Patients’ stated values not always reflected in their choices for end of life care, study shows

News / Education / Patient & family Centred Care / Research / Critical Care
By Mary Anne Beaudette, KGHRI

Nov. 24, 2016

There’s a disconnect between patients’ and families’ stated values about end of life, and the medical treatments they choose when the time comes to make those hard decisions, says a new study by a Kingston General Hospital critical care physician.

“The driver behind our study was our belief that patients or their families aren’t well enough prepared to make those “in the moment” decisions about specific treatments or procedures at end of life that are in keeping with their overall values,” says Daren Heyland, a Professor of Medicine and Epidemiology at Queen’s University, and Director of the Clinical Evaluation Research Unit at KGH.

His study, which surveyed 513 patients and family members at KGH and 11 other hospitals across Canada, showed that what patients and families say they want at end of life – for example, to be comfortable and suffer as little as possible – often isn’t  reflected in their preferences for medical treatments at the end of life. The study also showed that even among the 85 percent of patients and families who felt they had made the best possible decision about care, 57 percent of that group also said they felt conflicted or uncertain while making their decision.  

The main source of this conflict was lack of knowledge about the risks, benefits and alternatives of various treatment options, Heyland says. “Because they aren’t medically trained, it’s difficult for patients and families to translate their values or preferences – which are usually made in isolation of a clinical context – into specific treatments. Also, they may not understand that in choosing treatments, there are tradeoffs that may be in conflict with their values.” 

The answer, he says, is to improve the quantity and quality of tools and resources used by patients and families to plan for a time when they can’t make decisions for themselves. The study also showed health care professionals must assist in that process by talking to patients and families about their values, helping them resolve competing or conflict values, addressing their fears and concerns, and by guiding them towards the best decision that is right for them.

Better decision-making can enhance quality of life for dying patients, improve the experience for their families, and decrease health care costs, Heyland says.  

Kingston residents will be able to learn more about this study, and how they can better prepare for end of life decisions on Wednesday, Dec. 7, when Dr. Heyland will address the Kingston chapter of Dying with Dignity. The event, “To Die Well, Plan Well: Quality Communications at End of Life” takes place at the Seniors’ Centre, 56 Francis Street, Kingston.

Dr. Heyland is chair of the Canadian Researchers at the End of Life Network (CARENET), which has developed numerous tools and resources for advance care planning, including the Speak Up Campaign and Just Ask Campaign.