Conveying a patient's value is at the heart of a new approach to care

By Louise Kinross

Last month Dr. Harvey Max Chocinov gave a fascinating lecture at King's College, London, called Intensive Caring: Reminding Patients They Matter (click to watch and fast forward to 11:50). Harvey is a professor of psychiatry at the University of Manitoba and a world-renowned scientist who studies the emotional and psychological needs of people who are dying.

In April, the Journal of Clinical Oncology published an article of his with the same name. It begins with this quote from Dame Cicely Saunders, the founder of the modern hospice movement: "You matter because you are you, and you matter to the last moment of your life."

This tenet is central to palliative care, Harvey writes, because terminally ill patients often feel hopeless and worthless, and that they're burdening others.

So it's important that when they look to their clinician, they see a reflection in the provider's eyes that affirms their value as a person, not "a problem checklist," he says in his lecture.

This resonated deeply for me as the parent of an adult with disabilities. It also reminded me of one of the principles of Humanistic Health Care at Holland Bloorview: All human beings are considered to be inherently whole.

Harvey describes an approach he calls "Intensive Caring," which is a way of being with patients that reminds them of their value. 

I could have used this approach when my son was little. At the time, my hunger to have his worth validated manifested in what are known as clinical "doorknob moments."

Often, what most troubles or matters to a patient is hard for the person to divulge. So they wait until the end of the appointment, when the doctor has their hand on the doorknob, to blurt it out.

When my son was a baby, I would wait until our pediatrician was about to dash to his next patient to say: "Will my son lead a normal life?"

I knew the doctor couldn't answer the question, because my son had a rare genetic condition that wasn't well studied, and it affected people in different ways. But I was compelled to keep asking.

Years later I realized that I was using the word "normal" as code for "valuable." Normal is valued in our culture, and disability isn't. What I was really saying was "Does my son have value?" I knew he was a great kid, but I wanted someone in the medical field to see him the way I did.

Harvey refers to an earlier study of his in The Lancet that found that the way clinicians view terminally ill patients is the most powerful determinant of their sense of dignity or worth. "I'd always thought about good palliative care being about what we did to patients or with patients along with their families, and the data seemed to be telling us that the way that we see patients—what goes on between our ears as... health-care providers—is the most powerful determinant of whether or not dignity would be upheld," Harvey says.

I reached out to Harvey to ask whether he thought his ideas could apply in the world of children's rehab.

"Whether you are working with children who have congenital disabilities or disabilities acquired through trauma or illness, Intensive Caring offers an approach that replaces the need to fix with a commitment to be with, to not abandon, and to affirm the intrinsic worth of each child, no matter their physical challenges," he wrote in an e-mail. 

Harvey notes in his lecture that the traditional field of intensive care focuses on patients in the most dire physical condition, but his approach targets patients in extreme emotional pain.

The first element of Intensive Caring is non-abandonment. In Harvey's lecture, he talks about how clinicians who aren't able to change the course of a patient who is suffering may feel helpless, which can lead them to withdraw.

Something similar was found in a study of a six-week narrative group for inpatient rehab nurses at Holland Bloorview, published in the Journal of Pediatric Nursing in 2018. "Moral empathic distress can be considered an internal state associated with nurses' feelings of profound helplessness, which emerges when nursing interventions are unlikely to alleviate a pediatric patient's physical pain or chronic condition," the researchers wrote. 

Harvey writes that when dying patients feel abandoned, they're more likely to think about suicide. Research finds that a strong, ongoing connection between patient and oncologist is more likely to protect against suicidal ideation than mental-health interventions. "Hence the assurance of continued caring and support is a vital component of helping patients feel they matter," he writes. He recounts one patient with end-stage brain cancer who felt hopeless and asked Harvey to help him die. Harvey said he would not hasten his death, but he would meet with him once or twice a week to learn more about him, and offer ongoing support. The patient later said: "These appointments are the only thing that keep me going!"

Prior to narrative training, our Holland Bloorview nurses described a tension in balancing "direct nursing," which included medical tasks, procedures and documentation, with providing emotional support, which they described as "outside my nursing hat."

After narrative training, Holland Bloorview nurses were more likely to recognize that when there is no medical solution, their emotional presence with patients and families is invaluable. They elevated kindness, listening, being flexible, trying not to judge, and providing a safe space to families as being on par in terms of importance with their medical tasks.

The second element of Harvey's Intensive Caring is a deep interest in the patient as a person. "Acknowledging personhood must follow principles of unconditional positive regard, conveying appreciation for who they are, what they are, and all they have tried to be," he writes. 

But how do you extract that kind of information? Harvey says studies "of the Patient Dignity Question, which asks 'What do I need to know about you as a person to give you the best care possible?,' find it "helps patients feel they are seen as whole persons, rather than the embodiment of their disease or disability."

Mining a patient's stories can be part of this process.

Years ago I heard Dr. Paul Browde, a New York psychiatrist and lecturer in narrative medicine at Columbia University, talk about how marginalized people often feel that they don't have a story, or we reduce them to one story. In children's rehab, it's the medical story.

I have used Paul's words to explain in talks with medical students and clinicians why it's so important for providers to uncover the rich stories of a child's life.

Paul shared this definition of the good life: "A good life is one richly described—a life about which many stories can be told."

I was intrigued by that definition, because it sounded inclusive. Maybe it could apply to my son, who won't lead a conventional life. But then I thought: "Does that mean people with privilege have better lives, because they have more opportunities to create stories?" I reached out to Paul and he said: "No, it's not about stories having a positive spin, but rather about excavating for many different stories to describe someone's life, which makes the life richly-described, and that is a full life."

Bingo!

Family-centred care is based on the idea that each child and family has a unique story. When clinicians take the time to listen, to ask questions about what makes a kid tick, to ask about what has meaning for a family, they are conveying their value. These conversations help families embrace, rather than fight, being different.  

The third element in Harvey's Intensive Caring involves the clinician holding or containing hope for patients who feel hopeless. "This means expanding one's therapeutic imagination to include the possibility that patients may find psychological, spiritual, and physical comfort, tolerable suffering, and for those near the end, a peaceful death," he writes. Hope can also be found in the meaning of our relationships, and in thinking about how to craft caring goodbyes to loved ones.

Intensive Caring demands a kind of therapeutic humility, Harvey says: "...relinquishing the need to fix, along with tolerating clinical ambiguity, accepting and honouring the patient as expert, and trusting in the process," Harvey writes. "There are cancers that cannot be cured, depressions that resist treatment, and suffering whose intensity seems impenetrable. In those instances, the goal to fix can lead to feelings of failure and an inclination to withdraw." 

In Harvey's journal article, he writes about 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."

It sounds very similar to how our inpatient nurses described their role in providing emotional support to children and families.

"Patienthood must never eclipse personhood," Harvey wrote in his e-mail.

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