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January 14, 2011
Champions of palliative care
Two Canadian doctors focus on reducing the severity of suffering.
REBECA KUROPATWA
According to Judaism, each person is expected to be a mensch, one who goes out of his/her way to help others who are in need.
Dr. Harvey Max Chochinov, a Winnipeg-based international leader in palliative care, understands this concept well. Jewish identity comes up time and again when speaking about the work that he does with those facing end-of-life issues.
“The essence of Jewish identity, for me, resides in knowing where I come from, the history of the Jewish people, and the values embedded in menschlichkeit, that is, striving to be a kind, honest and generous person.”
Chochinov’s great-grandparents and grandparents came to Winnipeg from Russia at the turn of the 20th century, fleeing persecution and prejudice. “Mindful of our past, our family has maintained a strong sense of Jewish identity, upholding cultural traditions from generation to generation,” said Chochinov, speaking about his wife, Michelle, and two daughters, Lauren and Rachel. “Jewish language, music, storytelling, humor and Yiddishkeit are key elements of that tradition.”
Holder of the Canada Research Chair in Palliative Care, Chochinov is the director of the Manitoba palliative care research unit at CancerCare Manitoba, and is ranked distinguished professor of psychiatry at the University of Manitoba.
“My research career has focused on trying to understand and improve end-of-life experience for people facing life-threatening and life-limiting conditions,” he said in an interview with the Independent. “We’re living longer, so more people are encountering the age-related consequences of growing old. My concern is that our health-care system won’t be ready to handle that challenge. We pay attention to every other aspect of health care, but somehow neglect to plan for the fact that every life eventually ends. The consequences of that neglect mean that patients suffer more, and families are denied the comfort of knowing they followed the path of least regret.”
The Canadian Virtual Hospice (virtualhospice.ca) is a national web-based resource, chaired by Chochinov, on palliative and end-of-life care, loss and grief. The website is visited by more than 1,000 Canadians daily, including patients, families, health-care providers and volunteers, and each year sees visitors from more than 150 countries.
The word palliative comes from the Latin word palliare, meaning to cloak. Palliative care focuses on preventing and reducing the severity of disease symptoms in those with serious, complex illness.
“Facing the reality of death and dying is hard, but not facing it doesn’t make it go away,” said Chochinov. “No one has a choice between dying and living forever, but we do have a choice between trying to plan for a good death, as opposed to not planning at all. Dying is inevitable, but dying poorly ought not to be. Palliative care can prevent suffering and provide everything from effective pain relief to emotional and spiritual comfort. Until life itself is over, palliative care aims to achieve the best quality of life possible.”
At virtualhospice.ca, visitors can find information and support appropriate from the time someone is diagnosed with a life-limiting illness, for those with chronic progressive disease and those caring for the elderly. This virtual portal provides personalized answers to questions posed by physicians wanting highly technical input about managing challenging symptoms, as well as from patients and families wanting guidance on how to navigate the emotional challenges of a terminal illness. Unique in Canada is the ask-a-professional feature that provides people with access to specialists in palliative and end-of-life care. The services are free and no subscription is required.
“We promote what I’ve coined as the ABCDs of dignity-conserving care,” explained Chochinov. “This means everyone working in health care must understand their attitude and behavior has a profound influence on how patients experience care, as does compassion and dialogue. This approach acknowledges who the person is and not simply what illness they have. It embraces the values of humanity, kindness and respect. No one likes being thought of simply as a patient, so health-care providers must find ways to affirm personhood as part of comprehensive, quality patient care.”
Chochinov suggested that people speak with their families about how they wish to be cared for near the end of life. “These preferences can be put into a health-care directive and people can name a health proxy. This won’t solve the resource problem ... but it will help people get the kind of care consistent with who they are and their expressed wishes.”
Another palliative care leader is Vancouver-based Dr. Beverly Spring.
Spring is medical director of the Vancouver Home Hospice Palliative Care Service that supports people in their homes who are living with a life-limiting illness. She is also a Vancouver General Hospital palliative care program consultant.
Before settling in Vancouver in 1980, she and her husband, Dr. Alan Morinis (a student and teacher of mussar, a stream of Jewish spiritual practice), lived in Toronto, England and India. The globetrotting duo have 28- and 24-year-old daughters.
“In India, I worked for the [World Health Organization] in the smallpox eradication program and studied yoga and meditation,” said Spring. “I discovered that serving others is a spiritual path.”
The doctor went to medical school after returning from India, and began work as a family doctor, before moving into her palliative care speciality 15 years ago.
“At home, we’ve always been involved in the Jewish community ... especially once our children were born,” she said. “My connection to Judaism has deepened in the past 12 years by the influence of my husband’s mussar teaching and my own learning of it.
“The Torah teaches us to be holy, and the mussar masters guide us in becoming whole. Our mandate as health-care professionals is to foster healing, which can be seen as supporting patients as they move from suffering to a sense of integrity and wholeness, whether they’re cured or not,” Spring explained.
She sees bringing the soul back into health care as a major priority. “If all medicine aims to do is fix things, the patient becomes objectified. Palliative care tries to restore the balancing skills of fixing and ‘doing to’ on the one hand, with relationship and ‘being with,’ on the other hand. This way we relate, not just in our roles as doctor and patient but as human being encountering human being, even as soul meeting soul.”
Working in palliative care not only gives Spring the opportunity to help others but also to work on herself. “Working with people facing the end of their lives, we need to be attentive to physical, emotional, psychological, spiritual and practical issues,” she said. “Those issues present me with opportunities to develop traits like kindness and compassion, which are so important on my own journey toward wholeness.”
Recognizing the value of whole-person care, Spring helped establish the VGH palliative care unit’s Art Cart, which is spawning similar programs around the country.
Patients and families participate in creating their own healing environment in their hospital room by choosing from a selection of 30 images brought to their room by a specially trained volunteer.
“Research has demonstrated the many benefits of visual art in hospital settings for patients, families and health-care professionals,” said Spring. “Benefits for patients include less anxiety, agitation, stress and analgesic requirements. Staff benefits include higher morale, working conditions satisfaction, bridge building for patient-family communication. There’s transforming potential in the images that supports people who are facing issues of uncertainty, loss and vulnerability.
“Choosing and discussing the art also creates rich opportunities for fostering relationships between patients, families, staff and volunteers – and, through relationships, life is affirmed.”
Rebeca Kuropatwa is a Winnipeg freelance writer.
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