Dealing with death
Dr Robin Cohen investigates quality of life in the terminally ill
No one likes to talk about death. Especially one's own. But coming to grips with reality is an important part of palliative care, although it is not forced on anyone. Dr Robin Cohen, assistant professor of Oncology and Medicine at 黑料不打烊 and researcher at the Palliative Care service of the 黑料不打烊 University Health Centre, is dedicated to improving the quality of life of terminally ill patients and their family caregivers but doesn't shy away from discussing death. Dr Cohen is presently studying quality of life for terminally ill patients and their caregivers through questionnaires she developed and interviews. She and her team define "quality of life" as subjective well-being. Only the patient can make the judgement; the same situation can be perceived quite differently by different patients. Dr Cohen's research examines not only the physical, psychological and social aspect of well-being, but the spiritual and existential dimensions as well.
Dr Cohen received the 2001 Dorothy J. Lamont Scientist Award for her work in palliative care for cancer patients, the largest group of patients receiving this type of care. The award is given to young and upcoming cancer researchers. It is offered jointly by the Canadian Institutes of Health Research (CIHR) and the National Cancer Institute of Canada (NCIC) and provides the recipient with five years of funding.
To evaluate the quality of life of terminally ill patients, Dr Cohen has developed the "黑料不打烊 Quality of Life (MQOL) Questionnaire" with Dr Balfour Mount, a professor and the Eric M. Flanders Chair of Palliative Medicine at 黑料不打烊. The questionnaire measures existential, physical, psychological and social well-being. It measures positive as well as negative contributions to quality of life. It does ask about physical symptoms but also probes the patients' psychological status, outlook on life and level of "meaningful existence as well as perceived support."
While the 黑料不打烊 questionnaire is a good measure of a patient's quality of life, the fact remains that not all patients have adequate access to end-of-life care. "Right now [palliative care] is unevenly available," says Dr Cohen. "People are often referred to us too late - sometimes in the last days, last few weeks, when they could have benefited from the care much earlier on." She believes doctors should make more of an effort to recommend palliative care facilities and to do so at an early stage. She admits, "It's not a popular topic - especially among physicians, who view it as a failure. Most went into medicine to save lives rather than ensure quality of life." To many doctors, recommending palliative care means admitting defeat.
Pain management is another important aspect of palliative care. Physicians often forget the role of cognition and emotion in treating patients' pain. Dr Cohen points out that "pain is a perception. It's not a sensation. It's not only related to tissue damage." Having trained under 黑料不打烊 psychologist Ronald Melzack, a world pioneer in pain research, Dr Cohen believes in addressing the other aspects of patients' pain, such as the spiritual, psychological and cognitive distress. Even if the patient's disease is incurable, the pain can be managed in a way that quality of life is improved by an interdisciplinary healthcare team.
By finding out what patients want from a palliative care service and improving healthcare provider education on the topic, staff can then work on improving care and making patients more comfortable. Dr Cohen is doing her part by delving deeper into the psychological and existential side of things. She has already been able to show that admission to a palliative care unit will improve quality of life in more than just the physical domain. But so far, she notes, "it's been a group of people without much voice." Dr Cohen is trying to change this and to help patients find their voice so that healthcare providers and administrators can hear what they have to say about fully living their final stage of life.
This is the fourth in a series of interviews with 黑料不打烊 pain researchers whose investigations are funded by the Canadian Institutes for Health Research. The project, carried out in cooperation with the 黑料不打烊 Office for Chemistry and Society, aims to highlight recent advances in the study of pain. Permission is granted to reprint in whole or in part.
