For many people in South Africa, the word “hospice” was once synonymous with AIDS. Now, that’s changing.
Hospice is still a place associated with HIV, cancer and death. But rising rates of non-communicable diseases (NCDs) may mean South Africa needs to rethink the meaning of hospice.
Diederik Lohman is a senior researcher working on palliative care issues for Human Rights Watch. He spoke to Health-e about what palliative care is, why it matters and how a proposed policy in South Africa could help alleviate pain for thousands of patients.
Question: What is palliative care?
Diederik Lohman: “Palliative care is improving the quality of life for people with life-threatening illnesses. One of the most common symptoms palliative care looks to treat is pain…but people with life-threatening illnesses also deal with a lot of psychological, and often spiritual, questions that they need answers for so palliative care tries to address those needs as well.”
“South Africa probably has one of the most advances palliative care systems on the continent. The country has an extensive network of hospice organisations that provide care to people with chronic and life-threatening illnesses, mostly in patients’ homes. The vast majority of people would prefer to die at home rather than in a hospital, and one of the challenges we face in palliative care is that we need to enable people to stay at home, and enable their families to provide proper care.”
Q: In South Africa, how has palliative care changed over the years?
“One of the key misconceptions we see even internationally is that palliative care is only about HIV because it was so important when HIV was untreatable. Palliative care is needed for any patient with a chronic or life threatening illness and we’re talking about patients with cancer, HIV, drug-resistant tuberculosis (TB), but also other illnesses late stage diabetes or lung disease. We’re talking about a large spectrum of patients.
“With treatment, HIV has become a chronic illness. We’re starting to see the same thing with certain forms of cancer that are becoming more treatable. These cancers may not go away altogether but with existing medications they can be kept in check over a period of time.
“A chronic, controlled HIV or cancer patient can still have significant number of symptoms that need treatment. Unfortunately, often the medical management of these illnesses do not include palliative care. What we need is the integration of palliative care.”
Q: What is the biggest challenge facing palliative care in South Africa?
“In South Africa, in order to decentralise palliative care, it’s critical for nurses to be able to prescribe opioid medication. It’s something that Uganda has pioneered in Africa. In Uganda, nurses and clinical officers [a health worker cadre created to task shift some responsibilities away from scarce doctors] with palliative care training are authorised to prescribe morphine.
“In South Africa, because there is a shortage of doctors to visit patients in their communities, home-based care teams are often led by nurses. So nurses and social workers will go and visit a patient to assess their pain needs.
“There is currently a draft policy under review in South Africa to allow trained nurses to prescribe opioids. If implemented, it would really make a huge difference.”Diederik Lohman, Human Rights Watch
“Nurses are able to assess a patient and identify that there is a need for change in the pain medication, but that nurse will not be able to change the dose and leave the medication with the patient.
“Under the current legislation, a doctor would have to examine a patient and prescribe any changes needed to their morphine dosage [in order to manage their pain]. This means delays for patients and unnecessary suffering.
“There is currently a (draft policy) under review in the South African Department of Health to allow trained nurses to prescribe opioids. If implemented, it would really make a huge difference. Nurses who are trained in palliative care are very capable of doing assessments and maybe even calling a doctor to consult on the phone to then change the dose.”
Q: What does South Africa’s rising rates of NCDs mean for palliative care?
“Palliative care will need to be a significant part of addressing NCDs in South Africa.
“There are four big diseases under the NCD banner– cancer, lung diseases, diabetes and heart disease. In the late stages of these illnesses, palliative care is needed for every one of them.
“Illnesses like diabetes and other NCDs beside cancer have been neglected traditionally. In terms of heart disease, we’ve seen research that shows that there are a whole range of symptoms, like pain and shortness of breath, that would need palliative care that are currently not being treated adequately. The needs of patients with, for instance heart disease, are not being researched not only in South Africa and Africa, but also in industrialised countries.
“That means that a lot of physicians who work with diabetes or heart disease are not trained in palliative care and don’t understand why it’s relevant. At the same time, a lot of palliative care remains focused on identifying cancer and HIV patients, rather than identifying patients with, for instance, renal failure or heart or lung disease.” – Health-e News Service
This article first appeared on September 19, 2013 in Health-e News