Dr. Katherine I. Pettus, PhD, IAHPC Advocacy Officer for Palliative Care Medicines, with her latest roundup of advocacy news.
In this edition, we are replacing my usual policy report with the statement of Help Age Cambodia delivered by Ms. Vanda Ou at the 9th session of the Open-Ended Working Group on Ageing at the United Nations. This July 2018 session focused on two topics: autonomy and independence of older persons, and long-term and palliative care. The Help Age Cambodia statement reveals the urgent need for palliative care services for older persons suffering from life-limiting illnesses in rural areas. Although I tried to find a palliative care physician to help with the case described in the statement, we were unable to locate any colleagues! This deficit shows the critical need to systematically integrate palliative care into primary health care, according to the Alma-Ata principles (discussed below) and the 2030 Agenda for Sustainable Development.
This is Vanda’s statement:
‘Older people have the right to care and support and palliative care wherever they live. Most older people in my community do not know what long-term care or palliative care are. These kinds of services seem to be absent or not available yet in our community and country.
‘In Cambodia, we have a traditional culture and family structure of provision of care for older people in the family. The family is the main caregiver and provider of both long-term care and palliative care. However, these days, these kinds of support only exist in some families, the larger ones, but not the smaller, nuclear families since more and more of the younger generation have migrated to work, particularly in the rural areas.
‘Palliative care services are also unavailable for older people in my community, even for those with cancer, and older people are living in unnecessary pain.
‘A 62-year-old widow who is a member of my Older People’s Association told me that she has had breast cancer for almost two years. She cannot afford to go to the capital city for treatment, and has no access to palliative care, including pain medication. Her children have migrated to Thailand for work and have left their two small children with her to care for.
‘She said, “I don’t have enough money to afford daily living expenses for me and my grandchildren. How can I go and pay the hospital? And I didn’t even know what kind of care service or treatment for my disease that I can access in my local health center or hospital. These days, I take traditional medicine. I need the state to provide free medical care for me.”
‘In another case, an 85-year-old man was severely injured in a motorbike accident. When his wife could not afford to pay for his treatment, the doctors made him leave the hospital. He remained unconscious at home with no palliative care until he passed away a few days later. His wife told me, “Our small retirement pensions are not enough to cover the cost of this treatment.”
‘Older people in my community are living without the care and support they may need, and are in unnecessary pain and suffering because they have no access to palliative care.
‘This is why, on behalf of older people in my community and myself as an older person, we need international and national legal frameworks to protect our rights and our freedoms. We wish to be treated equally and have access to the same opportunities we had when we were young. We strongly hope to have a UN convention on the rights of older people in the very near future.’
Vanda’s story shows the urgency of ensuring that primary health care (PHC) always includes palliative care and access to controlled medicines.
In September I will attend the European Forum for Primary Care Conference in Heraklion, Crete, the WHO Regional Committee meeting in Rome, and the Commission on Narcotic Drugs Intersessional Meeting on improving access to internationally controlled essential medicines. In October I head to Kazakhstan to participate in the World Health Organization conference marking the 40th anniversary of the signing of the Declaration of Alma-Ata, which reflected a consensus by 134 member states of the World Health Organization (WHO), the United Nations Children's Fund (UNICEF), and 67 international organizations on how to ensure ‘Health for All by the Year 2000.’ The Declaration included a set of 10 shared values and guiding principles for comprehensive primary health care. It goes without saying that Health for All was not achieved in 2000, and still has a long way to go in 2018.
Promulgated in 1978, the Declaration of Alma-Ata did not include the words ‘palliative care,’ mainly because palliative care was a relatively unknown and undeveloped global health approach, even in the third quarter of the 20th century. IAHPC and partners continue to confront the challenge of putting palliative care on the global health and primary care agendas in order to relieve the enormous preventable burden of serious health-related suffering.
The IAHPC delegation to the Global Conference on Primary Health Care in Astana includes myself, Dr. Sébastien Moine, and Dr. Gulinara Kunirova, President of the Kazakhstan Palliative Care Association. There will be at least one session on palliative care led by the Service Delivery and Safety Division of WHO (chaired by Dr. Marie Charlotte Bousseau) featuring Dr. Moine, Dr. Eric Krakauer, and Lancet Commission leader Felicia Knaul. The conference will promulgate a new Declaration on global health developed with all Member States and key stakeholders. IAHPC and partners participated in the online consultation for the Declaration, and collaborated with the Geneva Global Health Platform G2H2, to ensure that palliative care was included in the Consultation statement of the civil society workshop ‘40 Years of Alma-Ata: Translating “Health for All” into the Present and Future.’
The European Association for Primary CareReference Group statement and rationale can found here.
We will do our utmost to ensure it is included in the final Declaration of the 40th Jubilee Conference in October. Stay tuned for next month’s report from the Vienna Commission on Narcotic Drugs Intersessional, and the WHO Europe meeting in Rome.