Children’s Palliative Care and the Feast of the Holy Innocents

December 28, 2017

Today is the Feast Day of the Holy Innocents, commemorating the legendary infanticide by King Herod’s soldiers, in the first century, of all male infants in Bethlehem. According to St. Matthew (2:13-18), Herod ordered the massacre to get rid of the newborn “King of the Jews,” a potential rival. Thanks the intelligence of an angel, the baby Jesus and his family, were spared (for the time being at least), but like so many children today, were forced to become refugees, and fled to Egypt. He was “rescued like a bird from the fowler’s snare,” (Psalm 124).

The other babes (the Innocents) and their parents, were the collateral damage of Herod’s paranoid jealousy and rage. The structural violence of hunger, disease, and war that kills 15.000 children every day, and millions every year, is the modern version of the Massacre of the Holy Innocents. The World Health Organisation statistics are chilling — “under-5 mortality among children born in the poorest households is on average twice that of children born in the wealthiest households. Eliminating this gap between mortality in the poorest and wealthiest households would have saved 2 million lives in 2016.”

Catherine was one of the Holy Innocents who survived the structural violence of lack of essential healthcare until she was eleven, but died at night at home, of renal failure when a tumour (which could have been surgically removed had adequate services been available) blocked her kidneys. Mercifully, Hospice Africa Uganda (HAU) provided her with palliative care and oral morphine to ease her pain and breathlessness. I met Catherine on a home visit in Kampala last time I stayed with Dr. Anne Merriman, founder of HAU, and a former Medical Missionary of Mary.

Dr. Anne, as she is known, is credited with introducing oral morphine to Africa and teaching palliative care providers, mainly registered nurses, to legally prescribe and use it.The HAU team brought Catherine’s family money for food and an old donated wheelchair because she could no longer walk and was confined to the couch. At least the wheelchair would allow her to sit up and go outside, get some fresh air, and see what was going on in the neighbourhood. After all, improving quality of life is what palliative care is all about! With no sidewalks or accessible streets, there was no chance of her being pushed far, though. In order to get to the house, we had to manoeuvre the chair down a very steep hill, which even the hospice car could not descend because it was so filled with deep ruts.

The global need for children’s palliative care is desperate: a recent Lancet Commission Report found that “Every year almost 2·5 million children die with severe health related suffering (SHS) […] in low-income countries at least 93% of child deaths associated with SHS are avoidable…The cost to cover morphine-equivalent pain treatment for all children younger than 15 years with SHS in low-income countries is $1 million per year. This is a pittance compared with the $100 billion a year the world’s governments spend on enforcing global prohibition of drug use.”

Until governments finally end, rather than continue to fund, the structural violence that generates such preventable suffering, and until they make children’s palliative care (along with prevention and treatment) freely available through Universal Health Coverage, every day is a holocaust of the Holy Innocents in slow motion. Today is just a good day to remember that, and recommit ourselves humbly to the work of alleviating the suffering, one patient and family at a time.

Dr. Anne Merriman with Catherine before her death.

PHOTO BY THE AUTHOR, AUGUST 2017
Dr. Anne Merriman with Catherine before her death.
Advertisements

African Palliative Care and the Ethos of Hospitality

African palliative care, according to Hospice Africa Uganda (HAU) founder Dr. Anne Merriman, is based on an ethos of hospitality, which manifests as a unique blend of indigenous and Benedictine spirituality. This ethos of hospitality resonates in the universal Ugandan greeting, “You are welcome”… welcome into my home, however humble, however grand. The Benedictine strain comes from Dr. Anne, who was a member of the Medical Missionaries of Mary (MMMs), a religious order that lives by the Rule of St. Benedict, which is rooted in welcoming all guests (at the monastery or convent) “as if they were Christ.”

Faith, although not pegged to a specific denomination or spirituality, is coded into the DNA of African palliative care. Hospice Africa begins the day with 5-10 minutes of prayers for students and staff alike: hymns are sung, drums drummed, and announcements made in community before the serious business of tending to the poorest of the poor with life limiting illness begins.

According to Dr. Anne, “in palliative care, we see our relationship to God through our relationship to people. Our prayer is our work: not something we necessarily have to do in a church.” In her orientation talk to new hires, she gives the mustard seed history of Hospice and defines “integrity” as “the virtue of basing action on principles,” the principles of Hospice being to always place the patient and family at the center of our actions in all domains. Quoting Bishop Dowling of South Africa, she says that hospice ethos “reflects how you ´[staff] relate to the patient, family, and community.”

Dr. Anne lives her ethos of hospitality, welcoming the thirty odd members of the incoming class to her house for a party that features speeches, introductions, dancing, great food, and a final candle lighting ceremony, which reminded me of the Easter Saturday vigil service. This universal mass begins with the lighting of the large paschal candle, symbolising the light of the resurrection in the darkness of the world. Indeed, Dr. Anne tells the students that “when we relieve pain, there is a resurrection for that person. In our work, there are many little resurrections before the big one!” Even the cake is decorated with a palliative care prayer, “ Welcome Class of 2017: May you grow in dedication to the suffering.”

Hospice Africa Uganda is the “Mother House” that has spawned palliative care services in more than thirty, mostly sub-Saharan, African countries, growing dedication to the suffering in all the students who come through the doors of the Institute. The current first year class contains students from several remote districts of Uganda, Malawi, Zimbabwe, Kenya, and Botswana. One student, John Bosco RN, came from Adjumani, the site of the largest refugee settlement for people fleeing the conflict in South Sudan, in order to learn to provide palliative care for his patients in the camp health center. Patients diagnosed with cancer and HIV/AIDS have no palliative care except what little is available to both refugees and locals at the overstretched local hospital. His training is supported thanks to the support of Global Partners in Care and the Palliative Care Association of Uganda.

Challenges of African Palliative Care Advocacy

From my perspective as a palliative care advocate in all the UN Organisations, including the Commission on Narcotic Drugs in Vienna, it is sad that the Ugandan diplomats seem unaware of the tremendous leadership their country is taking in this area of healthcare for the most vulnerable and marginalised populations. This leadership is an example of best practice towards implementation of the UNGASS2016 on the World Drug Problem, as well as achievement of several of the Sustainable Development Goals of Agenda 2030. The Ugandan government policies and laws that allow specially trained nurses to prescribe morphine, for instance, are unique in the developing world, and should be showcased.

Uganda could legitimately exercise its bragging rights about palliative care services, citing up to date studies that show the efficacy of nurse prescribing of morphine with no diversion to illicit channels. The international community needs Uganda to serve as beacons to other countries trying to improve access to controlled medicines for palliative care. In biblical terms, the Foreign Affairs ministries of Uganda and Kenya, to name only two of the countries leading in providing access to oral morphine for palliative care and pain relief, are hiding their lights under a bushel — the bushel of their diplomats’ lack of awareness.

Few if any, diplomats serving in Vienna, New York, and Geneva know what palliative care is, and what is required for progress towards this essential service under Universal Health Coverage, a policy priority for the World Health Organization. Once the national and regional palliative care associations make them more aware, the Ugandan missions can share the ethos of African palliative care throughout the UN system, explaining how the African palliative care ethos aligns with the Sustainable Development Goals. leaving no-one behind, and prioritising patients and families in the most vulnerable households. Through its communicative and clinical ethos, palliative care can help households avoid catastrophic out of pocket expenses and avoid the health poverty trap driven by weak public health systems staggering under the burdens of HIV/AIDs and AIDS related cancers.

Dr. Jacinto Amandua, a retired Uganda MoH staffer, cites the challenges of Ugandan palliative care advocacy as the constant rotation of ministers and government officials, few of whom are palliative care literate. He recommends an individual approach “like catechism,” and tells students to “go to where the people are — in the parliament, in the churches.“ Dr. Amandua’s famous and very quotable mission is to make “palliative care as available as air.”

Fortunately, the international normative framework stipulating palliative care and access to pain relief as a human right, is now in place. This international legal framework gives palliative care providers legal cover (a pallium) for their essential work even when national governments change. The challenge of African palliative care organisations is to get governments to pass funded policies to sustain the ethos of hospitality when patient loads increase, as they inevitably will, and charitable donations fluctuate. May the ethos of hospitality migrate to the highest levels of government!

The Advent of Palliative Care for Persons with Disabilities

The first Sunday of Advent (December 3, 2017), fell on the International Day of Persons with Disabilities. The Advent of palliative care for people with disabilities was heralded in Monday’s Gospel reading of the Roman centurion mentioning to Jesus that his “servant lies at home paralyzed, and suffering terribly.” Jesus healed the servant without (a) being asked, or (b) even seeing or touching him, a technique palliative care practitioners have yet to master. The story can still inspire us to meditate, however, on how we can improve the availability of palliative care for persons with disabilities.

We must begin by asking people with disabilities what services they need to face life limiting illnesses, and how they would like to access such care. We need to ask, what does “healing” look like for you? Perhaps it begins with being seen, heard, and made visible by the rest of the world that does not yet have a disability. The vast majority of people with disabilities are not “paralysed and suffering dreadfully,” like the centurion’s servant in the Gospel, but the vast majority are invisible.

Until my sister Ruth had a stroke and was confined to a wheelchair, I didn’t give a thought to how disability un-friendly most cities are (I pushed her around the Baltimore neighborhood) or how negligent and disorganised the US health system is toward ageing women with disabilities, even when they have
plenty of resources and insurance!

Speaking of how the Convention on the Rights of Persons with Disabilities can support the right to palliative care, Maria Soledad Cisternas Reyes, now UN Special Envoy on Accessibility and Disability, said at an event at the Social Forum in 2016,

The right to palliative care is not subject to progressive realisation. Palliative care becomes a fundamental pillar for the right to life and integrity of the people who need it, and is not limited only to the exercise of their right to health.

From another perspective, palliative care is also essential for the exercise other rights such as freedom of expression and opinion, access to information (Art. 21), as well as enjoyment of the family environment (Art. 23), and inclusion in the community (Art. 19). Like the civil rights listed above, these are subject to immediate realisation and respect, and palliative care is a key factor in their enjoyment

Along these lines, the focal point and coordinating mechanisms for implementation of the Convention must develop actions specific to the promotion of palliative care, which also must be monitored by the supervisory mechanisms at the national level (Art. 33). Today, we are at a crucial moment for implementation of the Sustainable Development Goals (SDGs) and the Agenda 2030, with the motto “leave no one behind”. Therefore, also in the instruments concerning social development we can find a strong foundation of support for the promotion, development and implementation of the palliative care at the national level.

Advent cannot come too soon for persons with disabilities who need palliative care. The Palliative Care Association of Uganda is doing a wonderful job working with the deaf community in that country,
IMG_4204
and the European Association for Palliative Care is working with community groups to provide palliative care for persons with intellectual disabilities.
This Advent is just the beginning. We must do more for those paralyzed with suffering if no one is to be left behind as the Sustainable Development Goals (and the Gospels) proclaim.

“Hidden Patients Hidden Lives” in Addis and Kampala, August 2015. Written for World Hospice and Palliative Care Day Oct. 10, 2015

One of the things I love about my job is that I am privileged to go out with homecare teams of physicians who know me in Uganda and Kerala. This last time, I was fortunate enough to be taken out by the Hospice Ethiopia [http://www.hospiceethiopia.com/] team to see two HIV positive patients younger than me, dying from cancer in their very humble homes.  [http://hospicecare.com/about-iahpc/publications/newsletter/2015/09/]  We saw two patients, both hidden away in the very poor areas of Addis, being cared for by a brother, sister, wife, or neighbour, in one case where no relatives are available.  The solidarity was beautiful to see, and it was so great that we could help, especially with pain relief.

I was curious about how Hospice Ethiopia was able to get these poorest of the poor patients, on their radar. Our Medical Officer, Dr. Ephrem, said they were referred by Black Lion Hospital, which is now in the “Pain Free Hospitals” project of the American Cancer Society [http://hospicecare.com/about-iahpc/publications/newsletter/2015/09/]. When there was “nothing more that they could do,” the oncologists sent them to Hospice Ethiopia.  Fortunately the Pain Free Hospitals project is teaching physicians about pain management and palliative care.

In both Kampala cases taken care of by Hospice Africa Uganda http://www.hospiceafrica.or.ug/, a volunteer at a local HIV support organisation, had made the referral. Mary was an HIV+ woman, lived alone in a one-room shack in what is euphemistically called an informal housing development,  A widow and an orphan, she was referred for pain control by a volunteer at the place she gets her ARV meds. Mary and JoyceSince Mary can barely walk, so it can’t be far.  A shout-out for volunteering, the heart of palliative care.  What Mary wanted as much as her oral morphine, was a bible, so we went out and bought one for her and brought it to her house. She was beyond thrilled at the gift, which we all wrote in!

The HIV medicine distribution folks, who are very well organised, have excellent coverage of the complex Kampala informal housing areas.  This particular one was faith based, and realised Mary needed the extra layer — palliare [L: cloak, to cover] palliative care provides, and referred her to HAU.

The other patient we visited, who I shall call ‘Charles’, lay on a palette overlooking the vast vacant lot where boys planed dusty, energetic football, because he did not wish to remain inside their small house. Since it was fresher outside, we had my first ever outdoor consult and then went inside so the doctor (who was visiting from Ethiopia to see how things are done in Kampala) and nurse could examine him. 

It was an extremely intimate and emotional visit.  An HIV+ man with advanced cancer, in his late 40’s perhaps, be broke down and cried at the generosity of his wife, who had taken on the role of family provider, as well as chief carer ,and young mother.  He also wept, he said later, when he could speak and the nurse could translate his native tongue into our English, because we were generous enough, and cared enough to visit him, to pay attention, and treat him in his home.  Our visit gave him unsolicited respect, dignity, pain relief, and expert care such as he had rarely received in his life.

IMG_9786

In the end we prayed together, holding hands, the leader, Nurse Joyce, speaking in Luganda, so that the man and woman being prayed for could understand her request that they be helped to face the coming days with serenity and trust  Joyce,trained at the Hospice Africa Uganda Institute, is one of the few nurses in the developing world able to prescribe morphine, she was able to leave a bottle of it for Charles’ pain, with the promise to visit the following week. http://www.lifebeforedeath.com/movie/short-films/15-nurseinthehouse.html

As we drove away, the housing project swallowed Charles’ significant suffering, into itself.  We had tried to convey that it was our privilege to visit him, thanking him for the opportunity to serve, knowing there were hundreds, perhaps thousands, like him that we could never reach, hidden in plain sight in the city and surrounding countryside.

Much more must be done to let the hidden patients and their carers know about palliative care and hospice services, however small and fledgling they are. People should not feel like throwaways, for whom “nothing more can be done” and whose dying is an eyesore to the fragile healthcare system, with its growing private sector. If they are not found by palliative care teams, they must hide their their shameful suffering and pain.  Palliative care offsets the disdain of a medical system designed to cure, with a willingness to remain with the patient and family to the end, and sometimes beyond.

Much more must be done to offer courses in palliative care to medical students, doctors, nurses, and pharmacists in the least developed countries.  I can’t tell you how many students approached me for bursaries at the Institute at HAU, thinking mistakenly that I held the keys to a scholarship fund.  Then again, tuition, compared to US medical school fees, is ridiculously low at HAU, and the need so enormous.  I wish did hold the keys to such a fund.  There is so much hunger to learn in Africa!

Palliative care organisations can find hidden patients if they have good community networks that can make referrals, and a trained volunteer corps whose basic expenses are met.  Successful networks require relationship building and partnership, something palliative care is good at.  I have faith in what Margaret Mead called “endo-symbiosis” a model of mutual support and thriving drawn from the plant world, which exemplifies the virtues of collaboration over competition to benefit its own survival. [http://www.onbeing.org/program/mary-catherine-bateson-composing-a-life/7968].  Palliative care needs to be “as available as air”  as one of my Ugandan colleagues, Dr. Jacinto Amandua, put it recently at the Palliative Care Association of Uganda conference [http://pcauganda.org/].  Then the hidden patients could all breathe it.  This requires advocacy for funding and training.  A palliative care peace corps, similar to the ‘barefoot doctors” in Nicaragua who worked for a pittance when I was there in the 70’s, could accomplish that! http://www.amazon.com/Barefoot-Doctors-Quiet-Revolution-Book-ebook/dp/B00FJQNICC

Patients should be able to die at home, with impeccably delivered palliative care, if that is what they want, which most have said they do. Happy to receive Bible The Special Rapporteur for Housing in Geneva, Leilani Farha, talked to me about how me might develop that as a right. May it be so.

“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.

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)