MY LIFE Matters - Health Literacy - 35

sations
their scans. Other patients want broad
strokes and little detail. I find that patients
appreciate being asked specifically
how much detail they want. Understanding
a patients' health literacy is of
course important for all conversations,
and being mindful of this is even more
important when delivering bad news
that can be overwhelming.
With patients I know well, I have
already developed rapport and trust,
making these conversations a bit easier.
With patients I do not know well, I
always try to ask them about their lives
(where they live and who they live with,
do they work, do they have children,
hobbies, etc.) to get a sense of their support
systems and what is important to
them. Conversations about prognosis
and longevity also need to take place
longitudinally. Goals change over time
as disease and treatments change.
MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
35
COMMUNICATING WITH PATIENTS Health Literacy
Understanding your patient's goals is
essential to this process. Initially many
patients want to know " how long they
have, " and are clear that their goal is to
live as long as possible, no matter what.
Other patients are very clear that their
quality of life is the most important
factor to them. It is important to understand
what a patient means by quality
of life. For some, it is not to have any
pain, while others find nausea to be
completely intolerable. And another
patient might not be able to tolerate
neuropathy in their hands because then
they would not be able to play the violin.
Another patient might not ever be able
to accept hair loss from treatment, and
would rather live a shorter life than to
lose hair. It can be hard sometimes to
accept this, as a provider, but we have to
be careful not to impose our own values
on our patients. Again, patients' goals
can change over time, and it is important
to reassess as we go. When patients
understand that they have a terminal
illness, they will often start setting
shorter term goals, such as wanting to
live until their teenager graduates from
high school or wanting to be at their
daughter's wedding. Allowing patients
space and time to talk about this goal
setting over the course of their treatment
is invaluable.
I cannot overstate how important
honesty is in these difficult conversations.
We often cannot predict prognosis
in terms of time very accurately
for patients, but we can give ballpark
estimates that can get more specific over
time as we see how well they respond
to different treatments. Explicitly telling
our patients that we will always be
honest with them, even if the news is
difficult, is reassuring. I tell my patients
that if I am worried about them, I will
tell them I am worried. And I mean it.
I do not give false reassurances but try
to be gentle with information, always
keeping in mind what level of detail
patients are comfortable with.
I would be remiss if I did not acknowledge
that these conversations are not
only difficult for the patients and their
loved ones, but can also be difficult for
the healthcare provider. In reflecting
back on my early days in oncology, I
talked too much. I have learned that
sometimes the most important, but
hardest thing to do, is to stop talking,
which al lows the pat ient and their
loved ones some time to absorb the
information. Filling the silence is not
always helpful, but it is everyone's first
instinct. I have also needed to accept
and understand my own sadness and
necessity for grieving in my work. I have
the privilege of caring for my patients
often for many years allowing for longterm
meaningful relationships. This
makes the work so very gratifying and
rewarding, but it can also be painful. It
is important to have a supportive work
environment that allows some time for
self-reflection and conversations with
colleagues who share a similar burden.
Finding outlets outside of work that
contribute to self-care and help prevent
burnout is also vital. If we do not take
care of ourselves, we cannot take good
care of our patients. l
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