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Picture the scene: a prematurely aged woman lies on a disheveled bed in her rudimentary home in rural Uganda. Diagnosed with HIV two months ago, she went late in her illness to her local hospital, deterred by the enduring stigma associated with the disease.
A home-based palliative care service gives her liquid oral morphine to ease her physical pain, elevating her spirits and calming 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 picture a pristine major hospital on Manhattan’s Upper East Side. A middle-aged woman diagnosed with pancreatic cancer 15 months ago, jaundiced and gaunt, lies dying in bed, surrounded by ventilation tubes, monitoring equipment and an interdisciplinary 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, 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 in times of crisis. 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 health care providers recognize the spiritual aspects of illness, and are equipped 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, psychological, social and spiritual domains.
In Africa palliative care is introduced at the point of diagnosis and focuses on pain relief and symptom management. At this stage of the illness spiritual needs may be less evident. 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.
In Africa spiritual care is usually provided informally, often by family and community members, and by the religious community to which patients belong. But for many, ‘religious’ is often mistakenly understood as synonymous with ‘spiritual,’ and as a result many distressing questions are not addressed.
Also, 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. Here, 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 go hand in hand with 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.
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