Terminal illness: Community takes over pain management
Dec 10, 2006
EVERY after four hours, Edna Kyaligonza of Kinogozi, about 20km from Hoima town, gives her mother, Blandina Byahurwa, 75, measured amounts of oral morphine to ease her pain. Byahurwa, who has tongue cancer, has been on morphine since January.
By Timothy Makokha
EVERY after four hours, Edna Kyaligonza of Kinogozi, about 20km from Hoima town, gives her mother, Blandina Byahurwa, 75, measured amounts of oral morphine to ease her pain. Byahurwa, who has tongue cancer, has been on morphine since January.
Ruth Kimanywenda, 50, from Kisenyi, about 25km from Hoima town, helps herself. She knows when and how much of the drug to take. Kimanywenda has cervical cancer and has used oral morphine for seven years.
“The amount of pain determines the amount I take. I am only careful not to exceed a certain limit,†she says. With pain lessened, Kimanywenda can run a host of businesses, including a kiosk, embroidery and tending to her garden.
Beatrice Nabirye a palliative care nurse, says Kimanywenda has been identifying and recommending other patients for palliative treatment. She is a living testimony to how far community approach can go in delivering pain relief to patients with terminal illnesses in the poor rural folk.
The burden of cancer in Uganda is overwhelming and so is the number of people in pain.
According to Dr Anne Merriman, the founder and head of Hospice Uganda, each year, about 27,000 new cancer cases are reported in the country.
Dr Orla McArdle, of Mulago Cancer Institute, says 1.5% of the population have cancer. For every 100,000 women, about 50 have cervical cancer while 20 in 100,000 women have breast cancer at any given time.
The bite of HIV/AIDS has exacerbated the problem with 60% of the cancer patients at Hospice Uganda reporting HIV/AIDS-related complications. Of these, according to Merriman estimates, about 297,000 Ugandans are in great physical and emotional pain due to HIV/AIDS and cancer. But only about 9,000 patients receive palliative care since the concept was introduced 13 years ago. This leaves 97% of the patients without relief, making agonising yet avoidable pain a recipe for those on their deathbeds.
The government first availed affordable oral morphine for pain relief in 1993. However, due to the scarcity of trained medical personnel, the only people mandated then to prescribe the use of the pain killer, only a few patients in pain accessed the drug.
To solve the problem, the Government in May 2004, changed the statute to allow midwives and nurses trained in palliative care, to prescribe oral morphine, making Uganda the first country in the world to take such steps.
Today, the National Drug Authority recognises the use of morphine for pain relief. Under the current national drug policy, the Government has the responsibility to provide drugs for pain management to cancer patients.
The Government has also incorporated the need and administration of palliative care into the Ministry of Health Five-Year Strategic Plan. This has boosted the possibilities for its improvement and coverage in the country.
According to the Uganda National Household Survey 2004, Uganda’s health seeking behaviour is irredeemably low – only about 47% seek the services of a professional health worker. This leaves patients, who prefer to ail and probably die from their homes under the care of family members, to face death in great pain.
The adoption of community approach and direct involvement of non-medical persons in the administration of palliative care gives hope that those in most need will actually receive the much-needed relief.
Dr Merriman says for a price of half-a-loaf of bread, one could get a whole dose of morphine lasting 10 days. Through trained community volunteers initiated by Hospice Uganda and her two branches in Hoima and Mbarara, access to palliative care has been implemented in remote areas. Mobile Hospice Mbarara is currently treating 2,892 patients while Little Hospice Hoima has 840 enrolled patients.
Betty Kasigwa, the health service coordinator for Little Hospice Hoima, says they have trained 70 community volunteers including traditional healers, cultural leaders, the youth and caretakers spread across the district, in palliative treatment.
“These volunteers have proved invaluable in identifying patients who need palliative care in their respective regions. After undergoing training, the volunteers also sensitise their communities on the role of palliative care,†Kasigwa says.
“They also make home visits and report to us the progress of our patients and demonstrate to the caretakers how to handle their sick relatives,†she says.
Since 1993, palliative care in Uganda took on a life of its own. A total of 1,695 health professionals have been trained in palliative care including nurses, social workers, clinical officers, medical officers and traditional healers.
It is also a taught and examinable course unit in Makerere University Medical School and Mbarara University Science and Technology. Over 2,000 nurses from Mulago School of Nursing have also undergone training in palliative medicine.
EVERY after four hours, Edna Kyaligonza of Kinogozi, about 20km from Hoima town, gives her mother, Blandina Byahurwa, 75, measured amounts of oral morphine to ease her pain. Byahurwa, who has tongue cancer, has been on morphine since January.
Ruth Kimanywenda, 50, from Kisenyi, about 25km from Hoima town, helps herself. She knows when and how much of the drug to take. Kimanywenda has cervical cancer and has used oral morphine for seven years.
“The amount of pain determines the amount I take. I am only careful not to exceed a certain limit,†she says. With pain lessened, Kimanywenda can run a host of businesses, including a kiosk, embroidery and tending to her garden.
Beatrice Nabirye a palliative care nurse, says Kimanywenda has been identifying and recommending other patients for palliative treatment. She is a living testimony to how far community approach can go in delivering pain relief to patients with terminal illnesses in the poor rural folk.
The burden of cancer in Uganda is overwhelming and so is the number of people in pain.
According to Dr Anne Merriman, the founder and head of Hospice Uganda, each year, about 27,000 new cancer cases are reported in the country.
Dr Orla McArdle, of Mulago Cancer Institute, says 1.5% of the population have cancer. For every 100,000 women, about 50 have cervical cancer while 20 in 100,000 women have breast cancer at any given time.
The bite of HIV/AIDS has exacerbated the problem with 60% of the cancer patients at Hospice Uganda reporting HIV/AIDS-related complications. Of these, according to Merriman estimates, about 297,000 Ugandans are in great physical and emotional pain due to HIV/AIDS and cancer. But only about 9,000 patients receive palliative care since the concept was introduced 13 years ago. This leaves 97% of the patients without relief, making agonising yet avoidable pain a recipe for those on their deathbeds.
The government first availed affordable oral morphine for pain relief in 1993. However, due to the scarcity of trained medical personnel, the only people mandated then to prescribe the use of the pain killer, only a few patients in pain accessed the drug.
To solve the problem, the Government in May 2004, changed the statute to allow midwives and nurses trained in palliative care, to prescribe oral morphine, making Uganda the first country in the world to take such steps.
Today, the National Drug Authority recognises the use of morphine for pain relief. Under the current national drug policy, the Government has the responsibility to provide drugs for pain management to cancer patients.
The Government has also incorporated the need and administration of palliative care into the Ministry of Health Five-Year Strategic Plan. This has boosted the possibilities for its improvement and coverage in the country.
According to the Uganda National Household Survey 2004, Uganda’s health seeking behaviour is irredeemably low – only about 47% seek the services of a professional health worker. This leaves patients, who prefer to ail and probably die from their homes under the care of family members, to face death in great pain.
The adoption of community approach and direct involvement of non-medical persons in the administration of palliative care gives hope that those in most need will actually receive the much-needed relief.
Dr Merriman says for a price of half-a-loaf of bread, one could get a whole dose of morphine lasting 10 days. Through trained community volunteers initiated by Hospice Uganda and her two branches in Hoima and Mbarara, access to palliative care has been implemented in remote areas. Mobile Hospice Mbarara is currently treating 2,892 patients while Little Hospice Hoima has 840 enrolled patients.
Betty Kasigwa, the health service coordinator for Little Hospice Hoima, says they have trained 70 community volunteers including traditional healers, cultural leaders, the youth and caretakers spread across the district, in palliative treatment.
“These volunteers have proved invaluable in identifying patients who need palliative care in their respective regions. After undergoing training, the volunteers also sensitise their communities on the role of palliative care,†Kasigwa says.
“They also make home visits and report to us the progress of our patients and demonstrate to the caretakers how to handle their sick relatives,†she says.
Since 1993, palliative care in Uganda took on a life of its own. A total of 1,695 health professionals have been trained in palliative care including nurses, social workers, clinical officers, medical officers and traditional healers.
It is also a taught and examinable course unit in Makerere University Medical School and Mbarara University Science and Technology. Over 2,000 nurses from Mulago School of Nursing have also undergone training in palliative medicine.