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HEALTH AND HEALTH CARE INNOVATION

Past Program

Dec 14 - Dec 19, 2016

Rethinking Care Toward the End of Life

Session 562

Session Overview

Health care systems everywhere face a multi-faceted crisis, and care towards the end of life is at the sharpest end of that, from care of the increasingly vulnerable through to extensive palliative care. There is a need to re-think such care to make sure it is actually what patients want, what they need to serve their goals at the end of life, and to shape provision through aggregating preferences and through community engagement rather than structuring care as legacy systems dictate. We need to identify best practice, first in ascertaining these preferences and variations among them, and then in acting on them, often when there are growing uncertainties and resources are constrained.

As well as effective shared decision making necessary to shape treatment in line with patient preferences, the aggregation of data about such choices is required to guide the development of capacity in health systems. And comprehensive end of life care transcends the traditional boundaries of health care systems, of course - ever greater emphasis is being placed on the integration of health care with social care. The way we gather, integrate and deploy data around health and social care towards the end of life is crucial in ensuring that interventions are effectively centred on patients' values, their wants and needs.

Ethically and politically a particularly acute issue is how decisions are taken when a patient can no longer express their own preferences. There are diverse protocols to guide clinicians in these circumstances. But this cannot be resolved technocratically - it requires continuing public engagement and debate.

These questions around end of life care are urgent globally, and innovators and pioneering organizations in the US, Europe and low and middle income countries are making breakthroughs. The time is ripe to ensure that these are scaled up and replicated to the benefit of general populations - bearing in mind that the resources necessary for effective care varies greatly across the social spectrum and in low and middle income countries. Less wealthy countries can often teach much across borders as to innovation and the most effective use of resources, to the benefit of other countries, rich and poor. This applies to end of life care for younger populations just as much for elders.  But no country, whether the United States or in Europe, is in a position to continue “business as usual” and meet the challenge of ageing populations.

Participant Profile

The 60 participants were drawn from all regions of the world and will include health and social care leaders and practitioners, patient advocates, innovators, ethicists and policymakers, along with representatives of civil society, the media and other stakeholders in the debate. They worked together in country and thematic teams.

Key Questions

  1. How do we engage patients and families to ensure that end of life care honors what matters most to them, with respect for culture and for context at the level of the individual and the population?
  2. What are the relative contributions of health care and community-based social care in different contexts? How can they best be joined up to maintain function, independence, and agency for people for whom death is near?
  3. How can health care systems better support families, care-givers and community members in caring for people of all ages for whom death is near?
  4. How are robust processes established and implemented for arriving at decisions when patients can no longer express their own preferences? What role does public engagement and government have in this?
  5. Which are the most promising evidence-based and cost-effective innovations in care towards the end of life? What yields greatest value to patients, especially in low resource settings?
  6. What can we learn from the systems failures in high income countries with regard to supporting patients, families and care-givers with palliative care?
  7. How can palliative care best be undertaken in the context of societal deprivation or conflict?

Outcomes and Impacts

  • Cross border learning and transmission of best practice in shaping
    care towards the end of life;
  • Ongoing networking and collaborations among participants and the
    institutions they represent;
  • Action plans devised for specific country or thematic contexts;
  • A "Salzburg Questions" Twitter series of monthly debates focusing on key questions for delivering better care at the end of life.

Session Report

Download report as a PDF

 

Suggested Readings

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Alonso-Babarro, Alberto et al. "Can This Patient Be Discharged Home? Factors Associated with At-Home Death Among Patients with Cancer." Journal of Clinical Oncology, 2011.

Alsirafy, Samy A. et al. "Opioid Consumption Before and After the Establishment of a Palliative Medicine Unit in an Egyptian Cancer Centre." Journal of Palliative Care 28:3, 2012.

Alsirafy, Samy A. "Opioid Consumption in Egypt." Kasr El-Aini Journal of Clinical Oncology and Nuclear Medicine Vol 8, No. 1-2, 2012.

Alsirafy, Samy A. et al. "The Use of Opioids at the End of Life and the Survival of Egyptian Palliative Care Patients with Advanced Cancer." American Palliative Medicine, 2013.

Australian Institute of Health and Welfare. "Palliative Care: A Welfare Perspective." Australia's Welfare no. 12(189), 2015.

Balaban, Richard. "A Physician's Guide to Talking About End-Of-Life Care." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1495357/pdf/jgi_07228.pdfJournal of General Internal Medicine 15, 2000.

Bausewein, Claudia et al. "Development, effectiveness and cost-effectiveness of a new out-patient Breathlessness Support Service: study protocol of a phase III fast-track randomised controlled trial." BMC Pulmonary Medicine 12:58, 2012.

Brant, Jeannine M. et al. "Evaluating Palliative Care Needs in Middle Eastern Countries." Journal of Palliative Medicine, 2014.

Butler, Katy. "What Broke my Father's Heart." The New York Times Magazine, 18 June, 2010. 

Canadian Association of Schools of Nursing and Canadian Virtual Hospice. The Story About Care. Video.

Charter for the Care of the Critically Ill and Dying in Germany.

Children's Palliative Care Project. Anoop's Story. 2016. Password: pallium.

Chochinov, Harvey. "Dying, Dignity, and New Horizons in Palliative End-of-Life Care." A Cancer Journal for Clinicians, 2006.

The Conversation Project. Pediatric Starter Kit: Having the Conversation with Your Seriously Ill Child. Cambridge: The Institute for Healthcare Improvement, 2016.

Connor, Stephen R. and Perry G. Fine. "Lessons Learned from Hospice in the United States of America." In Oxford Textbook of Palliative Medicine, 2010.

The Conversation Project. Your Conversation Starter Kit: For Families and Loved Ones of People with Alzheimer's Disease or Other Forms of Dementia. Cambridge: The Institute for Healthcare Improvement, 2016.

Daveson, Barbara et al. "To be involved or not to be involved: A survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe." Palliat Med. 2013 May;27(5):418-27.

Department of Health. End of life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. 2008.

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El Shami, Mohammad. "Palliative Care: Concepts, Needs, and Challenges. Perspectives on the Experience at the Children's Cancer Hospital in Egypt." Pediatric Hematology Oncology Vol. 33 Sup. 1, 2011.

Finkelstein, Eric. "How Much Would You Pay to Extend your LIfe by a Year?" The Straits Times, 31 March 2016.

Finkelstein, Eric. "Willingness to Pay for High Cost Moderately Life Extending Treatments: Implications for Healthcare Reform."

German Association for Palliative Medicine. Charter for the Care of  the Critically Ill and the Dying in Germany.

Gomes, Barbara and Irene J. Higginson. "Factors Influence Death at Home in Terminally Ill Patients with Cancer: Systematic Review." BMJ, 2006.

Gysels Marjolein et al. "Dignity Through Integrated Symptom Management: Lessons From the Breathlessness Support Service." Journal of Pain and Symptom Management 52(4), 2016.

Harrison, Krista L. and Stephen R. Connor. "First Medicare Demonstration of Concurrent Provision of Curative and Hospice Services for End-of-Life Care." American Journal of Public Health, 2016.

Hasselaar, Jeroen and Sheila Payne (eds.). Integrated Palliative Care. Nijmegen: Radboud University Medical Center, 2016.

Hasselaar, Jeroen and Sheila Payne (eds.). Los cuidados paliativos integrados. Nijmegen: Radboud University Medical Center, 2016.

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and Long Term Care.

Kumar, Suresh. "Models of Delivering Palliative and End-of-Life Care in India." Kerala: Institute of Palliative Medicine, 2013.

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Living My Culture. We Don't Talk About Death. Canadian Virtual Hospice. Video.

Living My Culture. The Meaning of Food and Water. Canadian Virtual Hospice. Video.

Living My Culture. Taboo Topics. Canadian Virtual Hospice. Video.

Living My Culture. Aimee and Michi. Canadian Virtual Hospice. Video.

Living My Culture. Bev (Metis). Canadian Virtual Hospice. Video.

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Manalo, Maria Fidelis C. "End-of-Life Decisions About Withholding or Withdrawing Therapy: Medical, Ethical, and Religio-Cultural Considerations." Pallative Care: Research and Treatment, 2013.

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Participants

Lauren Bangerter
Research Associate, the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Healthcare Delivery, USA
Amber Barnato
Professor of Medicine, University of Pittsburgh School of Medicine and Graduate School of Public Health, USA
Claudia Bausewein
Director of the Palliative Medicine Clinic, University of Munich, Germany
Agnes Binagwaho
Former Minister of Health, Kigali, Rwanda
Catherine Calderwood
Chief Medical Officer for Scotland, UK
Lynna Chandra
Rachel House pediatric palliative care service, Jakarta Barat, Indonesia
Bruce Chernof
President & Chief Executive Officer, The SCAN Foundation, Long Beach, CA
Stephen Connor
Executive Director, Worldwide Hospice Palliative Care Alliance (WhPCA)
Shelly Cory
Executive Director, Canadian Virtual Hospice, Canada
David Currow
Chief Executive Officer of Cancer, Institute NSW; Professor of Palliative and Supportive Services, Flinders University, Adelaide
Julia Downing
Chief Executive International Children's Palliative Care Network, and Professor, Makerere University, Kampala
Arielle Eagan
Research Fellow, Non-Communicable Diseases Division, Rwanda Biomedical Center, Ministry of Health, Rwanda; and Dartmouth Institute for Health Policy and Clinical Practice
Nevin El Nadi
Researcher, Shamseya, Egypt
Wessam Elsherief
Associate Professor, Cairo University, Egypt
Eric Finkelstein
Professor and Executive Director, Duke-NUS Medical School, Singapore
Udahemuka Gasana
Clinical Psychologist; Consultant in HIV psychological management; National Coordinator of Discordant Couple for Rwanda
Cynthia Goh
Senior Consultant of Palliative Medicine at the National Cancer Centre Singapore (NCCS)
Rajesh Gongal
Dean Of Patan Academy of Health Sciences, Nepal
Joan Griffin
Associate Professor, Mayo Clinic, USA
Richard Harding
Reader in Palliative Care, Cicely Saunders Institute, Kings College London
Vedaste Hategekimana
Registered Nurse, Butaro Hospital; Oncological Nurse Educator, Cancer Center of Excellence, Rwanda
Irene Higginson
Director of Cicely Saunders Institute, Kings College London
Anya Humphrey
Patient and Family Advisor, Canadian Fund for Health Care Improvement, Canada
Jagannath Jayanthi
Executive Committee member, Pain Relief and Palliative Care Society, Hyderabad, India
Maria Judd
Senior Director, Canadian Fund for Health Care Improvement, Canada
Joyce Kayonga
Senior Nursing Officer, King Faisal Hospital, Kigali, Rwanda
Sumi Kim
Deputy Manager, National Health Insurance (NHIS), Republic of Korea
Kathryn Kirkland
Interim Chief, Palliative Care, Dartmouth-Hitchcock Medical Center, USA
Franziska Kopitzsch
Head, Coordination and Networking Center for Palliative Care and Hospice Care in Germany
Suresh Kumar
Director, Institute of Palliative Medicine, Kerala, India
Jung Kwak
Associate Professor of Social Work, University of Wisconsin - Milwaukee
Mhoira Leng
Head of Palliative Care, Makerere University, Uganda
Patricia Julie Ling
CEO of the European Association for Palliative Care
Angela Lunde
Education Co-Investigator Alzheimer's Disease Research, Mayo Clinic, USA
Emmanuel Luyirika
Executive Director, African Palliative Care Association, Uganda
Maria Fidelis Manalo
Head of the Section of Hospice and Palliative Care, The Medical City Hospital, Pasig City, The Philippines
Alok Mathur
Additional Deputy Director General, Ministry of Health and Family Welfare, India, New Delhi, India
Manish Mishra
Clinical Research Fellow at The Dartmouth Institute for Health Policy and Clinical Practice and Assistant Professor, Geisel Medical School, Dartmouth, USA
Tandiyar Mossaad Ghattas
General Manager, Josaab Foundation for Social Development, Egypt
Margaret Mulley
Senior Manager Client Engagement, Dartmouth Institute for Health Policy and Clinical Practice
Jeff Myers
Palliative Medicine Physician, Sunnybrook Health Science Centre, Canada
Waleed Nafae
Consultant Palliative Care, Aiadi Almostaqbal Oncology Hospital, Egypt
Jane Nakawesi
Paediatrician, Mildmay, Uganda
Elizabeth Namukwaya
Head of the Mulago/Makerere Palliative Care Unit, Uganda
Ivan Odiit
Volunteer Leader, National Hospital, Uganda
Vicky Opia
palliative care nurse working with refugees from South Sudan, Northern Uganda
Gayatri Palat
MNJ Institute of Oncology and Regional Cancer Center, Hyderabad, India
Sheila Payne
Emeritus Professor, International Observatory on End of Life Care, Lancaster University, UK
Jose Pereira
Palliative Care Physician, College of Family Physicians of Canada and Pallium Canada
Smriti Rana
Program Director, Children's Palliative Care Project, Pallium India
Maria Restrepo Restrepo
Oncologist & Palliative Care Specialist, Pablo Tobon Uribe Hospital, Medellin, Colombia
YongJoo Rhee
Associate Professor, Department of Health Sciences, Dongduk Women's University, Seoul, Republic of Korea
Ayman Sabae
Researcher, Egyptian Initiative for Personal Rights, Egypt
Jacinta Sabiiti
Coordinator for bilateral cooperation, Principal Medical Officer, Ministry of Health Headquarters, Uganda
Juan Santacruz Escudero
Director of Palliative Care Services, Fundación Santa Fe de Bogotá, Colombia
Gregor Smith
Deputy Chief Medical Officer for Scotland
Yi-Jong Suh
Professor, Department of Sociology & STS Studies Seoul National University, Republic of Korea
Juan Pablo Uribe Restrepo
Executive Director, Fundación Santa Fe de Bogotá, Colombia
Nandini Vallath
Pallium India, Kerala, India
Max Watson
,

SESSION PARTNERS

WITH ADDITIONAL SUPPORT FROM

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