African palliative care, according to Hospice Africa Uganda (HAU) founder Dr. Anne Merriman, is based on an ethos of hospitality, which manifests as a unique blend of indigenous and Benedictine spirituality. This ethos of hospitality resonates in the universal Ugandan greeting, “You are welcome”… welcome into my home, however humble, however grand. The Benedictine strain comes from Dr. Anne, who was a member of the Medical Missionaries of Mary (MMMs), a religious order that lives by the Rule of St. Benedict, which is rooted in welcoming all guests (at the monastery or convent) “as if they were Christ.”
Faith, although not pegged to a specific denomination or spirituality, is coded into the DNA of African palliative care. Hospice Africa begins the day with 5-10 minutes of prayers for students and staff alike: hymns are sung, drums drummed, and announcements made in community before the serious business of tending to the poorest of the poor with life limiting illness begins.
According to Dr. Anne, “in palliative care, we see our relationship to God through our relationship to people. Our prayer is our work: not something we necessarily have to do in a church.” In her orientation talk to new hires, she gives the mustard seed history of Hospice and defines “integrity” as “the virtue of basing action on principles,” the principles of Hospice being to always place the patient and family at the center of our actions in all domains. Quoting Bishop Dowling of South Africa, she says that hospice ethos “reflects how you ´[staff] relate to the patient, family, and community.”
Dr. Anne lives her ethos of hospitality, welcoming the thirty odd members of the incoming class to her house for a party that features speeches, introductions, dancing, great food, and a final candle lighting ceremony, which reminded me of the Easter Saturday vigil service. This universal mass begins with the lighting of the large paschal candle, symbolising the light of the resurrection in the darkness of the world. Indeed, Dr. Anne tells the students that “when we relieve pain, there is a resurrection for that person. In our work, there are many little resurrections before the big one!” Even the cake is decorated with a palliative care prayer, “ Welcome Class of 2017: May you grow in dedication to the suffering.”
Hospice Africa Uganda is the “Mother House” that has spawned palliative care services in more than thirty, mostly sub-Saharan, African countries, growing dedication to the suffering in all the students who come through the doors of the Institute. The current first year class contains students from several remote districts of Uganda, Malawi, Zimbabwe, Kenya, and Botswana. One student, John Bosco RN, came from Adjumani, the site of the largest refugee settlement for people fleeing the conflict in South Sudan, in order to learn to provide palliative care for his patients in the camp health center. Patients diagnosed with cancer and HIV/AIDS have no palliative care except what little is available to both refugees and locals at the overstretched local hospital. His training is supported thanks to the support of Global Partners in Care and the Palliative Care Association of Uganda.
Challenges of African Palliative Care Advocacy
From my perspective as a palliative care advocate in all the UN Organisations, including the Commission on Narcotic Drugs in Vienna, it is sad that the Ugandan diplomats seem unaware of the tremendous leadership their country is taking in this area of healthcare for the most vulnerable and marginalised populations. This leadership is an example of best practice towards implementation of the UNGASS2016 on the World Drug Problem, as well as achievement of several of the Sustainable Development Goals of Agenda 2030. The Ugandan government policies and laws that allow specially trained nurses to prescribe morphine, for instance, are unique in the developing world, and should be showcased.
Uganda could legitimately exercise its bragging rights about palliative care services, citing up to date studies that show the efficacy of nurse prescribing of morphine with no diversion to illicit channels. The international community needs Uganda to serve as beacons to other countries trying to improve access to controlled medicines for palliative care. In biblical terms, the Foreign Affairs ministries of Uganda and Kenya, to name only two of the countries leading in providing access to oral morphine for palliative care and pain relief, are hiding their lights under a bushel — the bushel of their diplomats’ lack of awareness.
Few if any, diplomats serving in Vienna, New York, and Geneva know what palliative care is, and what is required for progress towards this essential service under Universal Health Coverage, a policy priority for the World Health Organization. Once the national and regional palliative care associations make them more aware, the Ugandan missions can share the ethos of African palliative care throughout the UN system, explaining how the African palliative care ethos aligns with the Sustainable Development Goals. leaving no-one behind, and prioritising patients and families in the most vulnerable households. Through its communicative and clinical ethos, palliative care can help households avoid catastrophic out of pocket expenses and avoid the health poverty trap driven by weak public health systems staggering under the burdens of HIV/AIDs and AIDS related cancers.
Dr. Jacinto Amandua, a retired Uganda MoH staffer, cites the challenges of Ugandan palliative care advocacy as the constant rotation of ministers and government officials, few of whom are palliative care literate. He recommends an individual approach “like catechism,” and tells students to “go to where the people are — in the parliament, in the churches.“ Dr. Amandua’s famous and very quotable mission is to make “palliative care as available as air.”
Fortunately, the international normative framework stipulating palliative care and access to pain relief as a human right, is now in place. This international legal framework gives palliative care providers legal cover (a pallium) for their essential work even when national governments change. The challenge of African palliative care organisations is to get governments to pass funded policies to sustain the ethos of hospitality when patient loads increase, as they inevitably will, and charitable donations fluctuate. May the ethos of hospitality migrate to the highest levels of government!
