Listening to Me
It is so great to be able to stand on the “balcony of personal reflection” with all of you. The conversations so far connect to a passage from an earlier essay titled “Empathy: A Foundation for New Conversations”: “… We admire the healthcare system for its intelligence and brilliance, yet we wonder: What are the barriers to making the best use of this intelligence and brilliance?”
We would argue that, to date, we have systematically undervalued one source of this intelligence and brilliance: the experiential knowledge that patients and their families bring to both individual healthcare encounters and to our efforts in designing a healthcare system that provides high quality, safe and compassionate care to people.
We have both lived the gap between the theory and practice of “patient empowerment.” We begin talking about our personal experiences with the healthcare system. Nothing like a little unforeseen fieldwork to confirm the importance of the patient experience and voice.
In my case, I (Gail) have been engaged with the healthcare system for my entire life. Growing up, I was impacted by my mother’s chronic illness and frequent hospital stays. I later studied to become a physiotherapist, which allowed me to become a healthcare provider for a number of years. After working as a physiotherapist, I made a decision to further my education and enter into the system as a healthcare planner, manager and, finally, as a health systems researcher. I am also a mother of a child who was born with complex medical issues stretching more than 20 years ago now. It was the profound experience of supporting my son through frequent and intense interactions with the system that provided me the greatest learning of all. When my son was very young, I became deeply involved in advancing the concept of patient- and family-centred care in the pediatric health services sector. My initial involvement began as a concerned parent, but in recent years my involvement has grown to include researcher.
A candid quote from a book co-authored by a physician and the parent of a child with chronic health issues struck me as very wise counsel many years back, when my son was still a baby, and this very quote still resonates deeply with me to this day: “The inequality between a parent and a professional is not in their inherent worth as human beings, but is a difference in what they have spent time studying. I see it as two containers: the parents, filled with knowledge about the child, and the professional, filled with knowledge about the specialization he has chosen.”
With that the Ghost of Healthcare Consciousness appears and offers the following:
“As parents you were the constant in your son’s life. You learned all those little signs that parents learn when their child is not well. You had been taught well by health professionals to look out for signs of deterioration. You relied on what you had been taught as well as hard-earned experience observing your son; to care for him at home and to know when you needed to call someone or bring him to the emergency room. Yet when he was admitted to hospital, this acquired wisdom was not frequently sought out and, when volunteered, often ignored. Rather than welcoming this extra set of eyes and hard-earned knowledge, these intimate truths are most frequently dismissed. This stems from a belief that as a care provider, we are the expert and you are not, and you need to simply relax, chill out and let us take care of your son.”
The problem that continues to plague the system today originates from this lack of acknowledgement and understanding regarding the expertise that the patient and their family bring. How can our health system provide high quality, safe care when it refrains from tapping into this repository of knowledge and brilliance? Transparent conversations between equals, each valuing the knowledge and expertise the other brings to this most essential partnership, must be the air that we breathe. The more open the flow, the more easily we learn to translate information into meaningful awareness and knowledge.
Three questions for your consideration:
- Do care providers see patients as fundamentally different from them, and does that lead to the nature of a relationship that is inherently unequal?
- Does this unequal relationship prevent open and honest sharing of valuable knowledge and expertise between patients/families and health professionals?
- What can we do to develop healthcare systems that truly support the development of more equal relationships?
A comment posted by Darrell Horn on the essay “The Patient Voice A Value Game Changer” offers some wise words:
“I’m always somewhat bemused by the notion that there is some sort of magic dividing line that separates patients from providers. Because of course, at some point in time, we are all patients. … In my time, working in patient safety and advocacy, I have observed many of the most distressed and activist “patients” to be healthcare workers who have been at the receiving end of adverse events, discovering in a most traumatic fashion that their institutional trust and expert knowledge provided them or their loved ones with little or no protection from the most serious of harms. …”
The torch has long been passed onto Gail’s son, who is now the expert on “him.” Let’s be clear: he is deeply grateful for the healthcare system that gave him his life, and has experienced positive relationships with many healthcare professionals. He also has many personal insights and ideas on how we could better the system. On that note, we would like to close with a thought, from the then 12-year-old son, describing what patient- and family-centred care is all about: “Treating me like a human being with half a brain … Listening to me.”
About the Author(s)Gail MacKean … Patient, Family Member, Care Provider, Researcher. Hugh MacLeod, CEO Canadian Patient Safety Institute … Patient, Father, Husband, Brother, Grandfather … Concerned Citizen.
The Canadian Patient Safety Institute (CPSI exists to raise awareness and facilitate implementation of ideas and best practices to achieve a transformation in patient safety. We envision safe healthcare for all Canadians and are driven to inspire extraordinary improvement in patient safety and quality. To help address many of the challenges mentioned in the essay above the Canadian Patient Safety Institute with partners has tools and resources such as: Patient Safety Incident Analysis and Canadian Disclosure Guidelines. If you would like information about Patients for Patient Safety Canada, please contact www.patientsafetyinstitute.ca
Leff, P. and E. Walizer. 1992. Building the Healing Partnership: Parents, Professionals & Children With Chronic Illnesses and Disabilities. Brookline Books.
Horn, D. 2013. Website posting on essay: “The Patient Voice A Value Game Changer.” Longwoods Ghost Busting Essays.
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