In an age of Western, high-tech medicine, doctors tend to see themselves purely as ‘fighting disease’. They are well trained in prolonging life, but may ignore the person experiencing the disease, pain and suffering, writes Daryl Ilbury
In a world riven by religious protectionism, political disunion and cultural variance, it’s hard to imagine a perception or opinion that is shared by all humans. There is one: an aversion to pain and the fear of death. Yet this is the calling for those providing palliative care, a currently specialised area of medicine that, it seems, requires profound debate — if not for ourselves, then for the sake of our parents.
Palliative care is something of a mystery, because its meaning is enwrapped in misinterpretation. For most lay people familiar with the term, it refers to care given to those diagnosed with a life-threatening disease, mainly cancer, and who are at the end of their life.
It is something provided by hospices and other organisations when doctors have declared there is nothing further they can do.
This interpretation is shared among some state healthcare departments, and even the various NGOs that offer palliative care. The language they’ve adopted invariably includes an association with death.
The UK-based National Council for Palliative Care refers to their role in helping those "approaching the end of life"; the Canadian national health department speaks of it as "addressing different aspects of end-of-life care"; a spokesperson for our own Department of Health has described palliative care as "offered by hospices and is provided for those who are terminally ill".
Dr Liz Gwyther, chairperson of the Hospice Palliative Care Association and a senior lecturer in palliative care at the University of Cape Town, agrees that because hospices are associated with the provision of palliative care, it has led to a certain element of confusion around term’s meaning.
In reality, she says, it is "applicable from the time of diagnosis of any life-threatening illness".
Pushed for clarification, Gwyther admits it’s a complex discipline, and refers to the World Health Organisation’s explanation: an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Note that there is no exclusive reference to terminal illness or end-of-life care; but there is to the treatment of pain, the relief of suffering and a holistic approach to other problems that could compound the patient’s condition.
This definition is more in line with that of Dr Balfour Mount, a Canadian physician and academic, and the man credited with coining the phrase "palliative care". He was concerned that doctors saw themselves in an age of Western technological healthcare as purely "fighting disease", and that while they are highly trained in investigating, diagnosing and prolonging life, the person experiencing that disease is largely ignored.
He says doctors tend consistently to miss the psychosocial, existential, financial and spiritual needs of patients, especially if they are facing death. This attitude saddens him, because "these are the neediest people in the healthcare system, and we say to them nothing more can be done".
Dr Selma Browde, former professor of radiation oncology at the University of the Witwatersrand, now a specialist in pain management, says treatment of pain and discomfort is a fundamental component of palliative care.
She says pain is largely misunderstood, with possibly dire consequences, and points to research into the pathophysiology of pain and distress that has demonstrated the effect of the emotions on pain perception.
"Those with an unquiet mind as a result of a variety of factors, such as anxiety, depression or anger, experience more pain than those who are calm," she says.
Palliative care should start at the moment of first contact with the patient with any illness, at any stage, and continue for the duration of the illness; if, and when, that illness becomes incurable, then palliative care should play the major or total role, she says.
"All patients deserve palliative care; whether the illness is acute or chronic, whether they are in trauma or intensive care units, there should be simultaneous use of palliative care and curative management," says Browde.
Gowther agrees that the suffering endured by those who are ill cannot be addressed with the use of drugs alone, and that it differs from person to person. "Suffering is identified by the person who is enduring that suffering."
They could be deeply worried about financial implications of their ill health, and who will care for their children while they are sick; or perhaps it’s more of an existential issue around possibly coming to the end of their life.
For most people, though, the perception remains that they only need to request palliative care if they are dying of cancer. However, the majority of patients receiving palliative care in SA have been diagnosed not with cancer but with HIV/Aids.
In accordance with the WHO guidelines, they meet the requirements for palliative care because, even though they may be on antiretrovirals and therefore are fighting the disease and may not be approaching the end of their life, they still have deep psychological, financial and spiritual issues contributing to their suffering.
Given the levels of HIV infection in SA, the discussion around palliative care takes a dramatic turn when it comes to who should provide it, who should regulate it and who should train healthcare providers.
For Browde, though, the answer is straightforward: "What is required is that all doctors and nurses are trained to use the ethos and skills of palliative care with every patient with whom they come into contact."
Unfortunately, says Gwyther, the care and compassion that inspires people to study medicine is often "taught out of them".
Browde wants to see the care back in medicine. In 2001, she started the hospital palliative care team at the Johannesburg Academic Hospital, integrating palliative care with curative medicine, and it is available for "any patient, with any illness".
"We are practising it," she says, "and working with support from many heads of departments to have it in the mainstream curriculum for medical students."
Joe Maila of the Department of Health, says provisions for palliative care were included in discussions around NHI, but the package of care is yet to be determined.
"It is work in progress, and consultations are continuing," Maila says.
Nonetheless, there are lights on the horizon. The language of palliative care is in the national strategic plan for the National Cancer Control Programme, HIV/Aids, and in the state’s approach to non-communicable diseases. The term is also in the National Patients Health Charter.
One of the biggest challenges facing the government, given the current state of healthcare provision, and the scope of the need for palliative care, is that a key to its provision remains in the hands of community health clinics and home-based care organisations.
This makes sense to Gwyther, who believes that the most appropriate place for palliative care is in a patient’s home, though not if that person has no access to electricity, running water or proper sanitation.
However it is provided, it is clear that palliative care needs to be regulated. Many NGOs and home-care based organisations claim to provide palliative care, but are not accredited. Proper regulation would protect not only the patient, but also the referring clinic or physician.
For those lucky enough to have private health insurance, provision for palliative care exists, but appears to be geared towards cancer or terminal illness.
Milton Streak, principal officer of Discovery Health, says members who have been diagnosed with cancer, and who are registered on the scheme’s disease management programme, also have access to palliative treatment — described as "radiotherapy, chemotherapy and pain management" — as part of their comprehensive oncology benefits.
Momentum Health’s director of marketing, Damian McHugh, says the scheme regards palliative care as "non-curative" — that which relieves pain and other symptoms — and therefore, in the case of members diagnosed with cancer, benefits are afforded for pain medication.
The true meaning of palliative care — as defined by those entrusted with its definition and provision — has yet to find its place in the broader healthcare sector.
Perhaps to help it gain a foothold, it should be realised on reflection, that the values and principles behind palliative care are not dissimilar to those of ubuntu. When Judge Colin Lamont referred to ubuntu in his judgment during Julius Malema’s recent hate speech trial, it was as if he was echoing Mount’s words: ubuntu "places a high premium on dignity, compassion, humaneness and respect for humanity of another".
Palliative care should start at first contact with a patient with any illness, at any stage, and continue for the duration of the illness
Those with an unquiet mind as a result of a variety of factors, such as anxiety, depression or anger, experience more pain than those who are calm
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