You can’t get what you want: Semantic barriers to end-of-life conversations

An opinion piece published in the American Journal of Respiratory and Critical Care Medicine discusses roadblocks in end-of-life care conversations held with patient families, with some analysis of why some conversational approaches are prone to failure and what can be done to improve the quality of conversation, and their outcomes, in terms of expectations and educating the patient’s family in a realistic, yet compassionate, manner. Many have already had such talks before, with families discussing probate in Seattle or nearer to them, but many have also not breached the subject before.

Specifically, the essay focuses on the use of the word “want” because its use can encourage undesirable results: (1) families may focus on treatment options (e.g., intubation vs. no intubation) rather than goals of treatment (e.g., patient comfort and quality of life); (2) the family may arrive at a decision on their own, without necessarily understanding tradeoffs and outcomes, missing the opportunity for better informed, shared decision-making between the healthcare team and family; (3) it may mislead the family into thinking they can have what they want (when it may not be realistic). Such language can cause difficulties when deciding on matters such as if the patient would be better in a Residential Care Facility or if home care would be viable, and other treatment options to ensure comfort during a palliative process.

The article offers alternative approaches and words, such as, “What would your mom say about her serious illness?”, or “What would she think about living with a bad stroke and broken neck?” in order to elicit a thoughtful analysis, rather than a more emotional response that the word “want” is likely to evoke.

ML Schwarze, TC Campbell, TV Cunningham, DB White, and RM Arnold “You Can’t Get What You Want: Innovation for End-of-Life Communication in the Intensive Care Unit”, Amer J Respir Crit Care Medi. 193:1(2016), 14-16. (limited access).