IAHPC Board Member Mary Callaway and Dr. Kathleen Foley co-edited ‘Palliative Care for Low-Income Countries,’ recently published as a 180-page special online supplement of the Journal of Pain and Symptom Management.
Open access for one year:
When Mary Callaway and Dr. Kathleen Foley conceived of a thematic issue on ‘Palliative Care for Low-Income Countries,’ they decided that it had to be freely available and easily accessible for those interested in palliative care development. The Journal of Pain and Symptom Management agreed to publish with open access for a full year, ending in February 2019.
‘The supplement is meant: “To capture the status of palliative care in the countries presented. A snapshot in time, if you will, to document the progress that has been made and the important work that needs to continue”,’ says Callaway. ‘Although there remains a great deal of work to be done around the world, we have the knowledge and expertise to make real change possible.’
The issue draws together three components: individual reports on palliative care provision in 16 low-income countries; articles specific to elements of palliative care; and articles that reveal the important work being carried out by international and regional palliative care associations and organizations. The last two groups of articles cover much ground, including: treating pain, regulatory barriers, ‘growing leaders,’ human rights, the IAHPC, International Children’s Palliative Care Network, Worldwide Hospice Palliative Care Alliance, and European Association for Palliative Care.
To learn more about the supplement, and delve into her 14 years of experience as Director of the International Palliative Care Initiative in the Public Health Program of the Open Society Foundations, we asked Ms. Callaway a few questions:
Can you name a low-income country (or countries) that others can now look to as a model, and describe how success was achieved in its efforts to develop palliative care?
It is difficult to name one country as a model because many countries serve as models for different aspects of palliative care. Romania, for example, serves as a model for multiple areas: drug policy reform, costing of palliative care across settings, training and education of health care professionals. Uganda certainly serves as a model for how nurse prescribing can take place, Ukraine is an excellent model of raising public awareness and using human rights advocacy to implement drug policy reform and service development. Kenya is a model of how to work with the government. Each of the country reports highlighted in this issue is an example of palliative care progress in the developing world.
What was the impetus that drove you and Dr. Foley to create the supplement? What would you like to see happen now that it has been published?
Our aim was to capture the state of palliative care development in these countries at this time, describe progress that has been made, and discuss challenges that lie ahead. We chose to do an online, open access supplement so that it would be widely available at no cost, and so that individual articles could be translated and used to inform policy makers. Our goal was to help inform palliative care development going forward.
Did the supplement cause you to reassess, or remind you of, the progress that has been made since you joined the IPCI two decades ago? If so, in what way?
The supplement certainly reminded me of how far so many of the countries have come and the enormous commitment and amount of work that has been done by so many dedicated individuals and organizations. It reminded me that the greatest progress, from our experience, was made with the identification of a country ‘champion’ who would drive palliative care development. The development and ongoing support to these individuals made progress so much faster, and then served as a model for other countries to follow.
What were some lessons learned while editing the supplement?
Like so much of palliative care development, things take time. The supplement took much longer than we had hoped, but we think the wait was worth it.
What were some lessons learned during your time with IPCI?
Personally, I’ve learned that all progress is based on the development and nurturing of relationships. Supporting and encouraging one another is key.
Professionally, I learned many things, among them: palliative care requires personal passion and commitment; government will to enact change must exist; the public must understand that they need not suffer with unrelieved pain; pain relief is a human right; palliative care must be available for children; all health care professionals — doctors, nurses, social workers, psychologists, physical therapists, and public health officials — must have a basic understanding of palliative care and palliative care must be integrated into existing health systems, as well as the development of stand-alone services like hospices; changing drug policy to make pain relieving medications available and affordable is time intensive; governments must pay for palliative care and health care professionals must be paid to delivery palliative care; many more bilateral, multilateral, and individual donors must be engaged. And there just isn’t enough funding for palliative care. I could go on and on!
You have completed your mandate with the IPCI, and the special supplement has been published. What does the future hold for you now?
I retired as Director of IPCI, but the Open Society Foundations continues limited support for palliative care under the capable leadership of Duncan Wilson. OSF’s foundations in Eastern Europe, Central Asia, and East Africa continue to support palliative development in their countries. I hope to have more time to dedicate to the IAHPC and African Palliative Care Association boards, and to assist the OSF Eurasia Program with its palliative care work in the Eurasia region. After 30-plus years working in the field of palliative care, I can’t imagine my life doing anything else! Most of all, I miss my daily contact with all the passionate individuals and organizations who are making a difference.