I don’t remember much about my Grandma, but I do remember how she died. It was one of those perfectly tranquil winter nights in January of 2009. My family was at our home finishing dinner when Leisureworld, her long-term care (LTC) facility, called to inform us that she had a fever and low oxygen levels. They asked if we would like for them to transfer her to the hospital.
My Mum was quick to call her sister to discuss the plan. They had previously decided with the Leisureworld physician that her advanced Alzheimer’s Dementia had run its course, and yet another trip (she had had four in the previous year) to the hospital would only prolong my Grandma’s suffering, along with their own. She died peacefully that night.
The process of determining my Grandma’s preferences for specific medical treatments in the face of illness is known as Advanced Care Planning, which is discussed as part of a larger Goals of Care conversation. These discussions attempt to focus on a shared understanding of the patient’s values and treatment preferences to develop advanced directives aligned with the patient’s goals and wishes. When patients engage in advance care planning they are more likely to receive palliative care and appropriate end-of-life care in the community. As a result, they are more likely to die at home or in their LTC facility rather than in hospital, and have improved quality of life and satisfaction with their end-of-life care. They also have a reduced likelihood of receiving hospital care and a reduced number of days spent in the hospital. Conversely, poor communication leads to increased incidence of hospital admissions, medical errors, and poor health outcomes.
But this critically important discussion, and the seemingly simple definition of what constitutes a Goals of Care conversation is as infinitely complex as the patients who we have them with. Like many things in medicine, it requires a specialized skill set requiring training and experience. And herein lies the inherent conflict – determining a patient’s preferences for treatment is something all physicians do, yet our degree of training and perspectives on who should determine them can vary widely.
The result is that there is huge variability in how these conversations are conducted, and no established guidelines from experts in the field on how to conduct them.
When it comes to end-of-life care for terminally ill patients, these discussions become even more challenging given the sensitive nature of the topic: death. The term “comfort care” is often used to define care for a terminally ill patient who wishes to forgo medical treatments aimed primarily at prolonging life. Instead, it focuses on improving quality of life and relief of suffering. In my experience as a physician however, the use of this term is largely inconsistent amongst physicians.
One night on call in the Emergency Department, I received a consultation from the Emergency physician about a patient just like my Grandma. She was elderly, and from a LTC with a co-existing diagnosis of advanced dementia, and was presenting with symptoms suggestive of pneumonia. The referring doctor indicated to me on the phone that the patient indicated a preference for “comfort care”, and my colleague proceeded to tell me he had initiated intravenous fluids, antibiotics and hourly vital signs checks. I inquired about the details of the discussion with her family around the specifics of her care, and if these treatments were explicitly requested (since they are not typical of comfort care). My colleague indicated that he didn’t really know what “comfort care” actually meant, and thought it simply meant “non-invasive” care (i.e. no CPR, intubation, ICU transfer), which is why he used it in our conversation. Even hospital order sheets that are used in a patient’s chart to identify their expressed goals of care can differ in the details of what constitutes Do-Not-Resuscitate (DNR) versus end-of-life or comfort care.
All of this uncertainty around Goals of Care conversations leaves physicians, our patients and their surrogate decision makers equally as uncertain about how to proceed with specific treatments. In some cases, an à la carte menu of therapeutic options is presented and patients are asked to choose from them. These improperly guided discussions can create the potential for patient harm through the creation of ‘partial DNR’ orders with questionable therapeutic benefit.
The solution to minimizing uncertainty in Goals of Care discussions is likely even more complex than the nature of the discussion itself. First, an evidence-based set of national standards needs to be created around the specific components of a Goals of Care conversation to guide physicians in conducting them. This will help create a framework in which to determine if these standards have been met. Establishing a clear definition for each of the different categories of goals of care (e.g “full code”; “DNR”; “comfort care”) and ensuring that these are used as standards across the country are likely paramount to minimizing confusion and variability in patient care in this domain. In the United States, this is being done through the Physicians Orders for Life-Sustaining Treatment program. Second, more research is needed that focuses on evaluating effective ways in which to teach physicians how to conduct these discussions and the impact it has on end-of-life care. Finally, continued efforts in educating physicians about how to conduct these discussions, including its integration into the national curriculum for medical schools and residency training programs will be a critical part of this process to help provide high-quality, patient-centred care for an increasingly complex patient population as they near the end-of-life.
I often wonder what the nature of the discussions my Mum and Aunt had with Leisureworld’s physician, and what recommendations he or she made regarding my Grandma’s care. Thankfully, she died at home and in no apparent distress. I only hope the same can be said for the millions of other Grandmas who live in Canada.