Picture the scene: a prematurely aged woman lays on a disheveled bed in her rudimentary home in rural Uganda. Diagnosed with HIV two months ago, she presented late to her local hospital, deterred by the enduring stigma associated with the disease.
Referred to a home-based palliative care service, liquid oral morphine has eased her physical pain, elevating her spirits and assuaging her psychological distress. She knows she is dying and is haunted by questions of her own mortality. She has not talked to a spiritual counselor and will not.
Now relocate yourself to a pristine major hospital on Manhattan’s Upper East Side. A middle-aged woman diagnosed with pancreatic cancer 15 months ago, jaundiced and gaunt, lays dying in bed, surrounded by ventilation tubes, monitoring equipment and a multi-disciplinary team that includes a professional chaplain who’s board certified to work in health care settings. The chaplain sits quietly beside her, listening to her as she articulates similar fears of her imminent death and seeks answers to questions over her life’s meaning.
Whether in Africa, the United States or elsewhere, living with incurable progressive disease has implications far beyond the physical. Illness can exert a profound effect on one’s spiritual well-being, resulting in times of crisis. Indeed, U.S. studies show that neglect of patients’ spiritual needs has been associated with reduced quality of life and satisfaction with care, and increased end-of-life health care costs.
It is critical that healthcare services recognize the spiritual aspects of illness, and are tailored to support people spiritually as well as physically. This is critical in palliative care, which aims to provide ‘total care’ for patients and their families: addressing pain manifested in the physical, psychosocial and spiritual domains.
Differences in palliative care development in the two continents are marked. But resources alone do not explain the differences in formal spiritual care provision. So what else does? After all, religious beliefs on the continent are ubiquitous. In 2009 the Pew Research Center found that between 68% (Botswana) and 98% (Senegal) of people interviewed consider religion to be very important in their lives. This compares to only 57% of adults in the US, where nearly 20% of Americans claim no religious identify (the ‘Nones’).
Palliative care in Africa is introduced at the point of diagnosis, with a focus on pain relief and symptom management. At this stage of the illness, spiritual needs may be less evident compared with the end of a patient’s life. But since many Africans tend to delay seeking medical help, and thus are beyond curing, their spiritual distress can be palpable. Yet formal spiritual interventions are rarely part of what is provided in palliative care on the continent, and needs remain unmet.
However, there are two issues here: first, for many ‘religion’ is often mistakenly understood as synonymous with ‘spiritual’, so that many distressing questions are not addressed; second, African faith communities can have neutral or negative influences upon patients, who sometimes refuse to disclose their HIV status for fear of discrimination and ostracism, and who can be made to feel their illness is the consequence of past sins, or deviations from strict religious moral codes.
It’s different in the U.S., where palliative care for people with serious or chronic illnesses – such as cancer, cardiac disease, or kidney failure – has traditionally been applied later, near the end of life, instead of at diagnosis when treatment intended to cure remains possible. Fortunately there is growing recognition among health care professionals that palliative care at this early stage should supplement curative efforts.
Currently, however, the spiritual needs of many US patients and their families still often go unmet because, while chaplains are a mandated presence in hospice services, that is not the case in non-hospice palliative care settings, due to historical policy and insurance reimbursement practices.
Spirituality, for too long neglected in palliative care, must be integrated fully into American and African health care systems, with spiritual advisors embraced as core members of the care team. Only then can services address what unites patients in both continents, irrespective of their material wellbeing: the soul.
Richard A. Powell, MA., MSc., is Deputy Director for Research at HealthCare Chaplaincy in New York. Previously he was Director of Learning and Research at the Uganda-based African Palliative Care Association.
Adapted from a version published in the Washington Post, December 10, 2012.