By: Annamarie Fuchs, Creator. Partners in Health | Conversations

October 29, 2020.

As the work of completing the second article in the series regarding person-centered care continues, it’s amazing to me how often we are confronted by system defects or successes based on the experiences of the people we serve or those who serve us so faithfully. I know that the next two articles care can’t hope to capture all of the nuances we all face in our complex health system, so I thought I’d devote a reflection this week to talk about some of the conversations I’ve had very recently.

I spoke on Monday with a nurse from another province who was frustrated and distressed. She is a community outreach nurse in a remote part of the country. She recently received a consult for a new palliative care patient. At her first visit with the family where the physician was present, the first thing the physician wanted to talk about was M.A.I.D. That’s Canada’s “Medical Assistance in Dying” legislation and practices that have been in place for some time. The physician’s first comment was something to the effect that “I just want you to know that if you consider taking advantage of MAID, I’m here to help you.” Neither the patient nor the family at that point had been afforded the opportunity to discuss what their worries, expectations, or hopes were for her palliative experience or whether they had even contemplated MAID. The end result? A patient expressing her fear to the nurse that she didn’t want to be a burden to her family and should probably consider using MAID.

I’m not here to talk about whether you or I should embrace MAID legislation. That’s a personal choice and one that both health professionals and citizens will continue to grapple with for some time to come. What I want to talk about is how the ‘system’ confounds our efforts to enable person-centered care by establishing legislation, policies, procedures, and practice patterns that tend to ‘lead’ the patient or the family rather than first and foremost requiring all health professionals to take the time necessary to first ‘establish a relationship’ with that individual. When we impose any of our values or ideas on others before first hearing what theirs might be, we take away their autonomy and their comfort in voicing those values or needs, particularly when they are most vulnerable.

This very same week I spoke with a man whose aged father has experienced multiple new and life limiting diagnoses. He’s 90 so he’s comfortable with the fact that he’s not likely to live for another 20 years. So, they headed off to meet with his family physician to discuss goals of care. In our first article regarding person-centered care we heard from an emergency physician who emphasized that these conversations must, whenever possible, occur with a family physician who has the time and the resources necessary from the system to ensure a safe and compassionate environment that will allow decision making to be a truly shared experience. That physician spent as much time that day as the older man and his son needed. She was patient, compassionate, and specific as she explained all the options (of which there are many) and provided her own recommendations and reasoning behind them. When the conversation ended, all three people who participated felt heard, appreciated and cared for. My hat goes off to that physician for her commitment to actively delivering ‘person-centered care’ to her patients and their loved ones. When I hear stories like that, it reminds me why I’m still here, trying to support the health system after all these years. The next question we must ask is whether she and her colleagues across Alberta and beyond are appropriately supported in consistently delivering person-centered care and conversations which undoubtedly take time.

I can assure you that there are providers like this physician everywhere. She’s a caring physician but she is not unique. In fact, as many of you know, a physician was murdered this summer in his clinic in Central Alberta. In the months following Dr. Walter Reynolds’ death, I’ve come to learn more about him from his colleagues. I had met him only briefly years ago when I was in a different role in health care. What I’ve learned since his death is that this was a man who lived his values of ‘caring for’ and ‘advocating for’ the people who had entrusted their lives and their needs to him. I wonder what more this amazing man might have been able to accomplish in his efforts to support his community if he had lived to retire from medicine as an older man. What a loss to the community and the profession! And that doesn’t even begin to contemplate the loss that his family is enduring. It is essential that his story is not lost on us and that we do not lose sight of the fact that we do indeed have physicians and other providers who do their best to work within a flawed system and who truly give their lives in many ways in their efforts to advocate, protect, and care for us.

Regardless of our roles, titles, or addresses, we must recognize that we are both creators and customers in this system we call health care. We can’t blame system leaders for doing their best to manage a system that is complex and constantly changing to meet our needs as patients, advocates, and family members. It’s time that we discuss openly and respectfully what each of us believes  it would take to work within Canada’s Health Act[1] to contribute to and gain experiences from a system that is expected to deliver care that we need when we need it. Ask yourselves what that might look like in comparison to what we have today. We can no longer ‘assume’ the health system will be readily and consistently available to us when we or someone we care about needs it. You need only hear the story of Greg Price or speak with his family to appreciate that Greg trusted the system to intervene when he was most vulnerable. Greg’s family believed the system would enable Greg to receive the care he needed. And yet despite a system in Alberta where more than 100,000 people, most of whom are committed and wonderful providers who deeply care about patients, Greg and his family were let down. At 31 years old, Greg died. And Greg’s family have my continued admiration for their advocacy and activism as they collaborate across the system and beyond on behalf of us all to enable a brighter day when the system supports patients and family more often than it fails them or us.  You can find them at Greg’s Wings https://gregswings.ca/ or check out the “Falling Through the Cracks” trailer.   https://gregswings.ca/fttc-gregsstory/

In late 2013 the Health Quality Council of Alberta, one of the most trusted and valued voices in Alberta’s health system delivered a detailed analysis of Greg’s journey[2]. In that report are recommendations for system change that can and will enable more consistent person-centered care. Our job as citizens is to read, to educate ourselves, and to be accountable by contributing to what may be the most important conversation in a generation.

[1] https://www.canada.ca/en/public-health/services/publications/science-research-data/canada-health-act-infographic.html

[2] https://hqca.ca/wp-content/uploads/2018/05/Dec19_ContinuityofPatientCareStudy.pdf

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