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. The results are now available in the GPCC Reports in Swedish.
Researchers have in a Gothenburg–Stockholm–Lund collaboration 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 healthcare service people utilise 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.
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. For many people, the place of care at the end-of-life is important, and central to the realisation of person-centred pallative care.
“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 Centre for Person-centred Care (GPCC) and Sahlgrenska University Hospital’s Palliative Centre. “But we have good reason to believe that it is more a matter of unequal conditions.”
The researchers emphasise that person-centred palliative care, especially for older people, needs to be 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 paediatric palliative care and access to resources.
“The organisation of palliative care for children needs to be developed further,” adds Stefan Nilsson, a professor of nursing at the University of Gothenburg, and the GPCC and the Children’s Cancer Centre at Queen Silvia Children’s Hospital.
Research shows that the existing national policy are often vague and that regions and municipalities may choose to opt out of them. Some policy documents are in line with and suports the Person-centred integrated care path for palliative care, while other policy related to palliative care does not. As a result, the prioritisation of palliative care – which, according to the Swedish Health and Medical Services Act, should be the highest priority – is not always implemented in practice. This is an issue patient association are also advocating, such as the National network against cancer, chaired by Margareta Haag who also wrote the foreword to the report.
The research team is now proposing a series of reforms. For example, they want palliative care to be recognised as a public health concern at 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 prioritised,” Stina Nyblom concludes, associate professor at the University of Gothenburg, and consultant in palliative medicine at Sahlgrenska University Hospital’s Palliative Centre. “But the problem is how to achieve this. It needs to be concretised, both in terms of early integrated and end-of-life palliative care.”
To the report: Förutsättningar för jämlik personcentrerad palliativ vård (“Prerequisites for equal person-centred palliative care”), https://hdl.handle.net/2077/90107
Other reports in the GPCC:s ACTA publication series https://gupea.ub.gu.se/handle/2077/83906