I was once asked to facilitate a conversation with Annie and her husband, Dave. Dave was suffering moderate dementia and was on a downward trajectory. He had written advance directives years earlier, and Annie wanted to try to ascertain if he felt the same now as when he had completed the papers. Previously, he had stated he did not want artificial prolongation of life. He was able to confirm this decision when we talked.

What struck me in this conversation was something Annie lovingly expressed. She was devoted to Dave. She had quit her job and was doing everything possible to keep her husband at home. She looked at me quietly, tearfully said, “I just hope his heart disease takes him. I don’t want him to suffer.” I want him to die before his dementia gets real bad.”

Unfortunately, this desire was not what had guided recent decisions about Dave’s medical care. A couple of months before, Dave had stents put into his heart for his coronary artery disease. His cardiologist did what cardiologists do; he restored circulation in the heart to keep Dave from having a fatal heart attack. Annie did not recall any discussions with the doctor regarding Dave’s previously stated directives for care. There was no conversation with her, as Dave’s activated (now officially recognized as making decisions) Health Care Agent, about what she believed to be his goals of care.

If their medical professionals do not ask the questions, people are reluctant to speak of goals that may not be in line with prolonging life in any way necessary. It is difficult to speak the wish Annie did, for Dave to die before things got worse. Yet, she said it out of the utmost love. Somehow, these feelings and choices must be heard and respected. People must be empowered to speak their truths. Medical providers must ask the questions and hear the answers. Only then do people have a chance of being given the care they choose for the end of their lives.

This is an excerpt from “Navigating Life’s Final Journey: Conversations, Choices, Resources” by: Patricia O’Connor

(Reprinted with permission by author.)

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