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Lien Centre for Palliative Care has been commissioned by Lien Foundation to produce the 2020 rankings of the Quality of End of Life Care across countries. This index will focus on patients with life limiting illnesses and their families and aims to produce an index and rankings that take into account the preferences of patients, their caregivers and providers in terms of what is truly important at end of life. The aim of this research is to investigate best practices in palliative care policy and implementation as they relate to end-of-life care for individuals with life-limiting or life-threatening conditions. This task will be completed through a systematic review of peer reviewed and grey literature, supplemented with qualitative interviews to identify the list of the candidate indicators to be used in the index. A final instrument when completed by country experts will allow for ranking countries in their ability to deliver high quality end of life care.
Palliative care has gained considerable attention at the global, regional and national levels and there has been follow-up on actions outlined in the 2014 World Health Assembly (WHA) Resolution on palliative care. The WHA Resolution called countries to action to integrate palliative care into their national health strategies and as part of universal health coverage (UHC) efforts. Further, important contributions have been made to the literature on palliative care overall and at the end of life, such as by the Lancet Commission on Global Access to Palliative Care and Pain Relief as well as on quality healthcare.
Through this research, the Quality of Death and Dying Index will be published and it seeks to facilitate monitoring of country-level progress based on domains/sub-domains and indicators used to define quality of death and dying in the discourse on end-of-life care, and within the context of the contrasting realities occurring worldwide. Examining the various trajectories that countries have followed and the experiences of end-of-life care design and delivery by countries from different income groups and based on the viewpoint of diverse stakeholders will provide critical information for metrics development, namely the 2020 Quality of Death and Dying Index
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Bereaved caregivers | Caregivers who, in the past two years,have lost a family member or close friend after a brief or extended period of illness or injury | ||
| Country experts | Qualified individuals (providers, palliative care experts, policy makers) from countries across the globe with knowledge of the phenomenon of interest-end-of-life care. |
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| Measure | Description | Time Frame |
|---|---|---|
| Ranking of countries | Ranking of countries in their ability to deliver high quality end of life care. | 2 years |
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Inclusion Criteria for experts:
For caregivers
Exclusion Criteria:
For all participants
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This study will recruit caregivers of patients with life limiting illnesses as well as experts in the field of palliative care.
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| Name | Affiliation | Role |
|---|---|---|
| Eric A Finkelstein, PhD | National University of Singapore | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Duke-NUS Medical School | Singapore | 169857 | Singapore |
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