Authors: Atul Gawande
1
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.
2
“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.
3
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.”
4
In 1943, the psychologist Abraham Maslow: A. H. Maslow, “A Theory of Human Motivation,”
Psychological Review
50 (1943): 370–96.
5
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.
6
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.
7
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.
8
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).
9
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
1
In a book he wrote: W. Thomas,
A Life Worth Living
(Vanderwyk and Burnham, 1996).
2
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.
3
In 1908, a Harvard philosopher: J. Royce,
The Philosophy of Loyalty
(Macmillan, 1908).
4
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.
5
As Dworkin wrote: R. Dworkin, “Autonomy and the Demented Self,”
Milbank Quarterly
64, supp. 2 (1986): 4–16.
6: LETTING GO
1
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.
2
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.
3
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.
4
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.
5
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.
6
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.
7
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.
8
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.
9
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).
10
Guides to
ars moriendi:
J. Shinners, ed.,
Medieval Popular Religion 1000–1500: A Reader
, 2nd ed. (Broadview Press, 2007).
11
Last words: D. G. Faust,
This Republic of Suffering
(Knopf, 2008), pp. 10–11.
12
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
.
13
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.
14
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.
15
Gould published an extraordinary essay: S. J. Gould, “The Median Isn’t the Message,”
Discover
, June 1985.
16
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).
17
Ten states enacted laws: Centers for Diseases Control, “State Laws Relating to Breast Cancer,” 2000.
18
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
.
19
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.
20
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.”
21
Aetna ran a more modest concurrent care program: Spettel et al., “A Comprehensive Case Management Program.”
22
Two-thirds of the terminal cancer patients: Wright et al., “Associations Between End-of-Life Discussions.”
23
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.
24
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.
25
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
1
Five of the ten fastest-growing: Data analyzed from World Bank, 2013,
http://www.worldbank.org/en/publication/global-economic-prospects
.
2
By 2030, one-half to two-thirds: Ernst & Young, “Hitting the Sweet Spot: The Growth of the Middle Class in Emerging Markets,” 2013.
3
Surveys in some African cities: J. M. Lazenby and J. Olshevski, “Place of Death among Botswana’s Oldest Old,”
Omega
65 (2012): 173–87.
4
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
.
5
Yet at the same time, hospice programs are appearing everywhere: H. Ddungu, “Palliative Care: What Approaches Are Suitable in the Developing World?,”
British Journal of Haemotology
154 (2011): 728–35. See also D. Clark et al., “Hospice and Palliative Care Development in Africa,”
Journal of Pain and Symptom Management
33 (2007): 698–710; R. H. Blank, “End of Life Decision-Making Across Cultures,”
Journal of Law, Medicine & Ethics
(Summer 2011): 201–14.
6
Scholars have posited: D. Gu, G. Liu, D. A. Vlosky, and Z. Yi, “Factors Associated with Place of Death Among the Oldest Old,”
Journal of Applied Gerontology
26 (2007): 34–57.
7
Use of hospice care has been growing: National Center for Health Statistics, “Health, United States, 2010: With Special Feature on Death and Dying,” 2011. See also National Hospice and Palliative Care Organization, “NHPCO Facts and Figures: Hospice Care in America, 2012 Edition,” 2012.
8
Patients tend to be optimists: J. C. Weeks et al., “Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer,”
New England Journal of Medicine
367 (2012): 1616–25.
9
a short paper by two medical ethicists: E. J. Emanuel and L. L. Emanuel, “Four Models of the Physician-Patient Relationship,”
Journal of the American Medical Association
267 (1992): 2221–26.
10
most ovarian cancer patients at her stage: “Ovarian Cancer,” online American Cancer Society guide, 2014,
http://www.cancer.org/cancer/ovariancancer/detailedguide
.
11
Bob Arnold, a palliative care physician I’d met: See A. Back, R. Arnold, and J. Tulsky,
Mastering Communication with Seriously Ill Patients
(Cambridge University Press, 2009).
12
One-third of the county lived in poverty: Office of Research, Ohio Development Services Agency,
The Ohio Poverty Report, February 2014
(ODSA, 2014),
http://www.development.ohio.gov/files/research/ZP7005.pdf
.
13
they formed Athens Village on the same model: More information at
http://www.theathensvillage.org
. They could use your donations, by the way.
8: COURAGE
1
Plato wrote a dialogue:
Laches
, trans. Benjamin Jowett, 1892, available online through Perseus Digital Library, Tufts University,
http://www.perseus.tufts.edu/hopper/text?doc=Perseus%3atext%3a1999.01.0176%3atext%3dLach
.
2
The brain gives us two ways to evaluate experiences: D. Kahneman,
Thinking, Fast and Slow
(Farrar, Straus, and Giroux, 2011). See also D. A. Redelmeier and D. Kahneman, “Patients’ Memories of Painful Treatments: Real-Time and Retrospective Evaluations of Two Minimally Invasive Procedures,”
Pain
66 (1996): 3–8.
3
“An inconsistency is built into the design of our minds”: Kahneman,
Thinking, Fast and Slow
, p. 385.
4
After some resistance, cardiologists now accept: A. E. Epstein et al., “ACC/AHA/HRS 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities,”
Circulation
117 (2008): e350–e408. See also R. A. Zellner, M. P. Aulisio, and W. R. Lewis, “Should Implantable Cardioverter-Defibrillators and Permanent Pacemakers in Patients with Terminal Illness Be Deactivated? Patient Autonomy Is Paramount,”
Circulation: Arrhythmia and Electrophysiology
2 (2009): 340–44.
5
only a minority of people saved from suicide make a repeated attempt: S. Gibb et al. “Mortality and Further Suicidal Behaviour After an Index Suicide Attempt: A 10-Year Study,”
Australia and New Zealand Journal of Psychiatry
39 (2005): 95–100.