The case for palliative care advocacy: Much ‘more’ to be done

Source: The case for palliative care advocacy: Much ‘more’ to be done

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“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.

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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.