Caring for a parent at the end of life · September 2026
Awake Enough to Talk
Ruth told her oncologist she wanted to be awake enough to talk to her daughter. At 11:40 one October night, a nurse Dana had never met needed those words.
By Jodi and Bill
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It is 11:40 on a Tuesday night in October, and Dana stands in the upstairs hallway of her mother's house in her socks. The hospice nurse still has her coat on. Dana has never met her. The nurse covers nights for another team, and the medicine list on her tablet does not match the bottles on the dresser. At the end of the hall Dana's mother, Ruth, has been awake since ten, when the pain woke her and she called Dana's name the way she used to call it up the stairs at suppertime. Dana gave her the dose from the hospice's kit, as the nurse on the phone told her to. It has not held.
The nurse is kind and fast. "What did the oncologist say about the morphine?" she asks. "And did your mother want to go back into the hospital?"
Dana knows the answers. Her mother said them in early September, in an exam room with Dr. Reyes. But Dana has slept four hours a night for two weeks.
Ruth, 78, lived alone forty minutes away, in the house Dana grew up in, with a pill case by the kitchen sink. Dana's father died years ago, and her brother lives in another state and calls on Sundays. Dana lives closest, so Dana carries it.
Two years ago Dana, now 53, was the woman awake at 3 a.m. with hot flashes who found a nurse practitioner named Julie and got her nights back. The app on her phone is Gale. We are building it for women from 40 to 70, the years when, for many of us, the person we care for becomes a mother or a father. Most of what it does for Dana in these weeks does not exist yet.
Ruth's care happens at home now, between the visits and mostly at night. What she wants is in her own words, in Dr. Reyes's note. Her insurance covers her doctors' visits as it always has, and since she chose hospice, Medicare's benefit pays for almost all of the care for her illness. The nights are another matter.
Her care happens between the visits
I
Her mother's year
In a year like Ruth's, a doctor sees a patient for only a few hours.
Ruth's last ordinary year looked healthy. She had high blood pressure, a slow thyroid and arthritis in both knees: three conditions, three compartments in the pill case. In July her back started to ache, and her doctor blamed her arthritis. Then the weight came off without her trying, and in late August her eyes turned yellow. A short hospital stay put a stent in her bile duct, and the scan found cancer in her pancreas that had already spread to her liver. About half of pancreatic cancers are found only after they have spread to distant organs 1.
8,760 hours8,760
One year of Ruth's life, one square per hour.
About one hour~1 hour
The ringed square is a year's exam time with an office-based doctor for the average American: about three visits 2 of about 18 minutes each 3.
Measured another way, a visit lasts 13 minutes 4 or 24 5. Either way, about one square.
About 21 hours~21 hours
The faint squares are the hours inside the system that can be counted: the drive, the waiting room, the emergency department, a hospital bed 678.
With three or four chronic conditions4 · 25
Ruth had three. Someone managing three or four long-term conditions has about 12 outpatient visits a year 9: about 4 hours of exam time 3, about 25 inside the system once the drive, the waiting room and the emergency room are counted 698. A year with a hospital stay adds days on top of that.
720 hours720
The shaded month is the 30 days after leaving the hospital. In 2003 and 2004, about one hospital stay in five on traditional Medicare ended with a return within it 10. Everything left of Ruth's life after her stent fit inside two such months.
The rest of the year8,739
The hours left: about 8,739 2678. This is where the back pain started and the weight came off, and where a daughter started driving forty minutes each way.
She had about seven weeks.
II
Seven weeks
A week has 168 hours. Hospice came to Ruth's house for a few of them, and Dana was there for most of the rest.
Ruth spent the last three of her seven weeks at home, in her own bed, and hospice changed the shape of the week. A nurse came twice, an aide twice for a bath, a social worker once, and a chaplain called to offer a visit. Everyone was kind, and everyone left.
Hospice, in person3.6 hours
One week, one square per hour. The lit squares are the time hospice nurses, aides and social workers spend with a patient on routine home care, in person, each week: 218 minutes, about 3.6 hours. The nurse's share is 92 minutes, about 1.5 hours 1112.
Medicare, 2024: 3.9 visits a week, 1.8 of them a nurse's 11.
The help it takes61.3 hours
The shaded squares are the hours of help an older person cared for at home receives each week in the last year of life, paid and unpaid: 61.3, from about 2.5 people 1314.
One family caregiver, in the last weekabout 101 hours
The hours one family caregiver gives in the last week of home hospice: 14.4 a day, about 101 in the week 15.
Over a whole last year, one unpaid caregiver gave about 23 hours a week, as its authors reported 16.
All three3.6 · 61.3 · 101
The hospice's hours, the help a dying person receives across a last year, and one family caregiver's last week, side by side. Most of that help comes from family, not from anyone paid 13.
For those three weeks Dana slept in her old bedroom with both doors open. About half of the 57 family caregivers of hospice cancer patients in one study had symptoms of insomnia, including 12 of the 25 adult children 17. Dana woke at every sound, including her mother's breathing, which changed before the pain did.
III
Who carries it
The people who carry someone through the last year of life look a lot like Dana.
Before hospice, Dana took the calls in her car in the office parking lot, between meetings. She knew the pharmacy's hours and the drawer with the insurance cards. Her brother asked good questions she had no time to answer.
Daughters38.2%
Of the unpaid caregivers of older adults in the last year of life, 38.2% are daughters, against 22.3% sons and 14.4% spouses. 60.7% are women, and their average age is 56 14.
Among caregivers aged 50 to 64, 60% care for a parent or a parent-in-law 18. Of the end-of-life caregivers, 44.5% also work for pay 14.
Nursing without training55% · 22% · 54.6%
55% of family caregivers do medical or nursing tasks, and 22% of those were trained for them 19. In the last month of life, 54.6% of caregivers help manage pain 20.
Never asked32.3%
Of the last-month caregivers who dealt with clinicians, 32.3% were never asked whether they needed help managing treatments 20.
Caregiving makes it hard to look after their own health, say 23 percent of caregivers and 26 percent of women caregivers 21. They still get flu shots as often as anyone 22.
For Dana, what slipped was the care that needs an appointment and a free hour. In September she missed her follow-up with Julie and let her patch refill lapse, and the heat came back at night, which hardly registered, since she was up anyway. Julie's office called about the missed visit. Dana said her mother was dying. Julie said she was sorry, and told her, "Come back when you can."
I know where the insurance cards are. I'm the one who's here.
Dana, in September
IV
Late
Ruth's oncologist sent her to palliative care in early September. For many people that referral comes late, or never.
In the exam room at Ruth's second visit, on September 4, Dr. Reyes asked her, before any talk of scans, what mattered to her now.
"I want to be at home," Ruth said. "I don't want to go back to the hospital unless it's the only way to stop pain. I want to be awake enough to talk to my daughter."
She added two more. "If the pain is waking me up, I want something done about it. I don't want to wait until the next appointment." Then she named Dana. Dr. Reyes typed it all into the note, word for word, and referred Ruth to palliative care, which treats pain and symptoms alongside everything else. The hospital's palliative clinic had its first opening five weeks out.
Never heard of it71% · 34.5%
About 71% of US adults said in 2018 that they knew nothing about palliative care 23. 34.5% of rural hospitals with 50 or more beds offer it 24.
Seen, and seen late24.6% · 27%
In one Virginia metro area, 24.6% of people who died of cancer ever saw a palliative-care team, and half of them were first seen in the last 30 days 25. In a large study of advanced lung and colorectal cancer, oncologists documented an end-of-life conversation with 27% of their patients 26.
Where one was documented, the first came a median of 33 days before death, 55% of the time in a hospital 26.
Hospice, briefly52.9% · 25%
52.9% of Medicare decedents used hospice in 2024 27. A quarter of them had five days of hospice or fewer; half had 19 days or fewer 28.
Rated32%
32% of hospices have a family-caregiver star rating on Medicare's Care Compare site 29.
The rated ones are larger and cared for 88% of Medicare decedents who used hospice in 2024; the typical ZIP code has 5 hospices, 4 of them rated 2930.
That night Dana searched the app she already used with Julie, where hospice and palliative care is its own kind of care, and found a palliative-care doctor. She called the office in the morning, and the doctor saw Ruth by video four days later.
V
Where she wanted to be
Most people say they want to die at home, as Ruth did, and fewer than half of cancer deaths happen there.
After one round of chemotherapy, Ruth decided one was enough. The night the pain would not stop came in late September. Ruth called at 2 a.m., and Dana found her on the edge of the bed, rocking, her pills doing nothing. Ruth had said she didn't want to go back to the hospital unless it was the only way to stop the pain. That night it was the only way. Dana called 911.
Four days in the hospital brought the pain down, and a scan showed the cancer growing. Ruth asked to go home.
Where people want to die71 of 100
One hundred American adults, one square each. 71 said they would prefer to die at home 31.
One hundred older people dying with metastatic cancer who lived at home, not in a nursing home: 58.3 got at least one marker of aggressive care, such as cancer treatment in the last 30 days, intensive care, or hospice only in the last three days 33.
Together71 · 45.6 · 58.3
Most adults say they would choose home. Fewer than half of cancer deaths happen there. More than half of older people dying with spread cancer who lived at home got aggressive care in their last month.
Six months after a death from cancer, caregivers whose person died in a hospital were about four times as likely to have prolonged grief as those whose person died at home with hospice 34.
On the third day of Ruth's stay a case manager handed Dana one name. Hospitals must give patients a list of choices for home health, nursing homes and rehab; hospice is not on that list, and in 2019 Medicare declined to add it 3536.
At one in the morning, in the parking garage, Dana compared star ratings on her phone. The name she had been handed had none. She called two that did.
Ruth went home to hospice on the fifth morning. Dana moved into her old room that day.
VI
The night
Pain rises near the end of life, and on some of the last days no nurse, doctor or social worker comes.
The pain came mostly at night; the nurse came by day. Her brother called on Sunday and asked how the nights were, and Dana said fine.
Two years before26 of 100
One hundred older Americans two years before death: 26 are often troubled by at least moderate pain 37.
Cancer 45, heart disease 48: the rise comes whatever the cause 37.
Died on a Tuesday7.4
One hundred hospice patients on routine home care who died on a Tuesday: 7.4 got no visit from a nurse, doctor or social worker in their last two days 38.
Side by side, the pain that rises near the end, and the last days when no nurse, doctor or social worker comes.
The hospice had left a kit in the refrigerator, the kind hospices keep for pain and breathlessness 39. Medicare already requires hospices to have nurses and drugs available around the clock, and pays for a nurse to stay in the home through a crisis 40. In one home hospice, about 4 in 10 family caregivers felt very comfortable managing symptoms 15.
In the second week at home the pain woke Ruth on a Wednesday night and again on Thursday. Both nights Dana gave her a dose from the kit, and it worked, slowly. Dana did not call the hospice's night line, which is there for exactly those nights. She didn't want to bother anyone. Both mornings Ruth told her it was nothing.
By then Ruth was too tired to hold her phone and had Dana answer her Gale cards. In September she and Dr. Reyes had agreed that if pain woke her two nights running, her team should hear, and when she chose hospice she had named Dr. Reyes as her own doctor 41. Dana had been noting the nights.
GALE · 7:10 AM · Dana, for her mother
Pain has woken your mother two nights running. In September she asked that her team hear when it did.
Her words, with Dr. Reyes: "If the pain is waking me up, I want something done about it. I don't want to wait until the next appointment."
Ask for a call this morningBook a visit todayNot now
This message is from Gale's software, not from Dr. Reyes. The sentence is your mother's.
She tapped the first button. Dana had not wanted to bother anyone. Ruth had settled that in September, while she could.
VII
Who answers
Medicine has spent twenty years trying to watch patients between visits, and it has helped some of them.
Dr. Reyes called at 8:40, then called Ruth's hospice nurse, and together they changed her long-acting pain medicine, with the reason in the note.
How to read it0.83 → 0.99
Each row is a study result. Left of the line means fewer bad outcomes for the people watched; a bar that crosses the line means the study couldn't tell. In cancer, weekly symptom reports with nurse alerts looked like they helped people live longer 42, then didn't when the trial was repeated in 52 practices 43.
The repeat trial did find fewer emergency visits 44. In the first, nurses answered 77% of alerts with a phone call 45.
Hearts0.70 → 0.88
Heart-failure monitoring helped recently hospitalized patients when a doctor-led center watched 46, but not stable ones 47. An implanted sensor cut hospital stays 48, then missed in a broader group 49. A heart-rhythm recorder tripled diagnoses without significantly cutting strokes 50.
After a crisis0.56 · 0.57 · 0.52
A safety plan plus follow-up calls after an emergency visit went with about half the suicidal behavior 51; pooled studies of safety plans found much the same 52; caring texts cut attempts 53.
Palliative care sits beside the chart, not on it: its founding trial's published summary gives percentages, not a ratio. In that lung-cancer trial, 16% of patients given palliative care early had depressive symptoms, against 38% with usual care 54.
Pooled across 43 trials, its authors reported no clear difference in survival 55.
Someone who can act13 of 17
Now marked: the results where a named clinician, nurse or team got the reports and could change the treatment. Of 17 results, 13 are marked. Most of the studies that helped are marked. So are most that didn't 43474950.
In one lung-cancer trial, alerts sent to the patient alone did as well as alerts sent to the clinician 56.
In depression care, when symptom scores went to a clinician who used them to adjust the dose, people got well in a median of 4 weeks instead of 8 57. When the scores were simply fed back, symptoms improved no more than without them 58.
The trial that looks most like Dana had family caregivers who averaged 60 years old, 79 percent of them women. Three weekly coaching calls, with monthly check-ins after them, started right away instead of three months later, left them less depressed at three months and in the months before the death 59. Someone called before they asked.
Her wishes are hers
VIII
What she said she wanted
The nurse needed Ruth's wishes. Most American adults have not completed an advance directive.
Asked to predict a patient's choices in imagined scenarios, relatives and named surrogates got them right about two times in three. Being named, or having talked it over beforehand, did not make them more accurate 60.
At 11:40 the nurse in the upstairs hallway still had her coat on, and she still needed an answer about the hospital.
Written down36.7 of 100
One hundred American adults: 36.7 have completed an advance directive 61.
One hundred older patients in an emergency department: 59 said they had made a plan. The emergency department could find a plan or a current code status in the record for 13 62.
Older patients helped by a trained facilitator to say what they wanted and to name someone to speak for them: among those who died, wishes were known and followed for 86 in 100 63.
A randomized trial in Melbourne, patients 80 and older 64.
Their bereaved relatives had more stress, anxiety and depression 63.
Together36.7 · 13 · 86 · 30
Written down for about one in three. Findable for far fewer. Followed far more often when someone helped her say it, and name who would hold it.
Dana did not have to guess. She held out her phone.
GALE · 11:41 PM · Dana, for her mother
What she said she wanted: to Dr. Reyes, September 4
"I want to be at home. I don't want to go back to the hospital unless it's the only way to stop pain. I want to be awake enough to talk to my daughter."
Her pain medicine: changed 4 days ago by Dr. Reyes with her hospice team, with the reason in the note
Everything she takes now: 7 medicines, as her clinicians last wrote them
Doses from the hospice kit, as Dana logged them: Wednesday and Thursday last week, and tonight at 10
The last three decisions, and who made them
Show the nurseAsk the on-call clinicianNot now
Your mother chose what this card holds. You see exactly what goes before anything is sent.
The nurse read the first line twice. The signed order on the refrigerator said what not to do if Ruth's heart stopped; only her sentence said what she wanted.
The nurse weighed moving Ruth to the hospice's inpatient care. She called the hospice's on-call doctor from the landing instead. She read him the change from four days before, and what Ruth had said she wanted. She asked for a dose that would ease the pain without putting Ruth under.
She gave it at ten past twelve. By half past, Ruth was asleep.
IX
Where the record sits
People have spent thirty years trying to keep a person's record, and her wishes, somewhere she controls.
Before that card, Ruth's words lived in Dr. Reyes's note, in a system the hospice could not open, and in Dana's memory.
The ones that closed
Google Health closed in 2012, Microsoft HealthVault in 2019 65. End-of-life planning closed too: Washington's living-will registry in 2011, to save $104,000 66; Lantern in September 2024 67; and Cake, which closed every individual account in June 2025, with the links families used to share wishes 68.
The ones still running
Apple Health Records grew to more than 800 hospitals and clinics by 2022, by Apple's count 69. Since 2021, federal rules have barred providers from blocking your access to your own record 70, and a national network now passes records between institutions 71. The U.S. Living Will Registry never closed; it was renamed, and still runs, small and private 72.
In 2018, 14 states had a registry for advance directives or portable medical orders 73.
Opened at least once25% → 65%
The share of American adults who opened an online record or portal at least once in the past year: 25% in 2014, 65% in 2024 74.
The share who opened the portal of someone they care for went from 24% in 2020 to 51% in 2024 75.
Seven in a hundred59 · 7
One hundred American adults in 2024: 59 have more than one portal 76. Seven use an app to bring them together 77.
When Cake closed, the wishes families had stored there closed with it 68.
X
The handoff
Ruth came home from the hospital in late September with a printout, and printouts like hers often leave things out.
Ruth's discharge took six hours and eleven printed pages. When the hospice's admission nurse came that evening, she sat at the kitchen table with the printout, the pill case from beside the sink and a shoebox of bottles, and before anything else, she started on the list.
What the summary leaves out65% · 21% · 14%
Across studies of hospital discharge summaries, pending test results were missing from 65%, the discharge medicines from a median of 21%, and the follow-up plan from a median of 14% 78.
Sent onward16–17%
16% to 17% of US hospitals routinely send an electronic summary of care to most or all of the long-term and post-acute providers they discharge to 79.
8% receive records back from most or all of them 80.
A seat of her own10.3%
At three health systems, 10.3% of patients 65 and older had registered a care partner with her own login to their portal 81.
The law already gives a daughter a seat. Federal privacy rules let clinicians share with family involved in a patient's care unless the patient objects 82, and laws in 45 states and territories require hospitals to record a family caregiver's name and show her the tasks 83.
In one pilot at two hospices, the admission nurse's medicine list and a pharmacist's differed for every patient, about 8.7 times each 84. Ruth's printout listed the pain dose from before her hospital stay, and a blood-pressure pill she had stopped in August.
XI
Reading the notes
Many patients who read their own notes find what they think is a mistake, and Dana found one in her mother's.
The night of the discharge, Dana read the discharge note on her mother's portal, logged in as her mother. It listed the same old pain dose and said nothing about what Ruth wanted.
22,889 readers22,889
Each square is one patient who read at least one of their own notes and answered questions about mistakes, in a survey at three American health systems 85.
4,8304,830
The lit squares are the readers who found something they thought was a mistake 85.
These are mistakes as patients saw them; nobody checked them against the chart 85.
In one Swedish study about four in ten portal users who found an error did nothing about it, and at one American health system about 0.2 percent of patients who asked for their chart ever filed a formal correction 86. Dana sent one line to Dr. Reyes's office. By the next afternoon the hospice's orders were right.
The coverage she already has pays for it
XII
The appeals nobody files
Most denials are never appealed, and Ruth's was one of them.
On the third day of Ruth's stay, before the case manager handed Dana that one name, the discharge planner had ordered a hospital bed for home. Ruth's Medicare Advantage plan said no, and nobody appealed; there was no time, and nobody to do it.
A thousand denials1,000
Each square stands for about 4,100 of the 4.1 million times Medicare Advantage insurers said no to a request for approval in 2024 87.
The lit squares are the denials somebody appealed: 11.5% 87.
93 overturned93
Reversed in full or in part: four appeals in five 87.
The appeals people chose to file may not look like the ones they didn't 88.
One week in 20199 of 30
Government auditors took a random sample of one week's denials at 15 of the largest plans. Doctors reviewed 247 of them and found 30 that met Medicare's own coverage rules 89, an estimated 13% of that week's denials 90. By the time the auditors asked, 9 of the 30 had been reversed 89.
All 7 of the 30 that were appealed were reversed 90.
0.31%0.31%
Insurers on HealthCare.gov denied 85 million in-network claims in 2024. Patients appealed 0.31% of them 91.
In one national survey, 85 percent of people with a denied claim never filed a formal appeal 92. Two days after the order, the hospice brought a bed, because its benefit covers equipment 93.
XIII
What Medicare already pays for
Medicare already paid for more than Dana knew, and much of it goes unused.
Dana took unpaid family leave for the last three weeks, in the fall her youngest started high school. Although Ruth had a Medicare Advantage plan, traditional Medicare paid her hospice 94. The hospice benefit covers the nurse, the aide, the on-call line, the drugs for pain and symptoms, the equipment, and short stays of inpatient care when pain cannot be controlled at home 93. In 2024, 16 percent of hospice patients had at least one day of that inpatient care 40. What surprised Dana was what else was covered.
A night off, a nurse through a crisis4% · 2%
The hospice benefit pays for respite: up to five nights at a time in a facility, so the caregiver can sleep. 4% of hospice patients used even one day of it in 2024 9596. Crisis nursing, at least eight hours of care at home in a day, mostly from nurses, while symptoms are out of control: 2% 4097.
The family's share of respite is about $27 a night 98.
The conversation21.9% · 14.1%
Medicare has paid for conversations about end-of-life wishes since 2016. By 2019, 21.9% of traditional-Medicare decedents aged 66 and older had had one billed, and 14.1% of first conversations happened at the yearly wellness visit, where they cost nothing 99.
New, and nearly unused7,934 · ~5,100
A benefit that pays a trained navigator to guide someone with a serious illness through the system was billed 7,934 times in all of traditional Medicare in 2024 100. The main code for paid family-caregiver training was billed for at most about 5,100 patients 101.
Around, and after50% · ~30%
50% of working caregivers say their employer offers paid family leave: 60% of salaried workers and 35% of hourly ones, in 2025 102. At one Connecticut hospice, about 30% of family caregivers of cancer patients used its bereavement services in the year after the death 103.
Nobody mentioned the five nights of respite. It was hers to ask for. On the first evening the hospice social worker told her once, at the kitchen table, that the hospice offers the family bereavement support for up to 13 months after the death, and left a folder with a phone number on it. Dana put the folder in the drawer with the insurance cards.
XIV
What it costs
Hospice charges a family almost nothing. An aide for the hours it leaves uncovered costs thousands a week.
Families of hospice patients pay less out of pocket in the last month of life, not more 104.
Hospice$0 · $133
What the hospice itself charges the family: nothing for its care, and up to $5 a prescription for pain and symptom drugs 9398. Five nights of respite, the most at one time, come to about $133, at about $27 a night 98.
Room and board are not covered outside the short inpatient and respite stays the hospice arranges, which matters if she cannot stay at home 105.
The hours hospice doesn't cover$420 · $1,400 · $5,750
A non-medical home aide at the 2025 national median of $35 an hour: one 12-hour night $420, a 40-hour week $1,400, and every hour the hospice's visits leave uncovered about $5,750 a week 106107.
How many hospice families hire aides on top of hospice is unmeasured 108.
Her own money~$139
The average family caregiver spends $7,242 a year of her own money on caregiving, about $139 a week 109.
In one study of home-hospice caregivers, 29 of 40 rated their sleep fair or poor 110. Dana's brother paid for two nights of an aide so she could sleep: two nights out of about twenty. On the other nights she slept with both doors open.
Ruth died in the middle of October, in her own bed, with the pain under control. The day before, she was awake most of the afternoon. She and Dana talked about the house, about Dana's brother, about nothing much.
What Gale does
Her own words, and who hears them
Between the visits
A parent's own oncologist, or a palliative-care clinician she finds in Gale's care search 111, writes down with her, early and in her own words, what she wants and what should happen when something goes wrong. The app watches for that and nothing else, and when it comes true it offers what the clinician already promised: a call, or a visit. It never calls a number abnormal, never names a drug or a dose, and its own unprompted check-ins stop at two in 30 days 112. 988 and 911 sit outside every agreement 113. All of it works the same when the parent is a father.
Hers, and the person she names
Her sentence can name up to four people, and each receives only the sentence she wrote for them 114. Before anything reaches a clinician she sees every line with a switch; turn one off and the clinician sees nothing about it, not even a count 115. No clinician screen shows a Not now 116. Permissions come one source at a time, each quoting her sentence 117. She can download her whole record in one tap 118.
One part she agrees to in the room, for the weeks she may not manage it herself: if she says Not now to her own sentence twice, it goes to the person she named 114. Had Ruth been waving off her own cards, a text or email would have reached Dana with her mother's sentence and nothing else. The card below is what we are building for her to read it on:
GALE · 7:05 AM · Dana, for her mother
Your mother asked that you hear this.
Her words, with Dr. Reyes: "If the pain is waking me up, I want something done about it."
She has said Not now to it twice. In September she asked that it come to you.
Ask for a callSee her planNot now
Only this sentence was sent to you. She can untie it in one tap.
Already paid for
Nothing new to buy. The visit where she says what she wants, and the follow-up visits with her own clinician, bill as ordinary visits 119, priced before anyone books, with one exception we still have to fix, named at the end. Once she is on hospice, Medicare pays the hospice a daily rate that covers its nurses, drugs and equipment 9398. The app carries no fee.
What we are still building
Most of what Dana used in this story does not exist yet. The person she names has no screen yet: we built the send to that person, but not the screen that person would read it on 120. Nor can that person answer her cards for her, the way Dana did 120. Dana cannot yet log what she sees at home, such as pain waking her mother or a dose from the kit 121. Gale does not yet store her wishes in her own words 122. The card does not yet carry the hospice's 24-hour number 113. Our search does not yet list hospice agencies with their ratings 111. And we cannot yet bill traditional Medicare 123. The cards in this essay show those pieces working because they are what we are building next.
How we'll know it works
No family has used this yet. When families do, we will ask them afterward whether their person died where she said she wanted, compare the answer with similar families on usual care, and publish it either way. For scale: families who answered that question say their person died where she wanted 72.8% of the time when hospice lasted more than three days, and 40.0% when it didn't 124.
For clinicians
To the oncologist, the palliative-care team, and the nurse at 11:40
Much of what went right in Ruth's last weeks was a clinician's doing. Dr. Reyes asked her, before any talk of scans, what mattered to her now, and typed the answer word for word. We ask one thing of you: have the conversation early, while she can still argue, and type her answer in her words, not yours. "Awake enough to talk to my daughter" tells a nurse at midnight more than any checkbox.
In one large study of advanced lung and colorectal cancer, oncologists documented that conversation with 27 percent of their patients 26. At referral to hospice, clinicians in one study overestimated survival by a factor of 5.3 125. Medicare has paid for the conversation itself since 2016 99, and in Gale it bills as an ordinary visit 119. Every request that reaches you is one you wrote with her, and nothing else; no reading arrives at 3 a.m.
To the hospice nurse: you walk into a stranger's house at night with a medicine list that, in one pilot, differed from a pharmacist's about 8.7 times per patient at admission 84, after an evening in which one agency's line took about ten calls, more than a third of them about supplies and refills 126. You deserve her words, the last change and who made it, and what her daughter saw, on one screen, before you ask.
How many nights last week did you get up for someone else?
Receipts
About one hour, 21 hours, 4 and 25 computed
Carried from our earlier essays. 320.7 office visits per 100 people in 2019 2 × 18.0 minutes per exam 3 = 57.7 minutes, one square; other measures give 13.3 4 and 23.5 minutes 5. Inside the system: 3.207 visits × 121 minutes 6, plus 0.427 emergency visits 8 × an assumed 3 hours, plus 562 inpatient days per 1,000 7 × 24 hours = 21.2 hours. With three or four chronic conditions, 12 visits 9 give 3.6 exam hours 3 and 12 × 121 minutes = 24.2 hours of travel and clinic time 6; 20% had an emergency visit 9, counted as one visit each at the assumed 3 hours 8, which adds 0.6 for 24.8, a floor, since some had more than one. The 10% with a hospital stay 9 are left out: we have no checked length of stay for this group. 19.6% of traditional Medicare discharges in 2003 and 2004 were readmitted within 30 days 10. 51% of pancreatic cancers are diagnosed at a distant stage, as the National Cancer Institute reports 1.
One week: 3.6, 61.3 and 101 hours computed
MedPAC, 2024, routine home care: 3.9 visits and 218 minutes a week (nurse 92, aide 112, social worker 13), in-person visits only, so phone calls, the on-call line and chaplain visits are not counted 1112; 218 ÷ 60 = 3.63 hours 107. Ornstein and colleagues, 2011 data: 61.3 hours of help a week in the last year of life 13, from about 2.5 people (2.3 million caregivers for about 905,000 decedents, our division) 14; 8.9% of those dying had any care paid for by government or insurance, and family and unpaid caregivers gave most of it 13. The last week: 14.4 hours a day × 7 = 100.8, reported by 363 family caregivers at one New York home hospice, where about 4 in 10 felt very comfortable managing symptoms 15. The 22.9 hours a week one unpaid caregiver gave across a whole last year, against 16.1 for other caregivers, is as its authors reported 16. The three panels measure different people and are drawn side by side, not subtracted.
Who carries it cited
Among an estimated 2.1 million unpaid end-of-life caregivers in 2011: 38.2% daughters, 22.3% sons, 14.4% spouses, 60.7% women, mean age 56, 44.5% working for pay 14. 60% of caregivers aged 50 to 64 care for a parent or parent-in-law 18. 55% of 6,549 caregivers of adults do medical or nursing tasks, a broad measure that includes giving pills, and 22% of them were trained 19. In 2017, 54.6% of last-month caregivers managed pain, and 32.3% of those who dealt with clinicians were never asked whether they needed help 20. The 23% and 26% 21; flu shots, adjusted odds ratio 0.98 22. Insomnia: 28 of 57 caregivers of hospice cancer patients, 12 of 25 adult children 17.
Late cited
About 71% said they had no knowledge of palliative care, a weighted 2018 estimate 23. In the Richmond-Petersburg area of Virginia, 2,958 of 12,030 people who died of cancer from 2012 to 2015 (24.6%) used specialty palliative care, 50.5% of them first in the last 30 days 25. Stage IV lung or colorectal cancer, 2003 to 2005: oncologists documented a discussion with 27% of their patients; among decedents with a documented discussion, the first came a median of 33 days before death, and 55% of first discussions were inpatient 26. 52.9% of 2.52 million Medicare decedents used hospice in 2024 27. Lifetime hospice stays among 2024 decedents: a quarter lasted 5 days or fewer, the median 19 days; more than a quarter enrolled only in the last week of life 28. 2,164 rated hospices out of 6,706 billing Medicare is about 32%, our division across two sources 2930. No study measures whether families feel they chose a hospice 127.
71, 45.6 and 58.3 of 100 cited
71% preferred to die at home (KFF, 2017) 31. 290,104 of 636,120 US cancer deaths in 2024 (45.6%) at home, by CDC WONDER query; the query counts every tumor as its cause (ICD-10 C00 to D48), so a small number of benign ones are in it 32. 58.3% of 105,364 community-dwelling older Medicare decedents with metastatic breast, colorectal, lung, pancreatic or prostate cancer, 2013 to 2017, had at least one aggressive-care marker 33. The three are different populations, drawn side by side. Died where they wanted: 72.8% (287 of 394 families who answered) with more than 3 days of hospice, 40.0% (152 of 380) with 3 or fewer or none, an observational comparison in advanced lung and colorectal cancer 124. Prolonged grief: 21.6% (8 of 37) after a hospital death, 5.2% (4 of 77) after a home-hospice death 34.
26, 46, 7.4 and 20.3 of 100 cited
Adjusted pain prevalence among 4,703 decedents: 26% two years before death, 46% in the last month 37. Fiscal 2014: 20.3% of routine-home-care hospice patients who died on a Sunday had no professional-staff visit in their last two days, against 7.4% on a Tuesday 38. The around-the-clock rule, crisis nursing's eight-hour minimum and the 2% figure are 4097. The emergency kits are as hospices reported them 39. How long a family waits for a nurse at night is unmeasured in the US; the nurse's arrival in Dana's story is invented. Ruth's choice of Dr. Reyes as her attending doctor under hospice follows the election rule 41.
The forest plot measured
Carried from our earlier essays: 17 results from 15 studies, 13 of them coded by us as going to a named clinician or nurse who could change treatment. The founding cancer trial's 0.83 was not its preregistered result; the repeat trial's 0.99 was 424345128. Palliative care has no row: Temel's trial abstract reports depressive symptoms of 16% against 38% with P values and no ratio 54, and the review of 43 trials reports a survival hazard ratio of 0.90, 95% interval 0.69 to 1.17, as its authors reported 55. ENABLE III: 122 caregivers, mean age 60, 78.7% women; quality of life did not differ 59. The coding is ours and unchecked by anyone else; the one trial here that compared alerts to the patient with alerts to the clinician found no difference in quality of life 56.
36.7, 59 and 13, 86 and 30 cited
36.7% of 795,909 people in 150 US studies had an advance directive 61. 59% of 104 high-risk older emergency patients reported some planning; 13% had any in the record 62. Melbourne trial, 309 inpatients aged 80 or older: wishes known and followed for 25 of 29 who died with facilitated planning, 8 of 27 without 6364. Surrogates were right 68% of the time across 16 studies of hypothetical scenarios 60. Inpatient hospice care for pain that cannot be controlled at home is part of the benefit 93.
Where the record sits cited
The carried attempts and portal figures are 65697071747677. Washington's registry closed on July 1, 2011 with nearly 2,500 participants 66. Lantern's notice gives no year; 2024 comes from archived pages 67. Cake's accounts and shared links ended on June 15, 2025, after a funeral company bought it 68. The renamed U.S. Advance Care Plan Registry publishes no counts 72.
The handoff cited
Kripalani and colleagues' review: pending tests missing from 65%, medicines from a median 21%, follow-up from a median 14% 78. 16% to 17% of hospitals send electronic summary-of-care records to most or all long-term and post-acute providers; 8% receive them from most or all (2023); the brief does not name hospice 7980. 1,651 of 16,005 older patients (10.3%) had a registered care partner; 48 of 91 portal-using care partners (52.7%) mainly used the patient's credentials 81. 504 discrepancies between the admission nurse's and a pharmacist's medication histories in a two-hospice pilot, mean 8.7 per patient 84. The privacy rules are 45 CFR 164.502(g) and 164.510(b) 82; CARE Act laws, 45 states and territories as of April 2024 83.
Readers and appeals cited
Carried unchanged: 22,889 note readers in 2017, 4,830 (21.1%) perceiving a mistake, never checked against the chart 8586. 4.1 million Medicare Advantage denials in 2024, 11.5% appealed, 80.7% of appeals overturned; 115 and 93 per 1,000 are our arithmetic 878890899192. Ruth's bed denial is invented to tie her story to these data.
What Medicare already pays for cited
Hospice benefit contents, including short-term inpatient care 93; 16% of hospice patients had at least one day of general inpatient care in 2024 40. For Medicare Advantage members, traditional Medicare pays the hospice 94. In 2024, 4% of hospice patients used respite and 2% crisis nursing 95964097. Billed planning talks: 21.9% of traditional-Medicare decedents aged 66 and older by 2019; 14.1% of first talks at the wellness visit 99. Navigation: 7,934 services in 2024 100. Caregiver training: 4,853 office and 244 facility beneficiaries under code 97550, which may overlap, so about 5,100 is a ceiling 101. Paid family leave offered by the employer: 50% of working caregivers in 2025, 60% salaried, 35% hourly 102. Bereavement: about 30% of 161 caregivers at one Connecticut hospice, enrolled 1999 to 2001, used services 103. The rule requires bereavement services for up to one year after the death and pays nothing extra for them 129; many hospices say 13 months, which carries the family past the first anniversary of the death, though the 13 is not in the rule 93.
Prices a week computed
Respite: 5% × $532.48 = $26.62 a night, the FY2026 national rate before wage adjustment; five nights about $133 98. Medicare pays the hospice a daily rate for the care it provides 98. The aide: CareScout's 2025 median of $35 an hour for non-medical home care; 12 × $35 = $420; 40 × $35 = $1,400; 164.4 × $35 = $5,754. Overnight pricing is not reported separately 106. $7,242 ÷ 52 = $139, from 2021 caregiver expense diaries 109. Hospice families paid $670 less out of pocket in the last month 104. Aide use on top of hospice is unmeasured 108. Sleep: 29 of 40 home-hospice caregivers rated theirs fair or poor 110.
For clinicians cited
The documented conversation 26. Survival overestimated by a factor of 5.3 across 468 predictions by 343 doctors in five Chicago outpatient hospice programs 125. After-hours calls: 1,596 over six months at one agency, 10.3 a night, 37.7% nonclinical, mostly supplies and refills 126. Billed planning talks since 2016 99.
Dana, Ruth and Julie cited
Dana, Ruth, Julie and Dr. Reyes are composites. Ruth's illness, her words, the stent, the hospital stays, the bed, the medicines, the kit doses, the times and dates on the cards and Dana's quoted line are invented to show how the plan would work. No real family has used any part of the product described here: Gale runs on synthetic data until it can legally hold real health records.
What exists today measured
From a read of our code on September 22, 2026. Everything the plan section describes as working is shipped, including, since a founder ruling of September 7, 2026, the send to the named person after a second Not now 114115117112119118; everything under What we are still building is not 120111123113121122. The cards in the story are illustrations: the 7:10 card depends on logging at home and on Dana answering her mother's cards for her, the 11:41 card on those, her wishes in her words, the named person's screen and the hospice's on-call number, and the 7:05 card on the named person's screen: today she gets only her mother's sentence, by text or email. Three things we will fix before any real family uses it: the printed agreement still says "the send is still your tap," which no longer matches the app after a second Not now 130; and no clinician screen shows a Not now, but our database rules would let a paired clinician read a Not now record whose address she already had 116; and a private-pay visit booked as hospice and palliative care, including the visit where she writes her agreement, is still priced by default as an advance-care-planning visit, the code we took off the agreement's own menu 119.
How this was made measured
AI agents working for us, Jodi and Bill, did the research, checked the headline findings against their sources, and drafted this essay; we edited it and we stand behind it. We run Gale, and we have a commercial interest in you believing it. Findings our record marks as reported are given as their authors reported them. The best national end-of-life caregiving data come from 2011 and 2017, and several figures from one hospice or health system. What we don't know yet: whether this changes where people die, or how their daughters fare afterward.
References
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NCHS, National Ambulatory Medical Care Survey 2019 National Summary Tables (Tables 1, 3); NCHS Data Brief 408 for 2018. In 2019 — still the most recent year NCHS measured office-based physician practice, since every NAMCS release from 2021 onward covers only the health center component — Americans made an estimated…https://www.cdc.gov/nchs/data/ahcd/namcs_summary/2019-namcs-web-tables-508.pdf[E-099 · national probability survey of office-based physicians (398 ]
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NCHS, NAMCS 2019 National Summary Tables (Tables 26–27). Physician-reported time with the physician at office visits averaged 23.5 minutes (median 19.4) in 2019, with 39.2% of visits at 15 minutes or less; the field was missing for 32% of visits and…https://www.cdc.gov/nchs/data/ahcd/namcs_summary/2019-namcs-web-tables-508.pdf[E-100 · national survey, physician/record report with imputation]
Ray KN, Chari AV, Engberg J, Bertolet M, Mehrotra A, American Journal of Managed Care 21(8):567-74, 2015. Each ambulatory visit costs the patient 121 minutes on average (37 minutes travel, 84 in clinic), so physician face time is on the order of one-fifth of clinic time and about 15% of the total time…https://eutils.ncbi.nlm.nih.gov/entrez/eutils/efetch.fcgi?db=pubmed&id=26295356&rettype=ab…[E-103 · secondary analysis of American Time Use Survey 2003–2010]
KFF analysis of AHA Annual Survey (Key Facts About Hospitals; State Health Facts); MedPAC Data Book July 2024 Charts 6-12 and 6-15; Tipping MD et al., J Hosp Med 2010. KFF's compilation of AHA Annual Survey data shows US community hospitals delivered 562 inpatient days per 1,000 population as of the most recent year shown (2024), down from 681.9 in 2000 — not…https://www.kff.org/other-health/state-indicator/inpatient-days-by-ownership/[E-105 · administrative data (AHA Annual Survey; Medicare MedPAR clai]
NCHS, National Hospital Ambulatory Medical Care Survey 2021 Emergency Department Summary Tables (Tables 1, 3, 23); NCHS Data Brief 478. There were 42.7 ED visits per 100 persons in 2021 (49.6 for 65+, 65.5 for 75+); by expected payment source, Medicaid/CHIP accounted for 37.3% of ED visits and private insurance for 32.3% (the…https://www.cdc.gov/nchs/data/nhamcs/web_tables/2021-nhamcs-ed-web-tables-508.pdf[E-106 · national probability survey of ED visits (16,207 sampled vis]
Buttorff C, Ruder T, Bauman M, Multiple Chronic Conditions in the United States, RAND TL-221, 2017 (MEPS 2014). The most recent national chartbook to break health-care use down by condition count — RAND's Multiple Chronic Conditions in the United States, drawn from the 2014 Medical Expenditure Panel Survey…https://www.rand.org/content/dam/rand/pubs/tools/TL200/TL221/RAND_TL221.pdf[E-104 · chartbook of MEPS 2014 household survey (values read from ch]
Jencks SF, Williams MV, Coleman EA; NEJM 2009;360:1418 (2003-04 claims). In 2003–04 Medicare fee-for-service claims, 19.6% of 11.9 million discharges were followed by a rehospitalisation within 30 days, and — on the figure NEJM corrected in 2011 — 50.2% of the medical…https://www.nejm.org/doi/full/10.1056/NEJMsa0803563[E-127 · administrative data]
Medicare Payment Advisory Commission (MedPAC). March 2026 Report to the Congress, Chapter 10: Hospice services, Table 10-6.. On routine home hospice, the kind almost everyone gets, a nurse is in the house for about an hour and a half a week. Every other hour belongs to the family.https://www.medpac.gov/wp-content/uploads/2026/03/Mar26_Ch10_MedPAC_Report_To_Congress_SEC…[H-112 · MedPAC analysis of 100% Medicare hospice claims, calendar ye]
Ornstein KA et al., Health Affairs 2017;36(7):1184-1192, Exhibits 2–4. In the last year of life, older adults receive almost twice the hours of help, about 61 a week vs 35. Only 9% receive any caregiving funded by government, state or private insurance, and families…https://pmc.ncbi.nlm.nih.gov/articles/PMC5612447/[H-004 · NHATS/NSOC 2011, nationally representative and weighted.]
Ornstein KA, Kelley AS, Bollens-Lund E, Wolff JL. A National Profile of End-of-Life Caregiving in the United States. Health Affairs 2017;36(7):1184-1192. The unpaid caregivers of older adults in their last year of life are mostly middle-aged women, and daughters are the largest group, far ahead of sons and spouses. Nearly half also work for pay.https://pmc.ncbi.nlm.nih.gov/articles/PMC5612447/[H-003 · Prospective, nationally representative linked NHATS (Medicar]
Phongtankuel V, Teresi JA, Eimicke JP, et al. Identifying the prevalence and correlates of caregiver-reported symptoms in home hospice patients at the end of life. Journal of Palliative Medicine, 2020;23(5):635-640.. In the last week of home hospice, family caregivers rated pain severe for nearly half of patients and breathlessness severe for four in ten. The caregivers (mean age 59, mostly daughters and sons,…https://pmc.ncbi.nlm.nih.gov/articles/PMC7232637/[H-111 · Cross-sectional study using caregiver proxy reports (Edmonto]
Ornstein KA, Kelley AS, Bollens-Lund E, Wolff JL. A National Profile of End-of-Life Caregiving in the United States. Health Aff 2017;36(7):1184-1192. PMID 28679804, PMC5612447. Caregiving in the last year of life is heavier than other caregiving and mostly unpaid, and daughters do the largest share.https://pmc.ncbi.nlm.nih.gov/articles/PMC5612447/[H-044 · Nationally representative prospective data: National Health ]
Starr LT, Washington K, McPhillips MV, Pitzer K, Demiris G, Oliver DP. American Journal of Hospice and Palliative Medicine 2023;40(5):517-528. About half of US family caregivers of hospice cancer patients have insomnia symptoms, and the rate is the same among adult children as in the whole group.https://pubmed.ncbi.nlm.nih.gov/35620797/[H-203 · Descriptive sub-study of baseline interviews in a Midwestern]
AARP and National Alliance for Caregiving, Caregiving in the US 2025, Table 4. In midlife, caregiving mostly means caring for a parent: 60% of caregivers aged 50 to 64 care for a parent or parent-in-law, more than any other age group.https://cdn.aarp.net/content/dam/aarp/ppi/topics/ltss/family-caregiving/caregiving-in-us-2…[H-002 · National survey of caregivers of adults, cross-tabulated by ]
AARP and National Alliance for Caregiving, Caregiving in the US 2025. More than half of family caregivers (55%) help with medical or nursing tasks, from giving medicines to wound care, but only 22% received training for them. Women do more of these tasks (58% vs…https://cdn.aarp.net/content/dam/aarp/ppi/topics/ltss/family-caregiving/caregiving-in-us-2…[H-006 · National survey of caregivers of adults.]
Wolff JL, Freedman VA, Ornstein KA, Mulcahy JF, Kasper JD. Evaluation of Hospice Enrollment and Family and Unpaid Caregivers' Experiences With Health Care Workers in the Care of Older Adults During the Last Month of Life. JAMA Network Open 2020;3(4):e203599. In the last month of life, family caregivers manage pain and make medical decisions. One in three of those who deal with clinicians is never asked whether they need help managing treatments, and…https://pmc.ncbi.nlm.nih.gov/articles/PMC7191321/[H-005 · National survey study: 2017 NHATS linked to NSOC III, with t]
AARP and National Alliance for Caregiving. Caregiving in the US 2025. AARP Public Policy Institute, July 2025. doi:10.26419/ppi.00373.001. The average US family caregiver of an adult is 51, and 61% are women. About a quarter (23%) say caregiving makes it hard to look after their own health, and the share is 26% among women. One in…https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025/[H-145 · Nationally representative US online survey of family caregiv]
Mercado NR, Knapp K, Bouldin ED, Drugge ED. Flu vaccine uptake in caregivers and noncaregivers: implications for policy and practice. Preventing Chronic Disease (CDC), 2023;20:220125. A counterweight: in CDC survey data, caregivers were no less likely than non-caregivers to get a flu vaccine. The essay should say some caregivers set their own care aside, not that caregivers…https://www.cdc.gov/pcd/issues/2023/22_0125.htm[H-155 · Cross-sectional BRFSS analysis, multivariable logistic regre]
Huo J, Hong YR, Grewal R, et al. Journal of Pain and Symptom Management 2019;58(1):39-47. About seven in ten US adults (weighted estimate) said they had no knowledge of palliative care in 2018. Adults aged 50 to 64 were more likely than those under 50 to know about it, but…https://pubmed.ncbi.nlm.nih.gov/30922703/[H-051 · Cross-sectional analysis of the nationally representative NC]
Center to Advance Palliative Care, 2024 Serious Illness Scorecard, Key Findings. Most large hospitals now have a palliative care team, but only about a third of rural hospitals and half of for-profit hospitals do.https://scorecard.capc.org/findings/[H-050 · CAPC analysis of AHA Annual Survey and National Palliative C]
Cassel JB, McClish D, Buxton D, et al. PLOS ONE 2025;20:e0313732. In a population-based US study, only one in four people who died of cancer ever received specialty palliative care, and half of those first received it in the final 30 days of life.https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0313732[H-047 · Population-based decedent cohort linking the Virginia cancer]
Mack JW, Cronin A, Taback N, et al. Annals of Internal Medicine 2012;156(3):204-210. For patients with stage IV lung or colorectal cancer diagnosed 2003-2005, the first documented end-of-life discussion happened a median of 33 days before death, most often (55%) in the hospital.…https://pubmed.ncbi.nlm.nih.gov/22312140/[H-046 · Prospective cohort (CanCORS), 2,155 patients with stage IV l]
Medicare Payment Advisory Commission (MedPAC), Report to the Congress, March 2026, Chapter 10: Hospice services, Tables 10-2 and 10-3. More than half of Medicare decedents now use hospice, a record high.https://www.medpac.gov/wp-content/uploads/2026/03/Mar26_Ch10_MedPAC_Report_To_Congress_SEC…[H-031 · MedPAC analysis of CMS Common Medicare Environment and hospi]
Medicare Payment Advisory Commission (MedPAC), Report to the Congress: Medicare Payment Policy, March 2026, Chapter 10 (Hospice services), Table 10-3 and Figure 10-1. Medicare hospice arrives late: in 2024 the median hospice stay among decedents was 19 days, a quarter stayed 5 days or fewer, and more than a quarter enrolled only in the last week of life.https://www.medpac.gov/wp-content/uploads/2026/03/Mar26_Ch10_MedPAC_Report_To_Congress_SEC…[H-048 · MedPAC analysis of 100% Medicare hospice claims and the Comm]
CMS CAHPS Hospice Survey, Distribution of Family Caregiver Survey Rating Summary Stars, August and November 2026 refresh; MedPAC March 2026 Ch. 10, Table 10-1. A daughter comparing hospices on Medicare's Care Compare finds a family-caregiver star rating for only about a third of hospices. The rated third, mostly the larger hospices, cared for 88% of…https://hospicecahpssurvey.org/globalassets/hospice-cahps4/public-reporting/star-ratings/c…[H-049 · CMS national and state distribution of hospice star ratings ]
CMS Provider Data Catalog: 'Hospice care - Provider CAHPS Hospice Survey Data' (gxki-hrr8), 'Hospice - Zip Data' (95rg-2usp), 'Hospice - General Information' (yc9t-dgbk), August 2026 releases. Families can compare only some hospices on Medicare's Care Compare. Two in three hospices have no family-caregiver star rating. But the rated ones are larger and cover wide areas, so the typical…https://data.cms.gov/provider-data/dataset/gxki-hrr8[H-238 · Descriptive analysis of the full public CMS hospice files (c]
Hamel L, Wu B, Brodie M. Kaiser Family Foundation/The Economist, 'Views and Experiences with End-of-Life Medical Care in the U.S.', April 2017. Seven in ten Americans say they would prefer to die at home, but only four in ten expect to.https://files.kff.org/attachment/Report-Views-and-Experiences-with-End-of-Life-Medical-Car…[H-018 · Nationally representative telephone survey of US adults, Eng]
CDC/NCHS, CDC WONDER Underlying Cause of Death 2018-2024, Single Race (dataset D158, final 2024 vintage), grouped by year and place of death, filtered to ICD-10 chapter C00-D48; queried 2026-09-22 by this research lane. Home is now the most common place of death for Americans dying of cancer, but fewer than half die there, and the share has fallen since 2020 while hospital deaths rose.https://wonder.cdc.gov/ucd-icd10-expanded.html[H-017 · Census of US death certificates (all US resident deaths), ow]
Koroukian SM, Douglas SL, Vu L, et al. JAMA Network Open 2023;6(2):e230394. Among older Medicare patients dying with metastatic cancer who lived at home rather than in a nursing home, 58% received at least one marker of aggressive end-of-life care.https://pmc.ncbi.nlm.nih.gov/articles/PMC9947721/[H-019 · Retrospective cohort, SEER-Medicare-MDS linked data; fee-for]
Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. Journal of Clinical Oncology, 2010;28(29):4457-64. Bereaved caregivers of US cancer patients who died in a hospital were about four times as likely to meet criteria for prolonged grief disorder 6 months later as caregivers of patients who died at…https://pubmed.ncbi.nlm.nih.gov/20837950/[H-141 · Prospective, longitudinal, multisite US cohort (Coping with ]
Code of Federal Regulations, 42 CFR 482.43 (CMS hospital Conditions of Participation), eCFR current text. The federal hospital discharge-planning rule requires a written list of available Medicare agencies and a freedom-of-choice notice only when a patient is referred to a home health agency or…https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-G/part-482/subpart-C/section-4…[H-231 · Primary regulatory text, read in full from the eCFR versione]
CMS final rule, 'Revisions to Requirements for Discharge Planning for Hospitals, CAHs, and HHAs', Federal Register 84 FR 51836, 2019. When CMS finalized the discharge-planning rule in 2019, commenters asked it to add hospice to the patient-choice list. CMS declined, saying the statute requires a list only for the four post-acute…https://www.federalregister.gov/documents/2019/09/30/2019-20732/medicare-and-medicaid-prog…[H-232 · Primary regulatory preamble (comment and response), full tex]
Smith AK, Cenzer IS, Knight SJ, et al. The epidemiology of pain during the last 2 years of life. Annals of Internal Medicine, 2010;153(9):563-9.. Clinically significant pain holds steady at about a quarter of older Americans until four months before death, then rises to nearly half in the last month, and it is just as common in cancer as in…https://pmc.ncbi.nlm.nih.gov/articles/PMC3150170/[H-110 · Observational study, nationally representative US Health and]
Teno JM, Plotzke M, Christian T, Gozalo P. Examining variation in hospice visits by professional staff in the last 2 days of life. JAMA Internal Medicine, 2016;176(3):364-70.. In the last two days of life, one in eight Medicare hospice patients who died on routine home care got no visit from a nurse, doctor or social worker. Dying on a Sunday rather than a Tuesday was…https://pubmed.ncbi.nlm.nih.gov/26857275/[H-113 · Retrospective cohort, 100% Medicare hospice claims, all pati]
Bishop MF, Stephens L, Goodrich M, Byock I. Medication kits for managing symptomatic emergencies in the home: a survey of common hospice practice. Journal of Palliative Medicine, 2009;12(1):37-44. And Letizia M, Creech S, Norton E, et al. Barriers to caregiver administration of pain medication in hospice care. Journal of Pain and Symptom Management, 2004;27(2):114-24.. Hospices keep emergency medicine kits in the home for pain and breathlessness and believe the kits prevent ED trips, but the evidence is agency opinion. In an older survey, a quarter of caregivers…https://pubmed.ncbi.nlm.nih.gov/19284261/[H-125 · Telephone survey of all New Hampshire hospice agencies (self]
CMS, FY 2026 Hospice Wage Index and Payment Rate Update final rule, Federal Register 2025-14782 (Tables 1-2); 42 CFR 418.100 and 418.204 (eCFR, current); MedPAC March 2026, Chapter 10.. Medicare already requires round-the-clock nursing and drugs, and already pays for crisis nursing in the home, but almost no one gets it. The coverage exists; the use doesn't.https://www.federalregister.gov/documents/2025/08/05/2025-14782/medicare-program-fy-2026-h…[H-115 · Federal regulation and final payment rule; utilization from ]
Code of Federal Regulations, 42 CFR 418.24 and 418.30 (Medicare hospice election and change of hospice), eCFR current text. The Medicare hospice election form names one particular hospice, but only the choice of attending physician must be acknowledged as the patient's own. A family that picked badly, or never really…https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-B/part-418/subpart-B/section-4…[H-241 · Primary regulatory text, read in full from the eCFR versione]
Basch E et al., JAMA 2017;318:197-198. The same trial's long-term follow-up found a 5-month median survival advantage, but the survival analysis was decided post hoc and the trial enrolled 2007-2011 at one academic center.https://pmc.ncbi.nlm.nih.gov/articles/PMC5817466/[E-044 · RCT secondary analysis, post hoc endpoint]
Basch E et al., Nature Medicine 2025;31:1225-1232. PRO-TECT's pre-registered primary endpoint, overall survival, showed no difference between ePRO monitoring and usual care.https://pmc.ncbi.nlm.nih.gov/articles/PMC12184200/[E-047 · cluster RCT, 52 practices, primary endpoint]
Basch E et al., Nature Medicine 2025;31:1225-1232. In the same trial, these benefits appeared in secondary outcomes rather than the primary one: ePRO monitoring prolonged time to first emergency visit (HR 0.84, 95% CI 0.71–0.98; nominal P=0.03,…https://pubmed.ncbi.nlm.nih.gov/39920394/[E-048 · cluster RCT, secondary outcomes]
Basch E, Deal AM, Kris MG, et al. J Clin Oncol 2016;34:557-65; survival: Basch E, et al. JAMA 2017;318:197-198. When patients reported symptoms weekly from home and a nurse got an email alert for severe or worsening ones, quality of life held up better and fewer went to the ER. Median survival was five…https://pmc.ncbi.nlm.nih.gov/articles/PMC5817466/[H-095 · Single-center US RCT (Memorial Sloan Kettering), outpatients]
Koehler et al., TIM-HF, Circulation, 2011. A 24/7 physician-led telemedical centre with high adherence still produced no mortality benefit when applied to stable ambulatory heart-failure patients, showing that a response apparatus is…https://pubmed.ncbi.nlm.nih.gov/21444883/[E-143 · RCT]
Abraham et al., Lancet, 2011; Brugts et al., MONITOR-HF, Lancet, 2023. CHAMPION (Lancet 2011, n=550): an implanted pulmonary-artery pressure sensor whose readings clinicians acted on cut heart-failure hospitalisation at 6 months, HR 0.70 (95% CI 0.60-0.84), and HR…https://pubmed.ncbi.nlm.nih.gov/37220768/[E-144 · RCT]
Svendsen JH et al. (LOOP Study), The Lancet, 2021. Continuous rhythm monitoring with an implantable loop recorder in older adults with stroke risk factors tripled atrial-fibrillation diagnoses and anticoagulation but did not significantly reduce…https://pubmed.ncbi.nlm.nih.gov/34469766/[E-324 · RCT]
Stanley B et al., JAMA Psychiatry, 2018. In a non-randomised comparison across nine VA emergency departments (n = 1,640; 88% men), safety planning plus at least two structured follow-up calls was associated with roughly half the odds of…https://pmc.ncbi.nlm.nih.gov/articles/?term=jamapsychiatry.2018.1776[E-021 · cohort comparison (non-randomised, 9 VA EDs, propensity adju]
Nuij C et al., British Journal of Psychiatry, 2021; Doupnik SK et al., JAMA Psychiatry, 2020. Pooled across trials, safety-planning-type interventions reduce suicidal behaviour but have no detectable effect on suicidal ideation; single-encounter acute-care interventions also reduce…https://pubmed.ncbi.nlm.nih.gov/35048835/[E-022 · meta-analyses (6 studies / 3,536; 14 studies / 4,270)]
Comtois KA et al., JAMA Psychiatry, 2019. Eleven caring text messages over a year to at-risk Soldiers and Marines did not change the primary outcomes (current ideation, risk incidents) but were associated with fewer suicide attempts and…https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:30758491&format=json&…[E-024 · RCT (3 military installations; 70.2% followed to 12 months)]
Temel JS, Greer JA, Muzikansky A, et al. N Engl J Med 2010;363:733-42. Adding palliative care to cancer care from diagnosis improved quality of life and more than halved depression, and patients lived longer despite less aggressive end-of-life care.https://pubmed.ncbi.nlm.nih.gov/20818875/[H-094 · Single-site US RCT (Massachusetts General Hospital), newly d]
Kavalieratos D, Corbelli J, Zhang D, et al. JAMA 2016;316:2104-2114. Across 43 trials, palliative care improved quality of life and symptoms in the short term but showed no survival effect, and caregiver results were inconsistent.https://pubmed.ncbi.nlm.nih.gov/27893131/[H-103 · Systematic review and random-effects meta-analysis of RCTs o]
Billingy NE et al., JAMA Netw Open 2024;7(8):e2428975 (SYMPRO-Lung). In Dutch lung-cancer care, weekly ePRO monitoring improved quality of life for a year, and sending alerts to the patient alone (self-management advice) worked as well as sending them to the…https://pubmed.ncbi.nlm.nih.gov/39186274/[E-052 · stepped-wedge cluster RCT]
Gale's own code, read September 22, 2026. Measurement-based care replicated on speed, not magnitude: the 2025 multicentre assessor-blinded RCT found median time to remission 4 weeks vs 8 with no difference in remission or response rates…[E-368 · RCT; Cochrane meta-analysis]
Kendrick T et al., Cochrane Database of Systematic Reviews, 2016. Routine outcome monitoring with feedback (OQ-45/ORS) showed no evidence of symptom benefit across pooled trials, and no change in number of sessions.https://pmc.ncbi.nlm.nih.gov/articles/PMC6472430/[E-017 · Cochrane systematic review / meta-analysis of 17 RCTs]
Dionne-Odom JN, Azuero A, Lyons KD, et al. J Clin Oncol 2015;33:1446-52. Caregivers (average age 60, 79% women) who got three weekly phone coaching sessions right after enrolling, rather than three months later, were less depressed at three months. In the…https://pubmed.ncbi.nlm.nih.gov/25800762/[H-098 · US RCT (NCI cancer center, VA medical center, community outr]
Shalowitz DI, Garrett-Mayer E, Wendler D. Archives of Internal Medicine 2006;166(5):493-497. Family members and designated surrogates predict a patient's end-of-life treatment wishes correctly only about two times in three, and neither being named by the patient nor having discussed it…https://pubmed.ncbi.nlm.nih.gov/16534034/[H-065 · Systematic review of 16 studies using hypothetical scenarios]
Yadav KN, Gabler NB, Cooney E, et al. Health Affairs 2017;36(7):1244-1251. Only about one US adult in three has completed any advance directive, and people with chronic illness are barely more likely to have one than healthy adults.https://pubmed.ncbi.nlm.nih.gov/28679811/[H-062 · Systematic review of 150 US studies (2011-2016), 795,909 adu]
Platts-Mills TF, Richmond NL, LeFebvre EM, et al. Journal of Palliative Medicine 2017;20(1). Having a directive is not the same as its being findable: most older emergency patients who said they had done advance care planning had nothing the ED could locate in the electronic record.https://pubmed.ncbi.nlm.nih.gov/27622294/[H-063 · Cross-sectional study, one US academic ED with an integrated]
Detering KM, Hancock AD, Reade MC, Silvester W. BMJ 2010;340:c1345. In a randomized trial, facilitated advance care planning nearly tripled the share of patients whose end-of-life wishes were known and followed, and the relatives of those who died had markedly…https://pubmed.ncbi.nlm.nih.gov/20332506/[H-067 · Single-centre RCT, Melbourne, Australia; 309 competent medic]
Detering KM, Hancock AD, Reade MC, Silvester W. BMJ 2010;340:c1345. When a trained facilitator helped inpatients aged 80 or older in one Melbourne hospital put their wishes into words and name a surrogate, those wishes were far more often known and followed at…https://pubmed.ncbi.nlm.nih.gov/20332506/[H-100 · Single-center RCT, university hospital in Melbourne, Austral]
Google Official Blog (Aaron Brown), 'An update on Google Health and Google PowerMeter', 2011. Google retired Google Health on January 1, 2012, kept data downloadable for one more year, and said "any data that remains in Google Health after that point will be permanently deleted"; the…https://googleblog.blogspot.com/2011/06/update-on-google-health-and-google.html[E-183 · other (primary corporate statement)]
Associated Press via HeraldNet, 'Washington state ends living will registry', 1 July 2011; GAO-19-231 (2019). Washington closed its state living will registry to save money, and handed its registrants to a private company.https://www.heraldnet.com/2011/07/01/washington-state-ends-living-will-registry/[H-184 · News report on a state budget action, confirmed by the GAO a]
Wellthy, 'Retiring Lantern' notice; Wellthy blog, 'Wellthy acquires innovative end-of-life platform Lantern', May 2023. A second end-of-life planning startup was bought by an employer-benefits company and then switched off. Users had to ask support staff to retrieve their care plans.https://wellthy.com/lantern[H-183 · Primary company notices. The shutdown year is inferred from ]
Altogether (Foundation Partners Group), 'Frequently Asked Cake Questions', FAQ captured 14 Oct 2025; Foundation Partners Group press release, 4 Sep 2024. Cake, an end-of-life planning platform its buyer called 'the largest', closed every individual account after a funeral company bought it. Stored wishes, uploaded directives and the private links…https://web.archive.org/web/20251014234245/https://www.altogetherfuneral.com/faq/faq-cake.…[H-173 · Primary company documents (the successor company's own FAQ a]
Apple Newsroom press releases 2018-2022. Apple Health Records grew from 12 institutions at its January 2018 beta to more than 800 institutions across 12,000 locations by July 2022, because it pulls records through FHIR APIs that federal…https://www.apple.com/newsroom/2022/07/how-apple-is-empowering-people-with-their-health-in…[E-194 · other (company statements)]
ONC/HHS, Federal Register 85 FR 70064 (interim final rule), 2020. ONC's COVID-era interim final rule (85 FR 70064, Nov. 4, 2020) extended the Cures Act Final Rule's timetable rather than creating the regime: information blocking became applicable April 5, 2021;…https://www.federalregister.gov/documents/full_text/html/2020/11/04/2020-24376.html[E-113 · federal regulation (primary text)]
The Sequoia Project (TEFCA RCE), 2026 ASTP Annual Meeting deck and RCE press releases, 2026. The Sequoia Project — the TEFCA Recognized Coordinating Entity, paid by ASTP/ONC under a five-year contract awarded in August 2023 — reports that documents moved across TEFCA rails rose from…https://www.healthit.gov/wp-content/uploads/2025/09/2026AnnualMeeting_TEFCA-from-A-to-Z.pd…[E-114 · administrative data (self-reported by the RCE; counting meth]
U.S. Advance Care Plan Registry, 'About Us' and 'State Registries' pages, accessed 22 Sep 2026. Correction to the brief: the U.S. Living Will Registry did not close. It was renamed and still operates as a small private, fee-based registry that also runs state registries in the background.https://www.usacpr.com/information/about-us/[H-185 · Company's own web pages. No independent usage or outcome dat]
US Government Accountability Office, GAO-19-231, 'Advance Care Planning: Selected States' Efforts to Educate and Address Access Challenges', February 2019; Holmes P, ABA Commission on Law and Aging, Bifocal vol 37 no 6, 2016. State advance directive registries, the public answer to 'where are her wishes kept', stayed rare and barely used. Nobody has measured whether they work.https://www.gao.gov/assets/gao-19-231.pdf[H-174 · Federal audit: GAO reviewed every state's registry status as]
ASTP/ONC Data Brief 77 (HINTS 4-7), 2025. The share of US adults who were offered and accessed their online medical record rose from 38% in 2020 to 57% in 2022 and 65% in 2024, with app-based access rising from 38% to 57%; the largest…https://www.healthit.gov/data/data-briefs/individuals-access-and-use-patient-portals-and-s…[E-116 · repeated cross-sectional national survey (HINTS); HINTS 7 re]
ASTP/ONC Data Brief No. 77, 'Individuals' Access and Use of Patient Portals and Smartphone Health Apps, 2024', July 2025. Most Americans with online records have more than one portal. Almost nobody combines them into one place, so the job of combining them falls to a person.https://healthit.gov/wp-content/uploads/2025/07/2024-HINTS-Patient-Access-DB77_508.pdf[H-080 · Nationally representative US household survey (HINTS 7, fiel]
ASTP Data Brief 77 (July 2025) Appendix Table 1; HINTS 6 and HINTS 7 instruments. The reported rise in using an app to combine portals, from 2% (2022) to 7% (2024) of adults, crosses a change in who was asked; among people with more than one portal the change was 5% to 7%, and…https://healthit.gov/wp-content/uploads/2025/07/2024-HINTS-Patient-Access-DB77_508.pdf[E-600 · cross-sectional survey (HINTS 7, n=7,278, response rate 27.3]
Kripalani S, LeFevre F, Phillips CO, Williams MV, Basaviah P, Baker DW. JAMA 2007;297(8):831-41. When a patient leaves the hospital, the discharge summary is usually not there when the next clinician first sees her. When it does arrive, it often lacks the things a family needs to act on.https://pubmed.ncbi.nlm.nih.gov/17327525/[H-078 · Systematic review of 55 observational studies and 18 control]
ONC Data Brief No. 71, 'Interoperable Exchange of Patient Health Information Among U.S. Hospitals: 2023', May 2024 (AHA Annual Survey IT Supplement). Interoperability works worst exactly where the patient was going: from the hospital to post-acute and long-term care.https://healthit.gov/data/data-briefs/interoperable-exchange-patient-health-information-am…[H-083 · National survey of US non-federal acute care hospitals (AHA ]
ONC Data Brief No. 71, Interoperable Exchange of Patient Health Information Among U.S. Hospitals: 2023 (May 2024), from the 2023 AHA Annual Survey IT Supplement. Nationally, hospitals rarely receive records electronically from the post-acute providers where dying patients often are, and fewer than half say clinicians routinely use outside information at…https://healthit.gov/data/data-briefs/interoperable-exchange-patient-health-information-am…[H-221 · National survey of non-federal acute care hospitals (AHA IT ]
Gleason KT, DesRoches CM, Wu MMJ, ... Roth DL, Wolff JL; Shared Access Project Team. JAMA Network Open 2025;8(2):e2461803. The formal way to give a daughter her own login to her mother's portal exists, and only about 1 in 10 older patients had registered one. Of care partners surveyed who used the portal, about half…https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2830580[H-079 · Quality improvement study, 3 US health systems (geriatric on]
45 CFR 164.502(g) and 164.510(b), Electronic Code of Federal Regulations. Federal privacy law already gives a family member a seat. A health care agent must be treated as the patient for the relevant records. Clinicians may also share with family involved in care unless…https://www.ecfr.gov/current/title-45/subtitle-A/subchapter-C/part-164/subpart-E/section-1…[H-091 · Federal regulation (text read from the eCFR API, version dat]
AARP, 'State Level Overview: Caregiving Laws & Policies', April 2024; Zheng Y, Anton B, Rodakowski J, et al. JMIR Aging 2022;5(2):e32790. Laws in 45 states and territories require hospitals to record the family caregiver's name, tell her about discharge and show her the tasks. Where this was measured, most patients named someone and…https://pubmed.ncbi.nlm.nih.gov/35727611/[H-084 · AARP legislative tally; retrospective EHR cohort in one US h]
Kemp LO, Narula P, McPherson ML, Zuckerman I. Am J Hosp Palliat Care 2009;26(3):193-9. At hospice admission, the medication list is almost never right on the first try.https://pubmed.ncbi.nlm.nih.gov/19114603/[H-082 · Pilot study in 2 US hospices comparing nurse-obtained admiss]
Bell SK, Delbanco T, Elmore JG et al., JAMA Network Open, 2020. In a 2017 survey of 22,889 note readers at three US health systems (21.7% response rate), one in five reported perceiving a mistake in their notes, and 42% of those rated it somewhat or very…https://pmc.ncbi.nlm.nih.gov/articles/PMC7284300/[E-001 · cross-sectional survey (3 US health systems, 79 practices; 1]
Bärkås A et al., JMIR, 2023; Hanauer DA et al., JAMIA, 2014. Finding an error rarely leads to fixing it: most portal users who find one take no action, and the formal HIPAA amendment right is almost never used and is denied about half the time.https://pmc.ncbi.nlm.nih.gov/articles/PMC10656659/[E-004 · national cross-sectional portal survey; 7-year administrativ]
KFF analysis of CMS Part C reporting data, 2026-01-28 (series 2019-2024). In 2024 — the most recent year of CMS Part C reporting data — Medicare Advantage insurers made 52.8 million prior-authorization determinations and issued 4.1 million adverse determinations (7.7%),…https://www.kff.org/medicare/medicare-advantage-insurers-made-nearly-53-million-prior-auth…[E-085 · administrative data]
KFF analysis of CMS Part C reporting data, January 2026. Of the 4.1 million prior-authorization requests Medicare Advantage insurers denied in 2024 — 7.7% of 52.8 million determinations — just 11.5% were appealed to the insurer, and 80.7% of those…https://www.kff.org/medicare/issue-brief/nearly-50-million-prior-authorization-requests-we…[E-463 · administrative data]
HHS OIG, Some Medicare Advantage Organization Denials of Prior Authorization Requests Raise Concerns About Beneficiary Access to Medically Necessary Care, OEI-09-18-00260 (2022), Appendix B. The inspector general's report lists, in its Appendix B, 30 sampled prior-authorization denials that met Medicare coverage rules; 9 of them had been reversed by the time of OIG's data request and…https://oig.hhs.gov/documents/evaluation/3150/OEI-09-18-00260-Complete%20Report.pdf[E-621 · government report (audit of a stratified random sample)]
HHS Office of Inspector General, OEI-09-18-00260, 2022-04-27. A 2022 HHS Inspector General audit drew a stratified random sample of 250 prior-authorization denials from a single week — June 1-7, 2019 — at the 15 largest Medicare Advantage organizations,…https://oig.hhs.gov/documents/evaluation/3150/OEI-09-18-00260-Complete%20Report.pdf[E-087 · government audit with stratified random sample and physician]
KFF analyses of CMS transparency data (2023 data; 2024 data published 2026-03-24). HealthCare.gov marketplace insurers denied 19% of in-network claims in both 2023 (86 million of 436 million) and 2024 (85 million of 451 million) — but most reported denials are administrative or…https://www.kff.org/patient-consumer-protections/claims-denials-and-appeals-in-aca-marketp…[E-086 · administrative data]
KFF Survey of Consumer Experiences with Health Insurance, 2023. In KFF's 2023 Survey of Consumer Experiences with Health Insurance (3,605 insured adults, Feb 21 to Mar 14, 2023), 18% of insured adults said their insurer had denied a claim for care they thought…https://www.kff.org/affordable-care-act/consumer-survey-highlights-problems-with-denied-he…[E-595 · cross-sectional survey]
CMS, 'Medicare Hospice Benefits' booklet, Product No. 02154 (March 2026); 42 CFR 418.64(d) and 418.204. The Medicare hospice benefit already pays for the on-call nurse, the drugs, the equipment, respite and grief support. The family pays almost nothing.https://www.medicare.gov/publications/02154-medicare-hospice-benefits.pdf[H-038 · Federal benefit description and conditions of participation]
MedPAC March 2026 Ch. 10; Bellerose M, Ryan AM, Ankuda CK, Meyers DJ. Medicare Advantage Plan Spending and Payments Under the Hospice Carve-Out. JAMA Netw Open 2025;8(8):e2527724. If her mother is in a Medicare Advantage plan, the hospice is still paid by traditional Medicare (the 'carve-out'); the test of putting hospice inside MA ended in December 2024. MA and traditional…https://pubmed.ncbi.nlm.nih.gov/40828531/[H-135 · MedPAC decedent analysis 2024; cross-sectional study of MA e]
MedPAC, March 2026 Report, Chapter 10; AARP and National Alliance for Caregiving, Caregiving in the US 2025 (doi 10.26419/ppi.00373.001). Inpatient respite, the covered break for the family caregiver, is almost never used: in 2024, 4% of Medicare hospice patients received even one day of it. Across all family caregivers, 13% have…https://www.medpac.gov/wp-content/uploads/2026/03/Mar26_Ch10_MedPAC_Report_To_Congress_SEC…[H-128 · MedPAC Medicare claims analysis, all hospice patients 2024; ]
MedPAC, March 2026 Report to the Congress, Ch. 10 Hospice services; MedPAC Payment Basics: Hospice (revised Nov 2025); CMS Medicare Benefit Policy Manual Ch. 9 §40.2.2 (Rev. 13664, 2026). Medicare's hospice benefit already pays for inpatient respite care, a short stay for the patient so the family caregiver can rest, but only 4 in 100 hospice patients use even one respite day.https://www.medpac.gov/wp-content/uploads/2026/03/Mar26_Ch10_MedPAC_Report_To_Congress_SEC…[H-207 · Medicare fee-for-service hospice claims analysis (MedPAC) an]
eCFR 42 CFR 418.204 and 418.302 (current as of 2026-09-01); MedPAC March 2026 Ch. 10; FY2026 rates from the HFMA summary of the CMS FY2026 Hospice final rule. Medicare does pay for round-the-clock care at home, but only during a symptom crisis, only if at least 8 hours are provided that day, and mostly as nursing. Just 2% of hospice patients ever get a…https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-B/part-418[H-195 · Federal regulation text, plus Medicare claims analysis and C]
Medicare.gov, Hospice care coverage (accessed 2026-09-22); CMS FY2026 Hospice Wage Index and Payment Rate Update final rule, Federal Register 2025-14782, Aug 5 2025. Under the Medicare hospice benefit the family pays nothing for hospice care from a Medicare-approved hospice, except a copay of up to $5 per prescription for pain and symptom drugs and 5% of the…https://www.medicare.gov/coverage/hospice-care[H-126 · Official benefit description and payment rule; national unad]
Gotanda H, Walling AM, Zhang JJ, Xu H, Tsugawa Y. Timing and setting of billed advance care planning among Medicare decedents in 2017-2019. J Am Geriatr Soc 2023;71(10):3237-3243. Medicare has paid for advance care planning conversations since 2016, and they cost the patient nothing when held in the annual wellness visit. Yet only 21.9% of decedents had ever had one billed…https://pubmed.ncbi.nlm.nih.gov/37335260/[H-130 · Retrospective cohort, 20% random sample of Medicare FFS dece]
Billig JI, Joo JH, Cardin JR, et al. Early Adoption of Services for Health-Related Social Needs in Medicare. JAMA Health Forum 2026;7(1):e256261; CMS Medicare Physician & Other Practitioners by Geography and Service, data year 2024. In its first year (2024), Medicare's Principal Illness Navigation benefit, which pays for a trained navigator to help someone with a serious illness such as cancer get through the system, was…https://pmc.ncbi.nlm.nih.gov/articles/PMC12831150/[H-129 · Cross-sectional study of 100% of 2024 traditional Medicare p]
CMS Medicare Physician & Other Practitioners by Geography and Service, data year 2024; AARP and National Alliance for Caregiving, Caregiving in the US 2025. Since 2024 Medicare pays therapists to train a family caregiver (codes 97550-97552), but in 2024 the first-30-minutes code was billed for about 5,100 beneficiaries nationwide. Meanwhile 55% of…https://data.cms.gov/provider-summary-by-type-of-service/medicare-physician-other-practiti…[H-131 · CMS national claims public use file (traditional Medicare Pa]
AARP and National Alliance for Caregiving, Caregiving in the US 2025, published 24 July 2025 (Figure 28 and p. 34; Figure 25). Access to workplace caregiving help has grown, but it still reaches fewer than 2 in 5 working caregivers and splits by pay type.https://cdn.aarp.net/content/dam/aarp/ppi/topics/ltss/family-caregiving/caregiving-in-us-2…[H-178 · Nationally representative online survey (Ipsos KnowledgePane]
Cherlin EJ, Barry CL, Prigerson HG, Green DS, Johnson-Hurzeler R, Kasl SV, Bradley EH. Bereavement services for family caregivers: how often used, why, and why not. Journal of Palliative Medicine, 2007;10(1):148-58. Only about 30% of family caregivers of US hospice cancer patients used the hospice's bereavement services in the year after the death, and fewer than half of those with major depression used them.…https://pubmed.ncbi.nlm.nih.gov/17298263/[H-147 · Prospective US cohort with multivariable analysis and conten]
Aldridge MD, Moreno J, McKendrick K, Li L, Brody A, May P. Association Between Hospice Enrollment and Total Health Care Costs for Insurers and Families, 2002-2018. JAMA Health Forum 2022;3(2):e215104. Hospice does not shift costs onto families: families of hospice enrollees paid less out of pocket in the last month of life, and total spending was lower.https://pmc.ncbi.nlm.nih.gov/articles/PMC8903119/[H-015 · Retrospective cohort, Medicare Current Beneficiary Survey 20]
CMS, Medicare Hospice Benefits, CMS Product No. 02154, March 2026; CareScout Cost of Care Survey 2025. Hospice does not pay for room and board. If the patient cannot stay at home, the family pays for the facility bed, at a 2025 median of $315 a day for a semi-private nursing home room. Respite for…https://www.medicare.gov/publications/02154-medicare-hospice-benefits.pdf[H-196 · The official CMS beneficiary booklet, plus the provider pric]
CareScout (Genworth), Cost of Care Survey 2025, press release March 2, 2026. Hiring a non-medical caregiver costs $35 an hour at the 2025 national median (CareScout). At that hourly rate, one 12-hour night would be $420, a 40-hour week $1,400, and every hour hospice visits…https://investor.genworth.com/news-events/press-releases/detail/1054/carescout-releases-20…[H-190 · Phone and email survey of long-term care providers, July to ]
MedPAC, Report to the Congress, March 2026, Chapter 10: Hospice services, Table 10-6. On routine home care, hospice staff are in the home about 3.6 hours a week. That leaves about 164.4 of the week's 168 hours to the family.https://www.medpac.gov/wp-content/uploads/2026/03/Mar26_Ch10_MedPAC_Report_To_Congress_SEC…[H-189 · Analysis of 100% Medicare fee-for-service hospice claims, ro]
Gap statement drawing on Ornstein et al. Health Affairs 2017 and Kumar et al. JAGS 2020. No national dataset counts how many hospice families privately hire aides on top of hospice. The closest measures are NHATS/NSOC 2011 (20% of people in their last year had a paid caregiver, half…https://pmc.ncbi.nlm.nih.gov/articles/PMC5612447/[H-201 · Search of the literature. The absence is itself the finding:]
AARP Research, Caregiving Out-of-Pocket Costs Study 2021 (doi 10.26419/res.00473.001). Family caregivers spend an average of $7,242 a year of their own money on caregiving, about 26% of their income. 78% have regular out-of-pocket costs, and 47% have had a financial setback such as…https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2021/family-caregive…[H-132 · National survey plus expense diaries, 2,380 US family caregi]
Starr LT, Washington KT, McPhillips MV, Pitzer K, Demiris G, Oliver DP. Palliative Medicine 2022;36(10) (epub 23 Sep 2022). Nearly three in four family caregivers of US home-hospice patients rated their sleep fair or poor while caregiving, and only about one in six rated it good.https://pubmed.ncbi.nlm.nih.gov/36151698/[H-202 · Mixed-methods study (concurrent nested) of family caregivers]
Gale's own code, read September 22, 2026. PARTIAL: hospice and palliative care is a first-class care type in search and triage. It matches individual hospice and palliative medicine clinicians only. Hospice AGENCIES, where the Medicare…[H-160 · code read]
Gale's own code, read September 22, 2026. SHIPPED: the proactive policy caps unprompted check-ins, and a Not now is honored absolutely for a month.[H-167 · code read]
Gale's own code, read September 22, 2026. SHIPPED with a gap: 988 and 911 sit outside every agreement. The crisis card is a frozen, byte-identical object shown even on the paused-access screen, and it cannot be withheld, locked or paused.…[H-163 · code read]
Gale's own code, read September 22, 2026. SHIPPED: the clinician-written clause (the 'tell me if' relay) can name people who hear from the patient. Each named person receives only her own sentence, and since founder ruling D-261 a clause…[H-157 · code read]
Gale's own code, read September 22, 2026. SHIPPED: before anything goes to the clinician, she reads a short brief and switches each row on or off. Since 2026-09-21 the clinician sees nothing about a withheld row, not even a count. This is…[H-165 · code read]
Gale's own code, read September 22, 2026. PARTIAL CONFLICT (Not now is invisible to the clinician): no clinician screen or backend route serves the Not now trail, and a provider's list query on the events collection is denied. But each…[H-164 · code read]
Gale's own code, read September 22, 2026. SHIPPED: permissions are asked one source at a time, only for sources her confirmed agreement names, and each screen quotes her own sentence above the ask. Both Allow and decline are recorded, so…[H-166 · code read]
Gale's own code, read September 22, 2026. SHIPPED: 'her record is hers'. She can download her own complete record in one tap, and revoking a circle grant sweeps every token derived from it in the same act. Both are audit-logged on channel…[H-172 · code read]
Gale's own code, read September 22, 2026. SHIPPED with a tension: by founder ruling 2026-09-21, the visit where the agreement is written, and its follow-up, bill as ordinary office or telehealth visits. Advance-care-planning codes were…[H-171 · code read]
Gale's own code, read September 22, 2026. PARTIAL: a patient-owned 'care circle' grant to a caregiver or proxy exists in the backend (prepare, finalize, revoke, a check on every read, expiry), but no web or iOS screen calls it. The…[H-158 · code read]
Gale's own code, read September 22, 2026. ABSENT: a clause can only read the patient's own streams and words. No source carries what a caregiver observes at home, and there is no pain log, so 'pain woke her two nights running, as her…[H-168 · code read]
Gale's own code, read September 22, 2026. ABSENT: nowhere stores wishes or an advance directive in the patient's words. 'Advance directive' appears only as a keyword in the library consent regex, a navigation test question and homepage…[H-169 · code read]
Gale's own code, read September 22, 2026. ABSENT/PARTIAL: the claim rail has a Medicare filing indicator, but the payer catalog it bills against is commercial. None of its payer rows is traditional Medicare, although the founder's…[H-161 · code read]
Wright AA, Keating NL, Ayanian JZ, et al. JAMA 2016;315(3):284-292. Bereaved families rated end-of-life care better, and far more often said their relative died where they wanted to, when hospice lasted more than 3 days and the death was not in a hospital.https://pmc.ncbi.nlm.nih.gov/articles/PMC4919118/[H-020 · Interviews with bereaved family members of fee-for-service M]
Christakis NA, Lamont EB. BMJ 2000;320(7233):469-472. At the moment of hospice referral, doctors overestimated how long terminally ill patients would live, usually by a lot, and median survival after referral was just 24 days.https://pmc.ncbi.nlm.nih.gov/articles/PMC27288/[H-022 · Prospective cohort; 343 doctors gave survival estimates for ]
Mayahara M, Fogg L. Examination and analysis of after-hours calls in hospice. American Journal of Hospice and Palliative Medicine, 2020;37(5):324-328.. At one hospice agency, about ten after-hours calls came in each night. Common clinical reasons included breathlessness and pain. More than a third of calls were nonclinical and nonemergency,…https://pubmed.ncbi.nlm.nih.gov/31996017/[H-116 · Descriptive retrospective chart review, single US hospice ag]
Smith B, McDuff J, Naierman N, Kreling B, Tein N, Hunter D, Deviney M, Lynn J. American Journal of Hospice and Palliative Medicine 2015;32(4):393-400 (closest available evidence). GAP: I found no US survey or study that measures whether families felt they had a choice of hospice, were shown alternatives, or checked quality ratings before one was named. The public CAHPS…https://pubmed.ncbi.nlm.nih.gov/24595322/[H-245 · Documented evidence gap. The cited study is qualitative plus]
Basch E, Schrag D, Jansen J, et al. Nature Medicine 2025 (PRO-TECT, Alliance AFT-39). In 52 US community practices, weekly symptom surveys with care-team alerts did not extend survival, but they reduced emergency visits and delayed decline in function and quality of life. Patients…https://pubmed.ncbi.nlm.nih.gov/39920394/[H-096 · Cluster-randomized trial, 52 US community oncology practices]
Code of Federal Regulations, Title 42, Part 418 (Hospice Care), sections 418.64 and 418.204; Centers for Medicare & Medicaid Services, eCFR. Medicare requires every hospice to make bereavement services available to the family for up to one year after the patient dies, and names bereavement counseling as a required service that Medicare…https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-B/part-418/subpart-C/subject-g…[H-146 · Federal regulation (Medicare hospice conditions of participa]
Gale's own code, read September 22, 2026. CONFLICT (nothing leaves without consent; the user controls everything): the printed agreement the clinician reads with her still says 'The send is still your tap', and the clinician's dropdown…[H-162 · code read]