Understanding of palliative care drives end-of-life preferences

People with a comprehensive understanding of palliative care are more likely to prefer end-of-life care at home or in a hospice. Among individuals with less understanding about palliative care, hospital care is preferred. These are some of the findings from a Swedish population-level study.

The study was led by researchers at the University of Gothenburg and Sophiahemmet University. Its aim was to investigate where Swedes wish to receive end-of-life care in the event of serious illness, and where they prefer to die, issues that are significant for palliative care planning.

The data is based on a random sample of 3,750 people aged 16–90 from the Swedish population register. The questions were administered via the national SOM survey at the University of Gothenburg. The response rate was 48 percent.

Of the respondents, 60 percent wanted to receive end-of-life care at home, and 54 percent preferred to die at home. However, there were differences among the five subgroups identified based on their level of understanding of palliative care and sociodemographic characteristics.

An active form of care that provides relief

A comprehensive understanding of palliative care, recognizing that it alleviates distressing symptoms and supports family members, was associated with a preference for care at home or in a hospice. Misconceptions about palliative care, such as the belief that it hastens death, were more frequently linked to a preference for hospital care or residential care facilities.

The notion that palliative care hastens death was held by 42 percent of those with the least understanding of palliative care. The corresponding proportion among all participants was 16 percent.

Palliative care is still associated with the very final stage – the dying process. Many people do not realize that it is an active and holistic form of care designated to identify and alleviate symptoms in various ways, while providing support to both patients and their family members. It is about optimising well-being trhough the illness trajectory."

Cecilia Larsdotter, Professor, Sophiahemmet University

"There is also still a strong reliance on hospital care, with a belief that hospitals are the safest option or offer the highest quality of care," she continues. "However, when it comes to palliative care, other forms of care, such as home-based care, can often provide better support and promote safety and wellbeing. The choice of care depends on the patient's specific needs and wishes."

Factors that create obstacles

If palliative care is associated solely with the dying process and hosptal care, it hinders the provision of palliative care earlier on in a patient's illness, emphasizes Joakim Öhlén, a professor at the University of Gothenburg and affiliated with the Palliative Care Centre at Sahlgrenska University Hospital.

"Research today shows that when palliative care is initiated and integrated earlier in the course of an illness, it has beneficial effects on the patient's well-being and symptom relief. There are also studies showing that those who receive palliative care earlier in the disease progression may live longer than those who do not. When patients or their family carers perceive palliative care as being exclusively about the dying process, this can conflict with the provision of palliative care earlier on," he points out.

The majority, 79 percent, agreed that the aim of palliative care is to alleviate suffering, and 57 percent agreed that it includes support for family members. Only 26 percent agreed that palliative care is provided across all healthcare services.

"We know there are significant regional disparities regarding access to the expertise and resources needed to meet people's palliative care needs. Addressing this is a major and important public health issue. Municipalities and regions bear a special responsibility in this regard as the authorities responsible for health and social care," concludes Joakim Öhlén.

The study is published in the journal Palliative Care and Social Practice. It is based on responses from the 2023 national SOM survey.