New Jersey/Futility: Oral Arguments in Betancourt v. Trinitas (Appellate Court)

Oral arguments are scheduled today (April 27, 2010) in front of the New Jersey Appellate Division.  The case is Betancourt v. Trinitas.  You can read more about the case here and here.  It’s an important judicial hearing on one hospital’s claim regarding the extent of their “right” to summarily refuse life-sustaining medical treatment over the wishes of family and/or guardians.

Anne L. Studholme, Esq. is representing Not Dead Yet, five other national disability rights organizations and statewide disability organization (listed below).

As Anne tells me, she will almost certainly not get to say very much of this argument as written – it is more likely that she will start getting questioned from the bench – this is most often the case with oral arguments.

Of additional interest, Professor Thaddeus Mason Pope will follow Anne Studholme.  Pope maintains the Medical Futility Blog – and it’s unusual to see him play this role in a futility case.

NDY Activist, Organizer and Scholar Nadina LaSpina will be attending the hearing with other activists from NYC.  I hope to get an account from her later this week.

Below is the oral argument written by Anne Studholme:

May it please the court.  Mr. Drayton has shown how our Supreme Court’s precedent decision in Jobes controls this case, as found by Judge Malone based on the factual record before him.    

Professor Pope will follow me and will describe the problems with the “standard of care”-based theory appellants proffer.  I’ll be handling the precedent authority, and will do my best to help show why it is so important not to stray from the key concept of patient autonomy in choosing whether to live on, with life support, or die. 

And I have to be clear, we are not talking about brain-dead people, and cases dealing with brain-dead people do not help us here, unless what we are talking about is moving the goalposts of the definition of death.

I’m here representing seven organizations appearing as friends of the Court: Not Dead Yet, 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.

My clients advocate for the rights of disabled people to be treated as fully human beings.  Many of the directors and staff of my clients are themselves disabled, some in ways that non-disabled people might call severe, even “undignified,” even “unpleasant.”  I use those words because they are words that were used about Ruben Betancourt by his Trinitas physicians in the record below and in appellants’ briefs and those of their amici.  Perhaps the most palpable expression of the horror with which able-bodied people sometimes view disabled and incurably ill people is the statement that “we’re letting him deteriorate virtually right under our eyes.”  We have to watch him decompose.  We shouldn’t have to watch that.   

There is an aspect to the way in which able-bodied people, including doctors, view and interact with disabled people, an aspect which is often clouded by the euphemism “dignity,” but which in reality comes down to aesthetics.  What does it look, sound, and smell like to live with a particular disability — not being able to walk, not being able to feed oneself without help, not being able to clean oneself without help– whatever the cause of the disability?  And what will others think of this?  Able-bodied people project their fear and their discomfort, and their guilt, and their rejection, when imagining how it would feel to be disabled. 

When able-bodied people advocate for ending the life of a disabled person on humane grounds, these judgments arise, cloaked in verbiage about ‘dignity.’  For a person with PVS, who cannot experience sensations of pain, these aesthetic grounds predominate.

That may sound harsh.  And it certainly can be the case that genuine compassion for apparent suffering can lead people who are close to and physically care for and tend to and feel responsible for someone in Mr. Betancourt’s situation to sincerely desire to end what they perceive to be his misery.

To the extent the trial court’s finding of fact is that the weight of the evidence supports a PVS diagnosis and a PVS prognosis, though, suffering is not an issue.

If a patient has a well-supported diagnosis of PVS, and if anyone involved in the care of the patient thinks that perhaps the life sustaining medical technology and treatment which is maintaining the person’s life should be discontinued, should be discontinued, it’s a value call, then Jobes and Quinlan control. They control no matter who gets the ball rolling.

Because when we are talking about removing treatment which is successfully sustaining life, and if removed would end life, and we are doing it in the name of humaneness and of helping and serving the greater good of the person, then, in New Jersey, our sole guiding lodestar is what would the patient want?  Because otherwise, we’re killing him, without a legal justification.

If Karen Ann Quinlan could regain consciousness for an hour, and could tell us what to do, what would she say?  What would Mrs. Jobes want us to do?  Would that change if the doctors were saying, “Ah, the heck with it.  We have done everything we possibly can, and he’s not getting better, he’s slowly getting worse.  We’re done.  Pull it.”

Naturally, we don’t know for utterly certain what the person would say.  Sometimes we have good advance guidance, sometimes we have to guess as best we can.  But we are guessing what THEY would want.  That’s why Jobes defers to the family.  Not because the family are necessarily the people who would most clearly see what’s best for the patient, but because they are, in the view of our Supreme Court, the people who are most likely to correctly appreciate and understand what the person himself would have wanted to happen– continue or discontinue, live on or die.

Now, my clients do have a problem with this. It asks less-disabled people, or non-disabled people (I personally have come to favor the term “temporarily able-bodied” people) to guess at what the less- or non-disabled person they knew, before, would think about living “that way” now– as a person with disability in our society which so deprecates disability or illness or bodily weakness or frailty of any kind.

Still, in New Jersey patient autonomy as interpreted by the surrogate decisionmakler is the law.  

With a PVS diagnosis, it is permissible– permissible, not mandatory– under Jobes and Quinlan for a family member intimately familiar with the patient’s personality to elect termination of life sustaining medical treatment if in their opinion that is what the patient would have wanted. 

The courts are to ensure that certain procedures are followed.  The procedures ensure that the diagnosis and prognosis are as accurate as we can make them and that the person’s wishes are divined and carried out to the best of our ability.

The prognosis committee exists to ensure the prognosis is correct, because, once it is, then the power to direct whether or not to terminate life sustaining medical treatment passes from the patient to his decisionmaking surrogate. It does not pass to the doctor or to the treating institution, or to any board or committee of the treating institution.

And if the PVS diagnosis has sufficient support in the record to be sustained on appeal, then questions of pain, discomfort, physical or mental suffering, or humaneness are irrelevant. (I’m also going to address Conroy, which covers the situation where the patient may feel pain.)

The doctors here claim that they should be allowed to say that if a patient is destined to die without getting better, then life-sustaining treatment is futile.  They say, if it’s futile, then it’s outside the standard of care, and we are ethically obliged to end it.  They want the right to assert a standard of care that would require termination due to concerns that life sustaining medical technology is prolonging a life which they do not value– perhaps because there is pain, perhaps due to the age of the patient, perhaps due to the patient’s poor prognosis of regaining brain capabilities, perhaps due to a perceived lack of “dignity.”  In their briefs, appellants cite all of those as a reason. 

One thing I do want to make sure to say, is that if this case were solely about removing dialysis from a patient SOLELY because that patient is perceived to be mentally disabled, with poor cerebral function, then we would have a clear-cut case of discrimination.  I just do want to note that defendants raised those arguments, and I’m not abandoning my right to refute them.

But defendants also combine old age, illness, poor prognosis, and possible suffering as rationales for discontinuing treatment here.  And I want to be sure to say that while I’m a bit confused as to whether defendants would need all of those elements to be there before they would pull the plug, or just some combination of some of them, I don’t believe any of us have fully briefed that pure discrimination case, and I want to stick with an argument which, to me, in the short time I have, cuts most directly to the heart of what’s before this court.

And that’s the fact that this court is bound by five extensive and thoughtful precedent cases of our Supreme Court.  

It’s true that the cases — Quinlan, Conroy, Farrell, Peter, and Jobes — all dealt with patients or family members who were seeking to stop medical intervention which was prolonging life.  The doctors were either acquiescent or desirous to continue treating.  None of those cases had the patient or the patient’s surrogate decisionmaker wanting to go on and the doctors saying, “stop.”

But the Court, over and over, said that when the question is whether to continue to hang on, or to surrender to illness and age, whether to keep on living perhaps in pain, or to end treatment and thereby end life in order to end the pain, then it is up to the patient what to do.

The Supreme Court did not see this general situation of who gets to say when enough is enough as a patient ordering a doctor to provide treatment without limit and without regard to what was effective.  

The treatment here, in this case, was indisputably effective at maintaining life.  It was effective at treating the physical failures it was designed to treat — dialysis to clean the blood, the ventilator to circulate air into the lungs, tubes to deliver fluid and nutrition.  None of these technologies is perfect.  Ventilation and dialysis both can injure tissue over long periods.  Tube feeding sometimes cannot fully deliver all the nutrients a body needs.  But it is also without dispute that withdrawing any one of these treatments will result directly in death — sometimes in a period of minutes, or hours, or days, depending on what is withdrawn — but always, and soon.

The doctors said it was outside the standard of care to keep Mr. Betancourt alive, for various reasons having to do with how they viewed his life.  Professor Pope will show how that fails to articulate an actual standard of care, within accepted understanding of the term.

I do want to cover Conroy, because one of the things that can haunt us in these PVS cases, is, what if we’re wrong?  What if the patient is suffering?  Or, what if the patient is able to perceive we’re removing the tubes, and what if they’re able to experience the terror that they’re going to die?  What if we’re wrong to say they are insensate?

If we’re scared we might be wrong, though, we turn to Conroy.  And I’m not suggesting that this court would be at all justified in overturning Judge Malone’s findings.  I think they’re very well supported.  But it’s of interest to see that if Mr. Betancourt were in exactly the situation he appeared to be: old; very, very sick; moaning a bit; possibly calming when stroked; a man who had been a fighter, a man who had been strong, now “reduced” to being in bed, not going to improve much, kind of on the downhill slide, not alert and fully conscious, but IF NOT PVS, then he’s very close to Claire Conroy’s situation, albeit somewhat younger.  And Conroy confirms the result below in this case was correct.

The Conroy Court was very, very aware that old and sick people, or disabled people, in institutions could be hastened toward death due to financial concerns or institutional prerogatives, and they wanted to make very sure that by opening the door to what they saw as fulfilling the person’s desire not to live on, they were not opening the door for OTHERS to make that decision on the person’s behalf.

The Court said:  If we know the person would want to stop treatment in this situation, then the appropriate surrogate decisoinmaker can order it stopped.  And if we have something to go on that says, though maybe not clearly, that the person would want it stopped if they were suffering, and we have some evidence of suffering, then the decisionmaker can order it stopped, and if we have no idea what the person would have wanted AND the suffering is so clear and so severe that anyone would prefer to die rather than have it go on, then the decisionmaker can order it stopped.  And if we have a directive to continue, we continue.

Here, we have some degree of evidence that Mr. Betancourt would prefer to fight on.  And we have some degree of evidence of suffering.  There’s no evidence at all that he would want to give up, and there’s some evidence he can’t experience pain due to his level of consciousness.  Under Conroy, it could even potentially be argued that there weren’t enough facts to authorize substituted decisionmaking to terminate– that’s channeling the patient’s own will– and there clearly wasn’t enough suffering proved to permit anyone else to end life without knowing what the patient might want.  So Conroy does not give a different result from what the Court enabled Jacqueline to direct.

The appellants are asking this court to disregard settled precedent.  They’re also overlooking that the Supreme Court first considered Quinlan, and then considered Conroy, and then got a raft of these cases and took three — Farrell, Peter, and Jobes — which seemed to present three distinct situations, and ruled on them in tandem to illustrate a consistent approach applied across varying facts.  The Court also said, we want to get out of this business of having these cases come up through the courts.  For one, it’s too slow.  Even acting as fast as we can, Mrs. Farrell died “shackled to the respirator.”  

My clients feel that was possibly a too-hasty conclusion on the part of the court: that no one could be expected to tolerate the respirator, because in fact some people do tolerate it and live for a long time with it.  But the point is, the court said, so clearly, when it comes to these cases where the question is: do we let the person live on, supported by the technology, or do we take it away and let them die, then ALL we look to is what would the person want?  What would THEY want?  

We can’t make the decision for them.  We can’t do what we think is best for them.  That’s what the doctors want the right to do.  But under our law, we have to do as close as we can to what the patient would tell us to do.  And that’s what Judge Malone said.  That it’s not the court’s business to make that decision, and it’s not the doctors’ business to make the decision based on what they think is in the patient’s best interest and ask the court to bless it or implement it.  

And the Court understood that people wouldn’t want either to have their lives prolonged against their will, nor to be too hastily shuffled off. And the Court understood and found that this decision is made within the highly regulated web of obligations attendant upon receiving the government’s permission to practice medicine.  For example, in New Jersey, we have a very stringent anti-abandonment obligation, which Professor Pope will discuss.  And the Court understood there could be disagreement, and it said the role of the doctor is to provide information — how long might this last, how much will it hurt, what level of functioning may or may not be regained– information for the PERSON to make the decision.

And so, the appellants want to twist this around and say, well, in the olden times, the doctors all were very aggressive, but nowadays we would not always treat to the bitter end no matter what, and in fact, you know, with this guy who has cost us $1.6 million dollars, well, we think he’s had enough.  

The Supreme Court was very afraid of exactly that, though they thought it would be a nursing home administrator, or a relative who was paying the bill.  The point is, turning the question into one where it’s the patient who is supposedly asking the doctor to do something outside the standard of care by continuing to preserve the patient’s life, well, who gets to say what the standard of care to preserve a life is?  Because unless we’re very careful about that, we’ve just turned our backs on the HUGE work of our Supreme Court in telling us exactly how these cases should be handled.  The technology hasn’t changed all that much, and the law hasn’t changed, but what’s changed is the finances of the thing.

More info as it comes in.  –Stephen Drake