New advance care planning tool aims to support patients and families
A new advance care planning tool developed by Sinai Health System’s Bioethicist Peter Allatt in collaboration with colleagues from across Canada may help patients and families make decisions in the event of a serious illness.
In his role, Peter often consults with substitute decision makers who need to make care or treatment decisions for patients who are no longer capable.
“When illness or injury makes it impossible for patients to decide about their own care, we advise family members to make decisions based on what they think the patient would want. It’s not unusual,” says Peter, “for family members or substitute decision makers to feel unsure of what the patient would want. In some cases they may have had conversations about whether to continue life support after serious trauma, but many other questions about care and treatment may arise.”
Peter says he found existing tools were either narrowly focused on specific illnesses or had not been clinically validated. “I saw the need for a tool that would support advance care planning by helping individuals clarify their values around quality of life and life-limiting illness. Values underlie all health care decisions. Discussing the patient’s values with the patient helps both patient and substitute decision maker with decisions down the road.”
In collaboration with colleagues, Peter developed a values history tool that guides patients, families and future substitute decision makers through these conversations with worksheets. Although the tool is designed to apply to any serious illness, it prompts conversations about values and quality of life by asking about hypothetical situations. Patients are asked, for example, how they would feel about their quality of life if they had chronic pain, or if they needed assistance with bathing, toileting and eating. The worksheets are written in plain language and accompanied by graphics so that families can use them in their own time in a setting where they feel comfortable.
Clinical trials across the country evaluated the validity and acceptability of the new tool. In February Peter and his colleagues published their first paper in the British Medical Journal Supportive and Palliative Care. Results are promising. “The tool helped clarify patient values and helped both patients and substitute decision makers feel less conflicted about health care decisions. We’re looking forward to further studies of the tool in clinical settings.”