Conveying a patient's value can be healing, scientist says
By Louise Kinross
Every person has inherent value. Patients look to doctors to affirm their wholeness in the face of chronic and terminal conditions. When doctors see a patient as a problem checklist—rather than a unique person—they do real harm to patients.
These are ideas Dr. Harvey Max Chochinov hopes will shift the culture of medicine from a need to "fix" patients to a commitment to “be with, to not abandon, to value,” he says. Harvey is a professor of psychiatry at the University of Manitoba and a world-renowned scientist who studies the emotional needs of people who are dying. In 2022 he published the book Dignity in Care: The Human Side of Medicine.
“I’m trying to get the word out to clinicians that the way they see or perceive or appreciate their patients has a profound influence,” Harvey says. “Several decades ago we asked what does human dignity mean to people who are approaching death, and one of the most profound findings was that people are looking for a reflection in the eye of the health-care provider that will contain the entirety of who they are: ‘I’m not just a patient with a lung tumour or a brain tumour. I want to be seen uniquely as the person that I am.’”
American studies that show a disability bias among doctors and other health workers suggest a disconnect exists in how people with disabilities see themselves and how they’re viewed in the medical world.
Harvey experienced this firsthand with his older sister Ellen, now deceased, who had cerebral palsy. “The times when Ellen suffered were when she would be with a clinician who could only see CP or scoliosis and not see Ellen—the very human being who was trying to make the best life that she could, a life she would describe as very rich and meaningful, with very important and loving relationships.”
Growing up, Harvey learned that certain problems needed to be lived through, rather than fixed. “It’s not a common way of thinking in our culture, or in medicine, is it? Growing up with Ellen felt very normal in many ways. I didn’t have anything to compare it with. I don’t remember discussing it ever with my sister or my parents. It never registered that there was something to discuss, or a problem to be solved. I always understood that Dad would carry Ellen into the restaurant when she was younger, but that was normal. It was simply life.”
Many enter the medical field “seduced by the idea of 'examine, diagnose and fix,' Harvey says. “It’s a wonderful paradigm when it works. But often times things aren’t curable. They aren’t resolvable.”
A cure mentality implies there is “an ideal way of being, and anything less than that is of lesser value,” Harvey says. “That’s the beginning of understanding what ableism is about, and how that lens may diminish a provider’s ability to embrace who patients are as total, full and valued human beings."
Harvey developed an approach called Intensive Caring to guide clinicians in working with children and adults with chronic and terminal conditions. He published this piece about it in the Journal of Clinical Oncology last year.
While traditionally intensive care focuses on patients in the most dire physical conditions, his approach targets patients in extreme emotional or spiritual pain.
Clinicians may withdraw from patients when their condition can’t be cured and they feel helpless. So the first element of Intensive Caring is non-abandonment. “In palliative care, there are good studies to show that in the absence of consistent connection with a clinician, patients have a heightened vulnerability to suicidality," Harvey says. "Abandonment can have hard-edge outcomes that are as hard as life or death.”
The second element of Intensive Caring is deep interest in the patient as a person. “The currency of clinical medicine is biological, but the currency of person-centred care is relational, so we need to find out who this individual is,” Harvey says.
This echoes the idea in children’s rehab that every child and family has their own unique story. When clinicians take the time to listen, to ask questions about what makes a child tick, to ask about what kind of care matters to a family, they are conveying their value.
One tool is the patient dignity question, Harvey says. “What do I need to know about you as a person to give you the best care possible?”
Invariably, Harvey says patients ask to have their answer placed on their charts, suggesting this is how they wish to be seen by staff. “It also changes the way clinicians perceive patients. It enhances empathy and respect.”
Containing hope for patients who feel hopeless is also part of Intensive Caring. "It's very easy to fall into a nihilistic outlook when patients and families feel hopeless," Harvey says. "Clinicians can start to feel that there is no path forward. Intensive Caring says that part of containing hope is to understand what remains possible. There are opportunities to connect with people, to value them, to hear their story.
"Just yesterday I was interviewing a young woman who is dying of an advanced malignancy. She has young children. It could be very easy to say 'What's left to be done?' Yet she took the opportunity to work with me in creating an amazing legacy in which she talks about the milestones in her life and the wishes she has for her children. She talks about the guidance she would provide them as they move forward in life without her, and how she hopes her husband will continue to engage in life and love after her."
Harvey calls this process Dignity Therapy. "It's a way of guiding people through a conversation that is recorded and transcribed, which helps create a legacy that will transcend even their death."
Intensive Caring requires a "tone of care" that affirms the patient's value: "Being compassionate and empathic, being respectful and non-judgmental, being genuine and authentic, being trustworthy, being fully present, valuing the intrinsic worth of the patient, being mindful of boundaries, and being emotionally resilient."
Harvey notes that "we know when we're in the presence of a health-care provider where we're seen. And we know when we're just another patient in a clinic to be processed within a time frame that will allow this provider to be paid and get out on time for dinner."
The final element of Intensive Caring is therapeutic humility. "It's the understanding that not all things in life are fixable, and we need to have the humility to know that not everything we encounter is something we have the ability to remedy. To have therapeutic humility you have to be able to tolerate clinical ambiguity. It's not like having antibiotics that will determine the fate of an underlying pneumonia. That's clean and neat and easy. Not everything lends itself to that, and we need to accept and honour the patient's expertise and recognize that they may take you in a direction that is outside of your comfort zone or area of knowledge and experience. It's trusting in the process and avoiding the need to fix."
In 2022, Harvey published an article in Jama Network about what he calls the Platinum Rule. “Often in medicine we try to gauge what someone else might want or need based on what we might want, or what we might want to avoid.” The concept is based on the Golden Rule—treating others as we would like to be treated. “We impose this external gold standard and become the perfect barometer of what someone else might want," he says. "But sometimes we devalue someone’s lived experience because it’s outside the realm of our own experience.”
He writes about a time his sister Ellen was hospitalized for respiratory collapse and it appeared the intensivist “could only see her life through a lens of suffering, and that if he were that disabled he wouldn’t want to go on. His actions suggested he was reticent about whether this was someone we would intubate, as opposed to letting nature take its course.” The clinician asked Harvey whether Ellen read magazines. “The subtext was chilling,” Harvey writes, because “this was not an attempt to get to know Ellen as a person or how she spent her days, but rather a cryptic way of deciding if hers was a life worth saving.”
Harvey proposes the Platinum Rule: “’Do as the patient would want done to themselves.’ This means not presuming that we know what is in the patient's best interest based on what we would want and taking the time to consider what they would want, hope or wish for," Harvey says. "This helps us confront our own biases, and recognize ‘I may not be seeing things the way the patient is seeing them.'"
Harvey says exploring these ideas in his research and teaching is “inspiring. It’s exciting to be able to work in an arena where these fundamental truths can hopefully start to inform the way we provide care to all people.”
What he finds most challenging is getting his work translated into practice. “How do you take what are empirically based, evidence-based ideas and not only publish them, but get them embedded into clinical practice? Not everyone reads the medical literature. The big challenge is how do you get this into practice, and that is as profound and fundamental as how do you shift the culture of medicine.”