The researchers studied developments since the introduction of the ‘National knowledge base 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 the type of healthcare services people use for end-of-life care. This applies to both children and adults and depends not only on diseases or age, but also to a large extent on where they live.
“Our studies highlight very complex challenges,” says Cecilia Larsdotter, Professor of Health Sciences at Sophiahemmet University.
Most Swedes wish to be cared for and die at home. The reality is different and only one in five people do. In contrast, hospitals and nursing homes are the dominant places of care for the dying population.
Inequalities across the country
“If the variations we identified reflect different care preferences for people in different regions, then this is not a problem,” says Professor of Nursing Joakim öhlén from the Center for Person-Centered Care at the University of Gothenburg and the Palliative Care Center at Sahlgrenska University Hospital. “But we have good reason to believe it’s 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 into both geriatric care and 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 require competency in pediatric palliative care and access to resources.
“The organization of palliative care for children needs to be further developed,” adds Stefan Nilsson, professor of nursing at the University of Gothenburg and the Children’s Cancer Center at Queen Silvia Children’s Hospital.
Improved tracking and guidance
Research shows that existing national policy is often vague and that regions and municipalities can choose to opt out of it. 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 national public health concern, in line with WHO recommendations, and monitoring and guidance for municipalities and regions to be strengthened.
“It is important – and clear – to prioritize palliative care,” concludes Stina Nyblom, associate professor at the University of Gothenburg and consultant in palliative medicine at the Palliative Care Center at Sahlgrenska University Hospital. “But the problem is how to achieve that. It needs to be fleshed out, both in terms of early comprehensive palliative care and end-of-life palliative care.”
