A Time to Talk
Encouraging conversations between clinicians and seriously ill patients
Navigating serious or progressive chronic illness is stressful for patients and their loved ones.
While many patients with serious illnesses want to avoid tests and treatments that have minimal benefit and may even cause harm, particularly at the end of life, some end up receiving them because their wishes are not known.
Choosing Wisely Canada launched a campaign that encourages conversations between clinicians and seriously ill patients. Taking the time to talk can help avoid potentially harmful or overly aggressive tests and treatments that may not align with a patient’s goals and wishes.
As part of the serious illness conversation, physicians should provide information about risks, harms, and benefits of proposed tests and treatments. That, however, is only one-half of the conversation, says Dr. Allan Grill, Chief of Family Medicine at Markham Stouffville Hospital and Lead Physician of the Markham Family Health team.
The other half of the discussion is about exploring what is important to the patient and the outcomes connected to their treatment options, as opposed to just a checklist of treatments (e.g., chemotherapy, admission to an intensive care unit). “People want to know what their life will look like and how it will be affected by their illness along with the treatments being proposed,” he said.
They might say, for example, they want to spend the rest of the time they have left with friends and family, and spend less time with doctors and health-care providers. They might say they want minimal pain and suffering, or they don’t want to be dependent on others for a prolonged period of time.
And throughout the conversation, the physician, while supporting the patient to explore their options, must also ensure the patient understands that with every choice comes a trade-off.
It’s a sensitive conversation, acknowledged Dr. Grill, but it also should be seen as a fluid conversation — one occurring over the span of the patient’s journey with their condition. Another important aspect of these conversations is identifying a substitute decision-maker, someone who the patient trusts to make decisions should they not be capable of doing so themselves.
Serious illness conversations should also be initiated as early as possible in the disease trajectory.
Having the patient learn about options and think about what is important to them should be done in advance as much as possible, not in the midst of a medical crisis. “Complex information is much easier to process when you are not in the middle of an emergency,” said Dr. Grill.
Knowing the impact this pandemic has had on the frail elderly, this past year has highlighted the value of engaging in these discussions in order to provide patients with the care they want in the event of a change in their health status. An early conversation about goals and values can give patients and their substitute decision-makers the opportunity to learn about and discuss the risks and benefits of treatment, including side effects, along with alternative courses of action.
Dr. Grill spent 15 years providing medical care for older Canadians, which has helped him identify and address the unspoken concerns at the source of these questions — specifically, fears about pain and suffering.
“With the early serious health impacts of COVID-19 on older patients in other countries, it reminded us of the importance of creating opportunities for dialogue, especially among this vulnerable group of patients. Health-care professionals have a key role to play in providing the information necessary about treatment options and outcomes to patients, and then support them as they come to a decision that aligns with their wishes and values,” said Dr. Grill.
Such conversations are also important because they can explore preferences for places of death. Most Canadians want to die at home — recent surveys have put the number as high as 75 percent. But Canada has one of the highest utilizations of acute care at end of life. This suggests, says Dr. Grill, that the care people receive at end of life does not necessarily align with their goals and wishes.
Talking about wishes for the care that one wants at their end of life can be difficult and many clinicians report feeling ill-equipped to start the conversation. A national survey found that only 26 percent of practising primary care physicians are comfortable leading such discussions with their patients and 67 percent believe they need more resources in order to do it well.
To support physicians, Choosing Wisely Canada’s campaign provides physicians with four questions to help start serious illness conversations with patients. It also includes a serious illness conversation guide that offers language to help to explore sensitive issues with confidence.
In his own practice, Dr. Grill lays the foundation for serious illness conversations early. He starts asking healthy patients — as young as 20 — during periodic health assessments whether they have given consideration to the topic. These conversations, predictably, are often brief, but as the patient ages, they become more nuanced. More significantly, the conversations encourage the patient to think about loved ones who might benefit from these conversations and feel more comfortable having difficult discussions about end of life. One of Dr. Grill’s favourite quotes from his training in medical school is ‘Failure to prepare is like preparing to fail’ and it certainly holds true in this context. “We need to help prepare our patients by engaging them in these conversations because if we don’t, we risk that their medical care will be provided in a way that they never wanted. And that’s not acceptable.”
Serious Illness Conversation Guide
This guide offers clinicians language to talk to seriously ill patients about their goals, values, and wishes. The guide can help support more, better, and earlier conversations between clinicians and patients that can inform future care.
- Set up the conversation
- Introduce purpose
- Prepare for future decisions
- Ask permission
- Assess understanding and preferences
- Ask questions and listen
- Explore their understanding of illness progression
- Consider acceptability of prognostic information
- Share prognosis
- Share prognosis
- Frame as a “wish…worry”, “hope…worry” statement
- Allow silence, explore emotion
- Explore key topics
- Fears and worries
- Sources of strength
- Critical abilities
- Benefits and harms
- Location of care
- Close the conversation
- Make a recommendation
- Check in with patient
- Affirm commitment
- Document your conversation
- Communicate with key clinicians
Four Questions to Start Serious Illness Conversations with Your Patients
- What is your understanding of your current illness?
Patients want clear information about their condition, illness, and prognosis. These discussions are linked to effective shared decision-making.
- What are your goals and values?
Understanding and eliciting values from patients related to their illness or about the end of life can improve treatment plans and patient-centeredness.
- How much are you willing to go through for the sake of added time?
Conversations about prognosis, goals, and outcomes can inform decisions about life-prolonging or life-sustaining treatments at the end of life.
- Have you documented your wishes and shared them with a health care decision-maker?
Having a trusted person who understands and is aware of the patients’ goals are associated with better outcomes.