“For many years, there was a hesitancy, almost a paternalistic view in healthcare, that patients and their families at the end of life shouldn’t be involved in research,” explains Dr Michael Downing, MD, director of the Research & Development department at Victoria Hospice. “This is not really holding up, as recent studies show that those with life-limiting illness want to be invited to participate, and to decide for themselves, yes or no. What they don't want is people deciding for them.”
Motivation to participate in research often has its genesis in the basic human needs for connection and contribution. In the name of well-intentioned protection, for decades those receiving palliative care were not approached to participate in clinical research studies. “To arbitrarily hold that choice back takes away opportunities for social interactions and making contributions those patients want to make,” Dr Downing asserts.
“We at Victoria Hospice have always been interested in the best possible care for patients, and our mission is quality end of life care for all. Finding new ways to provide the best care is better than complacency; we want to move beyond what is sufficient,” says Downing. He and his department strive to support a culture of inquiry among the staff providing the day-to-day care: “Okay, this is what I know, and this is what I am doing; is there anything I could learn to make care better?'”
Many of the ideas for research initiatives come from the professional caregivers. “The research we do is not academic or abstract,” Downing continues. “We don't contribute to the literature just for the sake of literature, but for the sake of care.”
Opportunities to participate in larger studies are also available. “People who are declining can feel a loss of dignity and self-worth, and Victoria Hospice is part of a large, multi-site study on tools to better support dignity at the end of life.”
“Ethics are an essential part of any clinical study, and all of the research projects Victoria Hospice patients participate in are stringently assessed to comply with national ethics guidelines,” Downing states. Another factor to consider is the condition of the patient. “If the illness trajectory is fairly short, things can change quickly. When someone enters into a study, they can certainly withdraw. Just because you said yes doesn't mean you have to continue.”
Through partnership with the University of Victoria, the BC Cancer Centre and the Vancouver Island Health Authority the local region “is emerging as a leader in palliative care research,” says Downing. Major quality of life issues are being addressed, including the effectiveness of specific pain and nausea medications, removing barriers and improving patient communication, and providing patients and families with more accurate prognosis so they can better plan their future.
Apart from some federal grants, the vital research conducted at Victoria Hospice is funded primarily through community support. Every donation helps ensure that the quality of palliative care in our community moves well beyond “sufficient” to become the best it can possibly be.
[This article was originally published in the February 2010 edition of Focus Magazine.]