How patient stories can improve intensive care

    Talking about their health-care experiences can build empathy between patients and health professionals.

    By Sean Bagshaw (University of Alberta, Alberta Health Services), Christiane Job McIntosh (Alberta Health Services), Tom Stelfox (University of Calgary, Alberta Health Services) on September 15, 2019

    Original Story: The Conversation

    The hospital intensive care unit (ICU) has traditionally been a closed environment, where patient, nurse, doctor and family stories are lost.

    But as researchers in critical care, we have found that sharing stories brings humanity into the daily business of providing care. It also has the potential to transform health-care policy and delivery.

    Rethinking patient-oriented care

    The 21st-century reorientation of health care towards patient-centred care—respectful and responsive to individual patient preferences, needs and values—involves listening to and integrating patient perspectives.

    A “common language”

    Research suggests that when people share stories they speak a “common language” that helps them to make sense of their situation, particularly when traumatic.

    In critical care research, we use events such as our Café Scientifique to solicit feedback from patients and families to identify future priorities for care delivery and research. Usually, a panel of scientists presents topical research to a public audience, followed by questions and answers.

    Patients as experts

    We have also organized cafés where the patients and family members are the experts. The audience: Doctors, nurses, health-care administrators and scientists.

    At these events, a common theme has emerged. Patients want to be engaged as partners in their care, even when critically ill. They want to be able to ask for what is important to them and who they want to accompany them during what is often a difficult journey in the ICU.

    Guiding innovation

    If we are to truly place patients at the centre of health care in Canada, we must provide more opportunities for them to share their stories alongside doctors and nurses.

    Scientists and policymakers must then use these collective experiences to guide innovations in health-care delivery.

    Health-care professionals who attended one of our patient-led cafés were deeply affected by the patient stories.

    Said one nurse, “In my 35-year career, I have learned to focus more on the families. There has been a transformation and it will continue based on your stories. I have never thought to ask a family member, ‘Who do you need here?’ That has impacted me.”