Newswise, December 18, 2015 —Few things are as certain
as the end of life, so why is it so hard to talk about?
That’s the question many families
will be grappling with as they get together over the holidays with extended
families, including close relatives who are getting on in years or those
battling a serious health issue.
While it’s easy to put off dark
discussions during festive times, it’s best to have them sooner than later,
said Brian Carpenter, a psychologist who studies family relations in later life
at Washington University in St. Louis.
“These conversations bring up the
possibility that someday these important people in your life are going to be
sick or frail and eventually, one day, die,” said Carpenter, PhD, associate
professor of psychological and brain sciences in Arts & Sciences.
“For people to imagine that, first
of all, is uncomfortable. People don’t like to think about people they care
about being infirm or more dependent than they are right now.”
Carpenter, who teaches courses on
death and dying and the psychology of aging, says most families wait until some
sort of crisis or emergency to talk about necessary topics like healthcare,
housing preferences, financial planning, general values, and final wishes for
family members who are older or ill.
At that point, difficult decisions
have to be made quickly, and families experience a huge amount of stress. This
heartbreak could be avoided if expectations and preferences were communicated
earlier on, but many families avoid the topic, he says.
As part of his research, Carpenter
has been building tools to help families talk about aging and end-of-life care.
His laboratory recently completed a pilot study with about 55 families meant to
evaluate an online tool for generating these types of discussions. Having the
process online meant that families with children scattered around the country,
and even the world, could still participate.
Based on his research, he offers
advice on five topics that families facing aging or end-of-life situations
should be sure to discuss. According to Carpenter, it’s helpful to start with
four big categories: housing, medical care, finances, and end-of-life.
Whether the conversations happen
over dinner, online, over the phone, or on the couch, families should get
comfortable discussing a range of questions from these four areas. Here are a
few examples.
- Housing. Are you happy where you live? If you couldn’t
live here any longer, where would you want to go? Would you want to live
with family? With friends? Nearby? Far away? What type of housing would you
prefer?
- Medical
care. If you were in a difficult
medical situation, what treatments would you not want at all? How do you
feel about your ability to tolerate pain versus taking medication that
might help you feel less pain, but also less alert?
- Finances. What are your investments, assets, and
liabilities? Where are your financial records located? Who would you like
to have involved in managing your finances if you couldn’t do that for
yourself?
- End-of-life
decisions. What do you
want to have happen to your body after you die? Do you want to donate your
organs? What kind of service do you want? While these details provide
helpful and necessary information about a person’s wishes, Carpenter has
found that a fifth, more abstract category is equally important to
discuss.
- The
big picture. In order to have
a meaningful conversation about death, it really helps to discuss what
makes life itself meaningful. How do you think your life is playing out?
What would be important to you as you approach the end of your life, in
terms of how, with whom, and where you spend your time? What do you want
to try to accomplish before you die?
“If talking meaningfully with your
family and friends are a really high priority for you, and if you can’t do that
any longer and that changes how you think about the quality of your life,
people need to know about that,” Carpenter said.
“The idea is that people can’t talk
about every possible scenario, because we can’t predict everything. Barring
that, it’s better if people just know who you are and what you want, so down
the road they can make choices for you that are consistent with what you would
want.
While it’s not possible to predict
everything that’s important to be discussed in these conversations, it’s
important that family members know who you are and what you want.
“At the end of these interventions,
people say that they feel, in some cases, more knowledgeable about what their
family members want and what they prefer,” Carpenter said. “But more important
to us, they say they feel better prepared to talk about them in the future.
That’s really the outcome that we care most about. That’s what we’re hoping
for.”
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