The oncology community needs to ‘up its humanity’ and do more to meet the broader range of needs of people with blood cancer, says an eminent speaker at the Blood 2019 conference in Perth.
Delivering the Carl de Gruchy Oration, self-declared ‘lymphomaniac’ Professor David Joske, a haematologist at the Sir Charles Gairdner Hospital in Perth said that during his career he had seen huge improvements in survival across all blood cancers.
“In my professional lifetime, the average lifespan for myeloma has at least doubled and is soon going to be tripled… it is very gratifying to see,” he told delegates.
But Prof. Joske said that with these successes came an onus of responsibility to convert lives saved into lives spent well.
“Yet, while we were getting these terrific results with the exciting drugs coming through, looking around the clinic I saw patients with newly diagnosed tumours waiting between 4 to 6 weeks for an appointment,” he said.
There was also not enough time to spend with patients, production line clinics and a lack of support or a plan for patients at crucial times.
“There was also no lifestyle advice… patients were screaming for advice about what to do, what to eat, how to manage their medications, whether to exercise or not,” he said.
“There was a very clear decision in my mind that we were… not doing [cancer care] as well as we could be and I actually dedicated myself to try and improve that,” he said.
Roy and the road to Damascus
Prof. Joske told the audience about the day a patient told him of hushed conversations with other patients in the waiting room on the use of complementary medicines.
“This was a road to Damascus moment for me because I thought that unless I bought into this issue of alternative medicine there would always be a barrier between me and my patients and that was not acceptable to me,” he said.
The chance to make a change came in 2001 through philanthropic support which allowed the first Solaris cancer care centre to be built, which for the first time integrated natural and complementary therapies with conventional care.
“We advertised for therapists and got some pretty weird and wacky replies. I selected therapies where I felt there was some evidence, where there would be no harm and where I could have some type of therapeutic dialogue with the practitioner.
“We had an offer for example for someone to hang crystals over bags of chemotherapy… I didn’t feel that I could have a dialogue with that particular therapist,” Prof. Joske told a chuckling audience.
“Solaris is something WA and Australia can be tremendously proud of … five centres, 350 volunteers, 18 years experience and now giving almost 1500 treatments per month.”
Empowering the patient and providing a community
Prof. Joske said one perhaps unexpected outcome from his experience at Solaris was patient empowerment.
“I found that patients would often come back and be a lot more prepared to ask questions … and buy into their illness. Going to Solaris and picking a therapy on an ad-hoc basis seemed to flick a switch from a rabbit in the spotlight to ‘maybe I can do something about my illness?’” he said.
Prof. Joske also noticed that for some people Solaris provided a community of people who could understand what it was like to have a cancer diagnosis.
“As we know, cancer is mostly a disease of the elderly, they are often empty-nesters who may or may not be able to cope with the situation … a lot of people feel very alone when they are diagnosed,” he noted.
“Complementary therapies have a role in alleviating symptoms, side effects, empowerment, a sense of community. I think they have a role to play in modern cancer care,” he added.
Cure sometimes, treat often, comfort always
According to Prof. Joske, if Hippocrates came back today, the author of the saying cure sometimes, treat often, comfort always would most likely say: “fantastic clinic guys, but let’s ‘up the humanity’ a bit more”.
“What I’ve tried to show you [in this talk] is that those of us who work in the supportive care space need not feel like imposters. This work is not disease-specific there are supportive care issues that are part of all of our patients and that’s why it is so important,” he told the audience.
“Cancer is now a chronic disease model and we need to change the paradigm from looking after people in acute care hospitals to something that is a chronic illness model with home chemotherapy, nurse practitioners and there’s also a greater role for primary care and community,” he said.
Prof. Joske told the audience he had made a personal response to what he considers shortcomings in the system.
“I’ve reconfigured my clinics where possible, for example, I do the bad news interview twice, the second time I do it with family members when patients have had a chance to get used to the news and are more receptive to information”.
“And, importantly for registrars in the room, I have made a conscious decision to redraw the line closer to patients and allow my humanity to express itself…I was told in cancer medicine that you have to stand back a bit and not get too involved. But I found out after a few years as a consultant that that didn’t work for me,” he added.
Prof. Joske’s recommendations for better haematology care
Prof. Joske said his recommendations for improving patient care included better access to exercise programs through enhanced Medicare rebates, the implementation of a temporary means-tested cancer pension, and better access to integrative oncology across Australia.
“I think the ALLG could be very pivotal in this space…They lead our research and I think it could change practice by also incorporating better supportive care in trials,” he said.
Prof. Joske also recommended mandated treatment summaries for all trials patients and, later down the track, survivorship care plans.
There was also a need for haematology training to have more of an emphasis on communication and empathy awareness.
“I think everybody who interacts with patients should get some basic training on fear of relapse, the role of patient-reported outcomes.”
“We are the elected healers, I ask you all in your daily practice to find ways to show we care,” he concluded.