Followup on Betancourt v. Trinitas – Reports, Coverage and More

I wanted to give readers a followup on yesterday’s oral argument in Betancourt v. Trinitas.

First of all, I talked to Nadina LaSpina and Danny Robert today about yesterday’s court proceeding. (this link goes to a 1998 interview with Nadina and Danny, who are activists and life partners.)

Nadina and Danny told me that there were six disability activists in all who went to the hearing.  Also attending were fellow NYC disability activists Marla DeFex, Melina Cowan, Hope DeRogatis, and Alvaro Prieto. There were two attendants with the group as well.

According to Nadina, the travel to and from the courthouse went smoothly, largely due to the efforts of Anne Studholme, who charted the course, checking carefully for accessibility and sent detailed instructions.  Travel entailed a train trip from NYC to New Brunswick – and then a relatively short trip to the courthouse.

The courtroom itself was relatively small and the only place for wheelchair users to sit was up near the front, in back of the lawyers and not that far from the judges themselves.  I’m told that Thaddeus Pope came up and introduced himself.

The hearing was emotionally draining on the activists.  Every mention of “dignity” and what constituted the lack thereof felt personal.  Danny, for example is a full-time vent user.  I imagine that the sound of the machine that helps him to breathe was pretty audible in a small courtroom.  In any case, I’m told that at least one of the judges would look at Danny every time a ventilator was mentioned in anyone’s arguments before the bench.  No telling what that means, if anything.  I’m guessing – that at the least – it’s a reminder that ventilators and people who use them are more than just abstractions – and more than examples of “indignity.”

Jackie Betancourt, the daughter and surrogate decisionmaker for Ruben Betancourt, who was the patient that was at the center of this court case, left a comment in response to yesterday’s blog.  I’m reproducing it here:

I am the daughter of Ruben Betancourt, i went to court today & stood at the door with my mother, listening, i just want to say “thank you” from the bottom of my heart!!! My father was a fighter…& he would be very proud!!!!! We the family unfortunately were unable to file a case against the hospital decision to appeal Judge Malone’s decision, our lawyers at the time said to us that it would be very costly to take to a supreme court… So we decided to close all ties with the lawyers… Because to us it wasn’t about the money, it was about a life, a human being “my father”… 

Anne Studholme also left a comment – partly in reply to Jackie Betancourt – but I think that should be shared here as well:

Thank you so much, Jackie for writing. I didn’t know if you would be there, and I’m grateful that you and your mother were able to hear the arguments and that your father would have approved as well.

I just wanted to let everyone reading the blog know that, as predicted, I didn’t get to read much (possibly not any) of what I had prepared. That always happens! I think we did manage to make the point that this is not about “demanding” care. It’s about a very, very difficult and emotionally wrenching decision which under long-established NJ law is for the patient to make. If the patient is unable to communicate, then the family has the burden and anguish of having to figure out what the person they love would want to happen– to continue life-sustaining measures or to end them– and then doing their best to ensure that is what is done. It becomes so much harder when you have to fight to make it happen.

By a twist of fate that maybe was a message to the lawyers as to how personal this is, BOTH I and the lead amicus counsel for the hospital had our mothers die the very day before the oral argument. I do not know the circumstances of Mr. Jackson’s mother’s passing. He has advocated with courtesy, valor, and professionalism for his clients, and I wish him and his family all the very best. This case may potentially continue, and he is a worthy participant.

My mom had stage 4 lung cancer and suffered a heart attack. I learned today that my sister in N.C. had to fight with an ER doctor who wanted to revive my mother, AGAINST my mother’s wishes that extreme measures not be taken, particularly if she were fortunate enough to be dying painlessly, given what she was facing.

So the situation can cut both ways, but the patient’s legal right to direct whether to stay on life support or discontinue it was achieved at large emotional costs to the patients and families who walked the path before us. It would be so unfortunate to have that right weakened.

Jackie, it’s never easy to get picked, essentially by fate, to have your father’s and, for your mom, her husband’s struggle become a leading legal case. I hope that having to relive it isn’t too painful, and thank you and your mother and brothers for what you went through in advocating for your father.

I personally also would thank the medical caregivers who do very hard work, and who also bear heavy emotional strain. And thank you to the NDY members who made the long trip to Court. Your presence helped to keep us mindful as to what is at stake.

There is an article about the hearing in the New Jersey Star-Ledger worth checking out.

Thaddeus Mason Pope has posted his oral argument, and will write more about his impressions of the proceeding in the future.  He opens the post with this:

This morning in New Brunswick, New Jersey, a totally packed appellate courtroom was treated to a lively 90 minutes of oral argument on the law and ethics of medical futility. The hearing in Room 103 of the Middlesex County Courthouse Room was attended by local hospital physicians and ethicists, by representatives of several Jewish groups, by interested attorneys, by the press, and, most visibly, by members of Not Dead Yet and other disability groups. Their specialized wheelchairs and mechanical ventilators sent a very strong message to the judges (and everyone else) about the dangers of judging the value of someone else’s diminished physical condition.

It could be months before the court issues a decision.

For my part, I want to extend my gratitude to:

• Anne Studholme for her work and commitment to this case;
• Jackie Betancourt and the rest of her family who have continued with this fight when many would have put it behind them;
• ADAPT, the Center for Self-Determination, the National Council on Independent Living, the National Spinal Cord Injury Association, the American Association of People with Disabilities, and Disability Rights New Jersey for joining NDY in the amicus brief.
• Nadina LaSpina, Danny Robert, Marla DeFex, Melina Cowan, Hope DeRogatis, and Alvaro Prieto for taking the time and energy to make sure there was a live disability presence in the courtroom.

It’s a privilege to be associated with a group of people and organizations like this.  Thank you all.  –Stephen Drake