Five million people die of cancer or AIDS each year with untreated pain, most of them in low and middle-income countries. The Open Society Foundations’ International Palliative Care Initiative has been working since1995 to change this. The Initiative is funded at three million dollars a year to work globally to advance palliative care in regions where the Open Society, founded and chaired by George Soros, has supportive foundations, such as Central and Eastern Europe, Central Asia and Africa.
I had the pleasure of co-moderating a seminar on Global Perspectives on Palliative Care with my colleague at Memorial Sloan-Kettering Cancer Center (MSKCC), Dr. Paul Glare, Chief of Pain and Palliative Care, held at MSKCC.
Palliative Care Advances Around the World
We heard firsthand accounts from four international experts on efforts to advance palliative care globally. Professor Judith Hill, the chief executive officer of the Northern Ireland Hospice told us of her organization’s efforts in Belfast, Ireland, as well as internationally. With her colleague, Professor Max Watson of both Ulster University and the medical consultant to the Northern Ireland Hospice, they described palliative care educational efforts in India and Nepal including the development of an international diploma program and publication of a handbook on palliative care.
Dr. Joe Hartford, director of the Office of International Affairs of the U.S. National Cancer Institute (NCI) described the key elements of his strategy to make palliative care integral to cancer care in resource-limited countries, and he discussed NCI efforts in the Middle East and Ireland. The Middle East Cancer Consortium (MECC) was started in 1996 during one of President Clinton’s peace initiatives. The vision was to try to form partnerships and collaborative efforts on cancer care in the region. For example, Egypt has 10 times the population of Israel, but Israel has 10 times as many services in palliative care. By sharing experiences and educational efforts, the Consortium is working to improve cancer care and palliative care in eight countries.
Similarly, The All Ireland Cancer Consortium , started in 1999 directly out of George Mitchell’s negotiation of the Good Friday Peace Accords, began with cancer and cross border ambulance services as the areas of cooperation in health in these two regions of Ireland. This Consortium has also supported cross border efforts to improve palliative care.
The fourth speaker, Dr. Nessa Coyle, an advanced practice palliative care nurse at MSKCC, and co-author of the leading textbook in palliative care nursing, described her role as an educator in international programs to advance nurse training in palliative care in Central and Eastern Europe, Africa and Asia. As one of the international faculty of the End of Life Nursing Education Consortium (ELNEC) which is administered by the American Association of Colleges of Nursing in Washington, D.C. and the City of Hope in Los Angeles, this initiative has trained more than 14,000 American nurses as well as international nurses in more than 30 countries.
The good news is that palliative care initiatives are rapidly expanding around the world. As Dr. Hartford described the World Health Organization’s (WHO) guide on palliative care, it outlines a model approach for how countries can create palliative care cancer services in their countries. The WHO model to advance palliative care calls for a three-pronged approach: availability of essential medicines for palliative care; the education of health care professionals and the public; and policy change that integrates palliative care into national health strategies. The WHO has recognized that access to pain relief and palliative care are human rights issues.
Palliative Care and Human Rights
Using a human rights-based approach, there is an increase in advocacy efforts by several groups. Human Rights Watch has published a series of reports on the needless suffering of patients and families in countries that lack access to pain treatment and palliative care such as India, Kenya and Ukraine. These reports, coupled with new advocacy campaigns, call for improved access to pain relief and palliative care for dying patients. Stop Torture in Healthcare is an Open Society Foundation campaign to call attention to the under-treatment of pain and features the story of a young Ukrainian patient with terminal brain cancer whose treatment for pain is severely limited by Ukraine’s strict laws regulation the availability of pain-relieving medicines like morphine. A Treat the Pain campaign is supported by the International Union Against Cancer. Using short powerful videos of real patients to document the problem of lack access to pain relief and palliative care in resource-poor countries, these are very useful educational and advocacy narratives. In fact, Dr. Watson used these videos in his opening talk to describe the barriers to palliative care internationally.
Make it Political
Siddhartha Mukherjee in his Pulitzer Prize winning book, The Emperor of all Maladies, pointed out that the big change in cancer care in America came only when the politicians were mobilized to really make the difference. Is there lack of political will? You can say a dying person cannot vote, but their families sure can. Access to pain relief should be a human right for everyone.As we ended our seminar, Judith Hill reminded us of these lines from Clearances, a poem by Nobel Laureate Seamus Heaney, about his mother’s death:
In the last minutes he said more to her
almost than in their whole life together.“You’ll be in New Row on Monday night
And I’ll come up for you and you’ll be glad
When I walk in the door…Isn’t that right?”
His head was bent down to her propped-up head.
She could not hear but we were overjoyed.
He called her good and girl.
Then she was dead,
The searching for a pulse beat was abandoned
And we all knew one thing by being there.
The space we stood around had been emptied
Into us to keep, it penetrated
Clearances that suddenly stood open.
High cries were felled and a pure change happened.
Kathleen M. Foley, M.D., is one of the world’s leading authorities in cancer pain management and palliative care. She is an attending neurologist in the Pain & Palliative Care Service at Memorial Sloan-Kettering Cancer Center and holds the chair of the Society of Memorial Sloan-Kettering Cancer Center in Pain Research. Dr. Foley is professor of neurology, neuroscience, and clinical pharmacology at Weill Medical College of Cornell University. She was the founding director of Death In America, which funded initiatives to improve the care of the dying. Dr. Foley is the medical director of the international palliative care initiative of the public health program of the Open Society Institute, working to advance palliative care worldwide. She consults to the World Health Organization Cancer and Palliative Care Unit. Dr. Foley was elected to the Institute of Medicine of the National Academy of Sciences for her national and international efforts in the treatment of patients with cancer pain. She earned her medical degree at Cornell University Medical College and is a trustee of HealthCare Chaplaincy.
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