About Programs Fellowship News Calendar
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.
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.
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Abdel-Hadi, S. et al. "Impact of Pain Management Using the WHO Analgesic Ladder in Children with Cancer in South Egypt Cancer Institute, Assiut University." SECI Oncology, 2014.
Aljawi, Deena M. and Joe B. Harford. "Palliative Care in the Muslim-Majority Countries: The Need for More and Better Care."Contemporary and Innovative Practice in Palliative Care, 2012.
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.
The Economist Intelligence Unit. The 2015 Quality of Death Index: Ranking Palliative Care Across the World. Lien Foundation. 2015
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.
Higginson, Irene J. et al. "Dying at Home - Is it Better: A Narrative Appraisal of the State of the Science." Pallative Medicine 27(10), 2013.
Higginson, Irene J. et al. "Is Short-Term Palliative Care Cost-Effective in Multiple Sclerosis? A Randomized Phase II Trial." Journal of Pain & Symptom Management 38(6), 2009.
House of Commons Health Committee. End of Life Care. Fifth Report Session 2014-2015. House of Commons, 2015.
Hui, David and Eduardo Bruera. "Models of integration of oncology and palliative care." Annals of Palliative Medicine vol 4, no 3, 2015.
Jones, R. V. H. and J. Fiske Hansford. "Death from Cancer at Home: The Carers' Perspectives." BMJ 206, 1993.
Kavalleratos, Dio et al. "Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis."Jama vol 316, no 20, 2016.
Kumar, Suresh. "Building Palliative Care Programme in Developing Countries and Role of Home Based Care." WHO Collaborating Center for Community Participation for Palliative Care
and Long Term Care.
Kumar, Suresh. "Models of Delivering Palliative and End-of-Life Care in India." Kerala: Institute of Palliative Medicine, 2013.
Living My Culture. The Value of Compassion. Canadian Virtual Hospice. Video.
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.
Living My Culture. Kim. Canadian Virtual Hospice. Video.
Lowther Keira et al. "Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy."BMC Infectious Diseases. 12:288, 2012.
Malhotra, Chetna et al. "Comparison of Preferences for End-of-life Care Among Patients with Advanced Cancer and their Caregivers: A Discrete Choice Experiment." Pallative Medicine, 2015.
Manalo, Maria Fidelis C. "Barriers and Potential Solutions to Physician Referrals and Palliative Care Services in the Philippines."
Manalo, Maria Fidelis C. "Breaking Bad News and Communication Along the Disease Trajectory."In Textbook of Family Medicine: Principles, Concepts, Practice, and Context, edited by Zorayda Leopando et al, 435-444. C&E Publishing, 2014.
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.
Marie Curie Cancer Care. End of Life: A Booklet for People in the Final Stages of Life, and their Carers. The Information Standard, 2013.
Mason Bruce et al. "Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study." The British journal of general practice : the journal of the Royal College of General Practitioners 63(613), 2013.
May, Peter et al. Palliative Care Teams' Cost-Saving Effect Is Larger For Cancer Patients With Higher Numbers Of Comorbidities.Health Affairs 35, no.1 (2016).
Mowe, Sam. "The Long Goodbye: Katy Butler On How Modern Medicine Decreases Our Chance Of A Good Death"The Sun, April 2014.
National Council for Palliative Care. Introductory Guide to End of Life Care in Care Homes. Department of Health, 2006.
National Institute on Aging. End of Life: Helping with Comfort and Care. National Institutes of Health, 2008.
National Palliative and End of Life Care Partnership. Ambitions for Palliative and End of Life Care: A National Framework for Local Action 2015-2020. 2015.
Rome, Robin B. et al. "The Role of Palliative Care at the End of Life."The Ochsner Journal, 2011.
Salime, Rasha Awad A'Elmagied. Knowledge and Practices of Nurses About End of Life Nursing care for Critically ill Patients, Manial University Hospital: A Suggested Intervention Protocol. Cairo University, 2012.
Sholl, Jessie. Planning for the Inevitable: End-of-Life Discussions. ExperienceLife, 2013.
Silbermann, Michael et al. "Palliative Cancer Care in Middle Eastern Countries: Accomplishments and Challenges."Annals of Oncology 23, 2012.
Wright, Alexi A. et al. Place of Death: Correlations with Quality of life of Patients with Cancer and Predictors of Bereaved Caregivers Mental Health. American Society of Clinical Oncology, 2010.
