We rely on them to give us the straight facts – but doctors appear to be avoiding discussing one uncomfortable but important topic with patients: how we want to die. The ACCEPT study, an ongoing project that examines care for ill, elderly patients in twelve acute care hospitals across Canada, has revealed a number of barriers to end of life discussions between doctors and patients – with the result being that many patients are receiving treatments that they don’t necessarily want or need.
“Although most elderly patients prefer only comfort measures at the end of life, life-sustaining technologies are increasingly being used in the final stages of life,” says Dr. Heyland, a Principal Investigator in the ACCEPT study. “It’s clear that there’s a communication problem between doctors, patients and their families.”
Results from the study, published in the April 2013 issue of the Journal of the American Medical Association (JAMA) Internal Medicine, found that the correct patients’ preferences for end of life care showed up in their medical records only 30% of the time. For example, even though 28% of the studied patients stated a preference for ‘comfort care’ (no life-sustaining treatments), this was documented in only 4% of their charts.
Many of the patients interviewed felt that information to help them determine their preferences for end of life treatments was either lacking or not clear. “I didn’t know what he (the MD) was saying when asking me in the ER…. Do I want CPR,” recounted one study participant. “He asked with no explanation. I said sure if it works. He put down YES on the form but then told me it probably wouldn’t work and I would have brain function problems. Good God! I don’t want that! Give me the information first, then ask the questions.”
“I don’t have enough information about his condition, what to expect and how long he has,” recounts one family member in the study. “I am trying my best but I don’t have a medical background and I am alone in all this decision-making and feel overwhelmed.”
Advance Care Planning – a process of communicating your wishes for end of life care and naming a Substitute Decision Maker to speak for you if you are unable to do so – represented another area of missed opportunities for conversations about care. Although nearly 48% of the patients had completed an advance care plan and 73% had named a substitute decision maker, only 30% of them had told their physician about it.
Dr. Heyland is also currently involved in a CIHR funded DECIDE study, a complementary project to study advance care planning and end of life discussions from the perspective of health care providers. He has also worked with the Advance Care Planning in Canada Project to develop a “Just Ask” conversation card to help physicians and their patients talk about end of life care. “We know that a significant number of ill, older people are already thinking about their future health care decisions,” says Dr. Heyland. “But they are waiting for their doctor to engage in that conversation with them. And the conversation needs to be clear, so that patients and family members can make an informed decision. We need to figure out how to get that conversation started.”