Can You "Care" Too Much?

December 2008:

We were in the 4C ICE Room (2:1 nursing) at the Stollery Children's Hospital in Edmonton with my son Russell, who was just a bit over 4 months old.  He was listed for a heart transplant at the highest status level.  He was being kept alive by a small mechanical pump that kept blood flowing to his tiny body, the Berlin Heart (shown below).  Yes...our plate was very full.

Russell: December 2008
Located in 4C: ICE - Stollery Children's Hospital
Waiting for a Heart Transplant kept alive by his Berlin Heart

In this room were 3 other children all less than a year old...Baby "M", "A", and "W"..  Two of them (Baby W and Baby A) were also listed for heart transplants and the 3rd  (Baby M) had an un-diagnosed genetic condition that made the rest of us look like we were getting off easy.  

These families were not the only one's we met when we were in hospital.  The interesting part of these 4 babies is that all 4 lived to go home from the hospital.  This was certainly not true of several of the children that we met.  It is why we have so many emotions related to our hospital journey at the Stollery.

Baby W was the first to get the call for a transplant, in early December.  Baby M moved to another room but hung around long enough so that our families could spend Christmas together.  Baby M has defied all odds and is hanging in there and we still stay in touch with Baby M's family.  We got our call for a donor heart just a couple of days before New Years.  That left Baby A who was still waiting for an elusive donor heart.

While we were recovering from the transplant surgery in PICU, in early January,  Baby A decided to join us in the ICU.  Baby A had a setback and also required a Berlin Heart.  We were once again beside each other.  Baby A's family was an immigrant family and did not speak any English and required a translator to talk to the hospital staff.  This is why we developed a real soft spot for Baby A.  When "A" joined us in the PICU I commented to his bedside nurse to be sure to take "extra care" with him as we were "looking out for him."  What was a casual comment was met with resistance and I was given a minor scolding about not getting caught up in what was going on in the next bed.  "Just worry about Russell" we were told.  I understood the intent of the comment.  We have enough on our plate and we shouldn't get emotionally involved with another patients journey.  It is true you can't obsess but you can show basic compassion and identify with what another family is going through.  In my experience the families we have met through our medical saga have been so beneficial and supportive of us I could never imagine cutting myself off from such a valuable support system.

I still wonder about Baby A and what became of this tiny bundle that we met in 4C ICE.  I still think of that ICU nurse; and her comments still bug me, but that attitude of closing yourself off emotionally is very pervasive in health care.  In fact, I have taken the exact opposite approach to what this nurse suggested.  I readily embrace other people's experience in health care.  We learn from each other and we support each other.  Perhaps this is just one more lesson that families could teach the health care system.  You can't "Care" too much.

In addition to the many families I have met in my medical experiences as a caregiver and a volunteer I encounter a tremendous amount of clinicians.  I get to observe how they cope with the triumphs and tragedies that their patients encounter.  Yes...to get to really know these patients on a more meaningful level is an emotionally risky proposition.  Not all outcomes are what we hope for.  That is the nature of the business.  However, getting to know your patients (really know them) can be such a life-affirming experience.  The benefits to building a relationship with patients is numerous.  It builds trust.  It makes difficult conversations much easier.  It becomes safe to ask questions.  It allows clinicians to bask in the successes...something that i think is so very necessary.  It also allows clinicians to acknowledge grief and loss.  Like it or not we are in this together.  We might as well work ....together.

Back in December of 2008 when we did finally get the call for our donor heart, we were called from our hotel.  We quickly made our way to Russell's room.  The reaction from the staff was tremendous.  I know Susan and I were still extremely nervous and cautious, but the staff were beaming.  They seemed more excited than we were.  There were "High 5's" and congratulations.  As word spread throughout the hospital we started seeing visitors come in who wished us well.  The outpouring of emotion was amazing.  It was genuine.  We had a whole hospital backing us up.  They had been there through the worst and they certainly not going to miss out on the success.  I wonder how many staff members went home that day feeling good about the profession they had chosen?

When you have an entire hospital supporting you;
You might feel a little like Sidney Crosby in this Tim's Commercial

How sad is it that so many Doctors and Nurses isolate themselves from their patients under the pretense of privacy laws and professional distance?  Furthermore, how many medical errors are caused by misunderstandings and miscommunication simply because no one bothered to ask the patient or family.  I know that dealing with some patients and families can be challenging.  However, give us a try...you might like us...we can be a lot of fun.  It's time to put the "care" back into health care.

After all we are the only measure of success that really matters.  Our success is your success.