Getting to Know You
Understanding patients as people
“We are more than our illness.”
Dr. Susan McClement finds inspiration in the words of Sir William Osler, the legendary Canadian physician who passed away nearly a century ago: “It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.”
Patient care is enhanced when medical personnel know more about the patient as a person, their family, and their general circumstances, says Dr. McClement. It is particularly important when a patient is dealing with life-limiting illness and the last stages of life.
“Lots of times when people think about oncology or cancer care they think about the disease and the treatment of it,” explains Dr. McClement, Principal Investigator, Psychosocial Oncology and Cancer Nursing Research at St. Boniface Hospital. “But when we think about holistic care and what it means to take care of a person in his or her totality, we are thinking about care of body in terms of symptom management, but we are also thinking about the heart and soul and mind of the person.”
At the root of psychosocial oncology is the belief that “we are more than our illness,” says Dr. McClement. The research she and her colleagues perform is centred on learning more about what patients and families need, and promoting changes in practice where appropriate.
For example, says Dr. McClement, how nurses interact with patients can have an impact on their well-being, even when a nurse is performing technical tasks optimally. “If we behave like their care is burdensome for us, people can really start to feel diminished and their sense of self and their sense of dignity gets eroded,” explains Dr. McClement, who has been a nurse educator since 1985. “We know that there is a whole package of negative outcomes when one’s sense of dignity is eroded. We know that people who have what we call a fractured sense of dignity have higher levels of pain, they have higher rates of depression and anxiety and our research has shown that people have a loss of will to live. We talk about nursing and caring being soft, but there are hard-edge consequences if we don’t get it right.”
Dr. McClement and her colleagues have been involved in a large number of research studies designed to advance knowledge and practice from a psychosocial perspective. One of her most significant projects focuses on nutrition in cancer patients in the last stages of life. She first developed an interest in the topic years ago as a research nurse gathering data for a study on the Palliative Care Unit at St. Boniface Hospital.
“I saw a lot of very thin and emaciated cancer patients who I knew were imminently dying and yet, at the same time, I saw family members bringing in bags of food and going to great lengths to try and get their loved ones to eat,” recalls Dr. McClement. “I saw the resulting conflict that happened between the patient and family, and I saw the ripple effect with the conflict between family and staff. That really piqued my interest.
She has been trying to understand why families behave the way they do around food when a loved one is in the final stages of life, and she is learning more about the impact on patients. And it all starts from a scientific understanding that in the final stages of life, human beings do not process fats, carbohydrates, and proteins, the way healthy people do. The calories, therefore, have little positive impact on reversing the weight loss that occurs as part of the patient’s illness. Family members, although eager to be helpful and nurturing in a difficult time, don’t always understand this.
“What we see is a dynamic where families are trying to get their loved ones to eat; healthcare providers are saying it is not a good idea to push food; and patients are saying ‘get off my back, I can’t eat this,’” explains Dr. McClement. “And so we’ve got all of this tension going on at the end of life. I wanted to understand what that was about. My work has really helped me to understand why some families behave in the way they do.”
While Dr. McClement sympathizes with families desperate to do something proactive, her research and observations point to potentially negative outcomes from encouraging eating against a patient’s will.
“Patients would say things like, ‘You know what? The only way that I am going to get any peace around this is not to talk to them when they come and pretend that I am sleeping,’” says Dr. McClement. “That’s really quite tragic because in a finite amount of time there are important conversations I think that dying patients and families should be having. I think it is tragic that that time is lost while patients are trying to be self-protective.”
Another body of research is focused on the experiences of healthcare aides in personal care home settings. These are people who spend a great deal of time with elderly people in life’s final stages. They are in a position to make keen observations about a person’s condition, but lack the official standing to advocate on behalf of residents when they see family members making decisions about end-of-life care that the aide believes are inconsistent with residents’ wishes. With that dynamic come ethical and emotional issues and questions.
“It is not surprising to me that we often see a high turnover of healthcare aides, although having said that, there is a cohort of healthcare aides who have been caring for the same residents for long periods of time who are so committed. They will say ‘it is like caring for my family,’” says Dr. McClement. “There is a great need for that group to be educated in end-of-life care.”
Above all, for Dr. McClement and her colleagues, the research – funded in part by St. Boniface Hospital Foundation – is about ensuring optimal care for people near the end of life. It’s about seeing palliative care not just as a physical unit within the hospital, but as a philosophy of dignity and comfort at all stages of illness. It’s about asking patients: “What do I need to know about you as a person to take the best care of you possible?” And it’s about using the answer to inform the delivery of care.
“I lament the times back when I was working in the ICU and I read the obituaries of patients who I’d cared for. I learned more about them from reading their obituary than I did in the time that I was caring for them,” recalls Dr. McClement. “How might the way I would have approached them or their family been different had I taken the time to ask and learn about these things?”