Palliative care is a fundamental right yet we are leaving millions behind
This partner perspective comes from the Civil Society Engagement Mechanism. We're delighted to introduce a set of stories collected by the CSEM to show perspectives from civil society actors and civil society organizations all over the world to mark the first UN UHC Day and to demonstrate civil society commitment to work towards achieving UHC.
CSEM and partners seek to promote representativeness and equity on the road to UHC. The views expressed, however, belong solely to each blog author.
By Beverley Sebastian, Executive Director
Island Hospice and Healthcare (the first hospice in Africa, established 1979)
Erica lives in Mutare, Zimbabwe. She tells us she started showing signs of illness in 2014 and was soon in unbearable pain. ”I tried everything within my means to get healed including traditional medicine. It did not work. In September 2016, I was diagnosed with cancer. I was shocked to hear my diagnosis. We sold the only cow we had to get funds for chemotherapy but it was not enough. The situation turned worse because morphine was hard to find. I had to endure great pain. I often had sleepless nights. I got paralysed and could hardly walk out of this room. My wish was to find time to enjoy the cool breeze outside my house and socialise with my friends as I used to do in the past.”
Erica’s journey is not uncommon. Many patients that find their way to Island Hospice & Healthcare for palliative care services repeat harrowing stories of pain, unnecessary hospital stays and out of pocket expenses which render households already struggling economically, vulnerable to catastrophic health expenditure.
Palliative care is an approach that improves the quality of life of patients and their families facing life threatening illnesses through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other problems, physical, psychosocial and spiritual. It is estimated that 61.5 million people experience health related suffering worldwide. Palliative care is beneficial to a broad range of people living with communicable and non-communicable disease from children to older persons as well as family members. A wide range of providers including public, private and the community provide palliative care and it requires a multi sectorial and multi professional approach.
Access to palliative care should be viewed as a fundamental right, but in Africa it’s been largely ignored as part of health care, and is almost impossible to access for key populations. Zimbabwe has one of the highest per capita needs for palliative care in the world (3,6 percent of the entire population) yet its capacity to deliver it is limited. Showcasing leadership, in 2018 the Zimbabwean Ministry of Health and Child Care established a National Palliative Care Integration Taskforce to develop a strategic framework focused on integrating palliative care into the entire health delivery system.
The Lancet Commission on Palliative Care and Pain Relief has suggested a comprehensive package of care to be included within Universal Health Care (UHC) packages which is cost affective and affordable. An essential package of palliative care should be included within UHC packages because it alleviates suffering, is cost effective and affordable and supports people with some of the highest health needs, and those vulnerable to catastrophic expenditure on health. Health and social care professions and community caregivers need to be trained and mentored, and the essential package should be publicly funded. Without this we will continue to leave millions behind.
Erica did receive palliative care from Island Hospice and Healthcare. In her own words,
”The team started to visit me regularly for support based on what I needed including pain management, physiotherapy and counselling for my family. The pain has gone low. Now I can spend peaceful nights as long as I am taking my medication. After two years of spending the whole day indoors I am finding time to bask in the sunshine. Just look at my face. It tells you how happy I am.”
Worldwide Hospice & Palliative Care Alliance. 2018. Palliative Care and UHC Fact Sheet. http://thewhpca.org/resources/item/palliative-care-and-universal-health-coverage-fact-sheet-june-2018