When demography and illness trumps policy: Why Norwegians continue to die in institutions

THIS MONTH’S EDITOR’S CHOICE FROM PALLIATIVE MEDICINE . . .

Jorid Kalseth, Department of Health Research, SINTEF Technology and Society, Trondheim, and Ole Magnus Theisen, Department of Sociology and Political Science, Norwegian University of Science and Technology, Trondheim, Norway, explain the background to their longer article selected as ‘Editor’s Choice’ in the December issue of Palliative Medicine.

Jorid Kalseth

Ole Magnus Theisen

Although hospitals are the most common place to die in developed countries, when asked, many patients wish to die at home.[i] Partly for this reason, there has been a growing concern about whether hospital is a good place of death. In later years, we have seen a shift in place of death from hospital deaths to home deaths in countries such as the US, Canada and the UK. This triggered our interest in whether we see the same shift in Norway where similar objectives have been stated – a country where the authorities assume comparatively strong responsibilities for public health.

Analysing all deaths for the period 1987-2011, our first observation was that the proportion of people dying at home actually decreased from 18.3 to 14.2 per cent. There was a trend out of hospital (from 46.2 to 34.1 per cent) paralleled by an increase in deaths in nursing homes (from 29.5 to 45.5 per cent). At the same time, people lived longer, causing the death rate to fall, particularly for men, with far fewer dying from diseases to the circulatory system. Knowing that old people, especially women, more often become long-term nursing home residents, we wondered how much of the shifts in where people die could be predicted by these basic changes. We parsed the trends of where people die into (i) the effect of age, gender and cause of death; and (ii) a residual that reflects other influencing factors. It turned out that changes in age, gender, and terminal disease explained almost all of the reduction in home deaths and almost two-thirds of the increase in nursing home deaths. We found important differences between decedents’ groups, however. When taking into account the change in age and gender of the deceased, no change was found for people dying of diseases in the circulatory system or nervous system. Conversely, we found that there had been a major, genuine trend towards nursing home as place of death for people dying of cancer. The overall trend towards increased nursing home deaths was driven by middle-aged and ‘young elderly’ decedents.

In short, demographic and epidemiological shifts play an important part in where Norwegians die. The intention to allow more people to die at home has not materialised, with nursing homes becoming an increasingly important place for terminal care for cancer patients. Norway has high employment rates, restricting the availability of informal care, and variable competence of public homecare services and general practitioners to provide around the clock high-quality terminal support. The policy in Norway has been to integrate palliative care in existing services and, as a result, hospices are almost non-existent.2 Nursing homes constitute significant community care services close to home. They have assumed an increasingly important role in providing short-term treatment and care in general, reflected in a strong policy focus on improving their capacity and competence for palliative care. Designated units or even single bedrooms for palliative care are established in some nursing homes. Most nursing homes, however, do not have designated palliative beds, but all provide basic palliation to dying patients. Palliation for cancer patients has been the driving force behind this development, and palliation for elderly dying patients has until recently received less policy attention. Still, studies show that end-of-life care in nursing homes is considered to be professional and decent by patients’ families.3

Reference

  1. Gomes N, Calanzani N, Gysels M, et al. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliative Care 2009; 8:4.
  2. Kaasa, S., et al. (2007). Palliative care in Norway: a national public health model. Journal of Pain and Symptom Management 33(5): 599-604.
  3. Kaarbø, E. (2011). End-of-life care in two Norwegian nursing homes: family perceptions. Journal of Clinical Nursing 20(7-8): 1125-1132.

Read the full article in Palliative Medicine . . .
This post relates to a longer article, ‘Trends in place of death: The role of demographic and epidemiological shifts in end-of-life care policy’, published in Palliative Medicine, Vol 31 (10): 964-974. Article first published February 13, 2017. DOI: 10.1177/0269216317691259.

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