Update on Oral Argument in Pennsylvania Supreme Court Guardianship Case

court decisions, litigation, Our News & Commentary Blog, Pennsylvania, Surrogate Decisions & Guardianship
Last week, this blog reported about scheduled oral arguments in front of the Pennsylvania Supreme Court regarding the limits on a guardian’s powers – specifically, whether or not guardians have the right to refuse life-preserving treatment – treatment needed to save the life of a person legally lacking decisionmaking capacity and who is neither dying nor permanently unconscious.  The original decision by the lower court was reported in this 2009 blog entry.
The following is an account of the oral argument from Mark J. Murphy.  Murphy is the Executive Director of the Disability Rights Network of Pennsylvania (DRNPA).  DRNPA filed an amicus brief in this case, and was joined by NDY, the Arc  of Pennsylvania, Achieva, Vision for Equality, Liberty Resources, Inc. and Pennsylvania Developmental Disabilities Council.  Account follows below:
I attended the oral argument held before the Supreme Court of Pennsylvania on May 11 in Harrisburg in the David Hockenberry case.  Here is my brief summary of the argument, along with a few comments.
The parents’ lawyer, Christopher Lucas, presented his argument first.  He began by telling the court that “regrettably” there is language in the Superior Court opinion that seems to frame the case as a “right to life” case.  Mr. Lucas said that they parents’ actions regarding not authorizing the mechanical breathing device was not done in order to end David’s life, although he then said that the “record is unclear” as to why the parents chose not to consent to the use of the breathing device.  This was a very odd way to begin the argument, especially since he seemed to be trying to defend his clients’ motives but then did not offer another, more positive motive for the parents doing what they did.
Mr. Lucas then moved to the substance of his argument, which I think can be summarized in two points: 1) the guardianship law trumps all other laws or policies, including the later-enacted Act 169; and 2) courts must defer to the judgment of a guardian regarding what is in the best interest of the incapacitated person, even when the alleged best interest is the withholding of medical treatment.  Justice Baer asked Mr. Lucas if, given that the guardianship law does not permit a guardian to consent, for example, to a sterilization or an abortion, is it reasonable to think the law would allow a guardian to make a decision that would result in the death of an incapacitated person not at the end of life.  Mr. Lucas responded by arguing that the statute has to be construed literally, i.e., the law lists some powers the guardian does not have, but it does not say a guardian has no power to make life and death decisions, and thus courts should find that the guardian has such a power.  Justice Baer then questioned whether that position wasn’t “absurd” given that the legislature cannot list every possible power a guardian might possess.
Mr. Lucas then returned to an argument he made much of in his brief, i.e., that ruling against the parents means that David’s right to make medical decisions has been denied.  Mr. Lucas argued, as he did in his brief, that David has the right to refuse medical treatment and, since he is incapacitated, someone has to be appointed to exercise that right for him.   As we noted in our brief, this argument is not supported by the law, and I doubt it will make any headway with the court.
Mr. Lucas ended his argument by telling the court that it can decide this case without implicating Act 169.  He emphasized, as he had previously, that the guardianship law is controlling in this situation and that Act 169 does nothing to affect the powers of guardians to make decisions.
Howard Ulan then argued on behalf of the Department of Public Welfare.  Much of his early argument was spent responding to questions from a couple of the justices about the difference between a health care agent and a health care representative and other technical issues, including whether a guardian is automatically a health care agent.  Mr. Ulan dealt with all of those questions appropriately.
Justice Baer then asked if the difference between a guardian and a health care agent or representative is relevant at all in this case.  Mr. Ulan correctly noted that the distinction doesn’t matter because a guardian does not have the power to refuse to consent to life-preserving treatment to someone not at the end of life (or permanently unconscious) and a life-long incapacitated person, like David, cannot have a health care agent.
Mr. Ulan emphasized that the Commonwealth has made a policy decision through the enactment of Act 169 that it is not permissible to withhold life-preserving treatment to incapacitated persons not in an end-of-life situation or permanently unconscious.
At the end of the argument, Jane Adams, the lawyer appointed to represent David, spoke briefly to note her agreement with the arguments made by DPW and to point out that David made a full recovery and is now in good health.
It is often difficult to predict how a court will rule based on what occurs at an oral argument.  It is particularly difficult when, as in this situation, only a few of the justices ask any questions of substance.  Three of the justices did not speak at all, and two others asked only one or two relatively minor questions.  I continue to believe, however, that our side has the far stronger legal argument and so am optimistic that when the justices carefully review the briefs, etc., the arguments made by DPW and that we supported and supplemented will prevail.
As usual, we are thankful to all players involved – especially to Mark Murphy and the DRNPA for their work, leadership and advocacy.  We’ll post the outcome here on this blog whenever it’s known, but that may be a wait of some months.  –Stephen Drake

The “Right to Die” Expands Into New Territory

"end of life", crime and punishment, death penalty, euthanasia, legislation, life-ending decisions, media coverage, media issues, Our News & Commentary Blog, reality check, right to die

Sometimes I think I’ve lost the capacity to be surprised by new developments.  I tend to think I’ve grown so jaded that nothing that comes up can really surprise me.  I think that in spite of the fact that I do get surprised on occasion.

This week’s collision with surrealism came in the form of two news stories – two days apart and in two different states.  Both are stories on the “right to die,” but I can guarantee they’re nothing like what you would expect.

On May 10th, Delaware Online featured a story by reporter Sean O’Sullivan titled “Lawyers spar over killer’s right to die.”

On May 12th, WAFB.com in Louisiana featured a story by reporter Jim Shannon titled “Right to die bill passes through House committee.”

The stories both deal with the death penalty.  Personally, I think that “right to be executed” would be a more accurate term for the stories, but I guess that doesn’t have the same comforting, compassionate tone as the “right to die.”  Maybe that’s the point.

The Delaware story involves 26-year-old Shannon M. Johnson, convicted of murder for shooting the companion of an ex-girlfriend, whom he also shot at a later date.  Johnson doesn’t want any appeals on his behalf and would like to “get his execution over with.” 

The controversy involves maneuvers by a federal defense attorney to take the case over and appeal the death penalty over Johnson’s wishes – and contrary to the legal judgment of the local defense.

It gets a little complicated and you can read the whole story here.  It’s worth noting that the “D” word – “dignity” comes into play as well, in this criticism from the local defense counsel:

“What they are really doing is basically being very disrespectful to his dignity by trying to draw this out,” he said. “While I don’t agree with the decision, I think they need to respect it.”

The Louisiana story is a little more straightforward.  Here is the intro to what the reporter is calling a “right to die” bill:

BATON ROUGE, LA (WAFB) – A bill to expedite the right to die passed out of a Senate committee Tuesday. The bill provides notification to convicted death penalty defendants of their right to waive their appeals.

Sen. Dan Claitor, R-Baton Rouge, sponsored the bill. It now heads to the full Senate for debate. The case of Gerald Bordelon, a man convicted in the death of a young girl in Livingston Parish, made history when he effectively waived his rights to appeal and was executed this year.

There’s a link to the bill at the WAFB site and I’ve read it.  There is no mention of a “right to die” in it.  It can only – as far as I can tell – have originated from the fevered imagination of the reporter involved.  The same is probably true of the Delaware story.

Still, I have to wonder if this will catch on.  It really sets off my  weird-o-meter to have two stories like this so close together in time.  There is a certain grim logic to it and it could be carried even further, I guess.

In 2007, I engaged in a debate on euthanasia and assisted suicide with a professor at Washington State University.  During the Q&A period, someone asked us about “involuntary euthanasia.”  My worthy opponent gave a more-or-less textbook explanation about what it was and how it was unethical in “almost” all cases.  While listening, I had one of those rare flashes of perverse inspiration and gave my own response: “Involuntary euthanasia,” I explained, was legal in many states and practiced pretty regularly in some of them.  We just didn’t use that particular term – we usually refer to it as the “death penalty” – using painless lethal injections to put people to death.  The good professor was at a loss for words – and any kind of response, since the grim logic was pretty solid.

Truthfully, I thought I was being a little fanciful at the time.  But then again, I wouldn’t have dreamed of hearing or reading about death penalty issues under the framework of a “right to die.”  How long will it be before people who decline appeals to their own executions are deemed to be subjects of voluntary euthanasia?

Certainly, it wouldn’t be too cynical of me to expect to stories like these framed as “end of life” stories.

Far-fetched? Maybe.  But until this month, seeing the death penalty framed as a “right to die” issue was pretty far-fetched too.  –Stephen Drake

Ms. Magazine Blogger Praises Kevorkian, Disses People With Disabilities, and Angers Some Feminists With Disabilities

blog recommendations, bloggers, culture wars, feminism, Kevorkian, media coverage, Ms Magazine, Our News & Commentary Blog, reality check

(Note – I’m still trying to process the briefs in the Pennsylvania Hockenberry case.  No word on the oral arguments yet.  I’m hoping for some reports and/or press coverage by tomorrow.)

Last week, I was alerted about a blog entry on the HBO biopic You Don’t Know Jack that was published on the site of Ms. Magazine.  Like most of the bloggers who have reviewed this film, Carol King is a big fan of the movie and of Kevorkian himself.  In Kevorkian and the Right to Choose, King explains her close connection to the Kevorkian saga – she was the executive director of the Michigan Abortion Rights Action League, which was right across the street from the office building of Geoffrey Fieger, Kevorkian’s attorney.

In a ringing endorsement of Kevorkian’s career, she carefully steps around any mention of Kevorkian’s “assistance” in the suicides of non-terminally ill individuals, which were in fact more typical of the people whose lives he helped end.  She also appears to be totally ignorant about the 30 years prior to Kevorkian’s suicide assistance spree – in which he passionately advocated for the establishment of the specialty of “medicide” – a specialty in medicine that would involve killing patients – death row prisoners, people with dementia, disabled infants, etc. – in a way that they could also be exploited for live human experimentation and organ harvesting.  See this post for more information.

Given her role as the director of an organization that advocates for abortion rights, it’s probably not surprising that she draws a straight and simplistic line in her entry – a line between assisted suicide and abortion.  (This is, of course, the same line that prolifers like to draw – it seems to be an area of agreement between euthanasia proponents and Christian prolifers.).

But King pulled something that evoked a response that neither she nor her editors at the magazine anticipated.  She wrote the following:

“The “right-to-lifers” enlisted the disabled in their cause when they cautioned that allowing people to choose to die would soon become their “duty to die.” They used the same rhetoric during the recent health-care reform debate when they conjured up fears about Obama’s “death panels.” This fear-mongering is adapted to the abortion issue when claims are made that women blithely abort “imperfect” fetuses.”

This brought an unexpected shitstorm of anger from feminist disability activists, some of whom don’t even oppose assisted suicide, but were and are enraged by the automatic marginalization of people with disabilities by the use of the term “the disabled” and the suggestion that we’re pawns of the Christian Right.

The quote above is no longer on the blog.  After several days of angry complaints from feminist disability activists, Ms. editor Michele Kort wrote the following:

Both the writer and the editors of the Ms. blog would like to apologize for using the expression “the disabled” rather than “people with disabilities” in this post. It was careless on our parts not to catch both the inaccuracy and the offensiveness of that term. Also, the post has been edited to reflect that the right wing TRIED to enlist people with disabilities in their campaign; quite obviously, people with disabilities have the agency to refuse such overtures.

There are a number of problems with the edit:  First of all, the new version gives the impression to uninformed readers that there wasn’t any disability opposition to Kevorkian at all.  Real respect would entail an acknowledgment of that opposition and the distinctiveness of our bases for opposition – as opposed to Christian pro-life groups.  It seems that people who like to think of themselves as “progressive” have only two ways of dealing with disability activists opposing assisted suicide and euthanasia: Label us “tools” of the religious right – or just pretend that we don’t exist, we were never there, we don’t count.

I also find it interesting – and telling – that Carol King herself didn’t deliver the apology.  In fact, she hasn’t entered a comment or reply to this blog entry at all.  It’s interesting because if you check the link to her name, you can view other recent blog entries by her – she’s likes to engage with people who comment on her blog entries – but now I see it’s only if they are praising her.

I recommend people reading the blog entry and the comments entered by disability activists.  After that, I want to recommend a few other blogs that weighed in on this way before I did:

Just to reiterate one point made above.  A number of feminists with disabilities have taken Carol King to task on and off her blog.  She could at least show them the respect of replying to them directly instead of leaving it to her editor to do something she probably finds distasteful to have to do herself.  –Stephen Drake

Pennsylvania: New Month, New Oral Arguments in a New State

court decisions, litigation, Our News & Commentary Blog, Pennsylvania, Surrogate Decisions & Guardianship

Next week, the Pennsylvania Supreme Court will be hearing oral arguments in a case we reported on due to an earlier court ruling over a year ago(from the mailing sent out the the Disability Rights Network of Pennsylvania):

Set forth below is a summary of an important new decision by the Pennsylvania Superior Court regarding whether, and under what circumstances, a guardian has the authority to refuse treatment for an incapacitated person who does not have an end-stage medical condition or is permanently unconscious. In brief, the court held as follows:

1. A court order that appoints a person as a plenary guardian does not authorize that person to refuse life-sustaining treatment for incapacitated persons who do not have end-stage medical conditions or who are not permanently unconscious. In other words, a guardianship order by itself does not authorize the guardian to make such a decision.

2. A guardian must secure a special court order to allow him to refuse life-sustaining treatment for an incapacitated person who does not have an end-stage medical condition or who is not permanently unconscious. The guardian has an “extraordinary burden” to prove by clear and convincing evidence that death would be in the incapacitated person’s best interests, i.e., that extending life would be inhumane under the circumstances. The guardian must present specific medical evidence about the incapacitated person’s diagnosis, prognosis, pain, etc. and, if at all possible, evidence concerning the incapacitated person’s wishes either prior to or during the treatment. The individual’s cognitive disability should generally not be considered.

In sum, this decision will make it extremely difficult, if not impossible, for a guardian to secure an order that would allow him to refuse life-sustaining treatment when an incapacitated person does not have an end-stage medical condition or is not permanently unconscious.

This ruling has been appealed.  Oral arguments will be held in Harrisburg, PA on Tuesday, May 11, 2010.  NDY has signed onto the amicus brief written and fled by Disability Rights Network of Pennsylvania. The other organizations on the brief are: the Arc of Pennsylvania, Achieva, Vision for Equality, Liberty Resources, Inc., and Pennsylvania Developmental Disabilities Council.

A short time ago, I received several briefs related to the case.  I’ll try to review them and make some sense of them over the weekend so I can report more on Monday.

In the meantime, you can read the amicus brief filed by Disability Rights Network of Pennsylvania, NDY et al here.  There are links to both pdf and word versions of the amicus.  –Stephen Drake

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

betancourt v. trinitas, bioethics, court decisions, drawing a line, futility, litigation, new jersey, Our News & Commentary Blog

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