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I was going to write about what it is like to lose a parent in
medical school, but the more I thought about it, the more I
realized how far that was, fortunately, from most students'
experiences. So instead, I decided to write about what lessons I
learned over the last 12 years as a family member of a patient with
a rare terminal illness and hope that others can use these lessons
1) Trust your patients and their families: They know
themselves and their bodies far better than we do. From
"House, MD," to our physical diagnosis courses, to the wards, we
are taught that patients lie. I think that maybe that is what the
ER physician thought when we brought my father in on July 4,
2001-that his weight gain of 30 pounds in 1 month was exaggerated,
that his shortness of breath was not all that new, that the idea
that we never ever go to the ER was not all that true. Despite my
mother's insistence that this was not her husband's usual self,
that something must be wrong, the ER physician simply stated that
his new diagnosis of hypertension, type 2 diabetes, and shortness
of breath were merely the result of his weight gain and older age
(he was 46). He did a chest x-ray to appease us-it was negative, he
said. But if we had followed up with the official radiology report,
we would have known 2 months sooner that he had a mediastinal mass
that was producing ACTH and thus my dad's actual diagnosis was
Cushing's syndrome, a diagnosis that my mother, an R.N., eventually
made on her own.
2) Tell your patients the whole truth, even the parts
that may be frightening or that may elicit questions you may not
know the answer to. They'll trust you a lot more for doing so, no
matter what the outcome. "These masses are pretty much
always benign when they're in the mediastinum." I will never forget
the surgeon's words, which were followed by reassurances that our
nightmare was almost over-that my father who had transformed into
an obese, absent-minded, irrational person would soon return to the
father I knew. I will also never forget when he told us after the
surgery that, not only was it malignant, he did not get clear
margins and no one knew how to treat this type of rare cancer. All
the hope that we had had fell away as our world crumbled and he was
given less than a year to live. This was not even a possibility
before the surgery. While he did not tell us a complete lie, he
didn't give us the truth either. We never saw him again.
3) While you may not be able to provide a cure, you can
always treat the person behind the disease-something no machine or
drug could ever do. My dad's primary oncologist
specialized in his rare type of cancer. He was honest with us about
the dismal prognosis but also never gave up finding other methods
of treatment. He gave us his contact information, including his
cell phone number, and urged us to call any time with questions. I
think we called the oncologist twice in 10 years outside of normal
business hours, and only when my father was in the intensive care
unit (ICU) at a hospital that did not know his diagnosis or
treatment plan. We are taught to close ourselves off from patients,
never to give out our emails or phone numbers. But I will tell you
that, as a family member, knowing that I could call him was enough
to trust him completely. He understood that treating our family was
just as important as treating my father. He also understood that,
even though a cure was not possible, treating our emotions, working
hard to get insurance approval for medications, and making himself
available to us was, in fact, treating my father.
4) When a patient who you are close to is saying
goodbye, it is, in fact, okay to cry with them and their
family. The last time my dad was admitted to the ICU, his
pulmonologist came to speak to us the morning after I had arrived.
I knew immediately what she wanted to discuss. I asked her if she
minded if I had the conversation with my father, and she nodded. I
squatted down in front of his chair where he was resting his head
in his hands, exhausted. I simply asked what we are trained to
ask," What is your understanding of what's going on, Dad?" His
reply was simple and yet heartbreaking, "I am getting ready to pass
on." I tried to hold back the tears that were streaming down my
face as he confirmed that he wanted to go home. And as my mother,
father, and I cried, his pulmonologist, and now friend, cried too.
Prior to this, I would have told you that it was never okay to cry
with patients-I was wrong. It was more than okay; it showed she
cared as much as we thought she had.
5) There is nothing you can say that will make a family
member who has lost someone close to them feel any better, but the
words you do say can mean very much anyway. My dad's last
days were spent in home hospice surrounded by family and friends.
He died Christmas Eve and his doctors called to express their
condolences. They talked about what a special man he was and how he
had touched their lives. People said a lot of things that were
meant to help but actually made things worse. "He's in a better
place now." "At least he's not in any pain." "I know exactly how
you feel." However, the best things were said by people who spoke
of who my dad was, what he had meant to them, and how much they
will miss him.
Christin Giordano, PA-C, MS2
University of Central Florida College Medicine, Class of 2016
March 2014 Issue of IMpact
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