Take-aways from Cancer Care Ethics Day

Yesterday oncology folk from around the province congregated in Red Deer, conveniently located halfway between Edmonton and Calgary, for Cancer Care Ethics Day.

bus ride scenery

We listened to three interesting presentations on patient-centred care, cultural sensitivity, and physician-assisted death.

The third one was clearly the most controversial of these and I don't want it to steal the focus of this post. I'll just provide a little background and leave it at that: In February 2015 the Carter vs. Canada decision by the Supreme Court of Canada legalized physician-assisted death in Canada, but the ruling will not take effect until February 2016, giving Canadian medical bodies one year to determine how this logistically will be regulated and carried out. Many questions arose from discussions yesterday, including:

• How would patient competency be evaluated to provide informed consent?
• Who would qualify for physician-assisted death? Depressed patients? Incarcerated people? People who feel that they're simply done with life?
• Would this be physician-assisted suicide (prescribe lethal drug for patient to self-administer) or euthanasia (physician to administer drug to patient)?
• Would physicians who are conscientious objectors have a duty to refer?
• As physicians would be the only group who could legally assist in death, how would nurses and other staff involved in supporting a patient through the assisted dying process be protected?

For the most part these questions remain unanswered and are the focus of much ongoing discussion. While it seems easier to rationalize physician-assisted death in certain situations (terminally ill patient) than others (depressed young person), I really haven't given enough thought to the matter to take a side. Interestingly a recent CMA poll showed that 69% of Canadian physicians would not offer the service.

But enough about physician-assisted death. I wanted to share a few other things I took away from yesterday's presentations (partly to help me to remember them!):

Chronic Cancer Patients

I've sort of always regarded cancer treatment as having one of two intents: cure or palliation. Yesterday I learned that in the middle of this dichotomy falls a third group: chronic cancer patients. These are patients who are being treated aggressively for control, but not cure; they may live for years with their disease, before inevitably succumbing to it. With increasing use of biologic treatments, this chronic cancer group will surely grow.

The Patient's Journey

One of the speakers yesterday analogized the cancer patient's journey to an adventure journey. She presented this diagram

(https://en.wikipedia.org/wiki/Monomyth)

and discussed how a new cancer diagnosis throws a person into the "unknown". The land is foreign (cancer centre, being away from home), the language is unfamiliar (PETs, PICCs, chemo regimens), and the road is unknown (treatments, complications, prognosis). Unlike the adventure story, where the hero returns home, the terminal cancer patient does not -- but their family does and faces its own challenges on the road back.

I thought that this was a clever analogy and it made me think about how we can better inform patients about what to expect on their journey, without overwhelming them with information. I'm realizing that I say things like "we'll take this one step at a time" and "let's cross that bridge when we come to it" when dealing with palliative patients -- and in doing so tend to focus on the present rather than laying out the "unknown" part of the story for patients. I think I'll try to be more cognizant about presenting the long-term plan to patients, in both curative and palliative settings. How to do this without overwhelming patients with information is something I'll have to figure out. Perhaps a brief outline of what is to come is all that is necessary at a first consult, with early direction to resources like The Intelligent Patient Guide to Breast Cancer to fill in the gaps.

Maximizing the Area Under the Curve

Another useful visual was a graph of quality of life versus length of life. Treatments tend to focus on increasing length of life, but a patient-centred approach should really aim to maximize the area under the curve.

Changing the Narrative

We were a shown a short YouTube video made by a cancer patient from Calgary (it was really well done and I'm disappointed that I can't find the link) that described how he had initially declined radiation treatment, concerned that it would decrease his lung capacity (he was an avid mountaineer), and didn't appreciate the slew of data his radiation oncologist had presented to try to convince him otherwise. He went on to describe how at the next appointment his rad onc took time to listen to his concerns, then asked him "If a blind man climbed Everest, what's to say that you couldn't do it with a smaller lung capacity?". The patient saw this as a challenge and accepted the radiation.

So the patient-centred moral of this story was that if a patient and you are not seeing eye to eye, instead of trying to convince them by providing more information, you need to change the narrative -- listen to their story until you find common ground, and then use that to phrase your proposed management in a context that is meaningful to them.

Overall it was an interesting day that I was glad our program had us attend!