“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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Palliative care home visits in Uganda with Joyce and Jane

I met Jane, who is caring for her husband Joseph, bedridden with advanced cancer, in a village on the outskirts of Kampala, when I went on home visits with Joyce, the Hospice Africa Uganda (HAU) nurse who was kind enough to let me accompany her on her rounds that Saturday morning. Jane's husband Jane  works as a kindergarten teacher when she can leave her husband and four children, which include a six month old baby. Baby

Jane supplements her meagre teaching income with a small roadside shop stocked with avocados, eggs, peppers, candy, snacks, and other items. I bought a child’s exercise book and ballpoint pen from her so I could make notes about our home visits that morning, and purchased three avocados she had just bought off a passing produce truck, to take back to Munyonyo, where I was staying with Dr. Anne Merriman, founder of Hospice Africa Uganda.Jane choosing avocadoes

Joyce had brought Jane a refill of oral morphine, the “gold standard of pain relief” according to the World Health Organisation, so she would have enough for the coming week to give Joseph.  A powerful medicine controlled under international law, morphine is unavailable in many countries because of its reputation for being “addictive,” and causing respiratory failure.  The morphine refills sit on the Oral morphine Kampalaone table in the house next to the flowers, in a place of honour appropriate to morphine’s power to relieve pain.

A very poor country, with an under-resourced health system, Uganda has become an example of best practice in developing countries for promoting palliative care and improving access to morphine.  Hospice Africa Uganda, under the leadership of Dr. Anne, a former Medical Missionary of Mary, has pioneered the use of reconstituted morphine powder, teaching the method to clinicians from all over Africa.

A Nairobi based pharmaceutical company called Ripple currently imports the powder  from Hungary, where ironically, oral morphine is not available for palliative care. Ripple is one of the few pharmaceutical companies that cares to jump through the regulatory hoops necessary to import and sell morphine, which because it is not under patent, and sales are uncertain, has a very low profit margin.  Ripple’s director, Dr. Premal Sanghani, declares himself a supporter of palliative care after his experience caring for his terminally ill mother in England.

Moreover, and this is key to why Jane’s husband had pain relief delivered to his door that morning: not only has the Ugandan government committed to subsidising morphine imports, so that the medicine is free to patients — it has authorised nurses such as Joyce, who have qualified after taking a specific training, to be nurse prescribers.  Uganda is the only country in the world that allows nurses to prescribe morphine. With a doctor patient ratio of 1/25,000, this sort of task shifting is key to expanding pain relief, although the nurse patient ratio also stands at an astounding  1/11,000.  As Dr. Sanghani said to me, “we need a cadre of Macmillan Nurses, like those in the UK, trained to go into peoples’ homes and provide palliative care.”  A dream worth realising for the tens of thousands of people who die in pain in Sub-Saharan Africa each year for want of palliative care.

Without the leadership, passion, and commitment of palliative care advocates on the ground, and their allies in government and the pharmaceutical industry, the politics and economics of importing, manufacturing, distributing, and prescribing morphine can be complex and daunting. Many physicians have never learned to use the stigmatised substance that Sir William Osler, a 19th century physician and one of the founders of Johns Hopkins Hospital, called “God’s own medicine.” Until doctors have skilled bedside training, and see the literally miraculous results of properly titrated dosing for themselves, they are afraid to prescribe it.  Once converted and appropriately trained, doctors and nurses propagate their new found skills with colleagues, supported by organisations such as the Palliative Care Association of Uganda http://pcauganda.org/, the African Palliative Care Association, http://www.africanpalliativecare.org/, Treat the Pain http://www.treatthepain.org/ and other multi-lateral initiatives.

Underlying the overly strict regulation of morphine, lack of clinician training, and the medicine’s demonised public image in many countries, are ideologically based fears of diversion, addiction, and abuse should morphine be readily available as needed.  I zeroed in on this concern in all my conversations with the big “players” on my recent trip to Uganda and Kenya: national drug regulators, physicians, pharmacists, and narcotics police, all of whom testified that it is an unfounded fear.  The evidence shows that good cooperation and joint training between narcotics control authorities and health professionals can keep supply channels open with minimal, if any, diversion of morphine.  Moreover, the reconstituted oral morphine that helps patients like Joseph stay pain free, does not get someone who is dependent on opiates “high,” like intravenous morphine.   What scientists now know about the brain simply doesn’t support the ideologically based fears that underly much of the global lack of access to morphine. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4008926/.

IMG_7719
Joyce, at the home of Juma, with his oral morphine.

After leaving Jane and Joseph, we visited Juma, a Muslim patient with advanced prostate cancer, also being cared for at home by his family, who needed a refill of oral morphine and a general symptom check.  Joyce asked if his appetite was good and when he said yes, exclaimed “So you could eat a whole goat!”  Everyone laughed, she showed him some exercises that would help the spasms in his legs, before getting back on the road.  Although there was a very modern looking Muslim hospital nearby, Joyce said that like most of the private hospitals in Uganda, they didn’t have morphine.  Only the public hospital, Mulago, has a growing palliative care service run by Dr. Mhoira Leng http://mhoiraleng.blogspot.com/.

I was so happy to go on home visits that Saturday morning with Nurse Joyce, and to meet Juma, Jane, Joseph, who despite their many trials, have access to the peace of pain relief, the possibility of a basic income through Jane’s small shop, and their faith.  Jane asked me to pray with them at the end of the visit, so we sat on the floor, joined hands, and said a Hail Mary, which had me all choked up and overflowing with gratitude for the privilege of doing this work. 

(All photos by the author and used with permission)