by Katy Butler
as legal right, 26
multiple backup copies of, 119
obtaining forms for, 28, 33–34
advanced illness, 77, 214
“against medical advice” (AMA) discharge from hospitals, 116, 131
aging
developmental tasks related to, 31
health stages of later life and, 8
medical risks with, 21
people’s acceptance of, 6–7
Slowing Down health stage and, 40
Alberts, Alan, 153–54
Alcoholics Anonymous, 20, 33, 237
alcohol use, and lifestyle changes, 16
allow natural death (AND) orders, 120, 128, 133, 218, 219
alternative medicine, 217
Alzheimer’s Association, 86, 124
American Academy of Home Care Medicine, 119
American Board of Internal Medicine (ABIM), 49, 227, 235
American Cancer Society, 86, 235
American Geriatrics Society, “Beers List” from, 52, 214, 240
American Heart Association, 91
American Society of Clinical Oncology, 91
ancillary health care workers, 60
AND (allow natural death) orders, 120, 128, 133, 218, 219
anticholinergics, 39, 47, 48, 52, 214, 239
Ars Moriendi (medieval text), 3–4
aspirin, 47, 99
assisted living residences
Adaptation health stage and, 55, 61
cost of, 57, 62, 68, 166
frailty and, 107
response to medical events in, 113, 118
attending physician, 214–15
Back, Anthony, 83, 93–94, 98, 100
back surgery, 21
balance
exercise programs for, 16, 65
medications affecting, 39, 40, 46
Beacon Hill Village, 58
“Beers List” (American Geriatrics Society), 52, 214, 240
Being Mortal (Gawande), 7, 86
benzodiazepines, 47–48, 146, 240
Berman, Amy, 78–81, 84, 92, 95, 102–3
bioethics committee, 215
blood pressure
lifestyle changes to lower, 19, 20
medications for, 19, 20, 33, 38, 46, 74, 115, 129
Bourne, Molly, 147–48
brain
medications harming, 46, 47, 52
See also cognitive abilities
Buddhism, 32, 170, 182
Calmes, Beth, 190
cancer
diet in treatment of, 99
drugs for, 94
hospice for, 146–47
immunotherapy for, 95
medical marijuana for, 99–100
online sources for, 86, 235
stage four, 77, 84, 85, 141, 147, 164, 228
strengthening immune system in, 99
survival times in, 94, 95
capacity, 215
cardiac catheterization, 110
cardiac defibrillators, implanted, 124, 130, 133
cardiac rehabilitation programs, 15
cardiac surgery, 109, 110
cardiopulmonary resuscitation (CPR), 217–18
care decisions on, 124
do-not-resuscitate (DNR) orders covering, 120, 218
POLSTs and MOLSTs on, 119, 120, 218
care, definition of, 215
caregivers
alliance for, 236
community programs for older people with respite for, 71
complex relationship with, 72
death’s impact on, 142
dementia and, 107, 114, 122, 124
dilemma of when to stop medical procedures, 122
dying process and, 168, 169, 232
finding and hiring, 71
frail people and, 112–13, 129
home death and, 176–77, 178
hospice and, 144, 147–48
online discussion group for, 237–38
PACE support for, 199
paid home care to help, 69, 70, 74
POLST and, 119, 121
terminal illness and, 70, 74, 85
caregiving role
family and, 70, 74, 236
tribe for sharing, 23, 158
C. diff infection, 139
charge nurses, 215
chemo brain, 216
chemotherapy
financial incentives for using, 96
quality of life and, 99
cholesterol-lowering statins, 18, 46, 74
Choosing to Die (Shacter), 154, 233
Choosing Wisely website, 49, 52, 227, 235
chronic illness, 77, 216
circling the drain, 216, 220
clinical effectiveness, 216
clinical trials, 97–98
coding, 216
cognitive abilities
Adaptation health stage and, 63
annual assessments of, 20
cholesterol-lowering statins affecting, 46
post-operative decline of, 22, 225
prednisone and other steroids affecting, 48
sleep drugs affecting, 240
Slowing Down health stage and, 37
cognitive reserve, 45
Cologuard screening tests, 49
colonoscopies, 49
comfort care, 68, 91, 145, 164, 216–17
dementia and, 126–29, 133
sample letter on, 127–29
comfort measures, orders for, 119, 126–29, 133, 192, 217, 229
community support programs and services, 60, 62, 70–71, 236–38
complementary medicine, 99, 217
concierge practices, 44–45
congestive heart failure (CHF), 217
Conversation Project, 28, 33, 240
CPR. See cardiopulmonary resuscitation
crash carts, 218
Cruzan, Nancy, 26–27
Cunningham nursing home, 204–5
cyanosis, 218
daily life
disaster-proofing your home against risks in, 64–67
simplifying, in Slowing Down health stage, 41, 52
DASH (Doctors Assisting Seniors at Home), Santa Barbara, California, 117–18
death and dying, 1–9, 161–93, 218
Ars Moriendi (medieval text) on, 3–4
behavior of gravely ill person before, 163
care provided during, 180–81
ceremonies of death and, 182
choosing time of, 152–55
desire to reclaim power to shape experience of, 5
emotional legacy after, 156–57
final hours in, 182–83
five emotional tasks before, 156, 160
goodbye rituals in, 190–91
“good death” concept and, 29, 30, 33, 168, 197–98, 205
health stages of later life and, 8
hoping to die well, 3
hospital and medical technologies signs of, 164
hospital setting for, 5–6, 7, 184–90, 192
life support removal before, 164, 184, 224
making use of time left before, 138–39
medical rights and planning ahead for, 24
notifications to be made after, 183
people’s feelings and wishes about, 7, 9
physical process of, 168–69, 175–76
physician-assisted, 152–53, 214, 219, 222, 226
poem and prayer recitations during, 192–93
preparing for, 135–60
reform movement focused on, 7–8
settling affairs before, 149–51
story about new art of, 197–209
story about signs before, 165–68
support circle for, 158–59, 160
ways to prepare for, 160, 192
47, 65, 74
See also dying at home
Death Cafes, 7
defibrillators, 218
implanted, 124, 130, 133
dementia, 107–33, 218
advance directives for, 119–21
care during last years of, 129
–32
caregivers’ dilemma over prolonging life in, 122–24
comfort care in, 126–29, 133
coping with, 122–24
goal of treatment in, 111–12
house call programs in, 116–19
medications causing, 47, 52
precarious health in, 111
resources for, 124
statements describing, 107
stories of families dealing with, 124–26, 130–32
as terminal illness, 121–22
trajectory in, 112, 122
ways to prepare for, 133
Devine, Meghan, 112
diabetes, 16, 18–19, 129
diabetes prevention programs, 20, 33, 43, 46
diet
cardiac health and, 15, 19
diabetes and, 18, 19
last years in dementia and, 129, 133
life-limiting illnesses and, 99, 101
lifestyle changes affecting, 16, 19
DNR orders. See do-not-resuscitate (DNR) orders
doctors
Adaptation health stage and overall health assessment from, 61
financial incentives for using medications and, 43, 96
frailty as distinct health stage and, 113
goals of care and, 77, 96, 164, 203, 221
health maintenance organizations (HMOs) and, 43
overmedication and, 45–46
preventive medicine and, 20, 33
referrals for physical, speech, or occupational therapy from, 63, 74
retirement communities with, 68
talking about terminal illness diagnoses with, 83–85, 94, 104
training in talking about terminal illness for, 83, 94
See also geriatricians; primary care doctors
Dolara, Alberto, 42
do not hospitalize (DNH), 218
do-not-resuscitate (DNR) orders, 28, 120–21, 133, 192, 218, 219
home death and, 178
keeping multiple backup copies of, 119, 121
Medic Alert bracelet for, 121, 127, 178
possible ignoring of, 121
do not transport (DNT), 218
drinking
alcohol use and lifestyle changes, 16, 20, 33, 237
voluntary stopping of eating and drinking (VSED), 153, 154, 178, 180, 206, 229
water intake and, 37, 65, 115
driving, decision to stop, 55, 56, 67
drugs. See medications
Drugs.com, 46, 235
Dunn, Hank, 124, 232
durable power of attorney for health care, 28, 33, 225
choosing ideal person as, 28, 33
See also power of attorney (POA)
Dwindles trajectory, 86, 89, 112
dying. See death and dying
dying at home
Americans’ desire for, 5
earlier family experience with, 4
hospice nurse and, 174, 175–76
Medicare Advantage plans and, 44
preparing for, 176–79
story about, 170–76
ways to prepare for, 192
eating
lifestyle changes affecting, 16, 19
voluntary stopping of eating and drinking (VSED), 153, 154, 178, 180, 206, 229
See also diet
edema, 219
Eden Alternative, 204
Ehrenreich, Barbara, 7
Emanuel, Ezekiel, 44
emesis, 219
end stage illness, 77, 219
euthanasia, 219, 224
evidence-based medicine (EBM), 43, 219–20, 235
exercise
aging and maintaining functioning using, 15–16, 17, 18, 19, 33, 40, 99, 129
overcoming challenges in, 19
pain management and, 46, 47
rehabilitation and, 63, 64, 72
sleep and, 48
failed back surgery syndrome, 21
failure to thrive, 220
fall prevention classes, 43, 65, 74
falls
aging bodies and, 16, 65
causes of, 114–15
exercise to prevent, 64–65, 74
eyesight and, 65
fire department’s “Lift and Assist” service for, 114
frailty and, 107, 108, 113, 114–15
during hospital stays, 109
house assessment for, 65–66, 241
medications and risk for, 45, 46, 47, 48, 50, 52, 129, 239, 240
retirement community policies on, 68
family
caregiving role and, 70, 74
conversations about medical decisions with, 29–30
legacy letters to, 100
morphine prescriptions and fears of, 145–46, 174, 177
terminal illness and, 89–90, 102–3
Final Exit Network, 154
financial plans
Adaptation health stage and, 62, 74
death and, 102
hospice and, 143
Medicaid and, 62–63, 66, 70, 241
FIT screening tests, 49
“Five Wishes” advance directive, 28, 33
Fonda, Jane, exercise videos from, 64, 238
Food and Drug Administration (FDA), 21, 94, 98
fragility, 220
frailty, 107
advance directives in, 119–21
factors in hospitalization decision for, 114–16
hospitalization’s impact on, 109–11, 113–14
house call programs in, 116–19
“House of Cards” health stage, 111–112, 124, 129
recognizing as distinct health stage, 112–13
possible services needed by, 112–13
statements describing, 107
story about family’s approach to, 108–10
surgery decisions in, 115–16
frequent flyers, 114, 221
friends
acceptance of reality of death by, 29–30
bad diagnoses and support from, 82, 83, 84
conversations about medical decisions with, 29–30
disability and help from, 69, 74
dying at home and, 177, 178, 179, 182
dying in a hospital and, 184–85, 186, 189–90
exercising with, 18
hospice and, 144, 145, 148
making a move and finding, 67, 68
neighbors as, 22–24, 33, 69
preparing for death and, 143, 154, 158, 159
as proxies or health care agents, 28, 30, 33
retirement communities and, 68
support networks with, 23, 57, 60, 69–70, 142, 160
surgery support from, 116
as a tribe, 23, 24, 158–59, 176
younger people as, 22, 33, 69
funeral plans, 102, 137, 174, 199, 208
Galin, Bronni, 56–59
Gawande, Atul, 7, 83, 86, 212
geriatricians, 52, 211, 221
goal of, 114
medication reviews by, 39, 45–46, 129, 130
preventive medicine and, 20
screenings and, 49
geriatrics, 8, 238
pharmacists with specialized knowledge of, 45–46
Slowing Down health stage and, 41
goals of care, 77, 96, 164, 203, 221
GoGo Grandparent rider service, 58
Gross, Dawn, 93
Hard Choices for Loving People (Dunn), 124, 232
Hazanov, Valery, 72–73
health care agent or health care advocate, 28, 85, 122, 158, 215, 225, 226
health care system
Adaptation health stage and, 60
concierge practices and, 44–45
reform movement focused on dying and, 8
Slow Medicine movement and, 42
health insurance
hospices and, 145
house call programs and, 118
Medicare Advantage plans and, 42–43, 43–44, 52, 117, 240–41
obtaining medical rights forms from, 28
wellness appointments under, 20
<
br /> health maintenance organizations (HMOs), 42–43, 44, 52, 67, 115, 240–41
health screenings, 41, 49, 52, 223, 227, 235
Heiser, K. Gabriel, 63, 241
Helman, Shoshana, 100
high-value care, 221
Hippocratic oath, 26, 27, 152
HMOs (health maintenance organizations), 42–43, 44, 52, 67, 115, 240–41
Hoefer, Daniel, 48, 108, 109
Hoffman, Ron, 84
Home Based Primary Care program (HBPC), Veterans Administration, 116, 242
home death. See dying at home
home health aides, 58, 62, 69, 71–72, 145, 200, 225, 238
hope, in terminal illness, 7, 82, 84, 100–102
hospice, 2–3, 143–49, 221–22
Medicare Advantage plans and, 44
morphine and other medications used in, 145–46
myths about, 143–48
next steps in learning about, 148–49
researching options in, 148
story about, 170–76
talking with doctors about, 83, 104
hospice nurses, and dying at home, 174, 175–76
hospital delirium, 222
hospitalization
factors in decision for frail people’s stay of, 114–16
Medicare Advantage plans and rates of, 44
hospitals
cardiac rehabilitation programs in, 15
frail people’s reactions to stays in, 109–11, 113–14
leaving “against medical advice” (AMA), 116, 131
as setting for dying, 5–6, 7, 184–90, 192
house call programs, 116–19, 145, 148, 179
housing
Adaptation health stage and choices in, 58–59, 67–69
disaster-proofing against risks in, 64–67
How to Protect Your Family’s Assets from Devastating Nursing Home Costs (Heiser), 63, 241
IADLs (instrumental activities of daily living). See ADLs (activities of daily living)
immune system
aging and, 40
bone marrow transplantation in cancer and, 171
C. diff infection in hospitals and, 139
impact of trauma to, 108
medications weakening, 48
radiation therapy in cancer and, 92
strengthening of, in cancer treatment, 99
immunotherapy, 95
implanted cardiac devices (ICDs). See defibrillators; pacemakers
incurable illness, 77, 81, 222
Institute of Medicine, 209
instrumental activities of daily living (IADLs). See ADLs (activities of daily living)
insurance. See health insurance
intensive care units (ICUs), 44, 121, 149, 164, 184–85, 189
deaths in, 5
Johnston, Judy MacDonald, 24, 237
Kaiser Permanente systems, 43, 44, 186, 210, 240
Kalanithi, Paul, 7
Keyssar, Judith Redwing, 155, 188
Lamar, Laura, and “Marj,” 38–40
late-stage illness, 77
law of double effect, 222
legacy letters, 100
lifestyle, changes in, 16–17, 20, 40, 217
life support, removal of, 164, 184, 224