New Jersey: More Coverage/Commentary on Betancourt Ruling

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A later story by Sue Epstein has been published in the New Jersey Star-Ledger.  This article is a little more detailed than the first and includes a brief comment by Anne Studholme, who represented NDY and our co-amici.

The Wall Street Journal also published an article about the decision, written by Suzanne Sataline.


New Jersey Today published an editorial that concludes that the court’s “sidestepping” of the issues in the case means that health care providers are free to overrule families in life-and-death decisions.  Thaddeus Pope has responded on his blog.  He points out that the court’s dismissal leaves the original ruling in place – and decisionmaking in the hands of families and/or the individual.  –Stephen Drake

New Jersey: Appellate Court Issues Ruling in Betancourt v. Trinitas

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The Appellate Division of the New Jersey Superior Court issued its ruling today in Betancourt v. Trinitas Hospital.  The hospital had asked the Court to rule that it had the right to discontinue dialysis treatments for Ruben Betancourt, a patient with a hypoxic brain injury, based on doctors’ claims that prolonging his life was “futile” and “inhumane” because his life lacked “dignity,” in part due to his brain injury and in part due to his overall poor state of health, and his age — 73.

Not Dead Yet filed an amicus brief along with ADAPT, Center For Self-Determination, National Council On Independent Living, National Spinal Cord Injury Association, American Association of People With Disabilities and Disability Rights of New Jersey.

Here is what our lawyer, Anne Studholme, said upon reading the decision:

Not Dead Yet led a consortium of disability rights organizations in filing a friend-of-the-court brief and participating in oral argument when the case was heard on April 27, 2010.  We reminded the Court of the significance of New Jersey’s historic prior jurisprudence on issues of personal medical autonomy, and described how the concept of “futility” devalues the lives of people with disabilities.

The case had been brought to the Appellate Division by Trinitas Hospital, which had lost at trial.  The trial court found in favor of Mr. Betancourt’s autonomy, finding that his daughter had offered evidence as to her father’s wishes and would be a faithful guardian in carrying out his desires under New Jersey’s concept of surrogate decisionmaking.

The day before the hospital’s appellate brief was due to be filed, on May 29, 2009, Mr. Betancourt died.  His family asked the Court to dismiss the case as moot.  We joined in that motion, in part because of our concern that it might be too easy for a court to overlook the individuality of the person at the heart of the case if he was already dead.  It would also be too easy to dismiss him as ‘dying.’  We also feel that the Court acknowledged our concern that this case risked conflating mentally incapacitated people with people whose doctors describe them as ‘dying.’  People in both situations are vulnerable to having their lives declared futile.

The court agreed that Mr. Betancourt’s death rendered the case moot, and that for other reasons to do with idiosyncrasies of the facts and the record, it would not be reviewed under the narrow exceptions which permit review of moot cases.  The Court quoted our brief: that Betancourt’s “death ‘casts an aura of hindsight wisdom over the doctors’ declarations that he was “dying[]” ‘ and makes this a poor case in which to adjudicate the rights of mentally incapacitated individuals.”

This distinguished appellate panel gave the matter appropriate attention, handing down a 26-page opinion.  Had the merits been reached, five New Jersey Supreme Court opinions would have given strong guidance to this intermediate court, and even at the higher level were the case to proceed there. 

“Unlike Conroy and Farrell [two of the five prior NJ Supreme Court decisions protecting medical autonomy], the uncertainties as to Ruben’s condition and prognosis do not lend themselves to the resolution of the important issue involved here. A decision here may be applicable not only to a patient on the threshold of death but also to a mentally incapacitated, yet stable, patient. Such a decision would neither serve the interests of the parties here nor the public at large. Vague decisions based on unique facts do not lend themselves to the type of resolution required here.”

The Court acknowledged the high public importance of the issues raised, and invited legislative consideration and administrative policy-making.  As we said at oral argument, legislative fact-finding can help illuminate the issues, but it is also important that the courts stand as the bulwark to protect the rights of politically vulnerable people.

So – basically, this ruling makes it a pretty good Friday the 13th for us.

For more info, commentary and coverage:

Thaddeus Pope, who also filed an amicus brief in the case, has shared his initial analysis of the decision on his Medical Futility Blog.

The New Jersey Star-Ledger has coverage of the ruling.

NJ Today also has a story about the ruling.


The ruling itself can be read here in pdf format.


For any member of the media wanting comment on the case:

Contact info for Anne Studholme:
Tel: (609) 945-3955
Cell:  (609) 651-6211
Fax: (609) 935-0567

(space inserted in email as a spam precaution)
anne @manewitzstudholme.com
anne @alumni.princeton.edu

More Bloggers Remembering Paul Longmore

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As promised, this is a list of additional blogs marking the death of Paul Longmore:

That’s pretty much everything I have found so far.  I still intend to put together a post of NDY-related references and material by Paul, but it will have to wait for next week.  We got word earlier today that there will be an important development tomorrow – we don’t know yet if it’s a good development or a bad one.

Looks like I have to hit the ground running in the morning – metaphorically, as it pertains to reading, processing and synthesizing.  –Stephen Drake

Diane Coleman Remembers Paul Longmore

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From Diane Coleman, president and founder of Not Dead Yet:

Paul was one of a few disability rights activists and thinkers who changed my life in the 1980’s. He lived in Los Angeles then, and I was brand new to the movement, just finishing law school and joining my first CIL board.

He often wrote for the Disability Rag, which I started reading cover-to-cover every month. Paul merged disability scholarship and political activism in a powerful way that helped frame and advance our movement.

I was privileged to participate in his famous book burning protest against oppressive Social Security and Medicaid policies. We were both judges in media access awards, part of small groups watching and commenting on media portrayals of disability.

Paul’s unmatched historical knowledge of disability in the media poured out in enlightening and often sarcastic quips. But his work as a spokesperson of our community pertaining to the early assisted suicide/euthanasia cases involving Elizabeth Bouvia and Larry McAfee had the biggest impact on me. His media interviews and writings on those cases helped shape my understanding of society’s profound oppression of people with disabilities and how that oppression translates in medical settings. His contributions toward the founding of Not Dead Yet are a major part of Paul’s legacy that can never be forgotten.

Part of Diane’s tribute to Paul is included in the obituary that is posted on New Mobility.

Bloggers Remember Paul Longmore

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Since I wrote yesterday, there have been many moving tributes to Paul Longmore from friends, colleagues – and many who have been affected by his academic work and political advocacy.

His facebook page is filled with messages of appreciation and remembrance.  I don’t know if his page is viewable to non-facebook users or even to nonfriends on facebook, but you could check it out to find out.

Here is a list – I can’t pretend it’s complete – of blog entries mourning the loss of Paul Longmore and reflecting on his life and work:

Also, Joe Shapiro has posted a long obituary on the NPR health blog (yes – we know what Paul might say about ending up on the health blog).

I apologize to any blogger – especially any disability blogger – I haven’t linked to.  I’m sure this list isn’t comprehensive – and I am also sure that there are new blogs that have been posted since I started writing this post.  I’ll do a new search tomorrow and share ones I either overlooked or that have been published since the completion of this post.

I’ll also try to put together a set of links on articles and/or interviews with Paul Longmore that are NDY-related.  I’ll include one that was a collaborative effort – between myself, Diane Coleman, and Paul.

Still waiting for any San Francisco mainstream media to notice that a great man has died.  –Stephen Drake