“The Resident looked right through us when telling us my husband was palliative (when 10 minutes prior to this he said his chest x-ray was fine and gave us some slight hope); the surgeon ‘bit’ at me when I asked a question that he felt was already answered. These are just two experiences which are part of a bigger picture of our failing system”. (Excerpt from a letter to Patient Experience Office)
At the heart of patient and family-centred care are the everyday, seemingly mundane interactions that occur between patients and families and hospital staff. Unit clerks greeting patients. Volunteers responding to requests for directions in the hospital maze. Porters making conversation as they take patients for tests. Physicians explaining to patients what to expect next. It is in these interactions that compassionate care is born – or is buried.
The telling of real patient and family stories offers a powerful opportunity to foster healthcare provider understanding about these interactions and the value of patient and family-centred care. Stories connect us to our patients in ways that push the conversation beyond the diagnosis and treatment and get us focusing on relational, person-centred care. With the support of a Fellowship from the AMS Phoenix Project, our hospital is developing and evaluating patient experience curriculums. We are using volunteer patient advisors to tell their positive and negative stories from patient care at education events, to engage staff in self-reflection, and to re-ignite the inner flames of compassion that brought most of them to healthcare to begin with. The patient experience curriculum is now a required part of orientation for all new employees, from nurses to porters to researchers, and business managers.
Marinette is a patient storyteller for the hospital’s corporate orientation and shares the importance of cultural identity while undergoing treatment, and of family involvement as part of her health care team. Jeff Preston recently spoke to students and providers about his encounters with abelism and the importance of including patients within the health care team. “I’m hoping that my story helped some people to change their perspective on disability and forced them to question their assumptions about people with disabilities. Namely, that the core desire is to be cured,” says Preston, “my goal was to challenge people’s expectations of my life and their own lives, and to question what could be, rather than dwelling on what is not.”
“I didn’t know what to expect when I sat down to hear the stories,” says one employee, “I didn’t know I would be moved to tears as Marinette spoke of looking forward to her treatments because her daughter would curl up in the hospital bed beside her and they would have that time together. I didn’t know I would be laughing out loud as Jeff told us he would recite the front page of the newspaper to his health care providers at the age of five so that they would know his physical disability was not mental. These people were raw and vulnerable, articulate and relatable. Listening opened my eyes to how important it is to understand the patient, when you are trying to understand the disease.”
“Hearing the patient stories was an educational experience for me,” another professional reflects, “positive interactions were formed from patients being involved in decisions; patients learning how to make their voices heard; and, a trusting health care provider and patient relationship.” A new nurse expressed how hearing the patient stories reinforced that clinical care has two sides, “skill performance is important but patient comfort is equally important.”
A ‘BIG’ goal of the curriculum is to inspire individuals to collectively take action to ensure a positive patient and family experience. The negative experiences our patients have with patient and family-cented care, dignity and respect, communication and information sharing, collaboration and empowerment, comprehensiveness, and coordination come alive through the stories, ignite empathy and other reactions such as anger and frustration and these reactions lead to a conversation about the barriers within the work environment. While provider interactions are key to the patient experience, we feel a growing obligation to link this other knowledge gained in sessions back to the larger health care system transformation plan and wonder how will we really know that offering patient stories is making a difference in the overall culture of our organization?
We have also come to recognize a need to find out if there are unintended consequences of vulnerability for the volunteers who share their experiences. How are the patients impacted by sharing their stories when we see this often forces them to recall a traumatic or difficult moment? How do we support the patient through the emotional process of writing and sharing their stories? While the pragmatics of a patient storytelling program may be easily captured with deliverables such as toolkits and session evaluations we appreciate that there are more complex implications to measuring our success. Of top of mind is ensuring we care well for the storytellers and support the vulnerability they must embody when they share their stories and that the curriculum is meeting their needs and not just ours.
– Lisa Hawthornthwaite, April 2015
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