Dr BJ Miller is the first to concede that he is no architect. That said, the US hospice and palliative care specialist is keen to design a health care environment that is purpose-built to enhance dying patients’ quality of life.

As a triple amputee, Dr Miller has spent more time in hospitals than most, staring at ceilings and lamenting bad food, interrupted sleep, loud beeping and ugly gowns. He told his story last year in a TED Talk about what really matters at the end of life. It has been viewed more than four million times.

Dr Miller nearly died in his second year at college while “horsing around” with mates. He climbed to the top of a train, which had electrical wires overhead. Eleven thousand volts arced through his watch, down his left arm and through both feet. He lost limbs, but the watch still works; his father now wears it.

Visiting Australia to speak at the Palliative Care NSW conference in Broken Hill later this week, he tells Palliative Matters that he often hears himself beating up on hospitals. He doesn’t mean to do that. It’s just that we ask too much of them and they are ultimately designed for acute traumatic events. Hospital design reflects that their first priority is to meet the needs of medical staff and regulatory requirements. That is with good reason, he says, but also at significant cost to the patient experience.

“If we consider moving through illness in experiential terms – something that happens over time that you move through, rather than an episode or an event – that invites different thinking and different design,” says Dr Miller, from the University of California San Francisco Medical Center.

He notes that none of the prominent architects in the US has ever designed a hospital.

“As a monumental structure, you’d think it would be really high on the list of buildings to take on.”

Ideally, Dr Miller says we’d remove some of the pressure on hospitals by creating more purpose-built hospice environments within the community. And he has some simple, practical design ideas which start with the obvious; if you’re going to design a building around the patient experience, you need to give significant thought to the ceiling and horizontal sight lines from perspective of someone lying in bed.

“An enormous design prompt is natural light. You have to find a way to get natural light in, and easy ways to get people outside,” he says, adding that as a patient it is priceless to breathe fresh air and feel the sun touch your skin.”

He says the space would need to pay attention to the family experience too, giving them the opportunity to stay with a dying loved one overnight.

“There needs to be a lot of attention for care givers to be involved and participate and to cater to their memories. They are going to be going back into the world to grieve.”

Beyond the building, he also sees benefit in simple measures that acknowledge patients’ individuality and personal needs, like giving them a choice of gowns and changing work-flow patterns to minimise interrupting their sleep. He was recently inspired to meet a sound artist who had a fellowship to work on ambient noises in hospitals.

“All those alarms – they are so ripe to be redesigned. Because they are so ubiquitous, a lot of people don’t respond to the noises. It’s like they’re crying wolf, so it is a source of medical error and a source of annoyance.”

At the time of his TED talk Dr Miller was a palliative care physician at Zen Hospice Project; a six-bed not for profit hospice with the appeal of a home away from home. There, residents taught him that “little things aren’t so little”.

In his talk, he explains that the hospice smells of freshly baked biscuits. Although residents ate very little, if anything, the smell of baking “provides sustenance on many levels”.

He tells of a patient opting for her dog to be at the end of her bed, rather than more chemotherapy. He explains the changing priorities experienced by another woman who is dying and finding it hard to breathe. As she faces the end of her life, she wants to smoke French cigarettes and enjoy the sensation of smoke filling her lungs again.

Dr Miller says Zen Hospice has a ritual for when people die and their body is wheeled through the hospice’s gate. Fellow residents, nurses, family, volunteers and hearse drivers share a story, a song, or silence, as they sprinkle the body with flower petals.

“It is a sweet simple parting image to usher in grief with warmth, rather than repugnance. Contrast that with the typical experience in the hospital setting… floodlit room liked with tubes and beeping machines and blinking lights that don’t stop even when the patients’ life has.

“The cleaning crew swoops in, the body is whisked away. It all feels as though that person had never really existed. Well intended of course, in the name of sterility, but hospitals tend to assault our senses and the most we might hope for in those walls is numbness.”

These days, Dr Miller works only in an advisory capacity with the hospice. He works at an outpatient clinic at the University of California San Francisco, where he sees people still living in the community. Some have many years to live. Others are in remission and struggling with their identity. He also sees patients in a palliative care clinic and at a cancer symptom management service.

He tells Palliative Matters that the US isn’t far ahead of Australia when it comes to ensuring that palliative care is available early in the disease trajectory, if it is needed, rather than just at the end of life. He says in the US, early access remains something of an aspiration.

“In truth, with limited resources, it makes sense to focus on the end of life, but we do need to keep our eye on the larger ambition and not accidentally limit ourselves.”

He says with the pressure of limited resources set to increase with the aging population, there is a huge role for volunteers ahead. He’s not advocating for volunteers to be seen as a source of free labour, and says that they need to be supported with significant training. But it’s time to “explode the number of disciplines that feel part of the palliative care mix”.

He says artists, philosophers, lawyers, human resource professionals and those trained in social sciences “need to feel themselves invited and part of the scene”, and while many people want to contribute, they don't know how.

“A lot of the work of tending to folks that are dying is basically the work of a compassionate human being not running away from a difficult situation,” he says.

“Where we get into trouble is around abandonment. When things get smelly and hard a lot of people run away. A well trained volunteer can do so much for the work of accompaniment which is at the heart of a lot of somaticized anxiety.

“Volunteering is also a beautiful way a community can begin to take pride in how its members age and die.”

In terms of the message he intends to deliver to his professional audience at the palliative care conference in Broken Hill, Dr Miller says he’ll be encouraging delegates to recognise that they’re still operating as activists at this point in time.

He says the most “devilishly hard” part of their very difficult work is not the diseases they confront or challenging family dynamics, but “man-made human system issues that get in the way and gum up the works”.

“We have to be activists for living well, not just for dying. That requires inspiration. Our homework as providers and administrators and activists is to stay engaged and keep trying to push this big boulder up the hill.”