Advance care planning: a difficult conversation
Advance care planning is an important process by which people think about how they would like to be cared for if they are seriously ill.
While most Canadians agree that having conversations about advance care planning are important, fewer than half actually do.
In some jurisdictions, advance care planning is done much better than it is in Ontario.
The case of Hassan Rasouli, who has been a patient at Sunnybrook Health Sciences Centre since October 2010 has made headlines repeatedly as his family and doctors engage in an ongoing legal battle over whether Rasouli should be removed from life support.
Fortunately, cases like Rasouli’s, where doctors and families take their disagreements to court, are very rare. But it is very common for patients to be admitted to hospital without having ever had discussions about how they would like to be cared for if they become seriously ill.
A March 2012 Ipsos-Reid poll found that less than half of Canadians have had a discussion about their end of life care wishes with their family members and only 9% had ever spoken with their health care provider about this issue.
When asked, most Canadians state that they wish to die at home in the presence of their loved ones. Despite this preference, about 70% of deaths in Canada take place in hospitals. While this may in part be related to a lack of availability of community-based palliative care resources, another reason may be that many people who are near the end of their life have never discussed with their doctor or their family member what kind of care they want when they become seriously ill.
A Canadian study of hospitalized patients with six months or less to live released interim results last month and found that more discussions about end of life are needed between health care providers, patients and their caregivers. The study found only about 20% of patients had been informed about their prognosis, and only 44% about what the goals were for their current treatment.
Daren Heyland, a professor at Queen’s University and intensive care physician who led the study says, “there is a need to normalize this conversation and create a conversation about what the end looks like, think about it and prepare for it.” With more Canadians dying from chronic diseases, these conversations are increasingly important.
Advance care planning is a term used to describe what takes place when someone thinks about how they want to be cared for if they become seriously ill and then shares these thoughts with their doctor and family member. Elizabeth Sloss, a health lawyer in Toronto notes that an advance care plan “is not a specifically enforceable legal document” and is intended to help guide substitute decision makers and doctors in the event that a patient cannot express his or her wishes during a serious illness. Reflecting in such a manner leads many patients to conclude that they only want to continue on life support if there is a reasonable chance they will become independent again. Others decide that they want life support even if the chances they will ever leave hospital are very low.
Heyland says “poorly done, or not done at all, decisions at the end of life result in an intensification of care”. Intensification of care at the end of life – such as resuscitation when the heart stops, for example – may not be beneficial and may actually cause harm to the patient and their family.
Research has shown that advance care planning results in patients being more satisfied with their health care overall. Patients who plan in advance typically receive fewer interventions at the end of life, placing less strain on caregivers and health care system resources.
The Hospice Palliative Care Association has developed a website, advancecareplanning.ca, to provide information, tools and resources to support advance care planning. For example, the website provides templates that patients can use to produce their own advance care plans, and tips to start the conversation with their doctor.
However, having a web site is not enough. In Ontario there is no system-wide strategy for ensuring that advance care planning conversations take place. John You, a hospital general internist and researcher at McMaster University says “the accountability to have these discussions with patients and their families is too spread out across multiple health care providers … everyone feels that it should be someone else’s job, so very few actually do it.”
Heyland says that “where system-level resources have been deployed to drive advance care planning forward and there are higher completion rates of advance care directives, more of the deaths are occurring under conditions that patients want.” One place this has happened is in La Crosse, Wisconsin. In all health care organizations in La Crosse, patients have access to trained facilitators, who meet with patients for an hour or more to discuss advance care planning. In La Crosse, advance care plans are documented in the electronic health record in a standardized manner. Studies have shown that between 67% and 85% of people who die in La Crosse have expressed their wishes explicitly, in advance.
Would a similar investment in Ontario make sense?