She talked about her roller coaster marathon over the last several years - finding a continuous care retirement community (CCRC), helping them make the transition, navigating the healthcare system as their needs have changed - particularly her father’s, and trying to anticipate what happens next.
She admits her privilege and good fortune - they’re just one town over from her home, money is not a problem, their CCRC experience is positive, and she’s able to enjoy time with them .
Her greatest difficulty has been in dealing with what she feels is the growing disconnect between how she sees her father’s health changes, and his own perceptions and understanding. To make a long story short, she’s aware of significant decline, is concerned about his safety, and wants to talk with him about further advance care planning. He thinks things are fine.
In the course of our conversation, she came around to the idea that his strong denial was serving a purpose and is unlikely to change, at least for now. “He’s always been big on control, and this is no different,” she admitted. Her current plan is to carry on and continue her attempts to initiate a discussion with her dad, using the framework to identify meaningful goals of care described in this short video featuring Atul Gawande:
Gawande channels Block - Four essential questions to help identify meaningful goals for care (adapted):
- What do you understand about your disease and what it means for the future?
- What’s your greatest fear?
- What’s most important to you?
- What tradeoffs are you willing to make, how much suffering would you endure, if it offered the possibility of more time?
As luck would have it, shortly after the conversation with my friend I learned about this article. It describes a study done in Iceland that identified significant differences around “death talk,” based on gender. Specifically, the study found that men are more reluctant than women to initiate a discussion with a chaplain about their impending death, and also less likely to enter into such a discussion even when the chaplain provides an opening using “non-provocative evocation methods.”
A few key paragraphs:
- “Every day, health care professionals worldwide face difficult discussions with terminal patients and do their best to conduct them in the light of their clinical training and clinical and personal experience.”
- “The need to explore gender specific communication style for expressing emotion has been explored in several studies. The results suggest that men’s expression of emotion may have been misinterpreted using women’s emotions as gold standard, thus sometimes interpreting men’s emotional signals as absence of emotion.”
- “The importance of “being with” dying patients is emphasized in Saunders’ pioneering work. However, because of lack of time and adequate training in having discussions with patients about their impending deaths, health care personnel may find it hard to live up to these expectations.”
- “...women appeared to be more at ease with expressing and discussing emotionally difficult subjects. Although most men may have similar needs to participate in emotional discussions, they seem more likely to need encouragement to do so.”
- “The main rule for high quality clinical communication is to always listen actively to how patients respond to open-ended questions and to reflect their answers back to them to offer a way to have a discussion on emotionally difficult issues, like their own impending death. Findings from a clinical study assessing acquisition and retention of evocation skills indicate that, although the theoretical principles behind clinical communication methods like Motivational Interviewing may be relatively simple and easy to understand, it takes considerable time and supervised training to achieve competency in the method.”