Palliative care advocates respond to WHO’s omission of palliative care from Draft Global Action Plan on Public Health Response to Dementia 2017-2025

The Draft Decision had been proposed by a number of countries^[1] that had co-sponsored the WHA palliative care (67/19) resolution in 2014.

What advocacy did we do?

A number of organisations (palliative care, cancer and human rights)^[2] collectively expressed their deep concern over the omission of palliative care in the Zero Draft. Representatives of the organisations suggested specific language to include in the next draft and provided more information on the current evidence.

Palliative care advocates engaged with Alzheimer’s Disease International, Dementia Alliance International and Global Alzheimer’s Dementia Alliance, all of which recognised and highlighted the omission of palliative care within consultation response.

In addition, advocates reached out to selected colleagues in-country, in Geneva missions and governments to highlight the omission.

 What did the joint submission response say?

The full submission can be found in the Advocacy Resources section of the Worldwide Hospice Palliative Care Alliance website, but a section of the response is below:

1. Palliative care is a fundamental component of the continuum of care for people living with Alzheimer’s and other dementias from early in the course of the condition until the end-of-life, including supporting carers throughout and into bereavement stages.
2. While a palliative care approach has been recognised as applicable for people living with Alzheimer’s and other dementias from early in the course of the condition, there is a need to undertake further research to provide recommendations on when and how palliative care may be most relevant. 
3. Globally over 315,000 of the total number of people who die from Alzheimer’s disease and other dementias each year require palliative care at the end of life.  However, this figure does not include those living with dementia who die from other conditions and would benefit from palliative care. Nor does it include those who are not at the end of life but may be living with pain and other symptoms.
4. The palliative care needs of people with dementia are often poorly addressed, symptoms such as pain are under-treated and many people are over-subjected to burdensome interventions.  There is concern and increasing evidence that access to palliative care for people with dementia globally is inequitable. 

Lessons learned

• Just because WHA unanimously passed a resolution on palliative care in 2014 does not mean that member states understand the cross cutting nature of palliative care for public health issues such as dementia, NCDs, and the life course approach, to mention only a few areas of concern. Ongoing civil society advocacy on palliative care remains critical.
• Palliative care advocates can and do react quickly when called upon and presented with clear action steps.
• Palliative care advocates must be more proactive. Ideally, palliative care would have been included in the zero draft to start with.
• Palliative care advocates need more and better evidence to present to member states and NGO partners
• This rapid advocacy response was facilitated by several factors: 1) Strong relationships with dementia advocacy organisations and other relevant groups, 2) Critical research and position statements, including by the European Association of Palliative Care, 3) An already existing expert global palliative care advocacy group, 3) Relationships between national advocacy and palliative care association leads and government ministries, 4) Relationships between international association leads and key missions in Geneva, 5) Participation by organisations in formal relations with WHO in Geneva

Outcome and next steps

The WHO Secretariat will present the next draft of the Global Plan in November for review at the Executive Board in January. Palliative care advocates will review it to ensure that palliative care has been included. We will then work with partners to ensure that the revised plan, including palliative care, is approved at the World Health Assembly, that delegations mention palliative care in their interventions on the floor, and that a clear plan exists, including dedicated funds, for its implementation.

If you are interested in engaging on this, or other palliative care advocacy issues, please don’t hesitate to contact us cmorris@thewhpca.org or kpettus@iahpc.com