25 Jun, 12 | by BMJ Group
Palliative care globally lacks funding, professionals, and medicines (particularly morphine) and suffers from policy neglect, said David Praill, chief executive of Help the Hospices, opening a meeting in London on global palliative care. Palliative care should cover all patients, all diseases, all nations, all settings, all dimensions (physical, psychological, social, spiritual), and begin earlier, said Scott Murray, professor of primary palliative care in Edinburgh, closing the meeting.
At the moment 42% of 234 countries have no palliative care services, and very few countries have palliative care services that are integrated into mainstream care. In almost all countries the services are patchy, and even in Scotland, which along with the rest of the UK has some of the best services in the world, only 29% of patients die with a care plan in place. (Almost unbelievably, a recent survey showed that third of British GPs had never initiated a conversation with a patient about his or her end of life wishes.)
A series of studies shows that over 60% of people in all communities want to die at home, said Barbara Gomes from King’s College, London; yet only a minority do—21% in England, 23% in Belgium, 30% in Canada, 34% in the Netherlands, and only 17% in Norway. (Scotland has no data remarkably, and in Africa people are carried from hospital when terminally ill because it’s five times more expensive to transport a corpse than a (just) living person.) Deaths at home in the US have increased since policies were introduced to encourage the switch from curative to palliative care. In England deaths at home declined progressively until 2004 but have since increased.
Some 80% of people in the world lack access to morphine, and, as Anne Merriman, a pioneer of palliative care in Africa, says “Palliative care without morphine is only supportive care.” The point was made forcefully at the meeting that “Lack of access to morphine is torture.”
Only 12 countries have an end of life strategy, of which England is one.
A palliative care service run entirely by health professionals is not only logistically impossible for most of the world but also undesirable, suggests WHO. Libby Sallnow, a research fellow from Edinburgh University, described the remarkable Neighbourhood Network in Palliative Care in Kerala, which is based on the concept that “chronic and incurable diseases are social problems with medical complications.”
The network was started by doctors in 2001 and employs doctors and other clinical staff, but it belongs to the community and is staffed primarily by 12 000 volunteers. The network cares for 15 000 patients, and the provision of home based palliative care in the state has increased from 2% to 70% in 10 years. Provision in the rest of India is still around 2%. Almost all (90%) of the funds to support the network are raised locally, and 70% of the contributions are under 20p. This demonstrates the deep community roots of the project, and the network is endorsed by many local organisations, including the state government and the police.
There are, said Sallnow, two challenges for palliative care services: access and providing meaningful care. Britain has not solved the problem of access, and it may be, suggested Sallnow, that care by a multidisciplinary team has replaced existing care networks and is not meaningful care. Atul Gawande, the American surgeon writer, who was also quoted at the conference says. “In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.”
Kerala seems to have overtaken Britain with both access and provision of meaningful care, and its model is beginning to spread. Bury St Edmunds, for example, is creating something along similar lines, and Bangladesh, which at the moment has no palliative care services, hopes to learn from Kerala.
Critics wonder if it will be possible to create a similar model outside Kerala, which is recognised by all to be a special state with a strong history of social activism. Challenged with this question, Sallnow pointed out that the network had begun among Muslims and people had said it would work only among Muslims. Then as it spread people said that it would work only in one part of the state—but it has spread across the state.
The Kerala model does provide a feasible way of achieving Murray’s vision of palliative care covering “all patients, all diseases, all nations, all settings, and all dimensions.” It’s hard to see how it will be achieved in another way.
Competing interest: RS is a friend of some of the leaders in palliative care and spoke at the conference on “Embracing death in all its glory.” He wasn’t paid and didn’t need expenses.
Richard Smith was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.