[tri-wings] Input requested/Annie/coroner/conference

















Hello everyone,

It has been a while since I provided an update on the situation with Annie. I 
am presenting Annie's story by way of a poster at an upcoming conference (July 
25) on ethics and genetic tesing at Seattle Children's Hospital. There will be 
a panel to discuss medical treatment of babies with trisomy 18. 

Likely, the subject will arise of whether scarce resources should be expended 
on children with certain genetics conditions, like trisomy 13 and 18. I 
certainly have my own ideas, but I was hoping that some of you might share your 
own reasons that you believe ethicists and geneticists need to hear. Given the 
demographics of our population, priority-setting is becoming more of a 
discussion item than ever. It is not just in public health care countries like 
Canada. (although I think it is much, much worse here)

The basic question is, Why should health care dollars be spent on saving the 
lives of children who are very limited and who have a shortened life span? 

I welcome, appreciate, and very much need your comments. Please feel free to 
respond privately if you prefer. Thanks so much. 

As for the update, first a brief summary;

Annie was born with Tri 13; full term, 7lb, Apgars 8 and 9, normal tone, power 
and reflexes. She was treated for hypoglycemia for the first 6 weeks in 
Hospital. She needed 100cc Oxygen to help with occasional desats and had mild 
pulmonary edema. No problems with any major organs, no holoprosencephaly (brain 
defect). Before birth, we had met with 3 departments to confirm if surgery was 
even an option in our public health care system and we were assured that Annie 
would be treated like any child and that a "no surgery" policy for tri 13/18 
did not exist.
At the age of approx 75 days, Annie's face turned and stayed bright red and she 
developed episodic resp. distress. Docs at 2 hospitals said red face was from 
medication, and resp distress might improve on its own and that a "wait and 
see" approach was best. Suspicion was tracheomalacia and floppy trachea often 
grows firm on its own.At age 80 days, rushed to world class children's hospital 
in acute resp distress. DNR entered without informed consent, 1.5 hour "slow 
code blue" before accepted by critical care. 20mg Morphine, 100mcg/2mL Fentanyl 
signed out from Narc cabinet in Annie's final hours, no doctor's order, none 
shown as wasted or returned, no final medication report. Annie died 24 hours 
after arrival.
After an internal review, Hospital apologized for communication, develops meek 
plans. The coroner and his committee undertook a 9 month "long and complex" 
review. They determined final care was "not appropriate" and stated that it was 
"by no means certain that Annie needed prolonged intubation or distressful 
surgery." The only recommendation was that the hospital should ensure that 
referring facilities are aware of the family-centered care policies. (???) We 
tried to seek an understanding from the doctors. We offered to "sign anything" 
if they would speak to us and if the hospital would initiate some sincere steps 
toward improving communication and ethics. There was no interest and the 
doctors refused to speak with us. 
We appealed for a Coroner's inquest with 11 letters of support, mostly from 
disability groups representing tens of thousands of vulnerable citizens 
including a senator. Initially, the Coroner turned down our request for an 
inquest because they said the issue was related to the DNR without consent and 
that was handled by the medical board. (or college as we call it) We believe 
that it is about much more than that; it is about parental rights and autonomy 
and the treatment of infants with conditions related to disabilities, not to 
mention what appears to be the criminal act of involuntary euthanasia and 
concealment of records.
I have told Annie's story at provincial, national and international conferences 
and also medical schools and workshops. I emphasizes communication, 
patient-centered care, ethics and genetic discrimination. 
Annie's video; 
http://www.onetruemedia.com/otm_site/view_shared?p=41ab62c735aa5298b04f5d&skin_id=601&utm_source=otm&utm_medium=email

My talk at the University of Toronto Joint Center for Bioethics:
http://epresence.ehealthinnovation.org/archives/2008_jun11_633488010617968750/?hideSocial=false&archiveID=255

Essay about Annie in the Canadian Paediatric journal (listed under 
'commentary');
http://www.pulsus.com/journals/toc.jsp?sCurrPg=journal&jnlKy=5&fold=Current%20Issue

UPDATE

The Coroner has declined our appeal for an inquest. No justification whatsoever 
was provided. There were no answers to our fundamental questions such as 
"how/why did Annie die and how do we know if she could be helped?" and "where 
did all of the narcotics and the missing medication record go?" 

In a public healthcare system, the hospitals and coroner are part of the 
government. There is nowhere to go. I asked someone at a high level in the 
Federal government what I could do. There must be someone in the capital at the 
federal level that could help but I was told that there was not and the only 
way to get the story out and maybe affect change was by writing a book. 

Through the privacy commission, we tried to obtain a copy of the 'missing' 
medication report. We told the privacy people that a forensic audit of the 
Hospital system would prove or disprove that the report exists. The response 
given to us was that the hospital (a leading institution) downloads their 
electronic files onto hardcopy when a patient is discharged and then they purge 
the electronic file and therefore a forensic audit would be senseless. (????? 
sounds like 70's technology)

The human rights commission, where we have lodged a complaint, is so backlogged 
that they have not yet assigned an investigator to the case,  after almost one 
year. The Hospital has responded that the complaint is "frivolous and 
vexatious"  and "an abuse of the human rights system". 

This should not have been difficult. We did not want Annie to undergo futile 
surgery that would not be in her best interest. We wanted to give her a chance, 
if feasible and otherwise, a peaceful death. It should have been simple. In her 
entire life, there was not one 2-way conversation to discuss what the best plan 
of treatment would be. The expert medical reviewer called the medical care by 
the system "reprehensible" and "contrary to the basic tenets of good practice 
of medicine."

Thank you again for any input that you could provide.

Barb











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