Why palliative care is a matter of life and death...

“Globally no country has got palliative care services worked out really effectively,” says Professor Liz Grant, a passionate advocate of equitable access to end-of-life care.

The Quality of Death Index (2015) commissioned by Singapore’s Lien Foundation had ranked the United Kingdom at the top for its effective palliative care services that are integrated into the National Health Service. And yet, says Grant, the UK could take a leaf out of Kerala's “excellent” community-oriented palliative care model.

“There is a tremendous strength in community here that perhaps we have lost in many parts of the UK,” says Grant, Director of the Global Health Academy and Assistant Principal for Global Health, University of Edinburgh. In fact, efforts are under way in Kerala to apply this community model of palliative care to other groups of illnesses, like mental health as well. Grant and fellow colleague Jeremy Bradshaw were in Mumbai recently to discuss with the Maharashtra Government the development of fellowship programmes and training modules for primary care.

A primary care system across India, especially in rural areas, to screen and differentiate people who need to be referred to hospitals, can improve access to healthcare and make it cost-effective, says Bradshaw, Assistant Principal (Chair or Molecular Biophysics) and International Dean, College of Medicine and Veterinary Medicine with the University of Edinburgh. Currently, the University runs a joint masters online course in Family Medicine with CMC (Vellore) and the International Christian Medical and Dental Association. The programme focusses on training, basic clinical skills and strengthening of the doctors’ abilities to manage healthcare and so on. The University’s other key engagement is on end-of-life care with the All India Palliative Care Association in areas like training.

“Dying is the most natural thing we do and if we don’t intervene with services, we are in danger of seeing families spiral into poverty,” she says. In India, Pakistan and Nepal and in many African countries, families of people living towards death are impacted terribly because they are taking children out of school, people are staying at home to offer care and so on.

“I often say the signature quality of a nation is how it manages those who have been born and how it manages those who are leaving this world. And if we get that right , we actually get everything right in between; but we rarely get those two parts right,” says Grant.

End-of-life care may seem closely linked to the conversation on euthanasia, but it isn’t, says Grant. “Palliative care is not about doing nothing, it’s about doing as much as we can to care for someone as they live towards death,” she says, adding that support services make all the difference.

From her work in Africa, Grant recalls how people would want to go to sleep and wake up dead because the pain was so great. “But that shouldn’t have been the case because morphine is so cheap and things can be done.” Euthanasia is not an alternative, it is outside the palliative care debate, she says. Since palliative care is about treatment, care and support, people who receive it don’t want to end their life, she reveals. In India, the ability to produce morphine and the production of morphine that is exportable is very significant, and yet many people have no access to it. The laws and the fear that if morphine is more readily available, addiction becomes a bigger problem are areas to be addressed. “It is an issue for every country, but we have rarely seen threats coming from hospitals who are caring for people who are dying (where morphine is used for pain relief),” she says.

Responding to how palliative care is seen as a failure to have a cure, Grant says dying is a natural progression, not a failure since “we all die.” Medical, nursing and allied health professionals need to be reconfigured to recognise that death is natural and inevitable. What is not natural is to have a system that does not offer the support you need. “That's an insult to medicine and insult to human beings,” she says, calling for the integration of palliative care into general healthcare services.

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