A new Queen’s study hopes to improve communication between doctors and elderly or terminally ill patients regarding end-of-life decision-making.
Dr. Daren Heyland, Queen’s medical professor and staff physician at Kingston General Hospital (KGH), is one of the principle investigators in this study and the only one to come from Queen’s.
Heyland said Canada’s health care system often prevents physicians from acting appropriately and effectively when making end-of-life care decisions.
“If we can identify with more precision, what those barriers and facilitators are, we hope to come up with some better intervention … to improve the situation.”
A $250,000 grant from Canadian Institutes of Health Research (CIHR) was given to Queen’s in early January.
Queen’s will share the money with 11 other Canadian universities.
The grant will be used to complete the collaborative study DECIDE. Using surveys, it will identify barriers to communication and how they can best be resolved.
Questionnaires will be given to over 1,000 physicians and nurses from 12 hospitals across Canada, starting in May.
The survey looks to identify barriers and solicit ideas to improve the quality and quantity of the conversation.
Interviews and focus groups will also be conducted to collect additional information.
Some physicians are responsible for aiding patients and their families in making end-of-life treatment decisions.
“We have to make decisions about what kinds of treatments will be offered,” Heyland said. “We know from other research that that conversation infrequently happens or when it does happen it’s done poorly.”
One strategy that may be effective, Heyland said, is to implement a specific hospital role to lessen the physician’s workload. A nurse or a social worker would most likely take on the role, costing approximately $100,000 for an annual salary.
“Someone that has specialty training, specialty knowledge and access to a broad range of tools that can really help patients and families work through the decision-making,” Heyland said.
Physicians often become emotionally exhausted due to the nature of the work, he said.
“Our health care professionals suffer a lot of moral distress and compassion fatigue or caring fatigue because of the anxiety … associated with communication and decision-making,” he said.
Normally, Heyland said, the decision-making process isn’t effective because the discussion doesn’t happen in advance.
“The absence of decision-making with the patient means that when that patient gets really sick they’re more often than not incompetent or unable to participate in decision-making,” he said.
“If you’re a patient, your final days are full of stress and anxiety and poor decisions will have a very negative impact on your life, your quality of your remaining life, and the quality of your death experience,” Heyland said.
He added that the patient’s family also deals with a variety of stressors when it comes to end-of-life care.
Heyland said the study hopes to create paper- and video-based aids to give patients and families a visual representation of the discussion process.
ACCEPT, Heyland’s prior study, focused on collecting the perspectives of patients and families. The results of this study will be released on April 16 for the National Advance Care Planning Day.
The study also aims to improve the mental well being of health care professionals and increase their overall satisfaction at work.
Holly Watson, in-patient support nurse at Friends of Hospice Ottawa, said time is a significant barrier to proper end-of-life care.
“[Physicians are] strapped for time as it is right now and they’re overburdened with patients … so they can’t take on any more roles,” Watson said.
Communication between family physicians and palliative care physicians is often fragmented, she said.
“If they have a family physician they may not be kept in the loop if they’ve developed cancer, if they have a specialist,” she said. “If they’re only seeing a specialist on period basis, the physician doesn’t have enough information about what’s going on to help them.”
It’s important to improve this communication to ensure patients and families understand the process of care after diagnosis, especially if these patients are independent at the time, Watson said.
“If I go out and see someone who is just been told they have lung cancer and they only have so long to live … they may not have any services in place and so there’s no preparation being done,” she said.
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