Uncomfortable situations where you aren’t really sure what to say
next. They happen all the time. Something is said or done that makes you
pause for a moment and say to yourself “what do they mean by that?” or “who do you think you are?”
For the past few years, as we have gotten to know our
medical providers. We’ve had that
awkwardness surface a few times.
Relationships are changing in health care. I think that is a good thing. However, as we redefine the relationships
with our health providers we enter uncharted territory. What’s appropriate? How much of ourselves do
we emotionally invest in these relationships?
How much is too much? Let me
explain.
As a patient you are frequently being put in vulnerable
positions. Emotionally and
physically. Our personal space is
invaded by poking and probing, often in areas we consider “private.” Medically necessary? Yes. Awkward and uncomfortable? Definitely.
However, this isn’t new.
What is new and even more complex to deal with is the emotional and
social side of the patient-provider relationship. Over the years we have become very attached
to our care team. It is much more than a
sterile professional relationship. We
have opened up to each other and shared ourselves. This has been a two way street. I have met some of our Doctors spouses and
children. They have shared their own
stories of the challenges of being a parent.
We’ve also shared many laughs. This
has made a huge difference to us as we have grown to appreciate these people
for the people they are and not just a title or position. However, there are limitations to this
relationship. There must be some professional
boundary; but where is that boundary?
What is appropriate? The truth is
that these can be high risk relationships.
Several years ago I was exchanging emails with another
parent of a heart kid, as it turned out another transplant kid. We had been introduced to each other by one
of our Doctors. It was this Physician’s
informal version of peer support. Over
the next few months this Dad and my paths would cross related to some issues
going on in the hospital. We would
communicate semi frequently, via email, as their daughter encountered some
significant challenges. It was difficult to read his string of emails as their health care journey
progressed. His daughter was admitted to
hospital and steadily declined. Many of
the Doctors and Nurses that he knew, I knew as well. We would talk about them by their first name. We had a relationship with them. They were a part of our family.
Then eventually the email came that I was dreading. His daughter had passed in the ICU in
Edmonton. It was gut wrenching to read
as the feeling of helplessness and grief consumes you. A few weeks passed and we once again
exchanged emails. I recall an email he
sent to me that described how alone and abandoned he felt. When his family was in hospital they had
support. They had a team who was
coaching and encouraging them. They had
a bond, in his daughter, who they were ALL caring for so diligently. They were unified in their purpose. When his daughter passed there was no reason
to go to the hospital anymore. His team
was gone. He told me in his email that
he felt like he wasn’t part of the club anymore. He even stated that it extended beyond the
medical team. He had been active as a
parent volunteer and was involved in hospital activities. Now, that too felt like it was gone. It was tough to read but I understood exactly
what he was talking about.
I too have felt this awkward distance from our health
providers. When Susan and I celebrated
our 25th wedding anniversary, last fall, we spent considerable effort
in determining the guest list. It became
very apparent to that there was a gaping hole in that list. There were 5 or 6 names that could have been
added to that guest list, that were absent. A few key members of our medical team who have spent the better part of the last 10
years with is through some of our most tumultuous moments. It was also striking to think how integrated
these people have become in our lives.
They really have become friends and family to us but yet there is that
illusive “barrier” that exists. That
professional distance that must remain in place.
I raise this issue for two reasons.
One, I think the closeness and camaraderie we feel with the
people who look after our medical needs is phenomenal and has benefitted us
immensely. I would never discourage that
relationship, provided that it is a healthy relationship. Which brings me to my second point.
For this to be a healthy relationship there does need to be
boundaries. For there to be boundaries
these issues need to be discussed. This
should all be part of the education that patients receive as they journey
through the health care system. Yes, we
should learn about the technicalities of our illnesses, the medications, and
the treatments…but there is a social and emotional component that is also
extremely important. You need to have a
life. A life outside of the
hospital. You can’t cut yourself off
from your community. Your supports. Your family and friends who may have a
difficult time relating to what you are going through and may not understand
the biological/medical nuances of your experience. This is a far more difficult balancing act
than it may seem. The bottom line is
that we all hope to put our illnesses behind us, and once we do and re-enter
normal society we have to be prepared for that as well.
A difficult transition for many.
