Charlie Gard: A Matter of Trust

A complex medical ethics case has been playing out in a Children’s Hospital in London England.  Charlie Gard was born last August with a severe genetic disorder which affect his brain, muscle and ability to breathe.  In addition he has congenital deafness and suffers from severe epilepsy.  His parents, Connie Yates and Chris Gard were seeking to get treatment for their son outside of England, against the advice of the hospital’s medical team. 

This week it has been reported that Charlie Gard’s parents are ending their legal battle to seek treatment outside of the UK.  It seems this story is coming to an end.  A very grim end.

The hospital in the situation had sought a court order allowing them to turn off life support.  This has raised the issue of what a parents rights are in relation to their child’s care.  The parents, in this case, were doing what many parents posed with this tragedy would do, they would advocate for their child to the best of their ability and explore every viable treatment option.  The hospital is also trying to act in the best interest of the child and in their best medical opinion to mitigate the suffering of an infant that in their best medical opinion would not likely survive.  In their view, keeping this baby on life support would just prolong the inevitable.  Both perspectives are compelling and this case has sparked a furious debate over the future of this child. 

Syndicated columnist Charles Krauthammer, in a recent interview weighed in on this debate with some succinct and credible insight.  Credible in the sense that Krauthammer is a trained physician who also happens to be a paraplegic.  Dr. Krauthammer, provides a unique perspective through his medical training and lived experience.  Krauthammer’s opinion is bluntly stated “The merciful thing to do … would be to remove the tubes and allow the child to die, and to end the suffering.”  However, Krauthammer did not stop there.  He unequivocally stated that his personal feelings aside,

 "The decision to remove life support must be the decision of the parents."  

In spite of the fact he disagrees with the parents, the right to make this decision lies with the parents.

This issue strikes very close to home for me and my family as my own son hovered precariously near death only a few short years ago.  We had to sign waivers and give consent to treatments that were considered “experimental.”  Some of those treatments did do harm, harm that we are still living with to this day.  Those treatments that did harm also saved his life.  This is a massive burden for any parent and my heart goes out to the parents of Charlie Gard.  The burden is made even more difficult by the fact that these parents have to not only battle their own emotional conflict but also advocate against their own medical team. 

In patient advocacy circles we often talk about working collaboratively with our health care providers.  This means we work together to share information and come up with carefully considered and well thought out decisions.  In our medical journey, we had some fabulous clinicians who went to great lengths to explain our son’s situation and the pros and cons of every treatment strategy.  After several weeks in the intensive care unit we knew implicitly who was working with us and who we could trust.  “Trust” is extremely important in the health care environment.  We saw parents who went through the process of being told “there is nothing more we can do.”  We saw them devastated by that pronouncement and we prayed that we would never have to face that reality.  We were lucky.  We had a successful outcome.  Did we always agree with our care team? No.  Did they respect our opinion and give us the final say? Absolutely.  Could we have made the decision to remove life support … thankfully … we will never know; but the bond we built with our care team leads me to believe that we would have given them (our care team) the benefit of the doubt given their demonstrable support for us and our son.

It is clear to me that the trust between Charlie Gard’s parents and his care team was at some point broken or this protracted conflict could have been avoided.  We all may have some opinion on whether it is right to turn off life support in this situation.  However, it is not our decision to make.  Unless the parents are not competent to make a decision; the decision should remain that of the parents.  A decision made with competent advice from their medical team.  This is something we all need to consider when we interact with our health care system.  The fact that we need medical advice that we can trust.  This is the very basis of informed consent.  Health care is about more than diagnosis and treatments, it is about relationships and trust.  That is the tragedy behind the Charlie Gard story is the relationship breakdown between provider and patient.

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.