In 1993, Hospice and palliative care was not known to the public, nor was it clearly understood by health care workers. To me it was a new concept, I had never heard of it during my practice, not even in the nursing training school. Yet it is a specialty that should be practised and taught by all health care workers to complete the art of caring.
How I Got to Know about This Specialist Care
As a young nurse, caring for patients on a ward that combined gynaecology and surgical cases, I met a doctor who was particular about pain, who I later learnt was Dr Anne Merriman.
Her interaction with a patient in pain was different. Whenever she came to a patient in severe pain, after a short conversation, she would give them a tablet, then continue the conversation. In her interview with patients, she gave them time and encouraged them to explain in detail the nature of pain they were experiencing in their local language.
With a patient’s consent, their carer was also involved during pain management session. This doctor either sat on a chair or a patients’ bed when talking; she asked particular questions about pain, examined and even asked them to touch exactly where they felt pain.
She documented in detail the way patients described pain, the possible cause of that pain and made diagnoses. Medications were prescribed according to nature of pain.
She educated the patient, a nurse, and the carer in how to take the medication in the home.
In the hospital she asked nurses to give it by the clock.
After several visits on my ward and seeing the outcome of her management I felt like changing my nursing approach and doing as she was doing.
The challenge was the system: taking time talking to one patient, especially as a nurse, I would be seen as a lazy nurse who wasted time on the ward. A good hard-working nurse was expected to do a procedure on a patient within two to five minutes except for heavy procedures like wound dressing or bed baths.
Consultants, senior doctors, and senior nursing officers had no idea about the approach to pain management. Besides there were a lot of myths about use of morphine for pain control and negative talks about Hospice and palliative care.
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This story was originally published in 30 Years – 30 Stories (c) 2023 Hospice Africa Uganda and is reproduced by kind permission of Hospice Africa Uganda.
My Impetus to Join Palliative Care
The negative talk about palliative care by the senior doctors and my colleagues did not stop my inner drive to join palliative care.
The more they talked negatively about it the more I felt the urge to care for terminally ill patients. I was propelled by the pain relief, peace, and comfort patients got after care.
I particularly remember a patient who was isolated from the main ward because of offensive vaginal discharge due to cancer of the cervix and constant groaning due to pain.
Her pain was controlled within ten minutes when she was introduced to pain control medication (morphine). The following day, there was no bad odour keeping away people from her room. That was my turning point: I realized how simple things like metronidazole, which was in plenty on the ward, could restore the patients’ dignity when used differently.
One time, when I suggested during a ward round that metronidazole tablets could be used on smelly wounds, the consultant rubbished my suggestion and added that he was the consultant to decide and introduce any treatment on the ward. I realized there was no room for nurses’ input in the care for patients but just to take order from the doctors. I felt I was in a wrong place.
Changing from Curative to Palliative Care Nursing
In April 1994, I told my colleagues that I was joining palliative care nursing.
They told me that was career suicide, and it was going to take me nowhere. They reminded me that Hospice and palliative care is about caring for the dying. I would soon get burnt out and leave nursing.
I had seen how the last days of a patient were peaceful when a patient and family had come to terms with dying and a patient was pain free. I had seen a patient say goodbye peacefully to relatives around her.
In palliative care I was empowered to identify patients with palliative care needs including pain, to assess and manage their symptoms. I was legally allowed to prescribe opioids for patients in pain after being accepted for a Nurse Diploma in Palliative Care from Hospice Africa Uganda.
Morphine has been the best medication recommended for severe pain by WHO for many years. That was a big motivation. I now had an answer to patients who would call me because of pain.
The scenario of avoiding patients in pain because I had nothing to offer was over.
I had crossed the burden of seeing patients in pain and doing nothing even when I knew what to do. I wanted more nurses to join palliative care nursing so that they could help patients who die in pain either in hospital or at home.
A nurse prescribing medications, including opioids for palliative care patients was not easily accepted by consultants and senior doctors. I remember prescriptions I made for patients being cancelled on different occasions. Slowly they realized that palliative care nurses were knowledgeable in pain management and legally allowed to prescribe opioids. With time, some of them started consulting and referring patients in pain to palliative care nurses.
Palliative Care Was Accepted as a Course in the Nursing Schools
The Ministry of Education and Sports launched an Advanced Diploma in Palliative Care Nursing in 2019 and the Mulago School of Nursing, the first government nursing school, enrolled 15 students on their first course.
Since then, it has continued to enrol nurses interested in palliative care nursing and are supported by a scholarship programme I started through a partnership with Centre for Hospice Care in Indiana USA and Palliative Care Association of Uganda, with the aim of empowering more nurses with palliative care knowledge to handle the increasing number of patients with non-communicable diseases.
I also wanted palliative care to spread to various districts of Uganda so that it could be available to all who need it. In 2023, the government of Uganda is sponsoring seven nurses to undertake Advanced Diploma in Palliative Care Nursing. It is now clear that palliative care is engraved in the education and health care system of Uganda.
Joining palliative care is no longer career suicide but career progression because there are diploma courses and degrees, including a Masters degree and a soon to come PhD.
Never fear to venture into the unknown, it could be an opportunity for the entire world.
First Palliative Care Specialist Nurse in Uganda