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)

Advertisements

Published by

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s