Better governance needed for palliative care, say researchers

Despite decades of government inquiries, significant differences in palliative care remain in Sweden. A new series of studies shows that the national governance is not working as intended, and that access to end-of-life palliative care depends on where the patient lives.

Researchers have studied developments since the introduction of "National knowledge support for good palliative care at the end of life" in 2013. Their findings show that despite national palliative care policy, there are significant differences in terms of what type of health care service people utilize end-of-life care. This applies to both children and adults and depends not only on diseases or age, but also to a high degree on where they live.

"Our studies highlight very complex challenges," says Cecilia Larsdotter, Professor of Health Care Sciences at Sophiahemmet University.

Most Swedish people wish to be cared for and die at home. The reality is different and only one in five people do so. Instead, hospitals and nursing homes are the dominant care places for the population to die in.

Unequal conditions across the country

"If the variations we have identified reflect different care preferences for people in different regions, then that's not a problem," says Professor of Nursing Joakim Öhlén from the University of Gothenburg's Center for Person-centered Care and Sahlgrenska University Hospital's Palliative Center. "But we have good reason to believe that it is more a matter of unequal conditions."

The researchers emphasize that person-centered palliative care, especially for older people, needs to be systematically implemented and integrated with both care for older people, primary care and hospital care.

Fortunately, the number of children and young people who die is only small. However, children have specific needs and challenges that requires competence in pediatric palliative care and access to resources.

"The organization of palliative care for children needs to be developed further," adds Stefan Nilsson, a professor of nursing at the University of Gothenburg and the Children's Cancer Center at Queen Silvia Children's Hospital.

Enhanced monitoring and guidance

Research shows that the existing national policies are often vague and that regions and municipalities may choose to opt out of them. As a result, the prioritization of palliative care—which, according to the Swedish Health and Medical Services Act, should be the highest priority—is not always implemented in practice.

The research team is now proposing a series of reforms. For example, they want palliative care to be recognized as a public health concern at the national level, in line with the WHO recommendations, and for follow-up and guidance for municipalities and regions to be reinforced.

"It's important—and clear—that palliative care should be prioritized," Stina Nyblom, associate professor at the University of Gothenburg, and consultant in palliative medicine at Sahlgrenska University Hospital's Palliative Center, concludes.

"But the problem is how to achieve this. It needs to be concretized, both in terms of early integrated and end-of-life palliative care."

Provided by University of Gothenburg