Dr Vera Sarmento, Internal Medicine trainee in Hospital do Espirito Santo de Evora, EPE, Medicina 2, Portugal, explains the background to a longer article published in the April edition of Palliative Medicine
Portugal is a country with an extremely ageing population, and limited access to palliative care, with service numbers well below the recommended thresholds in the EAPC White Paper on standards and norms for hospice and palliative care in Europe. Hence, we experience the impact of this lack of expertise on an everyday basis, not only as health professionals but also as family members and friends.
Hospital death is a reality for the majority, not because this is where the patient prefers to die, but because it is what is possible, and/or what is known. The ethos of the Portuguese SNS is focused on cure, on ‘saving lives’, and those who are not deemed to be cured are too often put aside with the famous words: ‘There is nothing we can do for this patient.’
Wrong! There is so much that can be done to improve the lives of these patients and their families.
Well aware of the need to know more about the reality of the population with palliative care needs in Portugal, in 2012 I started to work in the DINAMO Project team at King’s College London, Cicely Saunders Institute, where I also completed the MSc programme. DINAMO is a five-year research project funded by the Calouste Gulbenkian Foundation, aimed at enhancing advanced training and research to optimise home palliative care in Portugal.
We started by studying how the preferences of the Portuguese population (elicited in a seven EU-country survey conducted in the context of the PRISMA Project) compared to the reality of place of death in this country. We found a huge gap between preferences and reality for place of death. While only 9% of the people surveyed chose to die in hospital, 62% of the population did die in hospitals in 2010 (findings published in the Portuguese Medical Journal).
So, the next question was: how did the proportion of hospital deaths evolve over time? And, if circumstances remained the same in the Portuguese context (i.e. if nothing is done to reduce the high proportion of people who die in hospital), how would hospital deaths numbers and proportions change in the future? Answering these important questions involved negotiating access to the Portuguese mortality database. Accessing this database, not only allowed us to study past and future hospital deaths but also to answer further questions in other DINAMO studies (read more on our webpage). More recently, the data were used in the Portuguese Palliative Care Observatory application, showing regional profiles of palliative care need in Portugal.
When looking at past trends of hospital deaths in Portugal, we found that hospital deaths increased steadily from 45% in 1988 to 62% in 2010. The projected hospital deaths, according to three different models, show a further increase in hospital deaths, by at least a quarter until 2030. Conditions remaining the same, at least 75% of all deaths will take place in hospital by 2030, representing 23,000 more deaths in hospital per year compared to 2010. The findings were published last month in Palliative Medicine.
Similar studies have influenced national programmes for the development of palliative care services (e.g. in the UK, Belgium, Canada) leading to changes in place of death trends based on population preferences. We therefore call for a national strategy in Portugal to develop integrated specialist home palliative care teams, in order to support people’s preferences and enable more to achieve a good death at home, with the best possible outcomes for patients and families.
Download the full article in Palliative Medicine
This post relates to a longer paper, ‘Past trends and projections of hospital deaths to inform the integration of palliative care in one of the most ageing countries in the world’, by Sarmento VP, Higginson IJ, Ferreira PL, Gomes B., published in Palliative Medicine, 2016, Vol. 30 (4) 363-373. DOI: 10.1177/0269216315594974.You can download the paper here.
I am grateful to the following organisations whose support enabled this project:
Calouste Gulbenkian Foundation; colleagues in the DINAMO Project (Principal Investigator: Bárbara Gomes, Senior Researcher: Irene Higginson); the Portuguese Statistics Office; the EUROSTAT; the Office of Statistics and Education Planning of the Portuguese Ministry of Sciences, Technology and Higher Education; the Cicely Saunders International.