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The parlous state of palliative care in the developing world
World Report
The parlous state of palliative care in the developing world Palliative care is almost unheard of in the developing world, condemning millions to agonising deaths each year. Priya Shetty investigates why the need for good end-of-life care is still ignored. In a developing country, patients who are diagnosed with terminal cancer or HIV must confront their mortality alone, and in pain. Pallative care, especially pain relief, is virtually nonexistent in poorer nations. The need for improved palliative care in developing countries is great. Of 58 million people who die every year, 45 million die in developing countries. An estimated 60% (27 million) of these people in poor nations would benefit from palliative care, and this number is growing as chronic diseases such as cancer rise rapidly. Yet a combination of highly restrictive policies on opioid prescription and a lack of awareness within the medical profession conspire to deprive patients of palliative care. Human rights advocates argue that this neglect is a breach of human rights that is tantamount to torture. On the face of it, improving palliative care should be straightforward. Unlike with most global health problems, it would not require large sums of money or a restructuring of healthcare systems. And although palliative care in the developing world is poor in general, there are success stories in parts of India and Africa. Health-care experts say that integrating palliative care into the modern medical culture of trying to cure disease at all costs will require a reappraisal of the way medicine is practised. Too often, doctors avoid honest end-of-life conversations with their patients, says Ranjana Srivastava, an oncologist at Southern Health in Melbourne, VIC, Australia, who has a special interest in palliative care. Much of this can be traced to the way medicine is still taught, she says. In most developed countries, medical curricula pay a lot of lip service to the importance of doctorpatient communication, Srivastava www.thelancet.com Vol 376 October 30, 2010
says, yet this aspect of health care is considered a mere adjunct to medical training rather than a core concept. “The prevailing paradigm is that death equates to failure. As long as you have that concept of death, it’s always going to be difficult to talk about how to end life well”, says Srivastava.
“Pain relief is such a core human right, that not providing palliative care is in someway a worse state of affairs than not doing...drug trials for cancer.” Diederik Lohman, a senior researcher at Human Rights Watch, who coordinated a 2009 report on palliative care in India, agrees with Srivastava. For a disease like HIV/AIDS, for which advocates have fought vociferously for access to treatment in poor nations, “palliative care can be seen as giving up”. The sensitivity and skill with which a doctor broaches end-oflife decisions is as vital as any other medical procedure, says Susan Block, a palliative care specialist at DanaFarber Cancer Institute in Boston, MA, USA. Yet too often, she says, inexperienced doctors are left to fumble through these conversations with little guidance. Inevitably, the attitude that death must be fought at all costs means that doctors sometimes prescribe treatment that they do not believe has much chance of success. Srivastava thinks “this happens more commonly than we would like to believe. Doctors are taught to nourish hope, which nowadays seems to be only about prolonging life.” But when, as increasingly happens, doctors offer patients a selection of treatments and ask them to pick one, they might be putting an
excessive burden on the patient to be responsible for their own care. This model grew out of a valid movement towards patient autonomy and choice, says Block, but has now become the equivalent of “medical abandonment”. “What patients are expert in is their own values and what they are willing to tolerate, but they don’t know the best [medical] route to get there”, she says. For many terminally ill patients, or those for whom all treatment options have been exhausted, pain relief is paramount. But strong painkillers such as morphine are unavailable in more than 150 countries around the world, despite being on WHO’s list of essential drugs. This lack of availability is not because morphine is costly or difficult to get hold of. What is to blame is the so-called war on drugs, says Lohman. So concerned are developing nations such as Columbia, Egypt, and India about the potential for addiction, or the illicit use of morphine, that they make it almost impossible for doctors to give morphine to patients. Pharmacies must jump through so many regulatory hoops that they often do not bother to stock morphine. The result is that in many countries the strongest painkiller that patients dying of cancer or AIDS have access to is paracetamol or aspirin. In 2008, for instance, India used an amount of morphine that was enough to treat only about 40 000 (4%) of the estimated 1 million patients with cancer who needed pain relief. Although WHO and human rights groups are pushing for changes in laws on opioid use, developing countries do not seem inclined to change legislation anytime soon. Yet while developing countries like 1453
World Report
Reuters
The printed journal includes an image merely for illustration
A patient with cancer rests in a hospital in eastern India
Brazil and India are eager to progress in science and technology, they must balance their priorities, says Block. “Pain relief is such a core human right, that not providing palliative care is in some way a worse state of affairs than not doing phase 1 drug trials for cancer.” In developing countries, much of the progress in palliative care has largely been driven by the non-governmental sector. While much of India’s billionstrong population has little access to palliative care, Kerala in southern India has been a remarkable success story. This state alone has two-thirds of the country’s 300 palliative care centres. This has resulted from an extraordinary collaboration between the state, nongovernmental organisations (NGOs), health-care professionals, and volunteers, says Lohman. In 1993, the Pain and Palliative Care Society in Calicut, Kerala, used a small government grant to train healthcare workers and volunteers to set up community palliative care centres. Kerala was one of the first states to change drug regulations to make morphine more easily available, and in 2008 it also became the first Indian state to adopt a comprehensive policy for palliative care. M R Rajagopal, at the Trivandrum Institute of Palliative Sciences, who pioneered palliative care in India, says that Kerala’s success owes much to 1454
the state’s 100% literacy rate (way above the rest of India), which means that the palliative care network can communicate easily with the population through newspapers and posters. To help improve palliative care in the rest of India too, Rajagopal’s Trivandrum institute holds courses for trainee nurses and doctors. The learning is highly interactive, and the students spend much of their time in clinics and hospitals or on home visits. These interactive sessions are crucial, because Indian cultural norms mean that palliative care consultations are even more complex than usual, says V Nirmala, a palliative care physician who works with Rajagopal. Often, she says, families shield patients from knowing the severity of their illness or how long they have to live. This puts Nirmala and her colleagues in the difficult position of negotiating with families to try and convince them that the patient must know their own diagnosis if a palliative care strategy is to be effective. Africa too has had some success in improving palliative care. In 1993, Hospice Africa Uganda was set up in Kampala to provide home-based care, mainly to patients with HIV/AIDS or cancer. The Ugandan Government’s progressive attitude towards pain relief has helped enormously. In 2004, for instance, it changed its laws to allow nurses and palliative care specialists to prescribe morphine. These experiences show that palliative care is possible in even the most resource-poor settings, and offer a model for other developing countries to follow. In 2008, Vicky Lavy, at the Helen and Douglas House Hospice, Oxford, and Charlie Bond, a consultant in palliative medicine at Severn Hospice, Shrewsbury, both in the UK, consulted extensively with doctors in subSaharan Africa and India to produce a palliative care toolkit aimed at developing countries. The toolkit was partly designed to offer guidance for
how palliative care measures could help even in settings where pain relief is virtually non-existent. More guidance is on the way. Susan Block and Atul Gawande, an endocrine surgeon at Brigham and Women’s Hospital, Boston, MA, USA, who wrote an essay in the New Yorker in August about his own struggle to conduct end-of-life discussions, are about to launch a checklist to guide these discussions between physicians and patients. “We think that like providing safe surgery, there are procedures to be followed that increase the chances of a better outcome”, says Block. Improved guidance for medical professionals could help overcome a major challenge in improving palliative care—concern over when doctors and nurses might find time in today’s increasingly hurried health-care systems to have adequate end-of-life discussions. Srivastava acknowledges that time is a resource that few doctors have, but says that at the very least, they could better structure the consultations they do have with patients. “It’s much easier for a physician to talk about treatment, however futile or however little benefit it might give, because that’s what they’ve been taught all their career”, says Srivastava. Yet focusing the conversation on last-chance treatments without asking what the patient’s own priorities are wastes valuable time, she says. Block agrees. During her time as a medical educator, she has noted “a tremendous amount of ineffectual beating about the bush, and euphemistic non-talking about the core issues in these conversations”, she says. Block thinks that health-care professionals actually waste more time by avoiding these conversations. “Patients go to the intensive care unit more, their goals of care are muddled, and there is much more family distress that often takes long meetings to sort through.”
Priya Shetty www.thelancet.com Vol 376 October 30, 2010
The parlous state of palliative care in the developing world Palliative care is almost unheard of in the developing world, condemning millions to agonising deaths each year. Priya Shetty investigates why the need for good end-of-life care is still ignored. In a developing country, patients who are diagnosed with terminal cancer or HIV must confront their mortality alone, and in pain. Pallative care, especially pain relief, is virtually nonexistent in poorer nations. The need for improved palliative care in developing countries is great. Of 58 million people who die every year, 45 million die in developing countries. An estimated 60% (27 million) of these people in poor nations would benefit from palliative care, and this number is growing as chronic diseases such as cancer rise rapidly. Yet a combination of highly restrictive policies on opioid prescription and a lack of awareness within the medical profession conspire to deprive patients of palliative care. Human rights advocates argue that this neglect is a breach of human rights that is tantamount to torture. On the face of it, improving palliative care should be straightforward. Unlike with most global health problems, it would not require large sums of money or a restructuring of healthcare systems. And although palliative care in the developing world is poor in general, there are success stories in parts of India and Africa. Health-care experts say that integrating palliative care into the modern medical culture of trying to cure disease at all costs will require a reappraisal of the way medicine is practised. Too often, doctors avoid honest end-of-life conversations with their patients, says Ranjana Srivastava, an oncologist at Southern Health in Melbourne, VIC, Australia, who has a special interest in palliative care. Much of this can be traced to the way medicine is still taught, she says. In most developed countries, medical curricula pay a lot of lip service to the importance of doctorpatient communication, Srivastava www.thelancet.com Vol 376 October 30, 2010
says, yet this aspect of health care is considered a mere adjunct to medical training rather than a core concept. “The prevailing paradigm is that death equates to failure. As long as you have that concept of death, it’s always going to be difficult to talk about how to end life well”, says Srivastava.
“Pain relief is such a core human right, that not providing palliative care is in someway a worse state of affairs than not doing...drug trials for cancer.” Diederik Lohman, a senior researcher at Human Rights Watch, who coordinated a 2009 report on palliative care in India, agrees with Srivastava. For a disease like HIV/AIDS, for which advocates have fought vociferously for access to treatment in poor nations, “palliative care can be seen as giving up”. The sensitivity and skill with which a doctor broaches end-oflife decisions is as vital as any other medical procedure, says Susan Block, a palliative care specialist at DanaFarber Cancer Institute in Boston, MA, USA. Yet too often, she says, inexperienced doctors are left to fumble through these conversations with little guidance. Inevitably, the attitude that death must be fought at all costs means that doctors sometimes prescribe treatment that they do not believe has much chance of success. Srivastava thinks “this happens more commonly than we would like to believe. Doctors are taught to nourish hope, which nowadays seems to be only about prolonging life.” But when, as increasingly happens, doctors offer patients a selection of treatments and ask them to pick one, they might be putting an
excessive burden on the patient to be responsible for their own care. This model grew out of a valid movement towards patient autonomy and choice, says Block, but has now become the equivalent of “medical abandonment”. “What patients are expert in is their own values and what they are willing to tolerate, but they don’t know the best [medical] route to get there”, she says. For many terminally ill patients, or those for whom all treatment options have been exhausted, pain relief is paramount. But strong painkillers such as morphine are unavailable in more than 150 countries around the world, despite being on WHO’s list of essential drugs. This lack of availability is not because morphine is costly or difficult to get hold of. What is to blame is the so-called war on drugs, says Lohman. So concerned are developing nations such as Columbia, Egypt, and India about the potential for addiction, or the illicit use of morphine, that they make it almost impossible for doctors to give morphine to patients. Pharmacies must jump through so many regulatory hoops that they often do not bother to stock morphine. The result is that in many countries the strongest painkiller that patients dying of cancer or AIDS have access to is paracetamol or aspirin. In 2008, for instance, India used an amount of morphine that was enough to treat only about 40 000 (4%) of the estimated 1 million patients with cancer who needed pain relief. Although WHO and human rights groups are pushing for changes in laws on opioid use, developing countries do not seem inclined to change legislation anytime soon. Yet while developing countries like 1453
World Report
Reuters
The printed journal includes an image merely for illustration
A patient with cancer rests in a hospital in eastern India
Brazil and India are eager to progress in science and technology, they must balance their priorities, says Block. “Pain relief is such a core human right, that not providing palliative care is in some way a worse state of affairs than not doing phase 1 drug trials for cancer.” In developing countries, much of the progress in palliative care has largely been driven by the non-governmental sector. While much of India’s billionstrong population has little access to palliative care, Kerala in southern India has been a remarkable success story. This state alone has two-thirds of the country’s 300 palliative care centres. This has resulted from an extraordinary collaboration between the state, nongovernmental organisations (NGOs), health-care professionals, and volunteers, says Lohman. In 1993, the Pain and Palliative Care Society in Calicut, Kerala, used a small government grant to train healthcare workers and volunteers to set up community palliative care centres. Kerala was one of the first states to change drug regulations to make morphine more easily available, and in 2008 it also became the first Indian state to adopt a comprehensive policy for palliative care. M R Rajagopal, at the Trivandrum Institute of Palliative Sciences, who pioneered palliative care in India, says that Kerala’s success owes much to 1454
the state’s 100% literacy rate (way above the rest of India), which means that the palliative care network can communicate easily with the population through newspapers and posters. To help improve palliative care in the rest of India too, Rajagopal’s Trivandrum institute holds courses for trainee nurses and doctors. The learning is highly interactive, and the students spend much of their time in clinics and hospitals or on home visits. These interactive sessions are crucial, because Indian cultural norms mean that palliative care consultations are even more complex than usual, says V Nirmala, a palliative care physician who works with Rajagopal. Often, she says, families shield patients from knowing the severity of their illness or how long they have to live. This puts Nirmala and her colleagues in the difficult position of negotiating with families to try and convince them that the patient must know their own diagnosis if a palliative care strategy is to be effective. Africa too has had some success in improving palliative care. In 1993, Hospice Africa Uganda was set up in Kampala to provide home-based care, mainly to patients with HIV/AIDS or cancer. The Ugandan Government’s progressive attitude towards pain relief has helped enormously. In 2004, for instance, it changed its laws to allow nurses and palliative care specialists to prescribe morphine. These experiences show that palliative care is possible in even the most resource-poor settings, and offer a model for other developing countries to follow. In 2008, Vicky Lavy, at the Helen and Douglas House Hospice, Oxford, and Charlie Bond, a consultant in palliative medicine at Severn Hospice, Shrewsbury, both in the UK, consulted extensively with doctors in subSaharan Africa and India to produce a palliative care toolkit aimed at developing countries. The toolkit was partly designed to offer guidance for
how palliative care measures could help even in settings where pain relief is virtually non-existent. More guidance is on the way. Susan Block and Atul Gawande, an endocrine surgeon at Brigham and Women’s Hospital, Boston, MA, USA, who wrote an essay in the New Yorker in August about his own struggle to conduct end-of-life discussions, are about to launch a checklist to guide these discussions between physicians and patients. “We think that like providing safe surgery, there are procedures to be followed that increase the chances of a better outcome”, says Block. Improved guidance for medical professionals could help overcome a major challenge in improving palliative care—concern over when doctors and nurses might find time in today’s increasingly hurried health-care systems to have adequate end-of-life discussions. Srivastava acknowledges that time is a resource that few doctors have, but says that at the very least, they could better structure the consultations they do have with patients. “It’s much easier for a physician to talk about treatment, however futile or however little benefit it might give, because that’s what they’ve been taught all their career”, says Srivastava. Yet focusing the conversation on last-chance treatments without asking what the patient’s own priorities are wastes valuable time, she says. Block agrees. During her time as a medical educator, she has noted “a tremendous amount of ineffectual beating about the bush, and euphemistic non-talking about the core issues in these conversations”, she says. Block thinks that health-care professionals actually waste more time by avoiding these conversations. “Patients go to the intensive care unit more, their goals of care are muddled, and there is much more family distress that often takes long meetings to sort through.”
Priya Shetty www.thelancet.com Vol 376 October 30, 2010