Caring for the terminally ill: A job many nurses shun
Oct 01, 2006
October 3, is world hospice and <br>palliative care day. The theme is ‘Access to Care’ for all. <br><b>Irene Nabusoba</b> explores the history of palliative care in Uganda, its <br>challenges and the way forward.
VAST as Mulago Hospital is, the four ‘Florence Nightingales’, as they are popularly known have combed it all. Always wearing smiles, the palliative care nurses carry a promise of high quality end of life care for the terminally ill.
The Nightingales are Josephine Kabahweza, Regina Nakanwagi, Freda Kolya and Harriet Tibakabikoba.
“Most nurses shun palliative care, but seeing our patients happy, even when they are living their last days, keeps us going,†says Kabahweza, the in-charge of the unit.
What is palliative care?
The World Health Organisation defines it as, “the active care of patients whose diseases are not responsive to curative treatment.†The approach aims at improving the quality of life of patients with life-threatening illnesses.
According to www.palliativecarewikipidea.com, “palliative care aims at improving quality of life by reducing pain, enabling the patient to resolve psychological and spiritual problems and supporting the family.â€
Kabahwezi says they care for patients with cancer, HIV/AIDS, severe fire and acid burns, sickle cells, neurological conditions, renal disease and heart failure.
Nakanwagi adds, “They manage the physical symptoms of patients receiving treatment and address depression in patients with advanced diseases.
We prescribe drugs for physical symptoms; show how drugs can be used safely while maintaining a patient’s faculties.
We also counsel our patients when they are depressed by the pain, loss of independence and worries about their family.â€
History of palliative care in Uganda
The assistant commissioner nursing in Mulago Hospital, Mariam Walusimbi, says
Dr Anne Marymann, a Briton introduced palliative care in Nsambya Hospital in 1993.
Marymann started with two nurses and a driver, operating from a small room until one patient, donated his house to them. That is what is known as Hospice Africa in Makindye.
“Sixty-five percent of patients in Hospice Africa are from Mulago Hospital. With their help, we set up a unit in Mulago Hospital,†Walusimbi says.
She went to the UK with the former director of Mulago Hospital, Dr Lawrence Kaggwa, to analyse ideal delivery of palliative care services.
“Upon our return, we endorsed four nurses who were trained by Hospice to start our unit. We have distributed them in four departments: obstetrics/gynaecology; ear, nose and throat, surgery/radiology and general medical conditions,†Walusimbi says.
They have handled 159 cases since their inception in May.
There are also palliative care teams upcountry: Mbale referral hospital, Vinika hospital in Fort portal, Lira hospital, Mobile Hospice Mbarara, Little Hospice Hoima, Kitovu Mobile Hospice Care and Nkozi hospital.
If you are outside a 20km radius, you go to the regional units,†Walusimbi says.
Challenges
“Our biggest challenge is sensitising patients, medical workers and the public. Once a patient is diagnosed with a terminal disease, the family members just give up and await death,†says Kyolya, one of the palliative care nurses.
The poor referral system in hospitals has also made the situation worse.
Doctors only refer patients, who are about to die.
Palliative care should be provided by an interdisciplinary team consisting of physicians, nurses, religious leaders, social workers, physiotherapists, occupational therapists, volunteers and the family.
“But here, we are the nurses, psychologists and councillors dealing with patients depressed knowing that they are facing death.
“Most of them are poor, so when we prescribe medicine, some expect us to provide the money, yet we cannot,†Kyolya says.
However, the greatest challenge is helping people to accept their destiny. “Patients tell you, ‘Musawo (doctor) I’m going to die.’ It breaks your heart. It’s like we are the bearers of bad news,†Kabahweza says.
Way forward
The Ministry of Health and the Palliative Care Association of Uganda has organised a campaign to coincide with the celebrations of the world hospice and palliative care day.
The campaign, ‘Access to Care for All’ will run from October 3-7.
“Palliative care is an essential health service we are committed to provide to all persons with life limiting illnesses.
“Everyone has a right to high quality end of life care, but more needs to be done to enable everyone access it,†says Mohamed Kezaala, the ministry’s permanent secretary.
The week will feature talk-shows, exhibitions, launch of the Mulago palliative care team and a fundraising dinner.
Ends
The Nightingales are Josephine Kabahweza, Regina Nakanwagi, Freda Kolya and Harriet Tibakabikoba.
“Most nurses shun palliative care, but seeing our patients happy, even when they are living their last days, keeps us going,†says Kabahweza, the in-charge of the unit.
What is palliative care?
The World Health Organisation defines it as, “the active care of patients whose diseases are not responsive to curative treatment.†The approach aims at improving the quality of life of patients with life-threatening illnesses.
According to www.palliativecarewikipidea.com, “palliative care aims at improving quality of life by reducing pain, enabling the patient to resolve psychological and spiritual problems and supporting the family.â€
Kabahwezi says they care for patients with cancer, HIV/AIDS, severe fire and acid burns, sickle cells, neurological conditions, renal disease and heart failure.
Nakanwagi adds, “They manage the physical symptoms of patients receiving treatment and address depression in patients with advanced diseases.
We prescribe drugs for physical symptoms; show how drugs can be used safely while maintaining a patient’s faculties.
We also counsel our patients when they are depressed by the pain, loss of independence and worries about their family.â€
History of palliative care in Uganda
The assistant commissioner nursing in Mulago Hospital, Mariam Walusimbi, says
Dr Anne Marymann, a Briton introduced palliative care in Nsambya Hospital in 1993.
Marymann started with two nurses and a driver, operating from a small room until one patient, donated his house to them. That is what is known as Hospice Africa in Makindye.
“Sixty-five percent of patients in Hospice Africa are from Mulago Hospital. With their help, we set up a unit in Mulago Hospital,†Walusimbi says.
She went to the UK with the former director of Mulago Hospital, Dr Lawrence Kaggwa, to analyse ideal delivery of palliative care services.
“Upon our return, we endorsed four nurses who were trained by Hospice to start our unit. We have distributed them in four departments: obstetrics/gynaecology; ear, nose and throat, surgery/radiology and general medical conditions,†Walusimbi says.
They have handled 159 cases since their inception in May.
There are also palliative care teams upcountry: Mbale referral hospital, Vinika hospital in Fort portal, Lira hospital, Mobile Hospice Mbarara, Little Hospice Hoima, Kitovu Mobile Hospice Care and Nkozi hospital.
If you are outside a 20km radius, you go to the regional units,†Walusimbi says.
Challenges
“Our biggest challenge is sensitising patients, medical workers and the public. Once a patient is diagnosed with a terminal disease, the family members just give up and await death,†says Kyolya, one of the palliative care nurses.
The poor referral system in hospitals has also made the situation worse.
Doctors only refer patients, who are about to die.
Palliative care should be provided by an interdisciplinary team consisting of physicians, nurses, religious leaders, social workers, physiotherapists, occupational therapists, volunteers and the family.
“But here, we are the nurses, psychologists and councillors dealing with patients depressed knowing that they are facing death.
“Most of them are poor, so when we prescribe medicine, some expect us to provide the money, yet we cannot,†Kyolya says.
However, the greatest challenge is helping people to accept their destiny. “Patients tell you, ‘Musawo (doctor) I’m going to die.’ It breaks your heart. It’s like we are the bearers of bad news,†Kabahweza says.
Way forward
The Ministry of Health and the Palliative Care Association of Uganda has organised a campaign to coincide with the celebrations of the world hospice and palliative care day.
The campaign, ‘Access to Care for All’ will run from October 3-7.
“Palliative care is an essential health service we are committed to provide to all persons with life limiting illnesses.
“Everyone has a right to high quality end of life care, but more needs to be done to enable everyone access it,†says Mohamed Kezaala, the ministry’s permanent secretary.
The week will feature talk-shows, exhibitions, launch of the Mulago palliative care team and a fundraising dinner.
Ends