To celebrate the International Day of Older Persons – a special post from PACE (Palliative Care for Older People in Europe) . . .
PACE is an EUFP7-funded study that aims to compare the effectiveness of palliative care for older people in nursing homes in Europe. PACE researcher and a doctoral researcher at the End-of-Life Care Research Group, Rose Miranda, gives an update on behalf of the PACE consortium.
On the United Nations’ International Day of Older Persons, the PACE consortium would like to join the celebration of Older Human Rights Champions! In line with this celebration, it is our ambition to uphold dignity and preserve the autonomy of older people. We promote the integration of palliative care in nursing homes, where most older people are expected to live, receive care and die. The number of older people is rapidly increasing, from almost 700 million today to around two billion by 2050. This poses a huge challenge to health systems worldwide, as most older people will have life-limiting illnesses requiring complex care.
Promoting palliative care would not mean that we treat all older people with complex care needs as ‘dying’. It means that we treat them in a way that corresponds to the principles of a palliative care approach, which includes the continuous provision of care based on patients’ and their families’ needs, quality of life, dignity, autonomy and compassionate care.1 If delivered timely and effectively, palliative care has a great potential to ensure the dignity and autonomy of older people.
Finding ways to improve palliative care for older people
In our PACE project, we conducted a survey in 322 nursing homes in six European countries. Nursing staff were surveyed on their knowledge of palliative care and their perception of the quality of dying and end-of-life care of deceased residents.2,3 We found that the population in this setting is very complex. For example, more than half of the residents had dementia, of which half of them progressed to an advanced stage at the end of life. Moreover, we found that across countries, the nursing staff often lacked knowledge of managing physical symptoms common at the end of life, such as pain or weight loss. This knowledge gap may have been compounded by the lack of formal training in palliative care and working in countries with less established palliative care structures.2 Strikingly, this gap apparently reflects on the quality of care delivered to residents as, among other symptoms, their pain, discomfort and difficulty in swallowing were not adequately managed. The resident’s hygiene and dignity were addressed well, but less attention was given to managing aspects more closely related to palliative care and dying, such as achieving closer or shared-decision making about treatment plans.3
We believe that these problematic issues should be brought to the top of countries’ policy agendas, so actions will be undertaken to address them on a larger scale. Therefore, we collaborate closely with our dissemination partners – AGE Platform Europe, Alzheimer Europe, European Association for Palliative Care and European Forum for Primary Care – who have all achieved so much for their own respective advocacies. For instance, in the latest session of the United Nations Open-Ended Working Group on Ageing, which discusses the ability of older people to fully enjoy their human rights across the world, AGE Platform Europe highlighted the gaps in access to long-term care and the central role of palliative care in the delivery of high-quality, person-centred care and support.4
Additionally, in search of effective strategies to improve palliative care for older people, we also conducted a large-scale clinical study to test whether a standardised palliative care programme ‘PACE Steps to Success’ can improve staff knowledge and care in 80 nursing homes in seven European countries.5 Our results will come out soon, so please stay updated by following us on Twitter @fp7PACE
We believe that by the end of our project, we will turn our ambition into reality as we contribute to a world where more and more people can grow old with dignity and a better sense of autonomy and quality of life.
We are grateful to all the nursing homes and their staff for participating in our project. We would also like to acknowledge the contribution of Professor Lieve Van den Block, Dr Lara Pivodic and AGE Platform Europe in writing this blog post.
References and further reading
- Van Den Block L. The need for integrating palliative care in ageing and dementia policies. European Journal of Public Health. 2014.
- Smets T, Pivodic L, Piers R, et al. The palliative care knowledge of nursing home staff: The EU FP7 PACE cross-sectional survey in 322 nursing homes in six European countries. Palliative Medicine. 2018.
- Pivodic L, Smets T, Van den Noortgate N, et al. Quality of dying and quality of end-of-life care of nursing home residents in six countries: an epidemiological study. Palliative Medicine. 2018. [Manuscript in press].
- AGE Platform Europe. AGE and its members bring the voices of older persons in the UN Open-Ended Working Group on Ageing. You can see the report by following this link.
- Smets T, Onwuteaka-Philipsen BBD, Miranda R, et al. Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the ‘PACE Steps to Success’ intervention in seven countries. BMC Palliat Care. 2018.
More about PACE …
PACE is coordinated by Professor Lieve Van den Block of the End-of-Life Care Research Group of Vrije Universiteit Brussel and Ghent University.
- PACE website.
- PACE Twitter handle: @fp7PACE
- End-of-Life Care Research Group Twitter: @EoLC_research
- Contact Rose Miranda by email.
- Read more posts from PACE on the EAPC blog.