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 “It’s easier to avoid the conversation, which is rarely a brief
one,” said Dr. Cari Levy, a professor at the University of Colorado
Anschutz Medical Campus in Aurora. “Our systems are not designed to
allow for meaningful conversations that may take some time.”
Levy, a palliative-care physician who routinely discusses
end-of-life questions with her patients, believes that confronting
death can be empowering.
“We should not fool ourselves that protecting them from these
discussions is in their best interest because we don’t want them to
lose hope,” Levy, who was not involved with the study, said in an
email. “It’s hard to have hope when you’re mired in a cloud of
anxiety. Clarity comes with control, and patients report feeling
more control when they talk about dying and death.”
Lea Jabbarian, a public health researcher at Erasmus University
Medical Centre in Rotterdam, The Netherlands, led a team that
searched electronic databases for research on advanced-care planning
in adults with chronic respiratory diseases.
Ultimately, the researchers looked at data from 21 earlier studies
involving nearly 2,000 patients with chronic lung diseases.
In one of the studies, 99 percent reported being interested in
discussing end-of-life care preferences, Jabbarian and colleagues
report in the journal Thorax.
In another study, focusing on chronic obstructive pulmonary disease,
68 percent of people reported being interested in engaging in
conversations about the subject.
But when investigators asked chronic respiratory patients if they
could recall discussions about end-of-life care with their
healthcare providers, only 12 to 32 percent said they could.
Similarly, when researchers asked healthcare professionals if they
had engaged patients in such discussions, only 20 to 33 percent
reported doing so.
“We see that both patients and healthcare professionals want to have
these conversations, but they only happen quite rarely,” Jabbarian
said in a Skype interview. “We need to provide the right training,
the right environment to allow these conversations to happen.”
“It’s really not that easy, and that’s why the healthcare
professionals need all the support to engage in these discussions.
We do have to acknowledge that life is going to end at some point,”
she said.
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Healthcare professionals identified time constraints and fear of
taking away patients’ hope as barriers to engaging in conversations
with patients about their end-of-life care preferences. Other
barriers included a “cure-at-all-costs” ethos, a lack of training
for communicating about end-of-life care options and a failure to
identify whose role it was to initiate a conversation.
“Who’s the captain on the ship?” Jabbarian asked. “It’s difficult to
take the responsibility.”
As a palliative-care doctor, Levy routinely opens discussions about
end-of-life care. Because she knows there is never a perfect time to
start the conversation, she advises healthcare professionals to
begin a dialogue as soon as possible.
“Do as your mother did and rip off the Band-Aid – the anticipation
is the hardest part,” she said.
She listens for openings in conversations, like when patients say
things like, “I’m so tired of being sick,” or “I didn’t know if I
would ever get well again after that last time.”
The most important part of the conversation is taking the time to
hear what a patient has to say, she said.
But the most productive and revealing conversations about
end-of-life wishes often take place outside of hospitals and clinics
and around dinner tables, Levy said.
“I do think we place too much emphasis on making healthcare
environments the place for these conversations,” she said.
“Communities are a lovely place to talk about what matters most in
the event of illness. At the Thanksgiving dinner, the holiday
festivities when everyone is together, these are times to discuss
what matters to you.”
SOURCE: http://bit.ly/2AaHjUf Thorax, online November 23, 2017.
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