March 17, 2006.
Email to be followed by paper copy

 

Dear M,

 

I am very affected by the revelations of the meeting last Monday. I had always believed that you erroneously thought that Annie had pneumonia, and that she had no tracheal issues. This is what I clearly remember you telling me, but you say that you remember it differently.  I regret somewhat my outburst in the meeting, but our disagreement about this issue is a very significant issue to me for several reasons.

As you made it very clear that you did not discount a potential tracheal problem, not then or ever, then I realize that you knew it was likely when you saw our daughter the day before she returned to the hospital, and then in the ER, 24 hours before her death, that she was experiencing a slow strangulation from her trachea.

It would seem appropriate to me that at that time you would have confirmed your suspicions through diagnostic testing.  Then we, as a team of parents and trusted physician would have discussed the appropriate course of action: surgery or palliation. 

I guess another scenario would be that you would have described Annie's heart failure to us (that she suffered from it is recent news to be sure) and suggest that further diagnosis of the trachea wasn't indicated as surgery did not seem appropriate anyway. Then, we could have decided whether we wanted to take that path and with your help worked out a plan of comfort for Annie.  If the amount of medication required to ease her suffering caused respiratory cessation, then that would have been acceptable. 

These would have been appropriate and acceptable options with respect to the Hospital Policies, Hospital Mission Statement and the Health Care Consent Act.

Instead, assuming a choice had existed, you chose to do neither of these, thereby allowing a child, entrusted to your care, to suffer in a way that no human being should knowingly be allowed to suffer. Annie received neither treatment nor appropriate palliative care.

Annie was so imperfect in the traditional sense, but for the purpose in which God made her, she was perfect. She didn’t deserve to suffer; she was already dealt a difficult enough hand.

We have consulted with a very well respected and recognized bioethics professor and we have been assured that, like everyone else, Annie absolutely had a right to life and a right to treatment to provide her with life, unless that treatment would be medically futile.

We will never get our daughter back, and believe me; the fact that her life was unlikely to be a long one makes no difference. If her life was only meant to be for a fleeting short time, well then that was her and our family's entitlement. She deserved for all of us to do the best for her, allow her comfort in life, a chance to prolong her life if it seemed feasible, and if not, palliative care to ease her suffering.

Perhaps I am way out of bounds in terms of my analysis of what should or could have been done for Annie.  In my examination of events, I have assumed a certain ethical medical climate. Maybe however, and I hesitate to think this could be true, there is an easier way to explain why we seemed to have what amounted to catastrophic collapses in communication for the first and only time in our lives with you, Dr. H, Dr. P, and even Dr. C

It all starts to make sense if you consider that maybe there is an unwritten, unspoken policy for kids like Annie. This policy, if it exists, would state that there are some children who are not offered life-saving treatment. It is unwritten because its existence would be contrary to the Charter of Rights and Freedoms. When you consider all the policy violations involved in our little baby's care, this may be one that was strictly adhered to by everyone and held supreme over the rest. Likely, it explains Dr. B’s tolerance at the meeting over lesser misdemeanors.

Annie's health management doesn't exactly fit under the guidelines for Treatment for Children with Incurable Disease or Appropriate Use of Life-Sustaining Treatment. The children for whom these guidelines have been developed have ailments that the best of the physicians can't cure.

The difference is that nobody wanted to fix or even diagnose Annie's problems. She wasn't good enough. Her quality of life was judged unilaterally, without the ability of us, her parents, to make a single peep in defense of her life because we were not properly informed as we had a right to be. We knew more about her potential quality of life than all the physicians at the hospital combined, and yet we were denied the chance to speak on her behalf and decide for her. I dare say that Tim and I and our family showed our baby as much or more love and commitment than any parents, ever and that love would have guided our decision whether it was for or against treatment. In either case it would have been a decision to do what was best for Annie.

I have spent a great deal of time researching medical philosophers, health care law and the end of life guidelines by the College of Physicians and Surgeons. Something that is consistently, very strongly stated is this; the physician does NOT have the right to judge a patient’s quality of life and make decisions about treatment based on that personal judgment. If there is a personal ethical conflict, then the physician is advised to remove himself from the care of the patient.

The confusing pieces come together and the puzzle can be complete for the first time.  Rather than say a mistruth to parents who will surely check the validity of every word uttered, it is better to say nothing.  Don't speak, don't do diagnostic tests in which you may be required to take action or questioned as to reasons that you did not. This perfectly explains Dr. H's inability to look us in the eye as he refuted the suspicion of tracheostenosis, Dr. C’s limited words and Dr. P's lack of formal end of life discussion with us because, as he most incredulously stated at the meeting we were, "well informed, articulate and educated." Mostly, this theory helps me to understand you and your actions for the first time.

Looking over the medical records there are so many areas of concern. To name just a few:

·         If Dr. C refuted the idea of tracheostenosis why did he order a fluoroscopy and why was it (or a feeding study) not done or followed up on?

·         Why were Annie’s chronically high carbon dioxide levels ignored, even when her ph levels became uncompensated?

·         Why were tests not ordered when Annie had acute respiratory distress days before her death when vascular rings or tracheostenosis were suspected?

·         Why was ENT not called in the ER when the call sheet suggests doing so?

·         Why did you not have a plan to diagnose the source of Annie’s respiratory distress when she entered the ER, even though you acknowledged ongoing suspicion of tracheostenosis and it can become fatal within hours?

If Annie had not had a genetic disability and presented with exactly the same symptoms, precisely what tests would have been done and what treatment offered? To what extent were your decisions made on the basis of her disability and not on the basis of how to diagnose and treat the immediate condition with which she presented? What treatment would a non-disabled child with the same symptoms have been offered?

No M, I am not angry and filled with resentment toward you and the others. I will not let the gift of Annie's life fill me with emotions such as these. I am just sad; sad for Annie and us, but also sad for you. I am sad that you must practice medicine with children like Annie in such a way that must surely nag at your conscience.

The primary issue is NOT whether or not Annie should have received life saving treatment. It is about compassion and honesty. If the hospital believes it is not appropriate to save the lives of children with certain limitations, then they must say so, and then treat these children with compassion in their deaths. At the end of the day, isn’t compassion and humane care the primary goal of any hospital?

Please, help me to understand. I sincerely believe in your goodness; your desire to do what was right. You indicated no regret in any of your actions at the meeting. Thus you must have believed all that happened was justified. I am hopeful that we can reach an understanding of what transpired.

If you can, tell me I have flown off on the tangent of bereavement and that I must have lost my mind to ever even hypothesize such a horrendous hidden policy.

 I am begging you: convince me that I am profoundly wrong.

M, last December, in an email, you told us that you absolutely understood the need to answer as many questions as possible. You added that you would be happy to speak to us at any time. Is this still the case? Can you help us in any way to find an error in the logic with which we now view the situation?

Sincerely,

Barb