Patient Engagement

Rethinking Conversations during the Care of People who are Dying

As a 2015 Phoenix Fellow I’d like to share some of the backstory about my Fellowship project that will explore end of life care in the emergency department (ED). Talking about death and dying is not an easy conversation, but it’s a really important conversation for the person dying, their family and the health care professionals involved in their care. People living with advanced incurable illness and without guaranteed access to palliative care are likely to find themselves seeking care in an ED at some point during their illness. This is a circumstance I found myself in not too long ago as I cared for my mother. Before sharing a story about this experience and telling you a little about our project, I’ll start with a book that inspired my thinking about the role of conversations in medical education and health care in general.

In 1991, Kathryn Montgomery Hunter published a book titled “Doctor’s Stories”[1] in which she characterized the practice of medicine as a narrative activity that relies heavily on the telling and interpretation of a patient’s story of illness. Hunter lays out how physicians “interrogate” a patient’s story of illness, expand upon it and extract relevant narrative details to generate a version that comes back to the patient in the form of a diagnosis and treatment plan. The central “business” of caring then involves the exchange and translation of stories occurring through conversations. Intuitively, this is not a new idea. The need for conversations in health care probably seems quite evident to you. In fact, The AMS Phoenix Project supported narrative medicine through their 2012 narrative teaching workshop that was built on the work of narrative scholars such as Rita Charon, Arthur Kleinman and Arthur Frank. However I believe that conversations are so evident that their function, form and importance can be taken for granted.

Health care has changed dramatically since 1991. The work of health care providers is increasingly shaped by various ‘factors’[2] that can make it difficult to deliver the care that providers feel patients really need, especially at the end of life. Further, with the advances in health care technology allowing for the prolongation of life, conversations about end of life care can become complicated by the contingencies surrounding various treatment options. However, conversations about end of life care are now a crucial concern given the Supreme Court of Canada’s unanimous ruling that supports physician-assisted suicide, spurring national discussion about the role of health professionals in death and dying.

The importance and changing nature of conversations in health care became clearer for me after my mother was diagnosed with brain cancer in 2011. The tumor was located in the area of my mother’s brain that controlled her speech and she progressively lost both her ability to speak and control of her left side. I was not only her physical caregiver but became her translator, her confidant and her advocate. Knowing that she could lose her voice, our early conversations were vital so that I could ensure that her wishes were respected. During my mother’s illness we made three trips to three different emergency departments. On our last trip, my mother was diagnosed with pneumonia. It was recommended that she be admitted to internal medicine for IV antibiotics. My mother did not want any more treatments but her wishes had not been explored by any of the health care providers in the ED. In fact, she had not been asked about her wishes during any of our visits at any other ED. On my mother’s behalf, I asked for her to be transferred to palliative care, which was a wonderfully peaceful place for her to spend her final days. As I reflected on this experience, I began to wonder what happens to people who do not have an advocate? And/or who have not had the opportunity to discuss their wishes as their illness progresses and/or during their final days? What happens to people who find conversations about death and dying difficult – patients, family or health care professionals? How are health care professionals trained to have these conversations? In particular, how are health professionals working in the ED trained to approach people who are dying?

Many of these questions shaped the genesis of my Fellowship project that is exploring how end of life care occurs within an ED. We are conducting observations of care in the ED, essentially following patients in the end of life who are seeking care in this setting. From this exploration we hope to better understand the processes that advance, support and/or hinder the provision of patient-centred, compassionate end of life care in the ED. I strongly believe that this project has an incredible potential for change within the ED as a practice environment. More broadly though my aspiration as an AMS Fellow is to create a space for conversation, enlightenment and eventually, increased compassionate care and support for people at the end of life across Ontario.

[1] Hunter, K. M. (1991). Doctors’ stories: The narrative structure of medical knowledge. Princeton University Press.

[2] These factors are too numerous to address in this blog but can include increasing administrative demands, increasing complexity of health conditions, efficiency demands, fiscal restraints etc.

– Anastasia Tobin, February 2016

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Anastasia Tobin

“Exploring End of Life Care in an Emergency Department - Patient and Caregiver Narratives” …

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