by Katy Butler
living wills, 24, 27, 214
areas covered in, 28
obtaining forms for, 28
See also advance directives (ADs)
loneliness, 22, 70
Looping Decline trajectory, 86, 87–88
Loretto programs, 199, 204
loss, making peace with, 50–51, 52
Lovelace, Ada, 99–100
Lustig, Amy, 44
Lynn, Joanne, 86
marijuana, medical use of, 99–100
Marin Villages, 58, 241
Maynard, Brittany, 152–53
Mayo Clinic, 86, 235
McCullough, Dennis, 42, 232
Meals on Wheels, 60, 112–13, 236
Medicaid
bedside care near death and, 158
finances and qualifying for, 62–63, 66, 69, 70, 199, 241
home health aides under, 62
hospice and, 145
nursing home care under, 62
website for, 237
medical aid in dying (MIA), 222
medical care
Adaptation health stage and, 60
frailty as distinct health stage and, 112–13
Medic Alert Foundation, 121, 127, 178
medical orders for life-sustaining treatment. See MOLST (medical orders for life-sustaining treatment)
medical power of attorney, 28, 33, 225, 226
medical rights, 24–30
conversations with family and friends about, 29–30
Cruzan decision and, 26–27
examples of, 28
obtaining forms for, 28–29
sending copies of forms to physicians, 30
medical risks, evaluating, 21–22
Medicare, 211
choosing authorized representative for, 33
hospice benefit under, 144–45, 147, 148
house call programs and, 118, 145
Medicare Advantage plans compared with, 44
physical therapy under, 63–64
skilled nursing facility (SKF) under, 144–45, 166
taking advantage of coverage under, 21
wellness appointments under, 20
Medicare Advantage health plans, 42–43, 43–44, 52, 117, 240–41
medication reviews, 39, 45–46, 129, 130
medications
clinical trials of, 97–98
financial incentives for using, 43, 96
health maintenance organizations (HMOs) and, 43
hospices and, 146
overmedication and, 45–46
periodic reviews of, 39, 45–46, 129, 130
medicine
evidence-based, 43, 219–20, 235
hospitals as setting for dying and, 5–6
prevention and, 20–21, 33
prolonging life of body as mission of, 6
Slowing Down health stage and expectations of, 41
Slow Medicine approach to, 8, 42, 228, 234, 237–38
Mediterranean diet, 15, 99
melatonin, 48
memory
Adaptation health stage and, 61, 72
dementia and, 119–21, 129, 133
hospital stays and, 110, 222
keeping multiple backup copies of, 119
MOLST (medical orders for life-sustaining treatment), 28, 223
prednisone and other steroids affecting, 48
Slowing Down health stage and, 40
walking and increase in, 17
mood distress, 223
morphine, 140, 145–46, 174, 177, 181, 217
Moss, Alvin H. “Woody,” 83, 84
mourning rituals, 31, 51, 102–3
Mukherjee, Siddhartha, 98, 99
multiple co-morbidities, 223
multiple organ systems failure, 223
Murphy, Tom, 18
Mydirectives.com, 28, 33
National Suicide Prevention hotline, 155
Natural Causes (Ehrenreich), 7
neighbors
friendships with, 22–24, 33
support network with, 69
Niagara Falls trajectory, 86–87
Norman, John and Philippa 1–2
nosocomial conditions, 223
nursing homes
Eden Alternative in, 204
Gordon Lechenger, death in, 165–68
Loretta Downs, creation of “Chrysalis Rooms,” 179
Manfreddi family, experience with death in, 197–209
Medicaid coverage of, 62
preparing for dying in, 179–80
occupational therapy, 8, 60, 63, 65–66, 74, 91, 117, 199, 210
Oliver, Mary, 153
open-heart surgery, 22, 109
opiates, 146
O’Reilly, Matthew, 149
overdiagnosis, 223
overmedication, 45–46, 48
overtreatment, 224
dementia and, 132
overdiagnosis leading to, 223
Slow Medicine and, 42
PACE (Program of All-Inclusive Care for the Elderly), 198–202, 203, 204–5, 208, 209, 210
pacemakers, 2, 224
painkillers
advance directives on, 119, 128
from drugstores, 46–47
pain management, 21, 46, 91, 144, 146, 158, 167, 186, 192, 224
palliative care, 224
benefits of, 91
decision on when to begin, 93
terminal illness with, 90–92, 93, 104
palliative care doctors, 86, 90, 92, 97, 104, 139, 215
Pap tests, 49
patient representative, 225
patient-centered care, 8, 225
Perrine, Lori, 188
person-centered care, 21, 225
pharmaceutical industry
financial incentives for, 96
information website funding by, 86
pharmacists, medication reviews by, 45–46
physical therapy, 8, 20, 18, 60, 63–64, 74, 91, 117, 129, 143, 200, 210, 211
adaptation health stage and, 60
pain management with, 47
physician referrals to, 20, 74
physician-assisted suicide, 152–53, 214, 219, 222, 226
physician orders, 225. See also specific orders
physician orders for life-sustaining treatment. See POLST (physician orders for life-sustaining treatment)
physicians. See doctors
Physician’s Desk Reference, 46, 233
Pilates, 64, 65, 74
podiatrists, 18, 200
POLST (physician orders for life-sustaining treatment), 28, 218, 225
dementia and, 119–21, 129, 133
keeping multiple backup copies of, 119
post-operative cognitive decline (POCD), 22, 225
power of attorney (POA), 225. See also durable power of attorney
prednisone, 47
prescription medications. See medications
preventive medicine, 20–21, 33
primary care doctors, 226
concierge practices and, 44–45
establishing rapport with, 20–21
finding a younger doctor for, 20
medical decision documents sent to, 30
medication reviews by, 45–46
preventive medicine and, 20, 33
Slow Medicine movement and, 42
prognosis, 226
progressive illness, 77, 226
proxy, 28, 33, 215, 226
PSA (prostate cancer) tests, 49, 223
quality of life, 226
chemotherapy and, 99
medicine’s goals for, 6
people’s survey responses on, 7
refusal of medical treatment, legal right to, 26, 27
religious beliefs
contemplation of death and, 31–32
medical technologies in prolonging life and, 123–24
religious groups, retirement communities of, 68–69
response rate, 227
retirement communities, questions to ask when choosing, 67–69
risk
management, 227
Royal Canadian Air Force exercise, 64, 129
Schultz, Zacharias, 9
screenings, 41, 49, 52, 223, 227, 235
sepsis, 227
Shacter, Phyllis, 154, 233
shared medical decision-making, 227–28
Share the Care (Caposella and Warnock), 158, 242
simplifying
Adaptation health stage and, 61–62
Slowing Down health stage and, 41, 52
skilled nursing facility (SNF), 109, 144–45, 166, 228
sleep
exercise and, 16
fixes for problems with, 48
sleeping pills, 39, 47–48, 74, 214
Slow Medicine, 8, 42, 228, 234, 237–38
smoking, and lifestyle changes, 16, 17, 20, 33, 237
speech therapy, 44, 63, 74
spirituality, 31–32
contemplation of death and, 31–32, 33
nursing home residents and, 73
stage four cancer, 77, 84, 85, 141, 147, 164, 228
stair step down trajectory, 86, 88, 112
statins, 18, 46, 74
steroids, 47
Stolberg, Michael, 25
strength
aging and changes in, 89
ways of improving, 65, 99
strength training, 15–16, 239
suicide
hotline for, 155
physician-assisted, 152–53, 214, 219, 222, 226
support groups, 20, 33, 43, 83, 97, 104, 237
support networks, 23, 57, 60, 69–70, 142
death preparations and, 158–59, 160
support programs and services, 60, 62, 236
surgery
cognitive decline after, 22, 225
frail people and, 115–16
medical risks in, 22
surrogate, 33, 215, 225, 226
choosing ideal person as, 28, 33
obtaining forms for, 28
surrogate effectiveness, 227, 228
t’ai chi, 64, 65, 74
terminal illness, 220, 222, 228
clinical trials during, 97–98
death-hastening prescriptions and, 152, 214, 219, 222
dementia as, 121–22
doctor’s diagnosis of, 77, 84, 137
enjoying time left in, 100–102
fears about, 94
hope in, 7, 82, 84, 100–102
hospice for, 143, 181
online sources for, 86, 235
palliative care in, 90–92, 93
patient’s focus on family in, 102–3
patient’s staying in charge during, 94–97
preparing family for, 89–90
story about patient handling diagnosis of, 78–81
support groups for, 83
support programs for, 237
treatment for, 95, 146
understanding trajectory of, 85–89
what life activities matter to patient during, 93–94
terminal sedation, 228
Total palliative sedation, 228
tribe, friends as, 23, 24, 158–59, 176
Tylenol, 46, 47
Uber, 58
Veterans Administration, 116, 242
Villages mutual aid network, 58, 67, 237, 241
visiting nurse programs, 117, 119
Visiting Physicians Associations, 118, 119, 242
Vitaltalk, 83, 94
voluntary stopping of eating and drinking (VSED), 153, 154, 178, 180, 206, 229
Von Koss, Doug, 14, 16, 21, 24, 50, 67
Walski, Ed, 124–26
walkers, 39, 55, 63, 66–67, 107, 108
walking
Alzheimer’s and, 147, 148
benefits of, 17–18
cane for, 64
dementia and, 122
frailty and, 107
hospitalization and, 110, 111, 115
water
staying hydrated, 37, 65, 115
voluntary stopping of, 203, 229
water-walking, 37, 56, 58
ways to prepare suggestions, 33, 52, 74, 104, 133, 160, 192
wellness appointments, 20–21
When Breath Becomes Air (Kalanithi), 7
Widera, Eric, 46, 115
yoga, 47, 65, 74
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Copyright © 2019 by Katherine Anne Butler
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Library of Congress Cataloging-in-Publication Data
Names: Butler, Katy, 1949– author. Title: The art of dying well : a practical guide to a good end of life / by Katy Butler.
Description: First Scribner hardcover edition. | New York : Scribner, 2019. Identifiers: LCCN 2018037020 | ISBN 9781501135316 (hardback) | ISBN 9781501135477 (paperback)
Subjects: LCSH: Terminal care. | Death. | BISAC:
SELF-HELP / Death, Grief, Bereavement. | MEDICAL / Terminal Care. | BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs.
Classification: LCC R726.8 .B882 2019 | DDC 616.02/9–dc23 LC record available at https://lccn.loc.gov/2018037020
ISBN 978-1-5011-3531-6
ISBN 978-1-5011-3532-3 (ebook)