Helping doctors fulfil patient treatment choices
Dementia support psychologist, Denise Craig, is investigating how to help hospital doctors navigate a potential minefield – interpreting patient-authored advance care plans, including end-of-life instructions.
However, when a senior medical colleague advised her to pursue her research at a PhD level, with JCU, she was initially aghast – until the AITHM Cohort Doctoral Studies Program offered crucial support.
“I was motivated, but had a bit of a ‘deer in the headlights’ feeling,” she said.
A mother of four, the former dental assistant was already a mature-age student when she embarked on her undergraduate psychology degree at the university in 2002.
In the third year of her course, her mother was diagnosed with dementia, which steered Denise to her current position supporting people living with dementia, as a senior psychologist with the Cairns and Hinterland Hospital and Health Service ACAT and Memory Service – a challenging, but rewarding role she has held for the past decade.
“I help clients to identify and voice what is important to them, then work to remove barriers that prevent them from living life to the full.” Denise said,
As Australia’s population is aging, a growing number of people are creating advance care plans, outlining their treatment wishes, in the event they can no longer communicate adequately or lose their capacity to make complex decisions. However, many plans are not clear-cut and pose challenges for hospital clinicians.
“The doctor has to try to interpret the plan and reconcile it with their own professional views. There can be complexities around deciding what is actually in the patient’s best interests. Legal issues may also arise. What if a family member is disputing a patient directive?” Denise observed.
“Not an enormous amount is known about how hospital-based doctors perceive advance care plans – certainly not in Queensland.”
She had already begun researching how clinicians in her own workplace responded to advance care plans, when she was advised last year to approach her studies “robustly” – at a PhD level. At first, the idea was overwhelming.
“Then I thought about it from the perspective of my clients, who choose to complete advance care plans – and the clinicians who sometimes struggle with those plans. I thought, if I don't do this, then I'm part of the problem, because I'm not doing something about it. We need to know the barriers and enablers to doctors implementing advance care plans,” she said.
Denise was encouraged to enrol in the AITHM Cohort Doctoral Studies Program, which provides a comprehensive support network for PhD students. She joined Cohort 16 this year and attended the induction block week on the JCU Townsville campus in February.
“It just cut to the chase and helped save an enormous amount of time and effort in working things out on my own,” she said. “Things like polishing academic writing, ethics applications, and tricks of the trade with researching.”
Denise valued peer support during her undergraduate studies and is establishing similar bonds with members of Cohort 16, which numbers 14 students.
“Now I am part of a post-grad student group on a similar journey. We come from different backgrounds, which adds rich perspective, and we share a determination to make a difference,” she said.
Ready access to academic mentors is also welcome. “They've been there and done that. And their job and joy in life, I think, is to encourage and shepherd and help celebrate the wins of people who are going through the Cohort Program.”
And Program support staff are quick off the mark to help solve problems. “They’ve always got our backs,” Denise observed. “All in all, I feel as if I am part of a family of unconditional supporters – and that’s pretty powerful.”
Denise now embraces her studies with confidence. She plans to conduct a qualitative study involving interviews with people living with neurodegenerative disease, who have made advance care plans; hospital-based doctors and other clinicians; as well as bereaved family care-givers to ascertain their satisfaction in relation care plan implementation.
She hopes her research findings will help inform medical training, GP education and hospital-based policies around advance care plans.
“Collectively, I hope that we can support individuals to have maximum autonomy through until death,” she said.
