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How to care for the terminally ill
Dr Anne Merriman, the founder of Hospice Africa Uganda (right), interacts with some of the facility’s clients during its 30th-anniversary celebrations at their offices in Makindye, Kampala on September 19. Photo | Tonny Abet
What you need to know:
- Being diagnosed with a disease with a very low chance of survival can take a toll not only on the patients life but also on that of the caretakers. It is important to ensure that both patient and caretaker are supported during this time. One way is through palliative care.
In 1999, at the age of 60, Sedrasi Ndungu was diagnosed with colon cancer. Now, 83, health workers say Ndungu is one of the patients who has grappled with the disease for a very long time.
Ndungu’s daughter, Imelda Kiconco, 47, a resident of Entebbe in Wakiso District, has been essential in her mother’s battle with the disease by taking care of her and comforting her.
“She was diagnosed with cancer when she was around 60 years old –that is in 1999. She underwent the first surgery on the colon in the same year,” Kiconco said in an interview.
In 2003, Ndungu underwent another operation on the appendix and then another in 2015.
“In 2015, she got another major operation on the same spot for colon because it had developed another tumour. It was discovered that her left kidney had died,” Kiconco said.
She added: “Recently, we did other tests and [found that] the cancer cells have spread to other parts, especially to the organs. Both kidneys are affected and one is completely dead. The second one is also getting faulty, and this is affecting her function of urinating. She has become anaemic, she has swollen breasts and her appetite has reduced.”
Ndungu only takes diluted milk and rice.
“She is not getting chemotherapy because by the time they wanted to start treating her, she was anaemic and the radiotherapy was not recommended. We are in touch with doctors on what to do,” Kiconco said.
She says caring for her mother is taking a toll on her personal and work life. She has to balance taking care of her mother, family as well as attend to her job as a shift worker.
“Sometimes, I have to leave her with a housemaid or look around for a relative to keep around because I can’t stop working because I need that money. At night, we have issues with urinating, we have to exercise and sometimes they prescribe medicine and I don’t have money to buy so I have to borrow. I also have issues at the workplace because I am late most of the time,” she added.
Kiconco, a single parent, said she spends an average of Shs26,600 daily to care for her mother, who was diagnosed with “second-last” stage (stage three) colon cancer.
“I spend around 800,000 on her medication every month. I get morphine for free, but the other medicines I buy from pharmacies are for kidney, arthritis and other infections. She sleeps in my room so I can monitor her situation. For cost, I meet in taking care of visitors, which is within the plan for the normal running of my home. It is not like she is in that state where many people come to see her frequently,” she said.
She is, however, optimistic that her mother will get better with the care she is receiving. Ndungu has been receiving palliative (comfort) care at Hospice Africa Uganda in Makindye, Kampala. The facility supports patients with life-threatening and life-limiting illnesses such as cancer, heart disease and sickle cell.
Kiconco said the facility provides them with medicine and also conducts home visits to check on her mother’s condition.
“When the facility staff come to visit her, they give her spiritual and moral support. It makes her feel that someone cares out there. Sometimes we take her to their offices in Makindye and they do some minor [medical] checkup and when necessary they will tell us to go for a checkup from bigger hospitals,” she said.
“My mother is hopeful because it is God’s mercy that she has been able to survive for 24 years on morphine and other drugs from other hospitals. I think she has survived the longest, according to the hospice patients,” she added.
Roselight Katusabe, a palliative care nurse and the health services coordinator at Hospice Africa Uganda, said the facility handles patients with cancer, sickle cell disease, hypertensive stroke, and diabetic complications, among others.
“In our care, we look at the whole person –that is psychologically and socially, physically and spiritually,” Katusabe said.
She said they have different models of care to cater to the different needs of patients and their caretakers.
“As patients get sick and their disease progresses, they get weaker and weaker. This makes them unable to access the facility. So, we have home-based care which is our core care model,” Katusabe said.
“We also have outpatient care for patients who come to the hospital for their assessment, review and consultation. We also have outreaches to areas outside our catchment areas. This is done once a month and we get patients in those areas,” she added.
Pain management
Katusabe, who has been offering palliative care for 13 years, said they also do holistic pain assessment and management.
“Physical pain management is done using oral liquid morphine which is produced here, supported by the government. After production, it is picked up by the National Medical Stores (NMS) then Joint Medical Stores (JMS) where we make our orders, but we also don’t supply it ourselves,” she said.
“Some facilities don’t have morphine, maybe because of accountability issues and in other hospitals they run out, I don’t know the exact reason. Teams in some facilities sometimes don’t know how to assess and manage these patients’ pain. So, some hospitals [and relatives or the patients or friends] invite us to go and manage patients in their facilities,” she added.
However, Katusabe said when called to prescribe morphine to patients at other health facilities, they coordinate with the doctors at the facilities.
She said trained nurses and clinical officers do not prescribe morphine, according to the Health Ministry.
“But trained palliative care clinicians, by the law of Uganda, we are allowed to prescribe for the patients to control their pain. If it is a psychological or spiritual pain, we also manage it. We go with a spiritual leader,” Katusabe said.
“We just need the letter showing that the patient has a life-threatening illness, we are not limited to referrals [from doctors],” she added.
The National Drug Authority (Prescription of Certain Narcotic Analgesic Drugs) Regulations, 2004, states: “The objectives of these Regulations are— (a) to promote the correct and adequate use of certain Narcotic Analgesic Drugs in palliative care for the relief of severe pain and control of symptoms.... Subject to regulations 5, 6 and 7 a Clinical Officer or a Nurse with a certificate in specialist palliative care shall be authorised to prescribe and supply the narcotic analgesic Drugs specified in the Schedule.”
Imelda Kiconco, 47, a resident of Entebbe in Wakiso District, as been taking care of her mother who was diagnosed with cancer in 1999.
It added: “Narcotic analgesics which may be prescribed and supplied by clinical officers and nurses [include]. Morphine oral solution 1 mg/1mL (or 5 mg/5mL). Morphine oral solution 50mg/5mL. Morphine tablets SR 10 mg. Morphine tablets SR 30 mg. Morphine tablets SR 60 mg.”
Dr Anne Merriman, 88, the founder of Hospice Africa Uganda, said managing pain is one of the most important things for patients with life-threatening or life-limiting illnesses.
“Unless you can control pain, you cannot talk to them [the patients] about the other problems they have, particularly if they are coming towards the end of life.”
“But the family needs them to talk about their problem but if a patient is screaming in pain, there is no way they can talk. So, the first thing we have to do is to control the pain and then we can bring the other situations up,” she said.
Palliative care
Katusabe said palliative care starts at the time of diagnosis.
“In developed countries, palliative care starts at the time of end of life. But in the African setting, because of our limited economic status, the moment somebody tells a person they have cancer, the person immediately starts having psychological and spiritual distress,” she said.
“When the mind is not well cared for, this person might not go for medical attention, they may stay home. When the person meets delays in hospitals, they will abandon care, thinking someone is bewitching them and has made them fail to get care. So the mental health of the patient should be managed. You help them cope for them to start the process of fighting the disease and they get cancer treatment.
“Palliative care is not just for the poor, it is for everyone. It is not costly. Morphine would be the most expensive medicine but the government helps us in importing the powder and when we produce it, they buy it from us and they supply,” she added.
Dr Merriman said one of the big problems in Uganda is that doctors don’t realise what palliative care is.
“They often refer to us patients a day before they die. Unless we have met the patients and are able to take them through the problems associated with the disease and help them and their families cope, what can we do when they are already dying? That is not palliative care,” she said.
She added that they want to see people as soon as they are diagnosed with life-threatening illnesses such as cancer or heart disease.
End-of-life patient
Katusabe said patients at the end of life want to die in a familiar environment when they are at peace.
“If a patient from upcountry is admitted to hospital in Kampala and receives chemotherapy and radiation treatment but does improve, the patient will want to go back home, which is very okay,” she said.
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“They want to look at their animals, friends, their grandchildren, and a familiar environment in their home. Some patients have asked us, ‘Please, I want to go back to my home. Can you take care of me?’ and that is very important and we encourage it,” added.
She further said: “If the doctors feel that they have done all they can but the patient’s disease is progressing, then we request them to let the patient receive care at home.”
About the clinic
On September 19, the facility held celebrations to mark its 30th anniversary. During the festivities, many of the patients it works with and caregivers shared their experiences on how they have been dealing with the diseases.
According to the hospital, they have handled more than 35,000 patients so far.
Roselight Katusabe, a palliative care nurse and the health services coordinator at Hospice Africa Uganda. Photo | Tonny Abet
According to Dr Merriman, “Several of the patients have said to us that coming here (Hospice Africa Uganda offices) is not like going to hospital; that it is like coming home. That is what we want to be, to be part of them and they are also part of us.”
Palliative care
To-do list for caretakers of patients with life-threatening or terminal illness
1. Be available for them and monitor their daily situation
2. Listen and understand them
3. Look at their nutrition, and ensure they are feeding
4. Be empathetic
5. Respect their wishes
6. Obtain support from colleagues and friends
7. Be positive and pray
8. Consult doctors and palliative care nurse/specialist
To-do list for palliative care specialists of patients with life-threatening or terminal illness
1. Manage the pain of the patient
2. Handle the psychological, social and spiritual issues
3. Care for caretakers to ensure there is no burnout and caretaker fatigue
4. Talk to caretakers and address their psychological distress
5. Provide the support that you can
6. Do not abandon the patient
Where to get care
1. Hospice Africa Uganda in Makindye, Kampala
2. Mobile Hospice in Mbarara
3. Little Hospice in Hoima
4. Hospice Tororo
5. Kawempe Home Care
6. Kitovu Mobile
7. Joy Hospice Mbale
8. Peace Hospice Adjumani
9. Palliative Care Education & Research Consortium
10. Reach out to Palliative Care Association of Uganda (0800399100) for direction to specialist near you
Illnesses requiring palliative care
• Cancer
• Cardiovascular diseases (heart disease and stroke)
• Chronic respiratory diseases
• Aids
• Diabetes
• Kidney failure
• Chronic liver disease
• Parkinson’s disease
• Rheumatoid arthritis
• Neurological disease
• Dementia
• Congenital anomalies
• Drug-resistant tuberculosis.
•New cancer cases in 2020 were 34,008.
• Cancer deaths in 2020 were 22,992
Source: WHO
•Total number of Ugandans in need of palliative care is 500,000
•But only 15 percent of those need are accessing palliative care
Source: African Palliative Care Association.
