Palliative Care at Home: What It Covers, and the Out of Hours Plan

Palliative care is symptom and quality of life care for somebody with a serious illness. It can run alongside treatment aimed at the illness itself, it can begin years before anyone is dying, and it is not the same thing as the last few days. Confusing the two is the single most common reason families ask for it far later than they could have. The World Health Organization frames it as an approach that improves quality of life for patients and their families facing life-threatening illness, through the prevention and relief of suffering by early identification and assessment of pain and other problems, and describes it as applicable early in the course of illness and in conjunction with therapies intended to prolong life¹. Nothing in that sentence says stop.

The lateness is measurable. Nearly one in three people in England die with unmet need for palliative care, around 170,000 people a year, or nearly one every three minutes; UK-wide the figure is around 200,000 people a year, 31 percent of 651,482 deaths, and it is projected to rise 21 percent by 2050 to over 250,000 a year (Marie Curie, 2026 briefing, from the DUECare project with King’s College London, Hull York Medical School and the University of Cambridge)². That is not a shortage of compassion. It is mostly a shortage of referrals made early enough to matter.

I should say plainly what I can and cannot bring to this page. My mother is alive, and I have not sat with anybody through a death at home. What I have is four years of a carers’ group and a forum where this is the subject people write about at two in the morning, and one small piece of my own experience that turns out to be exactly relevant. When my mother came home twelve days after her coronary bypass surgery in April 2022, I was given a discharge letter and a paper bag of boxes, and it did not occur to me to ask who I was supposed to ring at night. I found out three weeks later, badly, at half past eleven. Everything practical on this page comes from the sources and from other carers’ words. The one thing I can tell you from the inside is that the out of hours question is the one nobody thinks to ask until it is the only question they have.

This article sits under caring for a parent at home. The last weeks covers what changes as somebody approaches death, and when caring ends covers the aftermath.

What is palliative care, and what is it not?

It is care aimed at how somebody feels rather than at how long they live, and the four words families use interchangeably mean four different things to the services holding them.

• Palliative care is the whole category: symptom control and quality of life support for a serious illness, which can begin at diagnosis and run alongside active treatment for years¹.
• End of life care is what palliative care becomes in the last months, weeks or days. It is a phase inside palliative care, not a synonym for it.
• Hospice care is a service model, and in most systems it is a way of delivering palliative care rather than a place.
• A hospice is a building, and in most countries it is where a small minority of people actually die. In England in 2024, hospice deaths were 5.5 percent of the total³.

What palliative care covers is broader than most families expect, and it is worth knowing the list before the appointment so you can ask for the parts you need. Pain. Breathlessness. Nausea and appetite. Fatigue. Constipation and bowel problems. Mouth care, which is one of the most neglected and most immediately effective things anybody does. Sleep. Anxiety and low mood. Practical, social and spiritual support. And, explicitly, support for the family, which means you: the same service that assesses somebody’s pain is usually the service that can arrange a night sitter, teach you how to reposition somebody, or say out loud that what you are doing is not sustainable.

That last part is the piece carers most often do not know they are entitled to ask about. Getting help in maps what exists more widely, and respite care explained covers breaks honestly, including what the trial evidence does and does not show.

When should it start, and what actually triggers a referral?

Earlier than it usually does, and the trigger is a symptom or a trajectory rather than a prognosis. You do not need a number of months to qualify for a conversation.

The referral prompts a carer can legitimately raise are ordinary and concrete: pain that is not controlled, breathlessness that limits what somebody can do, repeated hospital admissions, weight that keeps falling, a person who is in bed or in a chair for most of the day, a diagnosis of an illness that will not be cured, or the point at which the household is running on your vigilance alone. Any of those is a reason to say the words “can we have a palliative care referral” to the GP or the treating team.

Two things make this easier to ask for. The first is that you are not diagnosing anything or predicting anything; you are describing what the week now contains. The second is that the systems expect it to be raised. NICE and SCIE guideline NG27 requires the discharge coordinator to ensure that people with end of life care needs are assessed and supported “so they can die in their preferred place”⁴, which means the question belongs in a discharge conversation and not only in a crisis.

Timing is not a soft issue. Among Medicare hospice decedents in the United States, the average length of stay was 95.3 days but the median was 18 days (NHPCO, Facts and Figures, 2024 Edition, published by the National Alliance for Care at Home, released 10 September 2024, reflecting calendar year 2022, Medicare Hospice Benefit only)⁵. The median is the number that matters to a family: half of the people who entered hospice died within under three weeks of doing so. A service designed to work over months is very often being asked to work over days.

For how to get the request heard in a ten minute slot, being heard in appointments covers the one page summary and the dated change sentence that does more work than any adjective.

Who provides it at home, in each system?

A combination of a generalist and a specialist, everywhere, and the useful question is which named service holds which part.

• United Kingdom. Day to day care is the GP practice and the community or district nursing service, with a specialist community palliative care team or a hospice at home service for complex symptoms and for out of hours advice. Hospice UK states that the UK’s hospices care for about 310,000 people each year, given here as an organisational figure because no data year or underlying source is published with it⁶.
• Ireland. The GP and the HSE public health nurse for day to day care, with specialist palliative services alongside, and the out of hours GP service overnight.
• United States. Two different things with two different rules. Palliative care can be provided alongside treatment; the Medicare hospice benefit under Part A is elected and is a comfort care route. Hospice is overwhelmingly delivered where people live: Routine Home Care, meaning care in the patient’s place of residence, accounted for 98.78 percent of all Medicare hospice days, 128.32 million of about 129.9 million, and 93.78 percent of payments, with 1.72 million Medicare beneficiaries enrolled for one day or more in calendar year 2022⁵.
• Australia. My Aged Care is the single entry point to Australian Government funded aged care, giving information, an assessment of needs, referrals to providers and cost information⁷, with specialist palliative services delivered through state and territory health services, and advance care planning guidance published nationally⁸.
• Canada. Home and continuing care is delivered under provincial and territorial health systems, so the entry point has a different name in each province. The question that works everywhere is: who assesses eligibility for palliative home support here, and how do I make the referral.

Who does what: GP, district nurse, social worker is the wider cast list if you cannot work out whose job something is.

What does the hospice benefit cover, and what does it not?

In the United States the boundaries are written down, which makes it the clearest example of a rule every system has in some form: a service pays for care and does not pay for living costs.

The Medicare hospice benefit runs as two 90-day benefit periods followed by unlimited 60-day periods. The hospice doctor and the person’s regular doctor certify a terminal illness with a life expectancy of six months or less, and the person elects comfort care rather than curative treatment for that illness⁹. What it does not cover is the part families are shocked by: curative treatment for the terminal illness, curative prescription drugs, care from a hospice provider that the hospice team did not arrange, and room and board, whether at home, in a nursing home or in a hospice inpatient facility, except for short-term inpatient care or inpatient respite arranged by the hospice team⁹.

Sitting behind that is the sentence that causes more shock in American families than anything else on this site: Medicare does not pay for long-term care, and Medicare.gov states it directly, that long-term care, also called custodial care, is not covered and “you pay all costs”¹⁰. Hospice does not change that. The money picture across all five systems is in paying for care and what you can claim.

What is the out of hours plan, and why is it the most useful thing here?

It is the written answer to one question, “who do I ring at three in the morning, and what will they be able to do”, and it is the most useful thing on this page because it is the thing that decides whether a bad night ends at home or in an ambulance nobody wanted.

Ask for the answers before you need them, and get them written into the care plan and copied into your own file:

1. Is there a 24 hour advice line for this person specifically? Specialist palliative and hospice services usually run one. If there is, that number is the first call, not the last resort.
2. Can the out of hours service actually see the notes? In many areas an anticipatory or special patient note can be flagged to the out of hours provider and to the ambulance service. Ask whether one has been created, what is in it, and who can update it.
3. Who can physically come out at night, and how long will they take? An advice line that cannot send anybody is a different service from one that can.
4. What is written down about what this person wants? Preferences, decisions about treatment, and anything recorded about resuscitation. Ask where the paperwork lives, because a document nobody can find in the house is a document that does not exist.
5. What happens if nobody comes? Ask the question out loud. The answer tells you how much of the night falls to you, and that is planning information rather than pessimism.

Write all of it on one page and put it where somebody who is frightened can read it. Keeping a care file is where the rest of the record lives, and it earns its keep here more than anywhere else on this site.

What is the anticipatory medicines conversation?

It is a conversation about prescribing in advance so that symptoms can be treated quickly, and it is a mechanism you should understand rather than a task you should be performing.

The idea is straightforward: medicines are prescribed and left in the house before they are needed, so nobody is trying to obtain a prescription at midnight for pain, breathlessness, agitation, nausea or secretions. No page on this site names a medicine or gives a dose, a dose change, or an instruction to give or withhold anything. That belongs to the prescriber, who knows the whole list, and to whoever is authorised to administer.

What a carer should ask, and should ask early:

• Who is authorised to administer these, and is that a district nurse, a paramedic, a specialist team, or somebody else.
• Can that person be called out at night in this area, and what is the number.
• How long, realistically, will they take to arrive, at two in the morning, at a weekend.
• What happens if nobody comes, and who is the second call.
• Who reviews the whole list, because medicine lists grow quietly and this is a moment when several things may no longer be doing any good. NICE guideline NG5 recommends considering a structured medication review for people taking multiple medicines, for people with long-term conditions and for older people, taking into account the person’s and carers’ views and concerns, what each medicine is for, and its safety, effectiveness and appropriateness¹¹.

Managing someone else’s medication covers the round, refusals and how to request that review.

Will they be able to die at home?

Sometimes, and nobody can promise it. This is also the place where the most misused statistic in the subject turns up, so it is worth taking apart before you meet it somewhere else.

The claim you will read is that most people want to die at home. Handle it carefully. The only authoritative United Kingdom figure comes from the ONS National Survey of Bereaved People (VOICES): England, 2015, published 22 April 2016, and it is not a survey of the public at all. It is a proxy, retrospective, post-bereavement survey: bereaved relatives reporting what they believed the deceased had wanted. Of the 7,561 people who answered that particular question, 81 percent believed the deceased had wanted to die at home, 8 percent a hospice, 7 percent a care home and 3 percent hospital¹². Four things go with that number every time it is used. The base is small relative to the sample: 49,558 people were sampled, 21,320 responded, and only 7,561 answered this question, about 35 percent of respondents and roughly 15 percent of those sampled¹². The sampling frame excluded deaths recorded as “Elsewhere”, such as roads, workplaces and public places¹². Recall bias and post-hoc rationalisation both apply to a proxy report. And 2015 was the final edition; ONS has published no successor¹².

There is currently no authoritative general-population United Kingdom survey figure for preferred place of death. The frequently quoted “64 percent” and “70 percent plus” general-population preference figures cannot be traced to any primary source, and they are not used on this site.

What is actually known is a different kind of fact, from registration data rather than from a survey, and it describes what happened rather than what anybody wanted. In England in 2024, deaths occurred in hospital in 42.3 percent of cases, at home in 28.1 percent, in a care home in 21.5 percent, in a hospice in 5.5 percent and elsewhere in 2.6 percent, and the pattern varies sharply by condition: cancer deaths were the most likely to be at home, 34.8 percent, or in a hospice, 16.5 percent; 64.1 percent of dementia deaths were in a care home; and 62.0 percent of respiratory deaths were in hospital (Office for Health Improvement and Disparities, Patterns of care, England 2024, experimental statistics; note that this is a DHSC product and not an ONS one, and that the ONS place of death series is effectively discontinued, its last edition covering 2023 and released 9 January 2024)³.

The practical conclusion is not a target. It is that the honest thing to plan for is a good plan wherever it happens, rather than a promise about the address. Dementia care at home covers why the trajectory differs when dementia is the illness, and power of attorney and decisions covers the instruments that have to be set up while somebody still has capacity to make them, which is the window most families discover too late.

What does this ask of you, and what can you hand over?

More physical work than the earlier phases and a different kind of attention, and a fair amount of it can be handed to somebody else if you ask.

The care work concentrates: skin and position, mouth care, continence, moving somebody without hurting either of you, and eating and drinking becoming a smaller part of the day rather than a problem to be solved harder. Those are covered in preventing pressure sores, moving someone safely, continence and keeping dignity and eating, drinking and weight loss. What changes is the goal: a person whose priority is comfort is not managed like somebody recovering their mobility, and it is legitimate to say so out loud and ask for the plan to be rewritten around comfort.

What can be handed over is more than most carers try: night sitting, personal care visits, equipment, a hospital bed downstairs, and specialist advice by phone. Ask what the service can arrange rather than what you can cope with, because those are different questions and only one of them has a useful answer. Getting help in sets out what exists and how each thing is triggered.

This is a call today, even now

Palliative care is not a reason to stop ringing. It changes what a call is for, from reversing something to relieving it, and some things are still same day rather than tomorrow. Ring the person’s own clinician, or the palliative or hospice advice line if one exists, the same day if:

• Pain is not controlled, or is worse, or is new. This is the commonest reason a family waits when they should not.
• Breathlessness has worsened, or is frightening them.
• They are agitated or restless in a new way. Distress at this stage very often has a treatable cause behind it, including pain, a full bladder or constipation, and it is worth having those looked for rather than assumed.
• They are more confused than they were yesterday, or the confusion comes and goes through the day. Even now this is worth a call. NICE describes delirium as having an acute onset and fluctuating course, usually developing over 1 to 2 days, and says plainly that “it can be prevented and treated if dealt with urgently”¹³. It also tells clinicians to be “particularly vigilant for changes that may indicate hypoactive delirium, which are often missed, such as withdrawal, slow responses, reduced mobility and movement, worsened concentration and reduced appetite”¹³. Treating a reversible cause improves comfort, which is the entire point of the service you are ringing.
• There is any break in the skin over a pressure area, or redness that does not go pale when you press it and lift your finger.
• Anticipatory medicines have been prescribed and nobody can be found to administer them. That is a failure of the plan, and it is a call now rather than a thing to endure until morning.
• You cannot manage the night. That is a legitimate reason to ring, and saying it plainly is the fastest route to somebody coming.

Who to ring: in the United Kingdom, their GP surgery, or NHS 111 out of hours. In Ireland, their GP or the out of hours GP service. In the United States, their own doctor’s office, or the nurse line their plan runs, or an urgent care center. In Australia, their GP, or healthdirect on 1800 022 222. In Canada, their family doctor or the provincial health line, 811 in most provinces. Where a specialist palliative or hospice service is involved, its 24 hour line comes first, because it holds the notes and the plan.

Use the emergency number immediately for changed breathing, chest pain, one-sided weakness, changed speech, a first seizure, an unrousable person, or bleeding that will not stop: 999 or 112 in the United Kingdom and Ireland, 911 in the United States and Canada, 000 in Australia, 112 across the European Union.

If you are unsure which of those a situation is, ring. Nobody in any of these services will criticise a carer for ringing, and the risk being managed on this page is not yours. It belongs to somebody who cannot make the call themselves.