‘Death and dying continues to be seen as a big taboo’ | Mary O’Hara

Dr BJ (Bruce) Miller is convinced that how we care for people towards the end of their lives needs an urgent, radical rethink. An American palliative care specialist, Miller is in the UK this week as the keynote speaker at a conference marking the 50th anniversary of modern hospice care in Britain. He will argue that much more needs to be done to ensure the best possible quality of life for people as they deal with illness and approach dying.

“The way in which we handle death and dying is enormous, fascinating and elemental, and yet it is something that continues to be seen as a taboo,” Miller says of how societies like Britain and America tend to confront the issue. Palliative care is not as high a priority as it should be, he says, and while there are encouraging signs of a growing understanding of the importance of end-of-life care, “at least here in the United States, and I presume [in Britain], a lot of people don’t understand what the heck palliative care is”.

A physician and faculty member at the University of California, San Francisco Helen Diller Family Comprehensive Cancer Center, Miller has emerged in the US as a leading advocate for an approach to palliative care that focuses on promoting people’s quality of life, not merely managing pain. It also emphasises the involvement of others including healthcare workers and caregivers in making that happen.. The 46-year-old sprung to prominence with a 2015 TED Talk, What Matters Most at the End of Life, which ended up being among the 15 most viewed online that year. In it he laid out his vision and talked of how his own life experience (at 19 he almost died in an accident and lost both his lower legs and a forearm) informed his perspective on dying and end-of-life care.

Like his UK counterparts in the palliative care sector, including this month’s conference co-organisers Hospice UK and St Christopher’s Hospice, Miller promotes a focus on the individual and the quality of their life, not just on the disease, illness or disability. Palliative care, including hospices and home visits delivered by “interdisciplinary” teams that include doctors, social workers, volunteers, carers and family as well as fresh perspectives from areas like design and art, should contribute to a better life even as it nears the end, he says.

Delivering first-rate palliative care is not just a worthy ambition, it’s a necessity, Miller says. Wider health and social care systems need to respond to the fact that so many more people are living much longer with chronic or degenerative conditions. “People at the end of their lives often do not have access to the services they need, and with an ageing population demand continues to grow.” The availability of hospice services needs to meet the demand, he says.

Miller’s assessment appears to tally with public opinion, at least in Britain. A recent ComRes poll for Dying Matters, a coalition of voluntary and public sector organisations found that only 16% of people agreed there is enough support for people dealing with death, dying and bereavement.

It’s good news that people are living longer, Miller says, but “we’ve opened up these enormous ranges of lifespans too quickly, soour society has not kept up. And that’s a problem.”

We don’t need to demonise hospitals; we just need to use them more surgically

The “default” mode within healthcare systems of “a strictly medicalised approach” won’t suffice, he says. A situation where older or dying people end up in hospitals because there isn’t a better, more appropriate place for them to be is unacceptable. “Being sick, dying; these are hard things that we all go through, but they are much harder than they need to be. The seduction of acute care remains outrageously and disproportionately the receiver of funding and attention,” he adds. “Let’s not ask them to do everything. We don’t need to demonise hospitals; we just need to use them more surgically.”

To truly transform things, Miller says, the public needs to be properly informed about what palliative care is – where the quality of life for people with advanced or serious illnesses is the focus of teams with a range of skills. They need to be made aware of the benefits too, not least because once they do understand, they are likely to put pressure on politicians to make it a priority. This is why he “keeps banging the public education drum”, he says. And policy-makers need to realise that palliative care can be cost-effective.

“Part of the good news of palliative care is that if you are to take the total cost to the system point of view, time and again this approach saves the damn system money. Even if you’re the most narrow-minded bean counter, you’re still going to arrive at palliative care and the approach it provides as good for the system.”

The US and UK palliative care systems may be different, but both should concentrate spending on residential hospices, more homecare services, video conferences and teleconferencing to reach people in rural areas, says Miller. “These things exist. They just need to be developed and amplified.”

He accepts that the challenges are vast. At a time when social care and healthcare in the UK is under huge financial strain, and when Republicans in the US are attempting to dismantle Obama’s Affordable Care Act – which saw healthcare provision expanded to millions who were previously without insurance (including the very sick, disabled and older people) – the climate is far from conducive.

But he firmly believes the status quo can’t continue: “I believe there is a true urgency to this.”

Curriculum vitae

Age: 46.

Lives: Mill Valley, California.

Family: Dog named Maysie and two cats: The Muffin Man and Darkness.

Education: St George’s school; Princeton, undergraduate studies in art history; University of California, San Francisco, MD as a regents’ scholar; Cottage Hospital, Santa Barbara, California, internal medicine residency as chief resident; Harvard Medical School, fellowship in hospice and palliative medicine, with clinical duties split between Massachusetts General Hospital and Dana-Farber Cancer Institute.

Career: 2007 to present: assistant clinical professor of medicine, UCSF; 2011-16: executive director, Zen Hospice Project; 2008-11: associate director, Symptom Management Service, UCSF; 2008-10: associate programme director, UCSF; 2008-10: associate fellowship director, hospice & palliative medicine, UCSF.

Interests: Nature, the arts, the built environment.

‘Death and dying continues to be seen as a big taboo’ | Mary O’Hara