James M Wells, EMMS International's chief executive writes on the urgent need to develop palliative care for some of the world's poorest communities.
Palliative care has been one of the most neglected areas of healthcare and well-being since it came to the fore over fifty years ago, pioneered by people like Dame Cicely Saunders. Yet provision in most countries is limited, and the vast majority services exist in developed countries. In May 2014, the World Health Assembly passed a resolution requiring all nations to include palliative care within their national health plans. Furthermore, with the publication of the Sustainable Development Goals in 2015, much attention is also being given to Universal Health Coverage (UHC). No country can deliver effective UHC without palliative care, and a 2015 report on the quality of end of life care by The Economist was a welcome addition to the growing wave of evidence supporting the value of good palliative care.
As demand continues to increase, the challenges for palliative care providers across the world are to develop new and better ways of providing general palliative care, and to introduce palliative care earlier in a person’s illness. As my colleague, Dr Stephen Connor, of the Worldwide Hospice Palliative Care Alliance, rightly points out: "The biggest problem that persists is that our healthcare systems are designed to provide acute care when what we need is chronic care. That's still the case almost everywhere in the world."
Palliative care seeks to care for the whole person, alleviating pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured. An evaluation that EMMS International’s palliative care project with our partner in India, Emmanuel Hospital Association, confirms the huge benefits that palliative care can make to the well-being of people living with a terminal illness and their families. I use well-being deliberately, as the benefits go beyond health, and include things such as economic, social, psychological and spiritual well-being.
The Economist report confirms the challenges of improving access across the world, and that most of the best services remain concentrated in richer countries. EMMS International and many others are working hard to improve palliative care in poorer countries like Malawi, India and Nepal, as well as contributing to the global movement advocating for good palliative care for all.
Whilst the needs are great, we are making progress. We are excited about the EMMS International Method project in Malawi, which seeks to deliver a step change improvement to palliative care across large parts of the country, as well as a recently completed project that helped to lay the foundations for this .
We are helping to inspire and resource churches to engage in palliative care through Inspiring Hope, a palliative care handbook developed with our colleagues in Africa. In India, we have helped our partners to develop new innovative services, as well as supporting needs assessments for children and adults for the whole of the world's second largest nation.
We are encouraged by the many examples of colleagues working hard to raise the profile of palliative care, and the people that they serve. Three examples immediately come to mind.
Dr Ann Thyle made it her life’s work to bring care and compassion to those living without hope of a cure. Her heart for poor and marginalised people has driven her career priorities for over 25 years, eventually leading her to want to respond to the needs of people living with avoidable pain and unnecessary suffering, by establishing the Emmanuel Hospital Association’s Palliative Care programme, which was supported through your generous gifts. It’s not just been a personal calling, and she has inspired 12 hospitals to be part of this wonderful service.
Ann recently retired from this important work, but she leaves a legacy of many people that she has inspired, encouraged and equipped. They remain focused on delivering palliative care, ensuring that the work will continue to grow and reach more and more people.
We are also truly inspired by the story and courage of Gloria. We first met her over 2 years ago when she was 13 and had been diagnosed with cancer. She had already lost her mother to illness, and Gloria’s aunt had become her mother and nurse. She was finishing her second round of chemotherapy, but doctors knew they could not make her well again. She couldn’t walk without crutches, and the cancer in her bones made this incredibly painful.
With your help, Gloria was able to go home and receive the care she needed to live a pain-free life. More than two years later, she continues to live a full life, studying at school and living free from pain. It is because of the palliative care work that you support that Gloria and her aunt have the support they need and their fears about her cancer, and especially her pain, have largely been removed.
Finally, we are also responding to the palliative care needs of people post disaster, through our work in Nepal. When the dust settled after the devastating earthquakes of April 2015 the loss was great. Lives, homes and livelihoods were destroyed. For those who were badly injured by the earthquake, and those already suffering illness before the disaster, lives can never be fully rebuilt.
However, committed Christian healthcare workers are making sure that sick and frail people are not left behind while Nepal rebuilds, and that they get the care they need to live with peace and dignity. We are delighted to be supporting Nurse Manju to become the first palliative care nurse specialist in Nepal. She will spearhead efforts to bring healing and hope to those who suffered life limiting illness and injuries as a result of the earthquake. Manju recently told us that: "For me, serving God and serving the poor are one and the same. If I can relieve the suffering of others, then I do this with a glad heart."
We face a long path to delivering the World Health Assembly resolution but every step forward is also a step closer. It’s important that we respond to massively hidden, and often ignored, need. As my colleague, Liz Grant, the Director of the Global Health Academy at the University Edinburgh, puts it, ‘The quality signatures of a nation (are) how it deals with birth and death”. So I hope that you’ll join us and people like Dr Ann and Nurse Manju to transform the lives of Gloria and many, many others like her.