What you need to know:
- A terminal diagnosis is not only shocking but also feels like the end of the world.
- Getting the right end-of-life palliative care is critical to ensuring your loved one has the best attention in a compassionate hospital setting.
Dr Stephen Watiti, a general practitioner at Mildmay Uganda, has been living positively for 18 years. He was suffering from some of the opportunistic infections that accompany HIV and needed something to stop the pain.
He had cryptococcal meningitis, tuberculosis, and was dying of cancer. He feared death. The pain of his illnesses was too much for him to handle alone. This is when he sought palliative care.
Palliative care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. It is a comprehensive symptom management programme which treats total pain.
This includes psychological, social and spiritual pain treatment. In addition to treatment by medical doctors, the patient can involve counsellors, social workers and priests to deal with the stigma and psychological pain that accompanies the disease afflicting them.
When Watiti began palliative care, he did so with the common misconception that it was purely end-of-life care. He thought he was going to die.
However, he was surprised that four months later, he came out with less pain and a fresh perspective of what palliative care really is.
“There is a stigma with palliative care that you are going to die. However, I did not die and 18 years later, I am still alive,” he says.
Diseases such as HIV are often accompanied by stigma and drastic lifestyle changes. Watiti says human beings are complex and need well-rounded ways of treatment to improve the quality of life and palliative care strives to do just that. “We need to look at human beings in a holistic way. People have needs. If you are hungry, I give you food, if you have no clothes, I give you clothes. But if you have clothes, food and nowhere to live, you cannot be happy,” he says.
HIV is still stigmatised, so the need for mental health care is common. According to research on mental health within HIV by RAND Corporation, people with HIV also suffer from depression. Within palliative care, counsellors and social workers strive to deal with the pain of depression and social stigmatisation.
Dr Ludoviko Zirimenya of Hospice Africa Uganda (HAU), says palliative care has the ability to prolong life by improving the quality of life. Palliative care is not a cure for serious illnesses, but it can help control some of the pain patients feel and make them feel well enough to go on living a more comfortable life. With HIV, Zirimenya says, palliative care has reached a point where HIV patients are able to return to a normal life.
HAU’s palliative care team is comprised of doctors, nurses and social workers. The team is nurse-led but doctor-supervised. Social workers go on home visits to patients who endure stigmatisation and social issues.
Although palliative care has been implemented within policies by MoH, there are still many people who need it and cannot access it. HAU does home visits in which nurses and social workers go to the homes of their patients instead of requiring them to come to an office. This gives patients easier access to palliative care.
However, money is still a problem. According to Health Market Innovations, only two per cent of Ugandans have health insurance. This leaves families paying out of pocket for things such as palliative care. Rehema Nakawuka, 6, is a regular patient visited by HAU. She has Kaposi sarcoma, which has left her with a large tumour on the right side of her head. In her case, the palliative care team varies between medical care and social care.
Rehema wants to go to school but is stigmatised by her community because of the swelling. Her mother struggles to afford the care she needs. The HAU palliative care team makes sure to visit her and keep up with her needs.
Dorcus Aciro, a social worker from HAU, says for every home visit, she tries as much as possible to make Rehema feel comfortable and loved. Because she connects with her patients on a personal level, for the few months she has been seeing Rehema, she noticed her fondness of rice. On the ride over to Rehema’s home, she told the driver to pull over at a supermarket and bought two sacks full of rice.
“The rice improves her quality of life because it not only makes her happy but provides her with the nutrition she needs to feel better,” Aciro says adding that she wishes she could do more for her patients.
“We have to show that we care. They want someone to talk to, someone to cry with, to laugh with, to be there for them. We are always there with them,” she says.
Ludoviko says many HIV patients are being discharged from palliative care because they are able to live normal lives. They no longer depend on intensive palliative care. He adds that even though they are discharged, HAU leaves their doors open just in case they need to come back.
Palliative care strives to help people live with reduced pain and improved quality of life. It is from diagnosis to death, but in cases such as Watiti’s and other HIV patients, people are able to prolong their lives and eventually distance themselves from intensive palliative care to only minimal.
Palliative care can be a long process, one that does not end until death. Watiti says everyone is going to die someday, so you might as well make it more comfortable. This leaves caregivers invested in their patients’ lives. Many palliative care professionals such as Aciro become emotionally attached to the well-being of their patients.
“I feel good because I am helping people. This is where my heart is,” she says.
In many cases, patients are treated in hospitals for illnesses. This can be distressing for patients as these hospitals are unfamiliar to them. Dr Emmanuel Luyirika of African Palliative Care Association says palliative care does home visits because it is where patients often feel most comfortable. He says it is important to build an infrastructure in the places where patients spend the most time.
In a survey conducted by HAU, more than 60 per cent of terminally ill patients in Uganda said they prefer to receive care for in their homes.
“The best place for someone to receive palliative care is within the context of their home, with family providing much of the other support,” says Dr Luyirika.
Family integration within palliative care is an important way to improve the quality of life of a patient. HAU has a programme in which patients’ families are educated about their loved one’s illness in order to relay care to them when palliative care professionals are not around. Palliative care provides coping strategies to not only the patient, but also the family.