“Expert Patients” Moved by Love — Palliative care in a non-denominational ethos

“Expert Patients” Moved by Love

Palliative care in a non-denominational ethos

Katherine Irene Pettus, PhD

When I asked the origins of their slogan “moved by love,” the management team at Kawempe Home Care http://kawempehomecare.org/, led by Dr. Samuel Guma, described Kawempe’s first AIDS patients as abandoned and unloved.  Since the three founders of the service, all of whom were Christians of different denominations, had no resources with which to start the project in 2007, they decided, following the example of Mother Theresa, to be “moved by love.”  This meant “to do for our patients what we would want someone to do for us if we were that sick”.  Dr. Sam http://www.ipcrc.net/news/samuel-guma-uganda-leader/ is in his second year of a Masters Degree in Palliative Care at Cardiff University.

Providing free medical and care to disadvantaged people living with HIV/AIDS, TB and or cancer, the inter-denominational, inter-disciplinary Kawempe team, which now numbers thirty, starts every day with prayers. Team members reaffirm that they are “moved by love”, before moving on to their full day of tasks. When a team member goes off the beam, so to speak, and his or her actions start challenging the team ethos, her colleagues confront her with the question “are you moved by love?” — and within a short while, the ethos is restored and realigned. 

Kawempe, together with its US partner, Samaritan Hospice in New Jersey

won the 2015 Global Partnership Award. http://www.prnewswire.com/news-releases/us-and-ugandan-hospices-celebrated-for-outstanding-partnership-300073879.html

As the leadership team and I reflected together during my visit, I could not help but wonder whether palliative care as it is developing in the US and Europe can be sustained over the long term by teams that do not articulate the explicitly spiritual ethos exemplified in the “moved by love” slogan.  Can the unique palliative care values of care, courage, and honesty flourish in an explicitly atheist or legally secular environment? Kawempe’s three person leadership team, which includes an Anglican, Roman Catholic, and a Muslim, decided from the start that they did not want to affiliate with any religion.  “The diseases we are dealing with do not discriminate between religions,” Dr. Sam said. “It all comes down to being compassionate.  Can you be compassionate if you are not spiritual?” he asked rhetorically.  “A religious person is one who does acts of charity and care.  This is how you know people are religious.  Our religion is love.  This is what moves us.”

As they described their work, the team’s use of the term “expert patient” caught my attention. Expert patients were Kawempe’s original very sick, indigent, community members suffering from AIDS, who were abandoned and “unloved,” in Dr. Sam’s words. Once restored to health by the team, through a course of ARVs, impeccable clinical care, and adequate nutrition, expert patients are the key to the program’s sustainability.  Asked, “do you want to do for others what was done for you?” those who say yes, as most do, are trained as volunteers, and sent into the community to inspire and care for others in the same condition as they had once been, destitute of both hope and health. As “expert patients,” they go to those similarly destitute, those who are ready to give up, and share their stories. They say “see, we were just like you! Now look at us!”  They mentor the dejected ones as they are restored to health, to become expert patients themselves, community volunteers, in turn. “This qualifies them as “religious” Dr. Sam says.

Kawempe’s “moved by love” ethos translate into vigorous practical social and clinical programs to benefit the community. These include a daycare and home visitation program for HIV positive children and pregnant moms; a prevention/education drama and music program for teens; income generating  projects for community members such as a piggery, a mushroom farm, and a sewing workshop that generates beautiful purses, table mats, aprons, and laptop bags, and of course the beads for education project. http://www.thegreatgeneration.org/info/supplychainKHC/.  Because the demand for their beautiful tailoring products is much higher than supply, they need about four more heavy duty sewing machines to increase output and thereby allow more families to support themselves.  

IMG_9537Apron

Income from these various enterprises, most of which take place on the premises, supports school fees for the children of patients, always a high household budget line in Sub-Saharan Africa where all education has been privatised. Sales also support nutritional and program support for destitute families.  The Kawempe monitoring and evaluation team keep tabs on all the results of these programs, and identify gaps requiring more resources.

Lodged at a spacious rented duplex in an informal settlement or “slum”, Kawempe has a lab that runs tests for TB and HIV, and has set aside a special screening room for cervical cancer, one  of the biggest killers of women in Sub-Saharan Africa.  Resource restrictions have prevented them from purchasing the crucial cryotherapy “gun”, however, which would allow them to freeze the lesions they detect.  Kawempe has been seeking donations to buy land for a new center, as they are bursting at the seams with patients, staff, and activities.  Love has indeed moved this project to its current state of flourishing.  To enquire about donating sewing machines, or funds to purchase other sorely needed equipment, please contact info@kawempehomecare.org.

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kpettus

I am a political theorist, oblate in the Order of St.Benedict, and advocate for universal rational access to essential controlled medicines for pain and palliative care in the lower and middle income countries. I work a lot in Vienna at the Commission on Narcotic Drugs, and in Geneva at the World Health Organisation, and the Human Rights Council representing the International Association for Hospice and Palliative Care. Right now I am full time caregiver to my sister Ruth, who has brain cancer and lives in Baltimore. I am also writing a Catholic Caregiver's blog to document the experience.

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