Stigma around end-of-life planning contributes to later life pain

Categories: Care.

Palliative care advocates are unsurprised by recent studies confirming the importance of advance care planning and say that federal and provincial health agencies have a role in raising public awareness around end-of-life care.

A study recently published in the U.S. Journal of Clinical Oncology is the latest research to  confirm that advanced discussions on end-of-life care planning have a profound effect on the kind of care that patients opt for in their final days.

The research, conducted by Harvard’s Dana-Farber Cancer Institute, found that terminally ill cancer patients were less likely to approve of aggressive treatment in their final days if they discussed their end-of-life treatment at least a month in advance of dying.

Overall, the study found that 88 per cent of surveyed patients had end-of-life discussions with their doctor, but more than one-third of the discussions occurred within the last month of the patient’s life. The team found that when patients and doctors discussed end-of-life treatment options at least one month in advance, patients were 50 per cent less likely to accept painful treatments like intensive chemotherapy in their final weeks.

Patients who choose to forego aggressive treatments closer to death may instead opt for palliative care aimed at relieving pain as much as possible.

Sharon Baxter, executive director of the Canadian Hospice Palliative Care Association (CHPCA), said that the findings were not surprising from her organization’s standpoint. The difficulty facing many health-care providers, she said, is in discussing end-of-life care with patients.

“So many people that work in oncology and any type of health care—besides maybe palliative care—find these conversations incredibly hard to have,” said Ms. Baxter. “We tend to avoid these conversations with our loved ones and with health-care providers.”

Although each province has its own laws around advanced directives, Canadians are overwhelmingly uninformed of their options. Lack of understanding can be the difference between spending one’s final days in pain or in peace.

While the Harvard study found a large majority of surveyed cancer patients did have some form of end-of-life discussion with their doctor, polling conducted by the CHPCA and Ipsos Reid in 2012 found that only nine per cent of Canadians had ever discussed end-of-life care with a health-care provider. Of those surveyed, 86 per cent had not heard of “advance care planning.”

In June, 2012, Health Canada provided the CHPCA with $3-million in funding to develop “community-integrated” palliative care models in the health-care sector.

The CHPCA hopes to highlight the importance of advance care planning by holding an awareness day on April 16. Ms. Baxter is encouraging people of all ages to think about and discuss with loved ones the type of care they want to have if they become seriously ill.

“So often if the patient becomes incapacitated to make decisions, it’s their family members that make those decisions,” Ms. Baxter said. “By talking about advanced care planning, the conversation becomes less about the process of dying and the event of death, and more about how you want to live right until the end.”

Janice Keefe, director of Mount St. Vincent University’s Centre on Aging in Halifax, agreed that the stigma around end-of-life discussions causes many dying patients to undergo treatments they might rather forego.

“The more education that gets out to make the conversation around advanced directives more accessible to everyone is going to be beneficial,” Prof. Keefe said. “It brings death out of the closet, if you will, and enables people to have conversations about what they wish for at the end of life.”

Although she’s in favour of governments doing more to raise public awareness around the issue, she advised against legislating on the matter and placing the onus on specific health-care providers.

“There’s always the risk of being too prescriptive on what people must do,” Prof. Keefe said. “Maybe the rapport with the doctor isn’t as tight as the rapport with their social worker or the home care nurse that visits them… It shouldn’t be in just one person’s professional area.”

Twitter: @chrisplecash

The Hill Times

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