Hayes recognizes that few topics are as challenging for healthcare providers to have with patients as end-of-life care. Patients and their relatives may be reluctant to accept a grim prognosis, and it is only human for physicians to dread being the harbinger of bad news. Nevertheless, evidence shows that quality of life increases when patients express their own care preferences to providers and when those preferences are followed. Unfortunately, despite nationwide efforts to improve end-of-life care, these conversations are still not occurring as often or as effectively as they should, with dire consequences for seriously ill people. In fact, the results of 1 study show that patients are actually experiencing more rather than less pain, depression, and other alarming symptoms during their last year of life.
What prevents providers from having these end-of-life discussions? Canadian researchers surveyed clinicians in Canada and identified numerous barriers, including:
- Difficulty for patients in accepting a poor prognosis
- Difficulty for patients in understanding the limitations and complications of life-sustaining treatments
- Disagreement among family members about goals of care
- Patients’ incapacity to make goals-of-care decisions
Other evidence shows that even when patients have articulated their preferences to family members, these advance care directives haven’t been put in writing and providers haven’t been informed of them.
So what can we do to ensure that these important conversations are taking place among the people who need them the most? Several resources are out there. The End of Life Network (CARENET), based in Canada, published an article described as a road map for discussing goals of care with seriously ill patients (click here). Similarly, a U.S.-based organization has designed an advance care planning program called Respecting Choices® (click here).