Planning for care at the end of life: our collective responsibility
Catherine White is a 62 year-old potter and realtor from St. Joseph Island, Ontario. In 2009 she was celebrating her 40th wedding anniversary in Cozumel, Mexico when she felt a funny sensation in her left leg. Two surgeries and 4 years later, she lies in a hospital bed with a sarcoma that has spread to her lungs.
Although White praises the care she has received, she cannot recall a time that any health care professional approached her about her wishes for care at the end of life, known in the health care system as advance care planning.
“I don’t think it was ever discussed. It was more the now kind of thing. What the possibilities were, what the outcome could be, the only thing that was explained to me was that the sarcoma could metastasize but that was it. It was always about what they were going to do now.”
Recently, she underwent a course of chemotherapy with the hopes of shrinking the tumor in anticipation of surgery. Unfortunately, the first round of chemotherapy left White nauseated, anemic and profoundly weak, with little change in the size of the tumor. She gathered her husband and two children to let them know she’d had enough.
“Nobody asked me that. I made that decision on my own.” In fact, throughout her four-years living with cancer, White had never even heard of the term advance care planning.
Many Canadians don’t plan ahead
White is not alone. A March 2012 Ipsos-Reid national poll revealed that a staggering 86% of Canadians had not heard of advance care planning.
Healthy Debate has previously highlighted how comprehensive advance care planning can improve patient and caregiver satisfaction, and reduce unwanted admissions to hospital and aggressive interventions at the end of life.
But respecting patients’ goals of care at the end of life will require more than getting the public to complete advance directives.
Moving beyond traditional advance directives
Traditional advance medical directives are intended to give patients no longer able to make decisions for themselves a way to guide the course of their medical treatment. However, mounting evidence suggests that even where advance directives exist, individuals’ preferences for care at the end of life are not consistently followed.
“An advance directive is a legal document subject to interpretations about what patients may or may not want at the end of life—it’s not very specific,” notes lawyer Amy Vandenbroucke, Executive Director for the National Physician Orders for Life Sustaining Treatment (POLST) Paradigm Task Force.
As a result, the National POLST Paradigm began in Oregon in 1991, and offered an approach to end-of-life planning that translates a patient’s goals of care into specific medical orders to be honored by physicians and other health care workers at a time of medical crisis.
“The POLST is a medical order,” explains Vandenbroucke. “It’s signed by a doctor and states the orders. It’s based on a conversation between patients, loved ones, and health care providers.”
Importantly, POLST orders are valid across different care settings, with the intent of being honoured by everyone from emergency first responders in the community to physicians in an acute care facility.
Compared to a traditional advance directive that is often completed years in advance to inform potential medical catastrophe such as cardiac arrest or ventilator use, POLST specifically addresses current or immediately likely medical decisions. In addition to cardiopulmonary resuscitation orders, A POLST form (available here) provides orders for the use of antibiotics for infection, artificial feeding and fluids, and transfers of care between facilities.
“Advance directives are futurist documents that aren’t needed in the same time frame,” notes Dr. Susan Tolle, a general internist at Oregon Health & Science University and a founding member of the POLST program. “A POLST form takes your advance directives and turns them into orders when you have illness and frailty,” she comments.
A 2010 study of 1,711 nursing facility residents in Oregon, Wisconsin, and West Virginia reported that for residents who preferred a “comfort measures” approach to care (no interventions or medications which are not related to making the patient more comfortable), residents with POLST forms were less likely to receive unwanted medical interventions including hospitalizations.
“This is a tool, that data suggest works better than any other tool, to respect patients wishes and limit unwanted treatment,” notes Tolle.
In Tolle’s home state of Oregon, the POLST program has created a registry that contains a secure electronic record of a person’s POLST orders. The Registry has a 24-hour hotline that allows health care professionals treating a patient to access the patient’s POLST orders if the paper form cannot be located. As of April 2013, nearly 130,000 forms were in the registry, representing a state-wide rate of 12% of Oregonians over the age of 65.
In Canada, Alberta and British Columbia are leading the way
Here in Canada, the Fraser Health Authority in British Columbia and the Calgary Zone of Alberta Health Services are leading the nation in developing and implementing system-wide strategies to increase advance care planning.
Since 2005, the Fraser Health Authority has had a formalized advance care planning program. In October 2012, the Fraser Health Authority Medical Advisory Committee implemented the Medical Order for Scope of Treatment (MOST) & Advance Care Planning (ACP) policy in all settings of care. This policy required that all institutions make use of a “greensleeve,” a coloured plastic pocket which is placed at the front of a patient’s chart and serves as a dedicated repository for all advance care planning documents. Additionally, the Medical Order for Scope of Treatment form (available here) was established, which functions like a POLST form by ordering and communicating current advance care planning conversations.
The 2012 Ipsos-Reid national poll highlighted the success of Fraser Health’s program. The poll revealed that compared to the general Canadian population, the population served by Fraser Health were more likely to have heard of advance care planning, and were more likely to have discussed end of life care decisions with family and healthcare providers.
In Alberta, significant progress towards comprehensive advance care planning began in 2008, when what was then the Calgary Health Region launched the “Goals of Care Designation” policy. This policy aimed to standardize the communication, documentation and processes for advance care planning and included a Goals of Care Designation Order (GCD) that functions similar to a POLST or MOST form.
In particular, the 2008 policy outlined how The Calgary Health Region would use Goals of Care Designation Orders to guide care decision-making for adult patients for interventions including transfer to an acute care facility and life support interventions. Moreover, it dictated than “an Order reflecting the Goals of Care Designation shall be documented on the health record of every Patient receiving care and treatment in a Region-owned or contracted Acute Care facility, Long Term Care facility, Designated Assisted Living (Supportive Living) and Hospice Care facility.”
Dr. Jessica Simon is a palliative care doctor and researcher at the University of Calgary who notes that the environment was optimal for the reception of this new policy.
“Calgary at the time was very fortunate in that it was a fairly integrated health system; we already had systems and structures in place such that acute care, home care, complex continuing care and long-term care facilities were less siloed then they are in the rest of the country.”
Even after the amalgamation of Alberta’s regional health authorities into Alberta Health Services later in 2008, the newly formed Calgary Zone continued to sustain the Goals of Care Designation policy.
Simon, who is a physician consultant for advance care planning for the Calgary Zone of Alberta Health Services, has now been tasked with helping to take the Goals of Care Designation policy and make it province-wide by March 2014. Simon is also the co-lead of a $2.5-million Alberta Innovates – Health Solutions grant that will support a population based knowledge translation intervention study of the province-wide expansion.
“The current climate is the start of an alliance,” notes Simon. “There is executive support and an increasing public awareness of this issue as well.”
The success of advance care planning programs in Calgary and the Fraser Health Authority helped lay the groundwork for the January 2012 launch of a National Framework for Advance Care Planning in Canada. The Framework is centred around a model involving four key inter-related activities: engagement, education, system infrastructure and continuous quality improvement.
Ontario looks to catch up
In Ontario, new Ontario Medical Association president Dr. Scott Wooder has already identified end of life care as a key priority under his leadership. Shortly after being sworn in as president, he announced plans to develop a province wide strategy for this issue.
“I don’t think we’re doing it very well,” Wooder says of advance care planning practices in Ontario. “We need a province-wide standard so that it’s not unusual to talk about advance care planning with patients when they’re healthy, but it becomes normal.”
He envisions advance care planning becoming a standard of care in Ontario. “The standard would be something that every person is exposed to while they’re healthy; it becomes part of the things we do when we look after people.”
But Wooder realizes Ontario will be hampered by its infrastructure. “We need to have a functional electronic health record where this becomes part of a core data set where it’s viewable in everybody’s circle of care.”
The need to engage patients and families
Despite the promise of recent work and legislation, comprehensive advance care planning in Canada cannot succeed unless health care professionals actually engage and listen to patients and their families.
A recent audit of advance care planning practices in 12 acute care Canadian hospitals revealed disappointing deficits in communication between patients and families and their health care professionals. The ACCEPT study enrolled 278 elderly patients and 225 family members across hospitals in British Columbia, Alberta, Ontario and Quebec and conducted in-person interviews and reviewed medical charts to investigate advance care planning practices.
The study reported that 76% of patients had thought about their wishes for end of life care, and almost half of the patients had completed an advance care plan prior to admission to the hospital. Interestingly, these numbers are substantially higher than the Ipsos-Reid national poll numbers, however, patients were only included in the ACCEPT study if they were elderly and at high risk of dying in the next 6 months.
Of patients who had discussed their wishes, only 1 out of 3 people had done so with their family doctor before hospitalization, and 55% with any member of the health care team during their current admission to hospital.
These deficits in communication resulted in nearly 70% of patients’ end of life care preferences being either not documented at all or documented incorrectly in the medical record. Most disturbing was the fact that although 28% of patients stated a preference for “comfort care,” this was documented in only 4% of their charts.
The ACCEPT study was led by Dr. Daren Heyland, a critical care doctor at Queens University and the director of Canadian Researchers at the End of Life Network (CARENET). Heyland blames the failure on the lack of engagement by health care professionals.
“Patients are primed—they’ve thought about it, they could articulate a preference, they’ve talked to their family, and no one has talked to them,” notes Heyland. “If it were that important why weren’t they being asked?”
Heyland highlights how these findings inspired the Just Ask campaign to help health care professionals talk to patients and their families about advance care planning. This initiative is part of the larger Speak Up campaign developed by the Canadian Hospice Palliative Care Association to encourage the public to engage in advance care planning discussions with health care professionals.
Our collective responsibility
So whose responsibility is it in the health care system to initiate and pursue advance care planning conversations?
Dr. Jocelyn Charles, the chief of family medicine at Sunnybrook Health Sciences Centre and the medical director of its associated Veterans Centre feels that family doctors are optimally placed to start these conversations.
“We should certainly be the ones that trigger the discussion if the person is willing to have that discussion,” she notes.
Dr. Daren Heyland agrees. “It absolutely should start in primary care, a primary care doctor should open the dialogue about the final stages of life.” But he also recognizes that an appropriate time to renew planning could be during specialist consultation or discharge from hospital. “It’s really a continuum, an iterative continuum,” he notes.
But Charles also notes that people outside of the health care professions including government and lawyers can help as well. Dr. Jessica Simon concurs. “It’s everybody’s responsibility,” she notes. “We need administrators to provide the infrastructure and system for the communication of wishes or preferences coming out of advance care planning conversations and treatment orders. There’s a public responsibility as an adult to have these conversations to help ourselves and our families and our loved ones. And then there’s the responsibility of health care providers to encourage and initiate these conversations.” She notes “it really is a group activity.”