Berks County Medical Society Medical Record Summer 2018 - 18

m E d i C a l r E C o r d F E at u r E

Have You Had the Conversation Yet?
Will You Have the Conversation?
by Daniel B. Kimball, Jr., MD, MACP

A

mong Woody Allen's famous quotes is the one about dying,
in which he offers, "I am not afraid of dying, I just don't want
to be there when it happens!" This statement is reflective
of many of our attitudes about talking about death or dying. It is
reflected in obituary statements in our local newspapers that seem
to prefer the phrase "passed away," instead of died, when reporting a
person's death. Ellen Goodman, a Pulitzer Prize winning journalist,
and co-founder of The Conversation Project (TCP), reminds us in
her TED Talk that the ultimate mortality rate for all of us is 100%,
but despite that recognition, we refuse to discuss the topic. She
tells us in that talk, "My mom was one of those people who could
talk about your problems until you were bored with them. We
talked about everything except one thing: how she wanted to live at
the end of her life." When Ms. Goodman was called on to make a
medical decision for her moderately demented mother, she realized
they had never had a conversation about her mother's wishes for
care in such a situation. It was out of this experience that The
Conversation Project was founded.
The Conversation Project (TCP) is a public-awareness
campaign whose goal is "To make it easier for all of us to initiate
conversations about dying," the thesis behind the goal being "It
is time to share the way we want to live at the end of our lives; it
is time to communicate about the kind of care we want and don't
want for ourselves." The ultimate aim of TCP "...is that everyone's
end-of-life care wishes are 'expressed and respected'." The project
is now organized under the Institute for Healthcare Improvement
(IHI) in Cambridge, MA.
Ms. Goodman emphasizes that this is not an easy conversation
to initiate, and I would heartily agree. This is not a specific
conversation I had with my parents, but fortunately my sister and
I were in pretty good agreement about our understanding of what
my father wanted as he was approaching the end of his life since
he had shared with us that he was tired of having to go to the
hospital or hospital emergency room. TCP offers a "conversation
starter kit" for having the conversation and points out that the
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first step may not be a conversation, at all, but an opportunity for
each of us to clarify our values as they are related to end-of-life care
issues. So, before having the conversation "What do you need to
think about?" do you have any specific concerns that should be
reflected in the conversation? As Ms. Goodman notes, it is about
figuring out "what matters to me, rather than what is the matter
with me," so finishing the sentence "What matters to me the most
about end-of-life care is ...." might be helpful in preparing for a
conversation with a loved one or significant other. How do we feel
about the quality of our lives versus the quantity of our lives? Do
we want to live as long as possible, no matter what interventions
are required, or do we want the emphasis for our care at the endof-life to be on comfort? If we could not make decisions for our
own care, whom would we want to make those decisions for us?
Does that individual know what we would want? For some of us
the first steps in this process may be a written letter to ourselves,
a close friend or relative with an expression of what matters to us
most. The starter kit asks several "values clarification questions"
that allow us to be introspective about our values and what matters
the most and suggests that we summarize that exercise by choosing
three values that are most important to us about end-of-life care.
We then might choose to share that information with others,
particularly those that we choose to serve as healthcare proxies
(health care agents in PA). Other preparatory questions might
include the Whom, When, Where and What questions related to
the conversation. With Whom should we have this conversation?
When should we have the conversation? Where should we have
the conversation, i.e., "kitchen table" or elsewhere? What do we
want to be sure to convey in that conversation, i.e., our three most
important values previously identified?
TCP recognizes that starting this conversation is not likely
to be easy for most of us, and suggests some "ice-breakers" to aid
in initiating the conversation. Many families have stories about a
"good death" or "hard death" in their extended family members and
may be willing to share how they want their own death to be similar
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Berks County Medical Society Medical Record Summer 2018

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