Tuesday, October 10, 2017

When your hospice medical director is a useless idiot...

I once had the misfortune to attend a series of hospice interdisciplinary group (IDG) meetings featuring a retired internist moonlighting as a hospice medical director. He was bound by the 3-S credo, “Show up, shut up, and sign.”

In other words, the guy had no business being in the role, but the organization required his uninformed acquiescence, since their default operating mode was, “Just sign them on, we’ll figure out the rest later.”

Meanwhile, the clinical staff were without guidance and out of control as patients and families got wildly inconsistent, and generally lousy, care. The clinical staff lurched from crisis to crisis, and the most attention on any given day went to the patients and families who were in the deepest trouble.

In the course of each painful meeting, case managers would inevitably describe patient behaviors like, “Restless and agitated,” “Wife says he’s more confused,” “Awake at night, trying to get out of bed,” etc.

Whenever that happened, I’d gently try to suggest that they were describing behavior consistent with delirium. The response was usually a blank stare or pushback. “No, he’s just confused.” “The family doesn’t want to use haldol.” “I told them to give him some ativan.”

It was a troubling situation.

One day at IDG, after yet another disturbing report on a patient and family deep in suffering, the medical director turned to me with a smile and said, “I think this is where Jerry starts talking about delirium again.”

Ha, ha ha.

Maybe my experience was an outlier, and no other hospice employs a physician who doesn’t know anything about serious illness and care at end of life, or if they do, he or she isn’t reluctant to pick up a journal or do some basic CME.

I hope so, anyway.

However, if you find yourself in such an unfortunate situation, and have the kind of interpersonal tact that can allow your helpful suggestion to be heard by a physician, consider turning them on to the following two videos featuring David Meagher.

Part 1 (10 minutes)

Part 2 (19 minutes)

Thursday, October 5, 2017

Death talk, gender, and what Susan taught Atul

I spoke with a friend recently about her parents. She’s been closely involved in their care, including as their designated healthcare proxy.

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):

  1. What do you understand about your disease and what it means for the future?
  2. What’s your greatest fear?
  3. What’s most important to you?
  4. 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.”
Talking beats not talking, though talking with men may be more challenging. Having effective therapeutic conversations requires skill and practice. This work is hard.