Where palliative care meets human rights

Categories: Policy.

The convening was organised by the Open Society Foundations’ Public Health Program and the Open Society Initiative for Eastern Africa (OSIEA).

The two day convening was also an important avenue to explore and pilot a toolkit on strategic engagement by human rights and palliative care organisations with the United Nations Human Rights System, to increase accountability for the realisation of the right to palliative care.

Strategic engagement by civil society with human rights mechanisms can be a highly influential and effective advocacy tool.

The convening sought to encourage mutual learning and exchange by human rights and palliative care organisations, and consideration of how they might work together in interaction with human rights mechanisms to increase accountability for the realisation of the right to palliative care.

During the two days, a number of issues were addressed. These included an overview of UN and African Human Rights Systems, models for engagement and upcoming opportunities, as well as effective follow up to ensure recommendations are implemented.

Topics of the sessions

The sessions explored the following topics:

  • how human rights are relevant to palliative care and access to pain relief
  • what is the right to the highest attainable standard of health
  • what are the UN and regional human rights systems relating to palliative care
  • the state of realisation of the right to palliative care in Kenya, Malawi and Uganda
  • how to effectively engage with international and regional human rights systems to drive continuous movement on outcomes for palliative care and pain relief; and 
  • how to ensure effective follow up.

The convening also provided a crucial forum for human rights and social justice organisations and experts to meet with palliative care organisations and practitioners to share and explore possibilities of forming alliances to jointly address palliative care as a human right. It included participants from Kenya, Uganda, Malawi, South Africa, Senegal and the USA.

Over ten presentations covering a wide range of topics took place. This included topics such as:

  • the state of palliative care development in Africa
  • connections between palliative care and human rights
  • right to health and State obligations
  • the African Regional Human Rights System
  • engaging with the UN human rights and African regional systems
  • the current state of palliative care in Kenya and Uganda
  • promoting human rights in palliative care settings in Uganda
  • reflections on strategic lessons
  • preparation and participation for engaging with the UN human rights system; and
  • reflections on past engagements from Kenya and Uganda.

Participants emphasised the advantages of collaboration for engaging Human Rights Systems. Salima Namusobya, Initiative for Social Economic Rights (ISER), said: “In writing an effective report, it is very good to work as a coalition. It increases credibility and finalising the report takes a shorter time because organisations have different specialties and are able to contribute information on different issues.

“For instance, people working on palliative care can easily bring information they have researched for a long time and the drafters will easily put the different pieces together.”

Key lessons and achievements

The convening resulted in valuable input and suggestions for the draft toolkit. It also helped participants devise statements and recommendations for submission to UN human rights mechanisms.

For instance, representatives from Uganda were able to initiate the drafting of a paper on palliative care to be presented for discussion during the forthcoming review of the country before the UN Committee on Economic, Social and Cultural Rights in Geneva between 10th -13th,  June, 2015.

Similarly, Kenyan delegates agreed to include palliative care in the Kenyan civil society joint submission to the UN Committee on Economic, Social and Cultural Rights in which the organisation HakiJamii is participating; a key recommendation of the joint statement included a statement pushing for the Kenyan Government to include palliative care in the Health Bill currently before the Parliamentary Committee on Health.

Other achievements included developing a matrix for human rights and palliative care organisations on engaging various accountability structures at national, regional and international level. Participants demonstrated the strong desire to draft a factsheet on palliative care as a human right for the African working group on economic, social and cultural rights.

Engaging with systems to promote human rights in palliative care

Speakers emphasised the importance of proper engagement with the relevant systems in advancing social and economic rights (which include the right to the highest attainable standard of health and hence palliative care), as well as civil and political rights (which include the right of freedom from torture and cruel, inhuman ad degrading treatment).

They reiterated the need to take advantage of the flexible nature of the African Charter on Human and Peoples’ Rights and push for palliative care through new instruments (such as the Draft Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Older Persons in Africa and Draft Protocol on the Rights of Persons with Disabilities in Africa) to be included as human rights.

They also stressed the need to engage local systems and draw effective plans to make sure that palliative care policies developed at country and regional level are effectively implemented. Equally, there was emphasis on allocation of adequate resources in the national budgets for palliative care. 

The convening resulted in significant agreement between palliative care and human rights organisations that they have a common cause, and that they have much to gain in working together, both at the national level, as well as in engagement with the regional and international human rights systems. 

Following the convening, human rights organisations recognised the urgency of pain relief and palliative care as a human rights issue and core element of the right to health. 

Palliative care organisations likewise recognised the value of collaborating with human rights organisations and seeking to integrate palliative care priorities and evidence in local, national, regional and international efforts to advance advocacy and accountability for the right to health.