New IAHPC Definition of Palliative Care
The WHPCA board was recently asked to endorse a definition of palliative care developed by the International Association for Hospice and Palliative Care. The definition was developed using a consensus process (https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/). This was done as part of IAHPC’s official relations with WHO. A steering group was formed and over 400 of IAHPC’s members were consulted. WHPCA agreed that the current WHO definition has limitations and had published a policy paper on this that can be viewed at: http://www.thewhpca.org/resources/item/definging-palliative-care. The board agreed with many of the changes that IAHPC members made but found that there were some issues with the new definition and therefore decided that they could not endorse the proposed definition at this time. We want to thank IAHPC however for working on improvements to the definition and understand that it is a difficult task to get full agreement within the diverse global palliative care community.
Key issues were:
- There was a lot of discussion concerning the use of 'severe illness' in the new proposed definition. The concerns raised were that the word ‘severe’ can be seen as a negative and unnecessarily frightening word which is unlikely to be used in care settings and could upset both people who could benefit from palliative care and potential allies. At the same time, there was some concern expressed that the term did not accurately reflect the foundation of palliative care as a program of services for people where cure is not likely and could contribute to greater confusion about what palliative care is. While the board recognizes the challenges of finding suitable language with the variety of palliative care systems internationally, the need to be accurate and the requirements to use accessible language, the board believes that ‘serious’ conditions is preferable to ‘severe’, due to the greater acceptance of this term by the public and its greater global applicability.
- We would also support inclusion of the words ‘life-limiting’ in the definition. We acknowledge that there remain challenges in the defining of who requires generalized palliative care and more specialized palliative care but believe that this can be managed with more technical documentation for specific audiences and specific settings and does not need to be detailed in the definition.
- It was also felt that there was a lack of any language on early palliative care and instead reference to the importance of end-of-life; also, no reference to person or people-centred care.
- There was a specific criticism that the views of direct patient stakeholders including those living with a variety of conditions that may benefit from palliative care including HIV, cancer and dementia, were not included in the process
- We believe that there is insufficient mention in the definition of the crucial role that family members, community carers and palliative care assistants play in the delivery of palliative care worldwide. Family members are not just recipients of palliative care but a crucial and significant part of the care team. In addition, community carers, palliative care assistants and volunteers are crucial part of service delivery with the support of health and social care professionals.
- The specific reference to ‘insurance plans’ is challenging. This is because there are significant misunderstandings globally about insurance plans including the promotion of private health insurance plans only serving certain sections of the population. This over emphasises the importance of insurance models in delivering UHC. The WHPCA believes in the promotion of Universal Health Coverage for all with publicly funded, free at the point of use service delivery.
- There was broad support for the use of “serious health related suffering,” as noted in the recent Lancet Commission Report on Palliative Care and Pain Relief.
- The WHPCA welcomes the specific reference to ensuring access to palliative care for vulnerable groups and had concern about the use of the word ‘adequate’ rather than good care and that only children and older persons were specified. Access to palliative care for key populations including drug users, sex workers, prisoners, LGBTI communities is something that has been neglected and we would argue these vulnerable groups or key populations should be central in the definition.
- As an INGO in official relations with WHO we are obliged to use the current WHO definition, which is part of the WHA resolution, until such time as WHO changes the definition.
Palliative care is a crucial part of the continuum of care within Universal Health Coverage and primary health care. WHPCA is keen to ensure that as many people as possible can benefit from palliative care and that generalized and specialised palliative care is integrated into health and community systems. We recognize that consensus on definitions is very important, and collaboration and the meaningful engagement and inclusion of the populations palliative care serves as well as broader health and development actors is crucial. Palliative care is everyone’s business and our focus remains to work collaboratively to ensure that people get the palliative care at the level that they need, when they need it and where they need it as a crucial component of UHC and primary health care.
We are committed to working collaboratively with IAHPC, ICPCN, our regional, national association and local partners, governments, patient led groups, health, human rights and community development partners on palliative care development worldwide.