How will you respond if a patient asks about voluntary assisted dying?
Dr Harriet Beevor put the question to oncologists at the VCCC Alliance’s ‘Beyond the Breakthroughs’ Research Conference in Melbourne this week.
The anaesthetist from the Peter MacCallum Cancer Centre in Melbourne has been involved in voluntary assisted dying (VAD) since the Victorian legislation came into effect in June 2019. She says requests for VAD are on the rise as the practice becomes more accepted.
“When the legislation first passed, there were lots of angry people holding picket signs outside Peter Mac. But practitioners and patients are becoming far more familiar with the concept, and the fear of the unknown is slowly starting to dissipate. We’re certainly getting a lot more referrals,” Dr Beevor told delegates.
She said four in every five patients applying to Victoria’s scheme had a cancer diagnosis, with a much smaller percentage having a neurodegenerative condition or organ failure. Almost two-thirds of patients lived in the city, and one-third resided in rural areas where VAD practitioners were lacking.
Dr Beevor said the application process for permits was lengthy with four weeks from first appointment to dispensing the lethal medication “a good result”. But the number one factor affecting the efficiency of the process was the enthusiasm of the doctor who received the first request from a terminally ill patient, she added.
“One of the biggest challenges we have is that some of the palliative care services and health care services won’t help us at all when it comes to VAD logistics because of religious or other grounds, some Catholic institutions, for example.
“So we find ourselves having to transport patients out sometimes to the palliative care ward at Peter Mac, just to allow them to take that medication at the end.”
Dr Beevor said hundreds of doctors had undertaken the online training, with GPs and medical oncologists the best represented specialties among VAD practitioners.
With all states having passed VAD laws – with only the NSW legislation still to come into effect – and the territories expected to soon follow suit, Dr Beevor said there was hope VAD would gain some attention from the federal policymakers.
“This will not only optically be a big sign that there’s acceptance by the general public, but we’re also hoping that it will create some Medicare item numbers so that we as practitioners can be remunerated properly for the work that we do.”
Her own involvement stemmed from her experiences in Hong Kong, where she worked for three years after completing her advanced training in anaesthetics.
“The palliative care service in our hospital, but also Hong Kong at large, was non existent, nor was end of life dignity. And I saw so much unnecessary suffering while I was there by both the patients and their poor family members,” she said.
“And so my return to Australia in 2018 was perfectly timed with a pilot program looking at how doctors managed the online training and the assessment process.
“I signed up with gusto thinking that maybe I can make some of the wrongs in my head right. I then started seeing patients in July 2019.”
At last count, Dr Beevor has seen 100 patients spanning the ages of 18 to 98.
“In operating theatres, our KPIs are basically to keep patients alive. It’s not the same with VAD, it’s about giving those patients quality of life at the end of their life, and letting them go with dignity and grace,” Dr Beevor said.
“I don’t think there’s any medals for suffering.”
She works as a VAD practitioner while also balancing part-time work at Peter Mac, work in private practice, supervising trainees and looking after her three children.
“I have to say that it’s the most fulfilling part of my week,” Dr Beevor said.
“Usually day-to-day I’m in an operating theatre without windows or natural light, and it’s really nice to go into another part of the hospital and work in a different team. And I receive a lot of gratitude from my VAD patients and their families.
“It’s a wonderful feeling giving the control and certainty back to those who so desperately have wanted it throughout their cancer journey. I’m constantly humbled by the patients’ stories, their strength and their vulnerability.”
“It’s definitely made me a better doctor.”
Advanced care planning underutilised in oncology settings
Delegates in the same session also heard that Australian oncology health professionals including doctors and nurses had limited knowledge and skills in advanced care planning regardless of their years of experience in the field.
Helena Rodi from the North Eastern Melbourne Integrated Cancer Service said figures showed that documentation of advanced care planning only occurred for about 14-34% of patients with cancer nationally and only 12% of those in Victoria.
It was also happening too late in the illness trajectory to have an impact, she said.
She presented the results of a national survey of 263 oncology health professionals, which found a low self-reported knowledge of advanced care planning with about half of health professionals unaware of key information.
Respondents were more skilled in discussing general topics such as quality of life, values and death and dying than the practical aspects of advanced care planning.
Only 25% of oncology health professionals discussed advanced care planning with most patients receiving treatment with curative intent however 80% of health professionals agreed or strongly agreed that discussions were part of their role.
Oncology health professionals who had participated in advanced care planning training and education had significantly more knowledge, more skills, they raised more advanced care planning conversations and had more positive perceptions.
Reported barriers were a lack of time, a lack of expertise and a lack of role clarity.
Ms Rodi said advanced care planning should be embedded in the tertiary education of oncology health professionals and regularly throughout their careers, while cancer services should have clear models of care and clearly defined roles.