Two continents, one soul

Picture the scene: a prematurely aged woman lies on a disheveled bed in her rudimentary home in rural Uganda. Diagnosed … Continued

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.

Richard Powell is deputy director for research at HealthCare Chaplaincy in New York. He previously was director of learning and research at the African Palliative Care Association in Kampala, Uganda.

Related content on On Faith:

* Being the bridge

* Having ‘the conversation’

*When illness brings spiritual suffering

* Add science to health-care chaplaincy without losing its art

Comments are closed.

Read More Articles

Sociologist: Religion Can Predict Sexual Behavior

“Religion and sex are tracking each other like never before,” says sociologist Mark Regnerus.

The Internet Is Not Killing Religion. So What Is?

Why is religion in decline in the modern world? And what can save it?

river dusk
Cleaner, Lighter, Closer

What’s a fella got to do to be baptized?

Magical Thinking and the Canonization of Two Popes

Why Pope Francis is canonizing two popes for all of the world wide web to see.

Pope Francis: Stop the Culture of Waste

What is the human cost of our tendency to throw away?

Screenshot 2014-04-23 11.40.54
Atheists Bad, Christians Good: A Review of “God’s Not Dead”

A smug Christian movie about smug atheists leads to an inevitable happy ending.

Ten Ways to Make Your Church Autism-Friendly

The author of the Church of England’s autism guidelines shares advice any church can follow.

Valle Header Art
My Life Depended on the Very Act of Writing

How I was saved by writing about God and cancer.

chapel door
“Sometimes You Find Something Quiet and Holy”: A New York Story

In a hidden, underground sanctuary, we were all together for a few minutes in this sweet and holy mystery.

Mary Magdalene, the Closest Friend of Jesus

She’s been ignored, dismissed, and misunderstood. But the story of Easter makes it clear that Mary was Jesus’ most faithful friend.

From Passover to Easter: Why I’m Grateful to be Jewish, Christian, and Alive

Passover with friends. Easter with family. It’s almost enough to make you believe in God.

Top 10 Reasons We’re Glad A Catholic Colbert Is Taking Over Letterman’s “Late Show”

How might we love Stephen Colbert as the “Late Show” host? Let us count the ways.

God’s Not Dead? Why the Good News Is Better than That

The resurrection of Jesus is not a matter of private faith — it’s a proclamation for the whole world.

The Three Most Surprising Things Jesus Said

Think you know Jesus? Some of his sayings may surprise you.

Jesus, Bunnies, and Colored Eggs: An Explanation of Holy Week and Easter

So, Easter is a one-day celebration of Jesus rising from the dead and turning into a bunny, right? Not exactly.