The early days
“The word ‘hospice’ means hospitality. My own spirit of hospitality was nurtured in Ireland during my time with the Medical Missionaries of Mary and in University College Dublin (UCD), where I studied medicine. The approach to caring in UCD was embedded in our training and has stood by me since. It has been used by God to help others to have that same approach to care and to bring peace to those most in need.
“Later, in the 1970’s, I was working in geriatric medicine in Liverpool and realised that there was great suffering associated with the end of life in the elderly. At that time Merseyside had no palliative care but I had heard of the work of Cicely Saunders and Robert Twycross. I brought their methods into the care of my own patients. I began to offer training in palliative care to the other wards in the large hospital to which I was attached. In 1981, I invited Dame Cicely and a team including a general practitioner and a priest to give a day on palliative care at the hospital. This happened just after my mother died and I was contemplating returning to developing countries.
“In 1982 I went to Malaysia, where I joined the Universiti Sains Malaysia in Penang and taught in the Department of Community Health. My special interests were the elderly and end of life care. I moved to Singapore because they had a huge elderly population. This was due to twenty-five years of restrictive policies on families, encouraging them to have only two children. This had made their population pyramid stand on its head! I joined the Department of Community Medicine in the National University of Singapore.
“In 1984 we realised that patients who did not get better on cancer treatment were returning to their homes to die without any pain control or palliative support. With a group of nurses we began a volunteer team, visiting patients at home. With the pharmacists at National University Hospital, we developed a formula for oral morphine with morphine powder, dye to indicate strength, a preservative, and water. This was the formula that later was to enable palliative care to be affordable and doable in Africa.”
Beginnings in Africa
“In 1990 I left Singapore and went to Nairobi, Kenya as the first Medical Director of the new Nairobi Hospice. There I experienced the terrible plight of African people who developed cancer. I recognised that unrelieved suffering was endemic in Africa, where less than five per cent of people with cancer could reach oncology services. Most were too late for a cure. The pain they suffered up to death was akin to torture and affected not only the patient but the whole family. I wrote an article for the African edition of Contact, a Christian journal. I began to receive requests to help several countries to do what we were doing in Nairobi: bringing people to peace in their last days. The inspiration for Hospice Africa was born.”
Hospice Africa and beyond
“Hospice Africa was founded in Liverpool in 1992 with a mission to support palliative care for the whole of Africa. Following a four-country feasibility study, Hospice Africa Uganda began in 1993, as an affordable and accessible model. We started with enough money for three months’ salaries and no capital. Because we could not afford inpatient care, we visited patients either at home or in hospital, getting them back home as soon as their pain was relieved. Then we followed them up.
“Ten years later, research carried out by Doctor Ekie Kigule showed that patients in Uganda preferred to die at home. This was also their caregivers’ wish. They had their family around them. They lived and died close to their ancestors, who were buried in the ancestral home. WHO later carried out this research in five other African countries, with the same results. For this reason we have never developed an inpatient hospice. Our care takes place in homes, at day care, at outpatients on the hospice site, and at outreach clinics. It includes roadside clinics for those unable to travel. We are able to meet under the mango tree!”
Much more to be done
“We have worked closely with the Government of Uganda for twenty years. They were the first to allow importation of powdered morphine for reconstitution to the oral form. They now provide free morphine, when prescribed by a recognised prescriber, to all in need. In 2003, because doctors were scarce, the government changed a statute to allow nurses and clinical officers trained in palliative care to prescribe morphine.
“Coordinated by the Palliative Care Association of Uganda, 69 of 112 districts now have palliative care and almost all patients can reach their nearest service. We are still not reaching ten percent of those in need even though Uganda is considered the most advanced country in this field.
“Today, of fifty-six* countries in Africa, fifteen have affordable morphine. Fifteen more are starting with support care and moving towards having affordable oral morphine. Our team members have to be experts in advocacy from village level to the Ministry of Health.
“Education has always been an essential part of the service. Training has been provided to undergraduate and post graduate health workers, community volunteers, allied health professionals, traditional healers, and spiritual advisors. All medical students participate in home care and take part in mobile rounds. The long courses now include a bachelor’s degree in palliative care affiliated with Makerere University. The master’s degree will begin in 2014. The Institute at Hospice Africa is now a recognised tertiary education centre for Africa.”
True hospitality
“Hospice is not a building. It is a philosophy of care for those in need. Our patients are our guests, with choices in all affecting their lives until they die. Our role is to care for them with generosity and love, denoting hospitality, while bringing impeccable medical care in the place most suitable for them. This approach needs to be absorbed across the medical spheres today if our people are to be cared for and to die in peace with their families and their God.”
A life well-lived
In September 2013, Doctor Anne Merriman received a Lifetime Achievement Award in Johannesburg, South Africa for her work in Palliative Care in Africa. Hospice Africa Uganda won the Advocacy Award for work in Palliative Care in Uganda and across Africa. In October it was announced that President of Ireland Michael D. Higgins had awarded Anne the 2013 Presidential Distinguished Service Award for the Irish Abroad in the Charitable Works category.
*The number varies according to the criteria used.
***This article was originally published in the MMM newsletter.
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