Since 1982 I have been active in the care, support and treatment of people living with HIV. Before the advent of anti-retroviral treatment for HIV in 1996, this largely entailed end-of-life hospice care, accompanying individuals as they prepared for the inevitable. Holistic comprehensive care entails assessment and treatment for all symptoms, including integrating an individual’s spiritual beliefs and concerns into their care.
From my arrival in Tanzania in 1996, I worked to integrate the palliative care paradigm into existing care and treatment programs for people with HIV at PASADA (Pastoral Activities and Services for People with AIDS Dar es Salaam Archdiocese) and from 2003 at Catholic AIDS Action (CAA) in Namibia.
Yet, for the overwhelming majority of Africans who currently live with progressive, life-limiting illnesses, access to culturally appropriate, holistic palliative care (including effective pain management with spiritual assessment and care) is simply not available. A survey of hospice and palliative care services on the continent found that 45% of African countries had no identified hospice or palliative care activity, and only 9% could be classified as having services approaching some measure of integration with mainstream health provision.
To date only three Africa countries have palliative care integrated into their national health policies and strategies (Uganda, South Africa and Tanzania), while Swaziland, Rwanda and Zambia have developed draft policies that are subject to approval by their health ministries. Only five countries across Africa have palliative care integrated in the curriculum of health professionals, of which only two (Uganda and South Africa) have recognized palliative care as an examinable subject.
In 2014 the World Health Assembly passed a landmark resolution: Strengthening of palliative care as a component of comprehensive care throughout the life course (WHA67.19, 24 May 2014). In their definition of Palliative Care, the assembly included, “Bearing in mind that palliative care is an approach that improves the quality of life patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.
Individuals and families facing life-threatening illnesses are often faced with a myriad of symptoms and pain. Yet, they are the least likely to advocate for quality services and often have no voice at the national level to advocate for palliative care.
From 2016 through 2017 I completed an 18-month internship and residency in spiritual care at the Mount Sinai Hospital in New York City. In July of 2018 I will sit for my oral board examinations in the USA with the National Association of Catholic Chaplains.
In Africa, and throughout the world, there must be curricula, training, systems and processes to integrate a person-centered spiritual care into private and public health systems. My part will be working with the Eastern Deanery AIDS Relief Program (EDARP), the Kenya Hospice and Palliative Care Association (KEHPCA), the African Palliative Care Association (APCA), the International Children’s Palliative Care Network (ICPCN) and the Catholic HIV and AIDS Network (CHAN) with Caritas Internationalis in curriculum development and training implementation.
My work at EDARP will involve teaching and training over 350 staff members and over 1,000 Community Health Workers to integrate spiritual assessment and care into their current work.
Quality, person-centered spiritual assessment and care works to improve the quality of life for individuals and families facing life-threatening illnesses, including HIV infection. Acknowledging and supporting and individual’s spiritual beliefs and practices can support treatment adherence and improve treatment outcomes.