Patient and Family Centred Ethics

The March 2008 Newsletter of the Canadian Bioethics Society includes pointed calls to action on the ethics of patient and family centred care by President Patricia Rodney and Sue MacRae, Former Deputy Director, University of Toronto Joint Centre for Bioethics. They are short and I quote them in full below, please view CBS's March 2008 newsletter to see them in the original, as well as the short analysis of concerns about the College of Physicians and Surgeons of Manitoba (CPSM) “Statement on Withholding and Withdrawing Life-Sustaining Treatment”. has an archive of past newsletters.

Sickkids Hospital has a Department of Bioethics affiliated with the University of Toronto Joint Centre for Bioethics. Unfortunately the website for the department is currently missing in action (I emailed the web team and hopefully the resources can be recovered). The Director of the Department of Bioethics at Sickkids Hospital is currently Christine Harrison whose primary area of research interest is identified as "ethical aspects of health care decision-making for and by children, complementary and alternative health care, and end-of-life care for children."

Christine Harrison is also past president of the Canadian Bioethics Society and her February 2002 President's Letter tells the poignant personal story of her mother's death and lessons she drew from it:
"This year’s annual meeting was the first one I have missed. The day I was meant to fly to Winnipeg my mother was admitted to hospital; she died a week later. A couple of months earlier, after two misdiagnosed UTIs, she discovered she had very advanced bladder cancer, for which she declined surgery. (This was fortunate, as another ‘medical error’ had missed the fact that it had already spread to her spine). There is no palliative care physician in our city of over 100,000 people, and her pain was not managed well. I don’t think that, for her, her death was particularly better or worse than for many others. I would like to be able to say that she got good, or even adequate, medical care in the hospital, but I cannot because I never spoke to her physician. Her nurses, social worker, and case manager promised to tell him that I had questions and would appreciate being well informed. I can’t say if this was charted, as I was refused permission to look at her chart. He did write me an almost legible note on Monday, saying that he had a hunch that my mother would be discharged by the end of the week (she died on Wednesday). We waited for some test results for several days (we thought she might have had a stroke) – finally my mother’s ‘roommate’ told us that the doctor had told my mother several days earlier the results of the tests (my mother did not remember this). We received flowers from her physician after her death, but I have still never spoken to him.

As a daughter I am angry and sad. As a bioethicist I am frustrated. Over the past two decades or more we have argued eloquently of the obligations to care for the dying, attend to their pain and suffering, and to the needs of their families. Studies have been published identifying these needs. We write policies and reports, we speak, and we teach and teach and teach. Yet from the stories I am told my experience appears to be the norm rather than the exception."
Christine ends by stating: "We do need to work together in a variety of ways to ‘speak up’ more effectively so that our words and our convictions result in positive changes in the world –
otherwise, we’re just talking to each other." Read the full letter in its original to see some of the work-a-day detail when medical professionals and ethicists viewpoints collide.

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