Policy and Advocacy

2018; Volume 19, No 2, February

Policy and Advocacy

Dr. Katherine I. Pettus, PhD, IAHPC Advocacy Officer for Palliative Care Medicines, with her latest roundup of advocacy news.

The help of our members and partners is needed

Answering 7 questions on palliative care can influence global policy

We need your input to prepare answers to ‘Guiding Questions on Palliative Care’ in time for the Open Ended Working Group on Ageing (OEWGA) at the United Nations headquarters being held from 21-23 July 2018.

The IAHPC, and other non-governmental organizations with ECOSOC Status, have been invited to provide substantive inputs on the two focus areas of the upcoming 9th session of the OEWGA. The focus areas are: ‘Autonomy and Independence’ and ‘Long-Term and Palliative Care’ in the context of older persons.

UN member states that are discussing the issue of palliative care for older persons should do so with the advice of providers working on the ground. To ensure input from providers such as yourself, the IAHPC will be preparing a global synthesis report. We hope to gather as many answers as possible from our members, from as many countries and regions as possible, to the seven questions below.

Your help is needed by replying to these questions. Please send your input on or before Monday, 26 March 2018. As the Advocacy Officer, I will be representing IAHPC in the OEWGA and would like to also represent our members and partners who work in palliative care. My deadline to compile everyone’s answers is 9 April 2018.

In addition to this article, in mid-February we will be sending a letter through the IAHPC mailing list, inviting responses to the seven guiding questions.

This link to a reference list, which is mostly European reviews, provides a human rights framework on the topic of older persons’ right to long-term and palliative care. If you are aware of other resources that could help in the writing of the synthesis, please add them to the list and send them to me.

Please inform your national association and your regional association about this endeavor. It is important for individual providers and IAHPC members to coordinate with national and regional palliative care associations to reduce duplication and unnecessary work, and for national and regional associations to send this letter out to their members and, if apt, have it translated to the relevant languages.

The 7 Guiding Questions, and help finding answers

Here are the Guiding Questions, and our suggestions on how you might begin to answer them:

  1. In your country/region, how is palliative care defined in legal and policy frameworks?
    Search your Ministry of Health (MoH) website for a national policy or law that will contain a definition; ask contacts in the MoH, if you have them. Find out if your regional or national palliative care program has a definition.
  2. What are the specific needs and challenges facing older persons regarding end‐of‐life care?
    You probably know from your own practice; look at the literature. Ask colleagues who work in nursing homes. Check with your national or regional association of geriatricians.
  3. Are there studies, data, and evidence available?
    Similar to suggestions for question 2. Ask your national geriatric/gerontology association, if you have one.
  4. To what extent is palliative care available to all older persons on a non‐discriminatory basis?
    Ask nursing homes and geriatricians, or mine national and international websites on geriatrics.
  5. How is palliative care provided in relation to long‐term care as described above and other support services for older persons? Is palliative care provided in nursing homes?
    Apply the suggestions for question 4.
  6. Are there good practices available in terms of long‐term care and palliative care?
    Check with social service and justice ministries. Contact the ministry responsible for older persons in your country and set up an appointment to discuss this question with them. Visit some nursing homes.
  7. What are lessons learned from human rights perspectives? This means: Is there abuse and neglect? Are older persons over-medicated, or denied appropriate medical treatment?
    Check with your national human rights institute/organization (NHRI). Find more information here.

We will send out more information soon. Stay tuned!

Importance of palliative care cemented in guiding principles for future WHO interventions

Ioseg Abesadze, Jim Cleary, Tania Pastrana, and myself at the WHO meeting.

The IAHPC delegation at the 142nd Executive Board meeting included Dr. Tania Pastrana, President of the Latin American Association of Palliative Care (ALCP), Professor Ioseb Abesadze, Head of Palliative Care Programs at the Cancer Prevention Center in Tbilisi, Georgia, and myself. We were joined by Dr. Jim Cleary, Director of the Pain and Policy Studies Group who was representing our sister international organization, the Worldwide Hospice Palliative Care Alliance. IAHPC and WHPCA had been networking for months in advance with advocacy partners in regional and national palliative care associations in preparation for this Executive Board meeting.

We had requested partners to contact their governments and contacts in the health ministries to ask them to support the new paragraph (below) in the WHO Draft Program of Work (GPW 13), and to ensure that palliative care was included in their interventions on several other key agenda items.

See our Advocacy Page for more information and texts of statements. The good news is that Paragraph 38 survived with no changes or deletions, and that several member states, including Portugal, Panama, and Peru, spoke up on the importance of palliative care and improving access to controlled medicines. The representative for Jamaica devoted its entire intervention to the topic of lack of access to controlled medicines, and identified its studies of the beneficial medical effects of cannabis, a substance currently under strict international control, to be reviewed by the Expert Committee on Drug Dependence later this year.

38. There is limited availability of palliative care services in much of the world, which contributes to much avoidable suffering for millions of patients and their families. WHO will emphasize the need to create or strengthen health systems that include palliative care as an integral component of treatment within the continuum of care. The Organization will promote the adequate availability of internationally controlled essential medicines in palliative care, including for the management of pain, while preventing their diversion and abuse.

Many thanks to our partners in Panama, Peru, Portugal, and Jamaica for their great advocacy, and to those colleagues whose countries have yet to articulate their supportive positions. We look forward to another few months of intensive work to prepare for the World Health Assembly in May, and expect to field an even stronger international, multilingual delegation to support palliative care through the technical agenda, as well as the numerous side events.


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