Before a Parent Dies: How Hospices and Palliative Care Reach Children

When a parent is dying, the hospice or palliative-care team looking after them is often the one service already in the family's life before the death. The evidence shows that children are still easy to miss. In a UK survey, more than one in five hospices had no formal way of asking whether a patient had children^[1]. In Sweden, almost every young person bereaved of a parent to cancer said teenagers should be told when the death is near, but only three in five had been told^[2].

For a child whose mum or dad is seriously ill, the months before the death are often the hardest to see from outside. There are hospital visits, a parent who sleeps more and does less, and adults who talk quietly in the next room. This study looks at that time before a death: what palliative-care services offer patients' children, what children and young people say they needed, and which countries make it a legal duty to ask. The evidence comes mostly from the UK, the Nordic countries, Germany, Ireland and the United States. We found almost nothing from low- and middle-income countries, where most people who need palliative care live.

Many services do not routinely know whether a patient has children

In 2018, researchers invited all 197 adult hospices in Hospice UK's national directory to take part, and 130 (66%) responded. Of the 111 that answered the question, 78.4% said they formally asked and recorded whether patients had dependent children under 18. The other 21.6% had no formal or systematic way of doing so. Of the hospices that did ask, 21.8% offered staff no formal support or training for talking with patients about their children's needs^[1]. The authors cite an estimate that 5–10% of hospice patients have children under 18; that figure comes from an earlier source rather than their own survey^[1].

Research has been slow to notice these children too. A 2012 systematic review noted that palliative-care research "does not yet routinely consider patients' minor children"^[3]. A Danish interview study opens by stating that about 14% of cancer patients live with dependent children; that is the authors' summary of earlier work, not a new count^[4]. No country we found publishes a routine count of palliative-care patients who have children.

Parents who are dying while raising children carry particular strain. In the US Coping with Cancer cohort of 668 patients with advanced cancer, those with dependent children had 5.41 times the odds of meeting criteria for panic disorder, after adjustment, and were more likely to prefer aggressive treatment over palliative care (adjusted odds ratio 1.77). They were less likely to have a do-not-resuscitate order (adjusted odds ratio 0.44). Their spouses or partners who had dependent children also had higher odds of major depressive disorder (4.53) and generalised anxiety disorder (3.95)^[5]. In a German study of 54 terminally ill parents of 96 children, parents "felt limited by their illness in being a mother or father, as they wanted to be"^[6].

Staff often feel underprepared. In a study from Northern Ireland, based on 79 interviews with parents, bereaved parents, health and social care professionals and funeral directors, most professionals "were unaware of the challenges faced by parents at end of life", and psychosocial support "was often left outside the caring realm"^[7]. Specialist palliative-care nurses interviewed in Ireland in 2023–2024 described being at the bedside around the clock. They saw themselves as key to supporting families but reported a need for "more age-appropriate knowledge and information"^[8].

Hospices offer a wider range of support after a death than before it

Every responding UK hospice offered families some support. But the range of support was wider after a parent's death than before it: on average, hospices offered 6.36 types of support afterwards and 5.64 beforehand, a statistically significant difference^[1]. Group and peer sessions in particular were much more common after the death.

Who provides the support also shifts. Doctors were involved in support at 41.5% of hospices before a parent's death and 22.2% after it, while volunteers were involved at 46.3% before and 61.5% after. Psychologists or psychiatrists were involved in pre-bereavement support at only 17.9% of hospices^[1]. Before a parent's death, 2.5% of hospices offered no support for children; after it, 13.9% offered none^[1]. Nearly two-thirds of hospices (63.2%) said they evaluated their support, but none shared those findings with the researchers, so there is little evidence on how well any of it works^[1]. The survey is from one country in 2018, and we found no newer national survey. Support after the death is covered in our study of access to bereavement support.

Young people want to be told, and many are not

The largest study of what young people want comes from a Swedish nationwide survey. It reached 622 of the 851 young adults (73%) who, six to nine years earlier, had had a parent die of cancer when they were 13–16. Of the 610 who answered the question, 595 (98%) said teenagers should be told when a parent's death is imminent, meaning hours or days away, not weeks. Only 59% had been told themselves: 37% by their parents, 7% by parents and healthcare professionals together, and 8% by professionals alone. Up to a couple of hours before the death, 43% had not realised it was close^[2].

Frequent reasons were these. In 106 cases one parent, and in 25 cases both parents, had together with the teenager pretended the illness was not that serious. In 80 cases, neither parent had known the death was imminent^[2]. That second finding matters for services: parents cannot share what they do not know.

The same Swedish cohort shows why the months before a death matter afterwards. Fifty-seven per cent said they had not found a way to grieve that felt okay in the first six months, and those young people had 4.32 times the odds of reporting unresolved grief years later. One in four (24%) had hidden their grief to protect their surviving parent. Having talked with the dying parent about what was important was one of the factors linked with having had "an okay way to grieve"^[9]. Six to nine years on, 49% reported that their grief was unresolved^[10]. Those who had little or no trust in the care their parent received had 2.3 times the risk (unadjusted) of moderate to severe depression at the time of the survey, compared with those who trusted it^[11]. These are associations from a single survey, not proof that telling or trust caused the difference, and unresolved grief is not the same as a diagnosed condition. Our study of prolonged grief in children explains the difference.

Asked what advice they would give healthcare professionals, 481 of the young adults answered. Four themes came out: to be seen and acknowledged; to understand and prepare for the illness, its treatment and the coming death; to spend time with the ill parent; and to receive support suited to the individual^[12]. Reviews of research from other countries point the same way. A 2022 review of 22 studies found children wanted information that was "continuous and individually adapted", and wanted to be with the sick parent while also needing respite^[13]. A 2019 systematic review found that many parents feel they protect their children by not sharing the prognosis. It also found that the evidence came "primarily" from White, middle-class, two-parent families^[14].

Nordic law makes children's needs a duty; elsewhere, guidance is mostly silent

A handful of countries have put children of seriously ill patients into law. In Norway, the Health Personnel Act has placed duties towards patients' minor children on health personnel since 1 January 2010. In its current form it requires staff treating a patient with serious physical illness or injury, mental illness or substance dependence to "seek to clarify" whether the patient has minor children, and what information or follow-up those children need. Since 1 January 2018, a further section has covered children whose parent or sibling has died^[15]. In Sweden, the Health and Medical Services Act requires care providers to offer a child information, advice and support, based on the child's needs, when a parent or another adult the child lives with has a serious physical illness or injury, or dies unexpectedly^[16]. In Finland, the Health Care Act requires a child's need for care and support to be assessed when a parent receives health or social care and their ability to look after the child is considered weakened^[17].

A legal duty is not the same as support reaching every child, and we found no national figures on how often these duties are met. But the laws make asking about children part of routine care.

In the countries we checked, national rules elsewhere say less. In the United States, the Medicare conditions that hospices must meet require bereavement services for "the family and other individuals" for up to a year after the patient's death. The section setting out those services does not mention patients' children^[18]. In England, NICE's 2019 guideline on end-of-life care services for adults mentions children only as young carers, who are entitled to a needs assessment^[19]. Globally, the World Health Organization describes palliative care as supporting patients "and their families", including bereavement counselling. It estimates that 56.8 million people need palliative care each year, most of them in low- and middle-income countries, and that only about 14% receive it^[20]. For many families, then, there is no palliative-care team to ask about the children at all.

This is not a full international review. Other countries may have relevant regional laws or professional standards.

Family-focused support is promising, but has barely been tested

The most studied family model in palliative care is the Family Talk Intervention, tested in Swedish specialised palliative home care. In a pilot with 20 families and 34 children aged 6–19, those aged 8–12 found talking with their parents easier afterwards, but communication was unchanged for teenagers and between siblings^[21]. Of the 29 parents who took part, many would have liked it to start earlier in the illness^[22]. When 21 Swedish hospital social workers were trained to use it, they rated managerial support and resources lower than other aspects of implementation^[23].

The wider evidence is thin. A 2012 systematic review found only five structured interventions for families of palliative patients with minor children^[3]. A 2026 umbrella review of eight systematic reviews, covering 46 interventions for families facing a parent's cancer, found promising early results for children's understanding and family communication. But confidence was limited by "the generally low methodological quality" of the reviews^[24]. Training for staff is starting to be tested too. In a UK pilot of a training programme with 36 delegates, professionals' self-efficacy improved on 17 of 19 measures; a larger evaluation is planned^[25]. A US interview study of 18 young adults whose parent died in hospice or palliative care when they were 12–18 set out what they wanted hospice staff to know^[26]. For the evidence on support after a death, see what helps bereaved children.

What the evidence asks of us

• Ask every adult patient whether they have children, and record it. The UK survey's authors call for "enhanced systems to record when patients have dependent children"^[1]. Norway's law already requires staff to seek to clarify this^[15].
• Start support before the death, not only after it. UK hospices offered fewer types of support before a parent died than afterwards^[1]. Parents in the Swedish family-talk pilot wished it had started earlier^[22].
• Help parents know when death is near, so they can tell their children. Nearly all the Swedish young people wanted to be told; in 80 cases neither parent had known the death was imminent^[2]. The researchers conclude that this has "implications for future improvements in end-of-life care of patients with teenage children"^[2].
• Train and support staff. UK hospices named staff training and numbers, and funding, among their main challenges^[1]. Irish nurses asked for more age-appropriate knowledge^[8], and early training evaluations are encouraging^[25].
• Fund proper evaluation, and look beyond one kind of family. Evidence is dominated by qualitative and pilot studies^[14][24]. It comes largely from White, middle-class, two-parent families in a few high-income countries^[14].
• Count what happens. Governments with legal duties towards patients' children could publish how often those duties are met. No country we found does.

Language: this piece uses plain words such as “died” rather than euphemisms, because they are clearer.

Why we're publishing this

When a parent is dying of an illness, the family is usually already in contact with health services, often for months. That makes the time before a death one of the few points where support could reach almost every family. We have gathered the published evidence in one place so that hospices, charities and services can point to it when making the case for asking about children, starting support earlier and funding it properly. The case is theirs, and the children's.

How to read this data

Most of the evidence here comes from surveys and qualitative studies, not from registers or trials. The UK hospice figures are from one national survey in 2018 with a 66% response rate. They describe what hospices said they offered, not what families received, and bases vary because not every hospice answered every question. The Swedish figures come from a single population-based survey of young adults bereaved of a parent to cancer, recalling events six to nine years earlier; recall can be imperfect, and the findings may not apply to other causes of death or to younger children. The US cohort figures are adjusted odds ratios and describe parents, not children. The Family Talk Intervention results come from small pilot studies without a comparison group. Statute texts were read in the original Norwegian, Swedish and Finnish, and the translations are ours. We found no routine national statistics anywhere on how many palliative-care patients have children, or how many of those children receive support before the death. That gap is itself a finding. The wider library is at research on bereaved children.

Use this data

Free to cite with attribution to Understanding Bereavement. Charities, hospices, schools, services and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Important: This study summarises published research about groups of people for general information. It is not medical advice or bereavement support, and it cannot describe or predict anything about an individual child or family. If you are worried about a child or about yourself, please speak to a GP or another qualified professional.

Sources

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