, “Long-Term Effects of a Control-Relevant Intervention with the Institutionalized Aged,”
Journal of Personality and Social Psychology
35 (1977): 897–902.

In 1908, a Harvard philosopher: J. Royce,
The Philosophy of Loyalty
(Macmillan, 1908).

Research has found that in units with fewer than twenty people: M. P. Calkins, “Powell Lawton’s Contributions to Long-Term Care Settings,”
Journal of Housing for the Elderly
17 (2008): 1–2, 67–84.

As Dworkin wrote: R. Dworkin, “Autonomy and the Demented Self,”
Milbank Quarterly
64, supp. 2 (1986): 4–16.

6: LETTING GO

More than 15 percent of lung cancers: C. M. Rudin et al., “Lung Cancer in Never Smokers: A Call to Action,”
Clinical Cancer Research
15 (2009): 5622–25.

85 percent of them respond: C. Zhou et al., “Erlotinib versus Chemotherapy for Patients with Advanced EGFR Mutation-Positive Non-Small-Cell Lung Cancer,”
Lancet Oncology
12 (2011): 735–42.

Studies had shown: C. P. Belani et al., “Maintenance Pemetrexed plus Best Supportive Care (BSC) versus Placebo plus BSC: A Randomized Phase III Study in Advanced Non-Small Cell Lung Cancer,”
Journal of Clinical Oncology
27 (2009): 18s.

In the United States, 25 percent of all Medicare spending: G. F. Riley and J. D. Lubitz, “Long-Term Trends in Medicare Payments in the Last Year of Life,”
Health Services Research
45 (2010): 565–76.

Data from elsewhere: L. R. Shugarman, S. L. Decker, and A. Bercovitz, “Demographic and Social Characteristics and Spending at the End of Life,”
Journal of Pain and Symptom Management
38 (2009): 15–26.

Spending on a disease like cancer: A. B. Mariotto, K. R. Yabroff, Y. Shao et al., “Projections of the Cost of Cancer Care in the United States: 2010–2020,”
Journal of the National Cancer Institute
103 (2011): 117–28. See also M. J. Hassett and E. B. Elkin, “What Does Breast Cancer Treatment Cost and What Is It Worth?,”
Hematology/Oncology Clinics of North America
27 (2013): 829–41.

In 2008, the national Coping with Cancer project: A. A. Wright et al., “Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment,”
Journal of the American Medical Association
300 (2008): 1665–73.

People with serious illness have priorities: P. A. Singer, D. K. Martin, and M. Kelner, “Quality End-of-Life Care: Patients’ Perspectives,”
Journal of the American Medical Association
281 (1999): 163–68; K. E. Steinhauser et al., “Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers,”
Journal of the American Medical Association
284 (2000): 2476.

But as end-of-life researcher Joanne Lynn: J. Lynn,
Sick to Death and Not Going to Take It Anymore
(University of California Press, 2004).

Guides to
ars moriendi
: J. Shinners, ed.,
Medieval Popular Religion 1000–1500: A Reader
, 2nd ed. (Broadview Press, 2007).

Last words: D. G. Faust,
This Republic of Suffering
(Knopf, 2008), pp. 10–11.

swift catastrophic illness is the exception: M. Heron, “Deaths: Leading Causes for 2009,” National Vital Statistics Reports 61 (2009),
http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_07.pdf
. See also Organisation for Economic Cooperation and Development,
Health at a Glance 2013
,
http://www.oecd.org/els/health-systems/health-at-a-glance.htm
.

First, our own views may be unrealistic: N. A. Christakis and E. B. Lamont, “Extent and Determinants of Error in Doctors’ Prognoses in Terminally Ill Patients: Prospective Cohort Study,”
BMJ
320 (2000): 469–73.

Second, we often avoid voicing: E. J. Gordon and C. K. Daugherty, “‘Hitting You Over the Head’: Oncologists’ Disclosure of Prognosis to Advanced Cancer Patients,”
Bioethics
17 (2003): 142–68; W. F. Baile et al., “Oncologists’ Attitudes Toward and Practices in Giving Bad News: An Exploratory Study,”
Journal of Clinical Oncology
20 (2002): 2189–96.

Gould published an extraordinary essay: S. J. Gould, “The Median Isn’t the Message,”
Discover
, June 1985.

the case of Nelene Fox: R. A. Rettig, P. D. Jacobson, C. Farquhar, and W. M. Aubry,
False Hope: Bone Marrow Transplantation for Breast Cancer
(Oxford University Press, 2007).

Ten states enacted laws: Centers for Diseases Control, “State Laws Relating to Breast Cancer,” 2000.

Never mind that Health Net was right: E. A. Stadtmauer, A. O’Neill, L. J. Goldstein et al., “Conventional-Dose Chemotherapy Compared with High-Dose Chemotherapy plus Autologous Hematopoietic Stem-Cell Transplantation for Metastatic Breast Cancer,”
New England Journal of Medicine
342 (2000): 1069–76. See also Rettig et al.,
False Hope
.

Aetna, decided to try a different approach: R. Krakauer et al., “Opportunities to Improve the Quality of Care for Advanced Illness,”
Health Affairs
28 (2009): 1357–59.

A two-year study of this “concurrent care” program: C. M. Spettell et al., “A Comprehensive Case Management Program to Improve Palliative Care,”
Journal of Palliative Medicine
12 (2009): 827–32. See also Krakauer et al. “Opportunities to Improve.”

Aetna ran a more modest concurrent care program: Spettel et al., “A Comprehensive Case Management Program.”

Two-thirds of the terminal cancer patients: Wright et al., “Associations Between End-of-Life Discussions.”

A landmark 2010 study from the Massachusetts General Hospital: J. S. Temel et al., “Early Palliative Care for Patients with Metastatic Non-Small Cell Lung Cancer,”
New England Journal of Medicine
363 (2010): 733–42; J. A. Greer et al., “Effect of Early Palliative Care on Chemotherapy Use and End-of-Life Care in Patients with Metastatic Non-Small Cell Lung Cancer,”
Journal of Clinical Oncology
30 (2012): 394–400.

In one, researchers followed 4,493 Medicare patients: S. R. Connor et al., “Comparing Hospice and Nonhospice Survival among Patients Who Die Within a Three-Year Window,”
Journal of Pain and Symptom Management
33 (2007): 238–46.

By 1996, 85 percent of La Crosse residents: B. J. Hammes,
Having Your Own Say: Getting the Right Care When It Matters Most
(CHT Press, 2012).

7: HARD CONVERSATIONS

Five of the ten fastest-growing: Data analyzed from World Bank, 2013,
http://www.worldbank.org/en/publication/global-economic-prospects
.

By 2030, one-half to two-thirds: Ernst & Young, “Hitting the Sweet Spot: The Growth of the Middle Class in Emerging Markets,” 2013.

Surveys in some African cities: J. M. Lazenby and J. Olshevski, “Place of Death among Botswana’s Oldest Old,”
Omega
65 (2012): 173–87.

leading families to empty bank accounts: K. Hanson and P. Berman, “Private Health Care Provision in Developing Countries: A Preliminary Analysis of Levels and Composition,”
Data for Decision Making Project
(Harvard School of Public Health, 2013),
http://www.hsph.harvard.edu/ihsg/topic.html
.