Palliative care 'is not simply pain management for terminally ill patients'

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November 18, 2017 13:18:26

When doctor Sally Williams saw an elderly Aboriginal man crying in a corridor of Katherine hospital, it was a turning point in her career.

“He was crying as he was talking to his family, he just wanted to go home,” Dr Williams said.

“He knew he was coming to the end of his time.

“I was a junior doctor and I was told in no uncertain terms the man needed to go to Darwin for a tissue biopsy.

“So essentially against the patient’s will he went to Darwin … and he died on the plane getting home and I thought ‘gosh, we need to be able to do this better’.

“That was really the beginning of me thinking about a career in palliative care.”

Palliative care is often thought of as being simply effective pain management for patients suffering a terminal illness, but Dr Williams argues it is really about giving people control.

“Obviously you’ve got to effectively manage pain to do that,” Dr Williams said.

“It’s physical and emotional … it’s about a good quality of life and you’ve got to tailor that to the person — not the family’s wishes, not the healthcare system’s wishes.

“It’s about living well. The dying takes care of itself.”

The pathway to palliative care

Already a specialist in rural medicine, Dr Williams spent another three years training to become a palliative care specialist.

She is now senior consultant with the Central Adelaide Palliative Care Service, working primarily out of the hospice based at the Queen Elizabeth Hospital.

Recently Dr Williams took the ABC on her rounds, as she stopped in with a man named Robert.

He had just arrived that morning at the hospice.

Robert’s transfer from the Royal Adelaide Hospital puts him much closer to his partner.

“Sometime people are transferred to places where it’s hard for family to visit,” Dr Williams said.

“And we think, ‘why did someone not ask that question about how easy will it be for family to come in?’ It’s important, really important.”

After speaking with Robert, Dr Williams and her team sort out a treatment plan.

“He’s pretty straightforward, he says he’s in the end zone, so he’s keen on being here having us support him and just dying naturally, and the staff here are very comfortable with that,” she said.

Volunteer Alex Dunkley then pops her head into the room and asks Robert if he would like a foot massage.

“It’s really about spending time with people,” Ms Dunkley said.

“I think there’s a lot of fear around death and I don’t think there should be, so if I can help someone enjoy this time, I think that’s important.”

Rural patients are just as important

Death comes to us all eventually, but it most certainly does not do so equally.

The Australian Institute of Health and Welfare said that in 2014–15, 46 per cent of admitted patients who died received palliative care.

In Dr Sally Williams’ experience, overwhelmingly those people would have lived in the major cities.

“You are lucky if you happen to be able to access a specialist palliative care service like I currently work in, and you are not so lucky if you happen to live outside of a metropolitan area,” she said.

“Luck should not play a role, but then again life is full of inequities.”

But Dr Williams also describes herself as a realist.

“Everyone’s budget is hammered,” she conceded.

“I understand why services need to be based in places with bigger populations, but I work hard to remind everyone we have an obligation to provide access to patients and families who live outside of metropolitan areas.”

Once a month Dr Williams makes good on her share of that obligation.

“It’s not hard to close my clinic here [in Adelaide] and go to Whyalla or Port Augusta where I review patients. Staff and patients in Adelaide then need to call me, so it flips things around,” she said.

“It’s a question of education and also the services thinking beyond the urban centres.”

But Dr Williams’ commitment to that takes her much farther afield than country South Australia.

For the past two years, she has spent much of her holidays volunteering in a hospice in India.

“We went to India when I was a 12-year-old and coming from a privileged background in Adelaide, it had a profound affect on me,” she said.

“I’d planned on going back a few years ago with my mother, so my daughters could have that same experience, and then my mother inconveniently died and I thought, goddamn it, let’s just go!”

Voyaging to India to volunteer

The clinic Dr Williams volunteers at is in Rishikesh, a city of 200,000 in Uttarakhand state, north of Delhi.

Her comments about her work there are typically self-effacing.

“I’m not sure I’m doing any good. That’s for others to decide,” she said.

“My role is partly clinical but mostly as an observer and guiding them in how their practice is going and making it sustainable and culturally appropriate.”

The service is relatively new and it’s evolving, perhaps a bit like a new life.

To see people live all of their lives well is what motivates Dr Williams, and so she has already decided she will return to India next year, and then the year after that.

“I’d made a commitment to myself that if I was going to do this, it was going to be for the long haul,” she said.

“I think that comes back to my feeling … of well-meaning people coming in offering advice once off and never being seen again.”

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