Palliative care for older people A public health perspective

Current projections indicate that by 2050 the number of people aged over 80 years old will rise to 395 million and that by this date 25-30% of people over the age of 85 will show some degree of cognitive decline. Palliative care for older people: A public health perspective provides a comprehensive account of the current state of palliative care for older people worldwide and illustrates the range of concomitant issues that, as the global population ages, will ever more acutely shape the decisions of policy-makers and care-givers.

The book begins by outlining the range of policies towards palliative care for older people that are found worldwide. It follows this by examining an array of socio-cultural issues and palliative care initiatives, from the care implications of health trajectories of older people to the spiritual requirements of palliative care patients, and from the need to encourage compassion towards end-of-life care within communities to the development of care pathways for older people.

Palliative care for older people: A public health perspective is a valuable resource for professionals and academics in a range of healthcare and public health fields to understand the current state of policy work from around the world. The book also highlights the social-cultural considerations that influence the difficult decisions that those involved in palliative care face, not least patients themselves, and offers examples of good practice and recommendations to inspire, support, and direct healthcare policy and decision-making at organisational, regional, national and international levels.

Lieve van den Block, End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Brussels, Belgium,Gwenda Albers, End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Brussels, Belgium,Sandra Martins Pereira, Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, VU University medical center, Amsterdam, the Netherlands,Bregje Onwuteaka-Philipsen, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, VU University medical center, Amsterdam, the Netherlands,Roeline Pasman, Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, VU University medical center, Amsterdam, the Netherlands,Luc Deliens, End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Brussels, Belgium

Lieve Van den Block, MSc, PhD, is Professor of communication and education in family medicine at the Vrije Universiteit Brussel. She also works as postdoctoral researcher of the Fund for Scientific Research Flanders working in the End-of-Life Care Research Group of the Vrije Universiteit Brussel and Ghent University in Belgium where she chairs the research on palliative care for older people. She holds a Master in Clinical Psychology and a PhD in Medical Social Sciences. She coordinates the EURO SENTI-MELC study, a study occupied with monitoring end-of-life care using sentinel networks of general practitioners in Europe, and is executive coordinator of EU FP7 EURO IMPACT (2010-2014) project, a Marie Curie Initial Training Network on palliative care, and coordinator of EUFP7 PACE on Effectiveness of Palliative Care for Older People (2014-2019).

Gwenda Albers MSc, PhD, is postdoctoral research fellow on the EU FP7 EURO-IMPACT project at the Vrije Universiteit Brussels. She has a background in Health Sciences and has been involved in palliative care research since 2008. Her research has been focused on quality of life, dignity, dementia and palliative care for older people. She has been working on several projects (a.o. EU FP7 PRISMA), was a visiting researcher at King's College Cicely Saunders Institute in London and obtained her PhD in 2012 from the VU University Amsterdam.

Sandra Martins Pereira, MSc, PhD, is postdoctoral research fellow on the EU FP7 EURO-IMPACT project at the VU University medical center, EMGO Institute for Health and Care Research in Amsterdam, the Netherlands. She obtained her PhD and MSc in Bioethics, and obtained Post-Graduation in Palliative Care, Graduation in Educational Sciences and in Nursing. She is an integrated member of the Office for Research in Bioethics at the Institute of Bioethics, Catholic University of Portugal.

Bregje Onwuteaka-Philipsen, PhD, is professor of End-of-life Research at the VU university medical center, EMGO Institute for Health and Care Research in Amsterdam, the Netherlands. She leads the research group 'Public Health at the end of life' of the department of public and occupational health, is program director of research program 'Quality of Care' of the EMGO Institute, and the inter-institutional research program 'Quality of life in cancer and immunology', and board member of Expertise Center for Palliative Care. In 2008 she received a career award of the Netherlands organization of scientific research (NWO, VICI scheme) for the research program 'the patient perspective in end-of-life care: personal dignity, preferences and participation'. She has substantial experience at leading and cooperating in national and international multidisciplinary research programs and has over 200 papers in international peer reviewed journals.

Roeline Pasman, MA, PhD, is senior researcher End-of-Life Studies at the VU University medical center, EMGO Institute for Health and Care Research in Amsterdam, the Netherlands. She is trained as a nurse and has a Master in Sociology. She supervises PhD students in their qualitative and quantitative studies on different end-of-life topics (shared decision making, dignity, advance care planning, hospice care). She also participated in the EU FP7 PRISMA project and participates in the EU FP7 EURO-IMPACT project. She participates in the teaching course Qualitative Research for Health Sciences at the Vrije Universiteit Amsterdam.

Luc Deliens, PhD, Professor of Public Health and Palliative Care. He is qualified in Medical Sociology, and director of the End-of-Life Care Research Group (a multidisciplinary research team of about 40 researchers with clinical (general practitioners, clinical oncologists, geriatricians, nurses), sociological, psychological and ethical backgrounds) at the Vrije Universiteit Brussel & Ghent University, Belgium. He is Co-Chair of the European Association for Palliative Care Research Network, and Scientific Director of EU FP7 EURO-IMPACT project. He has successfully supervised 27 PhD students and is currently supervising around 20 PhD students, and published over 300 journal articles, and over 50 book chapters.

PART I Palliative Care for Older People : An introduction
1. A public health perspective to palliative care for older people: An introduction, Gwenda Albers, Sandra Martins Pereira, Bregje Onwuteaka-Pchilipsen, Luc Deliens, Roeline Pasman, Lieve Van den Block
PART II Organization of and policies for palliative care for older people
2. Long-term Care Systems, Zeynep Guldem Okem
3. Development of palliative care in long-term care, Katherine Froggatt and Hazel Morbey
4. Development of integrated person-centred care in long-term care, Hubertus Vrijhoef and Liesbeth Borgermans
5. Policies on palliative care for older people in Africa, Richard Harding, Richard A. Powell and Liz Gwyther
6. Policies on palliative care for older people in Asia, Cynthia Goh, Sumytra Menon and Noreen Chan
7. Policies on palliative care for older people in Australia, David Currow and Jane Phillips
8. Policies on palliative care for older people in Europe, Carlos Centeno, Jose Miguel Carrasco, Kathrin Woitha and Eduardo Garralda
9. Policies on palliative care for older people in North America, Katherine Ornstein and Diane Meier
10. Policies on palliative care for older people in Latin America and the Caribbean, Liliana De Lima, Lilian Hidalgo, Rocio Morante and Jose Parodi
PART III Socio-cultural and clinical context of dying in old age
11. Dying in place in old age: public health challenges, Joachim Cohen and Merryn Gott
12. Symptoms and trajectories experienced by older people approaching and at the end of life: Implications to care, Symptoms and trajectories experienced by older people approaching and at the end of life: Implications to care
13. End-of-life decisions for older patients who are approaching death, Agnes van der Heide and Kenneth Chambaere
14. Ethical issues in palliative care for older people, Jennifer Shaw and Margaret Battin
15. Cultural issues in palliative care for older people, Marjolein Gysels
16. Spirituality and spiritual palliative care in older people, Marie-Jose Gijsberts
PART IV Use and access of palliative care for older people
17. Use of generalist and specialist palliative care for older people, Thomas Carroll and Timothy Quill
18. Compassionate communities: Caring for older people towards the end of life, Allan Kellehear
19. Palliative care for older people with dementia, Ladislav Volicer, Noorhazlina Binte Ali and Joyce Simard
20. Ladislav Volicer, Noorhazlina Binte Ali and Joyce Simard, Hazel Morbey and Sheila Payne
21. Collaboration between professionals as a necessary condition for palliative care, Ruth Piers, Nele Van Den Noortgate and Andre Vyt
22. Communication and advanced care planning (ACP) in older people, Kristian Pollock and Jane Seymour
PART V Innovations in palliative care for older people
23. EU civil society initiatives to protect the right to live and die in dignity, Anne-Sophie Parent
24. Care pathways for older people in need of palliative care, Clare Gardiner, Tony Ryan, Merryn Gott and Christine Ingleton
25. A program for advance care planning for older people: Respecting Patient Choices, A program for advance care planning for older people: Respecting Patient Choices
PART V Conclusion: What does a public health approach to improving palliative care in older people look like?
26. A public health approach to improving palliative care for older people, Sandra Martins Pereira, Gwenda Albers, Bregje Onwuteaka-Philipsen, Luc Deliens, Roeline Pasman, Lieve Van den Block
Index