Some people with HF
are at risk of sudden cardiac
arrest (SCA), for which the
treatment is an ICD placed in
their chest. The ICD’s job is
to shock the heart should it go
into a dangerous rhythm. “It
has been shown that ICDs can
help people with HF to live
longer,” Allen said.
But what if the patient
is 85 with numerous
complicating conditions, like uncontrolled diabetes or
kidney disease requiring dialysis or emphysema as a
result of smoking for years?
An ICD treats one possible consequence of advanced
HF, but it doesn’t make the HF any better, nor the diabetes
or emphysema. “The ICD may keep the patient from exiting
this world suddenly,” Allen said. “But it may also take away
the opportunity to die in their sleep and actually makes it
more likely that they’ll die in the hospital as their symptoms
continue to worsen. Perhaps for that patient the thought of
Should the patient have the device implanted? Often this
decision comes down to quantity of life versus quality of life
because the treatment that may prolong a person’s life may
also have serious consequences for the quality of that life.
It’s a decision that ultimately only the patient can make. But
doctors clearly have a role in helping patients evaluate their
situation and fully understand all of the risks and benefits of
treatments and alternatives.
What makes life worth living?
The journey through HF is fraught with emotions for
patients and their families, and those emotions come to
the fore as decisions have to be made. How does a patient
come to clarity?
Jean Kutner, M.D., professor of medicine at the
University of Colorado School of Medicine, suggests that
patients benefit from thinking about what’s important
to them long before they have a conversation with their
doctor. Your doctor has pertinent clinical information, but
only the patient knows what he or she values.
Before you get to the quality vs. quantity question,
there is a vital question — what makes life worth living?
That is very individual and spans a spectrum. “It’s very
common for patients to say, ‘I’m not worried about my
own suffering. I’m worried about my family, my loved
ones, all those I’ll leave behind,’” Kutner said. “As long
as they know their family is okay, they’re okay with
dying. Others say ‘I’m willing to go through just about
anything to get to a certain event,’ maybe a graduation
or a wedding or birth of a grandchild. I’ve heard people
say that quality of life ‘is being able to eat what I want
and enjoy time with family. And if I’m not able to do
that, then it wouldn’t be worth it to me if I go through a
Kutner advises patients to step back and really think
about what gives them meaning day-to-day. This is
especially important when people are evaluating different
therapies — what is day-to-day life going to be like with
Starting the conversation: The family
It’s unrealistic to think that family members are not
going to get involved in these kinds of decisions. Kutner
says families most often come into conflict when there
hasn’t been a discussion about these issues beforehand.
“One of the hardest situations for everybody is if the
patient is not able to speak for themselves,” Kutner said.
“Then the family is put into the position of decision
maker for the patient, and if they have not discussed
the patient’s goals and values and what they would and
would not want under what circumstances, it leaves the
family making sometimes life or death decisions without
being fully informed. Have these discussions early on
and often to alleviate that burden on your family, so they
can truly say, ‘I know this is what my loved one would
want because we talked about it.’”
Like Allen, Kutner emphasizes the importance
of appointing someone to be your medical power of
attorney. She suggests choosing that person after you’ve
told them what you want and gotten their agreement. “I
always tell my patients to have the discussion first, then
do the paperwork. Don’t just appoint somebody — like
your oldest child — who you haven’t talked with,” she
HEART FAILURE CAN BE AN UNPREDICTABLE
DISEASE WHICH MEANS THAT THE MOST
CAREFULLY CONSIDERED PLANS ARE
CONTINUOUSLY RECALIBRATED BASED
ON HOW THE PERSON IS FEELING AND
RESPONDING TO THEIR THERAPIES.