On the Ethics of Hope
An interview with Brooke Ellison, March 2010:
What is the role of hope in medical care? It is a complex and vital one, and it will soon be the focus of a six week elective course, The Ethics of Hope. The course will be taught to second year medical students at Stony Brook University Medical center this coming March.
The instructors are Brooke Ellison, 31, a doctoral candidate in sociology, and Steven G. Post, Director of Medical Humanities and Compassionate Care at Stony Brook University. They make a strong case for examining the role of hope in medical care, a perspective that is not commonly a part of the training for medical students. “I want to take the subject of hope out of the philosophical realm and provide students a structured way of thinking about it,” Ellison states.
Ellison’s own life is a notable study of hope. Nineteen years ago, at the age of 11, she was hit by a car and left paralyzed from the neck down, dependent on a ventilator. Her journey is a remarkable one, including a Harvard undergraduate degree in cognitive neuroscience and a master’s in public policy from the Kennedy School of Government. As a rising scholar, Ellison began her evolving discourse on hope with her bachelor’s thesis, Hope in Resilient Adolescents. The discourse was furthered recently by Hope Deferred, an advocacy documentary on stem cell research produced by her foundation, The Brooke Ellison Project. Ellison’s life and work represent a distinctive interweaving of her personal and professional interests.
The course is centered on core assertions regarding hope. The first is that there is a fundamental difference between optimism and hope. Drawing on the work of Dr. Jerome Groopman, a Harvard hematologist-oncologist and author of The Anatomy of Hope, Ellison explains, “There is a level of action in hope, which can ground your life, not wishful thinking, but rather, envisioning steps.” Hope now has its own emerging science. NIH-funded studies link hope to enhanced wellness, stress reduction, and longevity. However, it is the undeniable role of hope in the human exchange between doctors and patients that Ellison is most
interested in addressing.
“The doctor’s role is not just a deliverer of an unfortunate diagnosis,” Ellison states, “This is where their role begins; the role of a physician implies the ability to interact with people, and any notion to the contrary is an incomplete one, especially when they are dealing with intricacies of people’s lives,” she adds. “Doctors play a fundamental role in facilitating hope. They are not only a provider of information but also a clarifier of information."
Ellison says these doctor-patient conversations are pivotal in recovery. “What is most important is to help patients through the enormity of their feelings, that there is a life after a catastrophic diagnosis. Patients need doctors’ help in these moments. When patients learn to cope with life altering circumstances, they can then deal with other concerns,” Ellison states. She notes how fostering hope teaches patients tangible lessons. “They will develop the capacity for self- agency, 'I can do these things, even if it is small.' This is so critical to how people will carry out the remainder of their lives; it is a tremendous loss when they don’t do what they could possibly do.”
How Ellison negotiates the demands of her own life is a compelling model. “You develop an ability to compartmentalize. Just because you have a challenge in one part of your life, does not mean that it has to affect every aspect of your life. That is what I have learned and I feel fortunate to have come out to the other side, to share my experience with others,” she says.
And yet, Ellison is careful to add that fostering hope does not mean imparting false hope. Hope needs to be handled carefully, realistically, and it is also important to know when to redirect a patient's hope.
“I think in many cases people view hope as something intangible or irrelevant to recovery. In other cases, people can view hope as denying people of 'knowing the odds' of recovery or of achieving a specific outcome. I don’t believe that either of these two misconceptions have anything to do with hope, as it is extremely relevant and does not depend on reaching a full recovery. It is about a state of mind and a way of interacting with a set of circumstances positively. These are the misconceptions about hope that we plan to address,” she states.
Commonly allotted to counselors and pastoral care, Ellison reasserts the importance of doctors being trained to have these conversations. “I don’t believe the two are mutually exclusive,” she notes.
“Doctors are the ones delivering diagnoses – in essence, being the first present in a potentially traumatic experience – and they need to be equipped in handling that situation. Additionally, doctors will likely be present throughout the entire treatment process, and this sensitivity must similarly be present.”
In the day-to-day operations of our over-stressed health care system, is there room for this perspective? “The current system does not allow for the time needed to spend with patients. This skill set really goes by the wayside,” Ellison notes. Also, in the coming decades of evidence-based medicine, will this type of training be valued? Ellison reemphasizes the importance of not narrowing medical interventions only to the realm of understanding more about potential therapies. “As someone who has tremendous respect for the role of science, I think it is also critical to look at the role of how emotions and mindset affect wellness. There is a need for future studies on the role of hope, so it will not be discounted in medical care.”
When asked what she would see as a learning outcome of this course for future doctors, Ellison states, “I would like them to view their sense of responsibility differently…to listen as much as speak, view themselves not only as health care providers but as health care partners, that what they say and do really matter.”
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