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.