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, reveals a new study by Queen’s University professor Daren Heyland.

“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 Dr. Heyland (Medicine and Epidemiology) who also serves as the director of the Clinical Evaluation Research Unit at Kingston General Hospital (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.

Because they aren't medically trained, it's difficult for patients and families to translate their values or preferences.

The study also showed that, even among the 85 per cent of patients and families who felt they had made the best possible decision about care, 57 per cent of that group also said they felt conflicted or uncertain while making their decision. Dr. Heyland confirmed the main source of this conflict was lack of knowledge about the risks, benefits and alternatives of various treatment options.

“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,” he explains. “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.

Dr. Heyland will discuss the results of this study and offer advice for those who wish to prepare for end of life decisions when he addresses the Kingston chapter of Dying with Dignity on Wednesday, Dec. 7. 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.