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Carol's story

Carol is vulnerable without access to community networks of support and shared experience.

The last time I checked, my respiratory capacity measured 13% of what is normally expected for a person of my age and size. A few years ago, when it hovered around 16%, I consulted a respiratory specialist with a view toward beginning a regime of nighttime ventilation.

The specialist I saw had considerable experience in treating patients with a variety of disabling conditions. She was located at a specialized rehabilitation hospital in a major urban centre.

She reviewed my test results, and within the first two minutes of our consultation, described for me in some detail the process of respiratory failure, for which I am and was at high risk. She then, with appropriate seriousness, urged me to decide what my wishes were with regard to intubation. Would I want to continue to live, fully ventilator-dependent? What would my quality of life be?

I agreed to give the matter due consideration. I remember leaving the appointment, feeling vaguely dissatisfied. It had surprised me that she led the conversation in this particular manner, before any of the “niceties” of exploring my current experience and why I had come to see her.

The next day, I called a friend who has a similar disability to mine and who also has severely compromised respiratory function. When she heard who I had consulted with, she immediately exclaimed, “Oh yes, Dr. DNR!” Apparently this particular specialist takes the same approach with all patients who present with my clinical profile. Always, she leads with the topic of DNR.

Upon my friend's recommendation, I pursued an alternative consult with a respiratory specialist practicing in another urban centre, five hours away. The difference was night and day. This physician, a specialist in non-invasive respiratory therapies, offered me strategies for maintaining respiratory health, recommended protocols and technologies that would improve my chances for survival of respiratory crisis, and spoke of other patients who, with respiratory function as low as 0%, had continued to live comfortably and to their satisfaction. He was respectful, encouraging and highly competent. And, it turns out, he is the “go-to guy”, well-known and widely respected in the community of people with impairments like my own.

Because of my connection to networks of trailblazers – people living autonomous and satisfying lives with respiratory compromise – I was able to access choices that were not on offer by Dr. DNR. For persons without ready access to this community knowledge, the prospects would indeed be much more bleak, only serving to reinforce Dr. DNR’s confidence that her approach was well-founded in clinical experience. It’s a vicious cycle, pervasive and utterly self-perpetuating.

Choice in healthcare can be imperceptibly limited, it seems, by the imagination and approach of the experts we trust for good counsel. This will now be the case for choice in dying as well.

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