The Costs of a Right to Demand Treatment

by Bridget Williams

Who has the right to decide when life prolonging treatment
should be withdrawn? Should doctors have the right to refuse to use costly and
scarce resources to continue to treat a permanently unconscious, dying man? Is
there a limit to the medical resources we can reasonably claim for ourselves
and our families when there are others who have the potential to receive much
greater benefits from those same resources?

These are some of the questions that the US New Jersey
Appellate court will implicitly answer when it makes a final ruling on the case
of Trinitas Hospital v Betancourt. Trinitas is appealing a decision made by the
New Jersey court which confirmed the right of a patient’s surrogate to demand
life-prolonging treatment against the advice and will of the patient’s doctors.
The patient in question (who died before an ultimate decision was made) was
Ruben Betancourt, a 72 year old man who had existed in a vegetative state for
over a year after an episode of anoxia left his brain irreparably damaged.  Mr. Betancourt was suffering from multiple
organ failure and required dialysis, an artificial ventilator and feeding tube
to be kept alive. The chance of Mr. Betancourt regaining any form of awareness
of himself or anything around him was practically zero. He would never again be
able to live without the aid of artificial support.

The hospital wished to withdraw Mr. Betancourt’s dialysis
treatment and also decide that no attempts at resuscitation should be made if
he were to stop breathing. Mr. Betancourt’s family disagreed and wanted
everything possible to be done for him, claiming that he was “a fighter” who
would have wanted treatment to continue as long as possible. They appealed to
the courts to intervene and were successful. The hospital was instructed to
continue with dialysis and remove the ‘Do Not Resuscitate’ order.  The hospital is now appealing this decision
and arguing that doctors should not be forced to administer treatment which
they see as inappropriate.

Trinitas has maintained that its decision to withdraw
treatment is based on the treatment being inappropriate and simply ‘bad
medicine’. Whilst I agree with this reasoning, I, like some newspaper commentators,
suspect that another motive for withdrawing treatment is the significant costs
which were accumulating with the uninsured Mr. Betancourt’s treatment. However unlike
the authors of the emotively written newspaper articles, I see this motive as
both rational and justified.

Trinitas is a Catholic hospital which receives part of its
funding from the public. As such, it has a responsibility to operate in the aid
of the public and for public benefit. The cost of Mr. Betancourt’s treatment was
being paid by the hospital as Mr. Betancourt was not covered by private insurance,
and had fallen through a funding gap between Medicare and Medicaid.

Five different physicians testified that Mr. Betancourt had
no hope of improvement. And yet the courts deemed that they should continue to
prescribe costly and scarce treatments to him indefinitely. Many people object
to bringing the costs of treatment into decisions to withdraw life sustaining
treatment, they find the idea abhorrent. Many others may find abhorrent the
idea of pouring hundreds of thousands of dollars into pursuing impossible
goals, especially when those hundreds of thousands of dollars could be put
towards things that could substantially improve the lives of many people. Such
as funding research into cancer treatments, providing intensive care nursing
for an additional patient, treating a curable infection with a course of costly
antibiotics.

It is not only the cost of Mr. Betancourt’s treatment which
was an issue. The treatments he received are very scarce. Renal dialysis
machines and artificial ventilators are limited commodities in hospitals and
demand outstrips supply. These treatments would not have caused an improvement
in Mr Betancourt’s condition and yet there would have been many other patients
whose situations could be improved by these measures. In providing an
artificial ventilator to Mr. Betancourt, the hospital was potentially denying
one to a car crash victim who, after being stabilised with the help of
mechanical ventilation, could have resumed a healthy, long life. In providing
dialysis the hospital was denying another conscious patient with renal failure
that same treatment. This issue is discussed by Dominic Wilkinson in a previous
post
on this blog, which concerned a similar case where intensive care beds
were closed in order to provide life-prolonging treatment to a critically ill
and minimally conscious elderly patient. The patients denied the emergency
ventilation or intensive care are the invisible, unknowable victims who are
eclipsed by the very visible and very unfortunate Mr. Betancourt.

If the Trinitas physicians who objected to continuing Mr.
Betancourt’s treatments really did have economic motivations, it was surely
frustration at not being able to use that money and those scarce resources to
benefit other patients that was driving them. Not scrooge-like reluctance to
part with their funds.

In the United Kingdom patients and surrogates do not have
the right to demand treatment that a doctor believes is not in line with
standard medical care and is not in the patient’s best interests. Trinitas is
correct to question the right of Mr. Betancourt’s family to demand every
treatment to be provided for him, when it is clear that these treatments will
not benefit him. In supplying costly and scarce resources to patients with
little or no capacity to benefit, we are denying to other patients treatments
which could have significant benefits. When a doctor can do no more to help one
patient he is right to continue to try to help others.

see also

BioEdge: Black and white in the healthcare rationing debate

Jacob M. Appel: Rational Rationing vs. Irrational Rationing: The Struggle for the Legacy of Ruben Betancourt

Bioethics Forum – Withholding Care from Vegetative Patients: Financial Savings and Social Costs

  • Facebook
  • Twitter
  • Reddit

11 Responses to The Costs of a Right to Demand Treatment

  • Dennis Tuchler says:

    What’s wrong with ‘economic motivations’ in a case in which the real question is this: Who pays for continued life support? Not that it is the only or even the most important consideration, but at some point social costs and benefits have to play a part in the decision whether or not to continue life support. One of the costs of care-on-demand, for example, will be the increased cost of hospital care for all, when the predicted cost of indefinite care is added to the hospital accounting. This will affect low-income people worse than it will affect them in the case of termination of life support in case of total organ failure, etc.

  • Peter Wicks says:

    If we agree that economic motivations are justified in this case, then it may be interesting to consider why it is assumed by some that they cannot be. Clearly we need to distinguish between, on the one hand, journalists or special interests that have an interest in stirring things up and, on the other hand, those who genuinely believe that such motivations are wrong (these groups may overlap of course). What I’m interested in is the latter, and I would suggest that psychological denial is an important factor. The bottom line is that most of us would prefer to live in a world where people don’t get sick and die, the population doesn’t grow out of control, we can have lots of children and we don’t destroy the environment in the process. Some of us do better than others at realising that all this doesn’t add up, but I suspect that practically all of us, at some level, refuse to believe this. When things happen that make us realise we don’t live in such a world, we cheerfully shoot the messenger.

    Note to singularitarians and transhumanists: is this another form of psychological denial?

  • I have blogged about this case extensively at http://medicalfutility.blogspot.com. Dr. Williams takes a fresh approach, here, by defending what I and other attorneys have criticized before the Appellate Division: the hospitals’s motivation by costs. Williams grounds her defense on both stewardship and triage rationales. I agree that those can both be valid bases for refusing treatment. But there is no evidence that either was applicable in this case.

    Williams uses many different terms to describe Betancourt’s treatment: (1) “inappropriate medicine,” (2) “bad medicine,” (3) “no hope of improvement,” (4) “impossible goals,” and (5) “little or no capacity to benefit.” I am not sure any of these terms does much to advance analysis. The family wanted dialysis to keep Ruben Betancourt alive. Dialysis could and did achieve just that. Consequently, the goals were not “impossible.” The family did hold out “hope of improvement.” And while unlikely, improvement was at least possible. Whether the medicine was “inappropriate,” “bad” or offered “benefit” is unknown because we have no tests for determining any of these value-laden terms in the fuzzy gray area where this and most futility cases lie.

    Finally, Williams writes: “In the United Kingdom patients and surrogates do not have the right to demand treatment that a doctor believes is not in line with standard medical care and is not in the patient’s best interests.” (emphasis added) This is a little misleading because the ultimate test is not the doctor’s “belief” about best interests. Pursuant to the 2004 ECHR ruling in Glass, the court will determine whether patients and surrogates have the right to demand certain treatment.

  • I have written extensively about this case in the general and professional press here in New Jersey. (I also represent amici curiae on the appeal.) My recommendation to anyone who wants to understand the issues is that they read the briefs collected at Prof. Pope’s blog, or, at the very least, read the full press reports, not merely the op-eds and letters from Trinitas’ CEO.
    The June 4, 2010, Wall Street Journal article by Suzanne Sataline is a good place to start.
    http://online.wsj.com/article/SB10001424052748703340904575285121097569484.html?mod=WSJ_hpp_sections_newyork

    Dr. Williams parrots words, including “multiple organ failure” (Gary Horan, Trinitas CEO, letter to Newark Star-Ledger, coining a phrase inaccurate to describe Mr. Betancourt, unless you count his two kidneys as “multiple”), “dying” (Horan again, despite testimony from his own staff doctors that they had no way to predict whether Mr. Betancourt would die within a foreseeable period) and that the surrogate “demanded” treatment (passim.) Dr. Williams seems to have missed the following facts:
    1. Betancourt’s brain damage was caused by the hospital in the first place, in the botched follow-up to a successful thoracic surgery in 2008;
    2. The medical testimony at the trial was not unanimous, and even included disputes among the Trinitas doctors themselves as to, for example, the extent of Mr. Betancourt’s brain damage and whether he was sentient;
    3. Horan refers to “five physicians” testifying, and Williams refers to “five different physicians”– these were the Trinitas doctors. In the press, Trinitas and its supporters imply (wrongly) that there were no other doctors who testified, and Williams adds another misleading implication, that the five testifying Trinitas-affiliated doctors were not intimately connected with each other;
    4. Trinitas did not merely “wish” to withdraw the dialysis port and treatments (which would have ended Mr. Betancourt’s life within a few days had they not been reinstated by the judge)– the hospital actually did so, on its own, over the objection of the family;
    5. The family did not “demand” or “order” treatment. Trinitas initiated treatment and then unilaterally discontinued it six months later after the money ran out. The Court ordered it reinstated. The doctors seem to feel the family was bossing them around. The record reflects otherwise.
    6. Trinitas was granted a plenary, multi-day hearing at which to prove their contention that medical ethics required the withdrawal, and they failed to support that claim;
    7. New Jersey law already provides a mechanism for ending life support on humanitarian grounds, even overriding the next of kin, but the hospital failed to meet that standard also.
    8. The family, and, since the hospital has chosen to make a test case out of it, we the public at large, are extraordinarily fortunate that they found highly experienced and able counsel to represent them at that chancery court hearing on very short notice and, I believe, in the spirit of public service. Without the devotion of hundreds of hours of skilled work to make that record, Trinitas’ actions would have ended Mr. Betancourt’s life and might never have come to public notice. Too often, the would-be allies of the powerful ignore the high costs and barriers to the powerless of careful fact-finding and equitable dispute resolution.

    I agree the doctors are not Scrooges. But a preference to care for someone they can “cure,” rather than a disabled or elderly person who may not “improve,” has been extensively documented and can taint their attitude towards a patient even when, as here, there is absolutely no evidence whatsoever that shortage of resources denied care to anyone else in favor of Mr. Betancourt. One way to prevent acute-care patients from competing with disabled people for money would be to allocate the funding streams for those different needs more specifically. It certainly beats just doing away with human beings whose plight elicits less empathy from more-able-bodied ethicists. From an author who disdains the “emotive,” Dr. Williams’ words convey strong emotion: particularly, condescension and disgust that old and sick people with severe brain damage would clog up a bed.

  • Peter Wicks says:

    While I do not wish to comment further on the facts of this case (I’m neither sufficiently knowledgeable to do so intelligently nor sufficiently interested in the specific case to gather the necessary knowledge), I am interested in the issue brought up in Anne Studholme’s comment about disdain for the “emotive”. This seems to me to be closely related to comments I have made previously about the limitations of a purely rational approach to ethics.

    The argument I have been making is that ultimately morality is something we have to decide, rather than something we can deduce logically, and (in line with another recent post here) that it is important to be explicit about our values. If, by contrast, we believe that morality is something that can be logically deduced, then it becomes far more important to banish emotion from our discussions. But what is the basis for such a belief? My answer: none that I have yet found remotely convincing. So rather than trying to banish emotion for our discussions, what we should be doing is to be as clear as possible about the values that underpin the positions we are taking.

    The challenge in this case would be for both Dr Williams and those opposing her position to state clearly the values that underpin their positions. We might (or might not) find that this is indeed a disagreement about values rather than facts.

  • This is in response to Peter Wicks. His point is well-taken and leads to some interesting conclusions in the legal sphere. One thing seems clear (to me at least) in the public debate over Betancourt v. Trinitas: people’s values (and I do not exempt myself) color which facts they choose to emphasize. I think it cuts much deeper than that, as well, but even at the most superficial level values permeate the discussion. That does not mean that a full appreciation of the factually-rich record is not critical for understanding and judging this or any case. But so many aspects of judging– including, for example, when to “stop slicing the baloney,” i.e., when to curtail the ever finer parsing of the infinitude of physical experience in the name of coming to a resolution within the limits of the judicial resources society can allocate to any dispute– depend on, well, judgment. Human judgment. Inescapably value- and experience-informed judgment. I agree that the greatest possible transparency about those values can only help.

    A core epistemological question in jurisprudence is whether legal principles and case decisions are (or even can be) deduced rationally, or whether they must be arrived at by a decision which then derives its legitimacy from post-hoc rationalization within agreed-upon legal norms. Philip Bobbitt explored this question with concision and very apt illustrative examples in his 1991 book Constitutional Interpretation.

    The conundrum tends to play out as, “I’m rational, you’re emotive!” Bobbitt shows (as a matter of logic!) that judges must decide by some mechanism other than pure logic, and that they in fact do so, and that this is not inconsistent with Anglo-American notions of how courts interpret statutes (including constitutions) and decide cases, so long as the decision is then capable of being grounded in the accepted framework and modalities of legal discourse.

    I am not aware that Bobbitt’s position is seen as controversial: just deciding the damn case was the heart of a judge’s calling and not something the precedents could do for him, particularly in a hard case where able lawyers, and informed people, in good faith could disagree. As Learned Hand put it, “Son, I get paid to decide cases. At some point, I have to get off the fence and turn out an opinion.” (As recalled by Gerald Gunther, who adds that, nonetheless, “You could not predict how he would rule on a particular case, the way you can predict many judges, because he did not let ideology or the interests represented in a case dictate his decisions.”)

    But if this is true, and I am convinced that it is, then the necessity of having judges, and commentators!, who fool neither themselves nor the public into thinking they “merely call balls and strikes” — for whichever team– is clear. (Or, rather, that section of themselves and the public who remain unaware of payback calls, adjustable strike zones, and all the other reasons why baseball pitches could not be called by an Umpire-o-tron without deeply changing the game and leeching much interest and point from it.)

    As is the necessity to acknowledge the truth of Wicks’ statement that morality is not mechanical, but that that does not, in itself, reduce all our judgments to “gut” calls unworthy of respect by anyone whose gut disagrees.

  • Thank you all for your helpful and enlightening comments.

    Having only recently become aware of this case, and despite reading as many of the online materials I could get hold of, my knowledge of the facts and the progression of the case over the last year is limited, as is my knowledge of law. I thank Professor Pope and Ms Studholme for contributing their knowledge to this are of the discussion.

    It was not my intention to provide an opinion on the legalities of this case, or what would be a correct decision under current law. I am more interested in the ethics behind the issue and, more specifically, the normative question of whether the costs and allocation of resources should be given any consideration in treatment limitation decisions. I accept that, as Professor Pope and Ms Studholme point out, it is still contentious whether this particular case is one of medical futility. This is something to be decided in the NJ court, not on this blog. I was using the case as an example, in hindsight, given that a final decision has not been made, it was perhaps not the best example to choose. However I do think it has brought up a lot of important and relevant points of discussion.

    It worries me that Ms Studholme perceived my post as little more than a message of “condescension and disgust that old and sick people with severe brain damage would clog up a bed”. This was not the sentiment I wanted to convey, indeed, I believe it’s not the sentiment I hold. If I am to be honest, the emotion that is colouring my thinking is frustration at an unwillingness to accept that society is limited in its ability to provide medical care and that these limitations necessarily prevent us from pursuing all potential health benefits – something like the denial Peter Wicks refers to in his earlier comment. This does not apply only to patients with disordered consciousness, and not only to the elderly or disabled. In many other situations treatment is denied to patients who have a chance of benefitting. A hypothetical example:

    An able-bodied ethicist has cancer. There is a drug which has a very small chance of prolonging his life for a few years, however this drug is very expensive. The general medical opinion is that the chance of this drug causing any prolongation of life is so low that it is practically zero.

    In my opinion, the ethicist in this case should not have this treatment provided to him at the public’s expense. No matter how young, intelligent, virtuous or even able-bodied he is. Of course in an ideal world he could have every potential benefit provided to him, no matter how unlikely or expensive it is. But obviously ours is not the ideal world.

    Some will disagree that this story of the ethicist is comparable to patients in a chronic state of diminished consciousness. As Professor Pope points out, treatment is prolonging the life of Mr. Betancourt, it is achieving the family’s aim of keeping him alive. Here is where the value judgments come in to play.

    I do not agree that keeping a patient alive in a vegetative state is in itself a good thing for that patient, rather it maintains the possibility of a good occurring – namely the recovery to a state of consciousness which allows pleasant or meaningful experiences. I understand that this is a tricky definition as pleasant and meaningful are subjective terms and difficult to ascertain for another person. And I want to clarify that this state could very well occur with the patient still being reliant on others for care and with decreased levels of cognition than they previously enjoyed.

    Patients who are in a true persistent vegetative state (which as Ms Studholme points out, may or may not have been the case for Mr. Betancourt) are not aware of themselves or their environment. They have a very small chance of recovering to a minimally conscious state and a much smaller chance of improving beyond this. Whether minimally conscious state is one which allows pleasant or meaningful experiences is not clear. There is a chance it is, there is a chance it is not.

    Of course, the patient is not the only person affected by decisions surrounding his treatment. The well-being of his family will almost always be affected by whatever decision is made. Whether the potential benefits to the family should be a factor in these decisions is debatable (although personally I think they should) as traditionally medical ethics has centred on patient beneficence. Whether the benefits to the family are enough to validate the costs is another important question. My instinct is to say that they don’t but this is a question which requires more discussion than I can offer here.

    So, in my view, the case for the ethicist and the vegetative patient are similar. The benefit of treatment for both is a small chance of more pleasant and meaningful life. The cost of treatment for both is high (the 1994 US multi-society task force on PVS gives estimates between US$126,000 and US$180,000 per year for long term care). It seems in both cases if the patient wants the treatment it should not be at the expense of others. The obvious objection to this argument is that this leaves us with unfair discrimination against the poor. And it does seem unjust that whether a person receives care or not is decided by their ability to pay. But as Dennis Tuchler points out, it may be that trying to avoid this situation is worse for all in the long run.

    Thank you also to Peter Wicks, for your thought-provoking comment on the role of emotions in reasoning. I think the question of whether we should welcome our emotions into our reasoning, or even if we are even capable of avoiding this happening, is a very interesting one. I wish I had something interesting to add to the discussion but all I can do is agree with Ms Studholme’s view that we implicitly pay more attention to the facts which support our ‘gut instinct’ or pre-conceived beliefs, and that if we are conscious of this occurring we may go some way to coming to a more accurate representation of morality.

    Once again, thank you for your comments. As an undergraduate (not Dr.) who is relatively new to ethics, they are both helpful and appreciated.

  • Dominic Wilkinson says:

    it is worth separating different types of disagreement that potentially underlie different views about the Betancourt case.
    1. Is it permissible to limit potentially beneficial treatment on the basis of limited resources?
    2. If it is permissible to limit treatment in the setting of limited resources *when* should they be so limited ie what is the standard on which we should judge the reasonableness of withholding treatment?
    3. Does the patient in this case fall above or below that standard?
    (4. Who should decide whether or not the patient falls above or below the standard?)

    From the comments above it appears that potentially all agree that the answer to the first question must, sometimes at least, be affirmative. Much as it would be good to provide every conceivable potentially beneficial treatment to every patient who could benefit from it, we simply cannot. On both sides of the Atlantic there is a need to draw a limit to medical spending. The financial resources available to provide medical care are not infinite.

    For some at least the answer to the second question is whether or not treatment is ‘futile’. If ‘futile’ is understood as meaning that the treatment in question is not beneficial to the patient, then we at least have a clear normative standard for rationing. Yet, as this case shows, it is no simple thing to say whether or how we should measure possible benefits in this calculus. There is considerable disagreement about whether or not treatment for this particular patients was or was not ‘futile’. One objection to the futility standard for rationing is, therefore, that it is too nebulous. But a second objection to this particular level being set is that it is too stringent. It would require us to provide treatments to patients regardless of the cost whereever there is some plausible potential benefit – no matter how small or unlikely that benefit.

    Instead we need a different threshold for rationing decisions. It is difficult to know exactly where this threshold should lie, but Bridget alludes to one intuitively appealing principle – let’s call this the principle of disproportionate cost. Where the costs of treatment are very high, and the benefits of treatment appear very small or unlikely (or both) it is reasonable to withhold or withdraw that treatment. On the basis of this principle Ruben Betancourt’s treatment appears (from what I can tell from this distance, and without all available facts) to clearly fall below the threshold. The costs of providing ventilator support, dialysis and intensive care are disproportionate to the potential benefit.
    If we do draw on such a principle, there is a further question about who decides whether or not treatment in a particular case meets the criteria (the parenthetical point 4 above). The process should be transparent, robust and unbiased. One answer, suggested by Professor Pope in his comment about the right to treatment in the UK/Europe, is that the courts should decide. While that would provide a due process that fulfilled all of the above criteria – it would also, potentially, be both impractical and (relevantly) extremely expensive…

  • I saw Bridget’s reply yesterday and wanted to get back to her. This post also incorporates a response to Dominic’s recent post. (And since the presumed or implied titles can be confusing, let’s all be on first-name basis!)

    First, having just plumped for first-name familiarity, I do need to say that I too hastily presumed, upon seeing Prof. Pope’s (oh– Thad’s!) address to “Dr. Williams,” that Bridget was a known practitioner within the academy and deserved the sort of full-blown riposte I would normally save for a more grizzled veteran in the field. As my father always remarked, “When in doubt, salute!” Indeed, but “when in doubt, bash away” may be overkill, and I apologize. This, though, means that titles can affect the discourse, in part because they roughly approximate the experience level of the individual.

    Had I understood that Bridget was an undergraduate gamely asserting her views, I would almost certainly have been more gentle. As Betancourt v. Trinitas attracts attention in the blogosphere, commenters with axes to grind have propagated versions of the facts bearing less and less relation to the actual dispute. From her response, it is clear that Bridget is not one of these people. I am very glad that she has continued this dialogue, and I appreciate the chance to have read her further thoughts.

    Dennis, Peter, Bridget, and now Dominic (not to mention Jacob (Appel)) have employed Betancourt v. Trinitas as a springboard to discuss rationing of medical resources. It must be repeated: Rationing of medical care is not at issue in this case. That cannot be noted too strongly. What is at issue is the following: in a very, very wealthy society, which has chosen, among other things, to spend 1 trillion dollars on a war over the past seven years, and where at least for the time being medical care is not EXPRESSLY rationed (more on that in a minute), and where the particular doctors under discussion discontinued care for what they claim were exclusively humanitarian impulses on behalf of the patient’s best interest, and where people with diagnoses of persistent vegetative state are not (yet) written off as brain-dead, and where, at least in theory, care of disabled people is not limited according to the nature of their disability (more on that in a minute as well), and in a U.S. State– New Jersey– with a highly-developed body of law leaving the choice of whether or not to employ life support up to the person whose life is at issue, and with the medical evidence mixed as I described above, whether in this instance the New Jersey courts will make an exception from their long-established rule. I doubt they will, and I do not believe the case has any resonance beyond that. (I do not think this is a Bobbittian hard case.)

    Legal cases involve real people and highly particularized facts. In this instance, a well-developed framework of precedential caselaw also will order any conclusions to be drawn from the matter. That makes many of these cases, in general, and this one, in particular, ill-suited vehicles for policy discussions that range widely from the issue presented. Sometimes that issue is rationing, here it was not. While it may well be true that Trinitas was making a cost-based determination that Mr. Betancourt had “had enough,” that debate is political, not for the courts.

    Nor is this necessarily a case about a family requesting all possible treatment. It appears that Mr. Betancourt was intubated/ventilated and started on dialysis without any consultation with his family when he was brought by ambulance from his nursing home to the hospital. The question was: under New Jersey law, at what point and upon what information would it be appropriate to discontinue the treatments which were keeping him alive? The question was NOT whether given his condition dialysis and ventilation would be appropriate in the first place. We do not have a record of exactly what his mental and physical condition were when he arrived at the emergency room from the nursing home many months before Trinitas stopped his care.

    My own point of view is that rationing decisions, in America, must be made in keeping with the extraordinary wealth of this country. I am aware, for example, of the amount of money that could be “saved,” according to some calculations, were care to be denied to all people with a PVS diagnosis. I agree with L. Syd M Johnson that the costs of deciding to end these lives far outweigh money. http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4789&blogid=140 And the money itself is little by comparison with our wealth.

    Though this is rarely acknowledged openly, because we are ashamed that it is true, disabled people are already denied much care. They are denied, in the name of money, the ability to live in their own homes. Those with developmental disabilities, or dementia, or quadriplegia, have been denied treatment in the name of “conserving” resources, or in the name of maintaining “dignity.”

    Has the point come in America where we are forced by circumstances beyond our control to parcel out who should live and who should die? Perhaps it has, but I think not. Healthcare is indirectly rationed in this country in part by ability to pay, in part by how well connected a person is within the professional medical community, in part by geography, etc. And that should be remedied. But to say that we are at a point where we must choose on the basis of cost alone, as if adrift on a lifeboat, who will be permitted a place and who will be pushed overboard, or who will be educated and who will not, or who will be fed and who will not (tube-feeding is often a substitute for what would otherwise be hours of spoonfeeding each meal in minute sips), and, ultimately, who will receive the protection of the laws and who will not, is either to underestimate our resources or to underestimate the unavoidable moral corrosiveness, the emotional hardening, the misfortune of making those choices. “Deserves death? I dare say he does. Many that live deserve death. And some die that deserve life. Can you give that to them? [Well, sometimes, perhaps, somewhat, yes, for a while.] Then [nonetheless, or perhaps therefore] be not too eager to deal out death in the name of justice, fearing for your own safety.” Or, Tolkien might have added, for your own purse. Not do not ever do it, necessarily, but: do not be too quick. There are other costs.

  • Professor Pope’s blog has tons of information on Betancourt v. Trinitas. He gives the link in his post above, but, because of the extra period at the end of the sentence, clicking it doesn’t take you to the correct site. Try this:
    http://medicalfutility.blogspot.com/

    For the blog maintained by one of my amicus curiae clients, see
    http://notdeadyetnewscommentary.blogspot.com/

  • A. Mangalik says:

    I understand your perspective and agree that unless we have a ruling from an appropriately high level court, the legal issue will remain unresolved. That is sad but that is the way it is.

    However, paraphrasing (or modifying) Williams statement, I would like to put a different perspective on the issue. A point I have made many time is if we change the “doctor” to “a panel of appropriately qualified and trained professionals” and change “believe” to “in their considered expert assessment” we would have a different situation. This panel would have several strengths that the courts do not.

    (1) Knowledge of medical facts and previous observations and data.
    (2) Knowledge of that patient’s disease, diagnosis, physiological state, treatments that have been tried and what kind of results they produced.
    (3) A lack of an agenda. This could be achieved by having panel members from different backgrounds and specialities and with affiliation to different institutions.
    (4) Face to face interaction with patients and/or family.

    The courts, as is well know, have made major rulings with a 5 to 4 majority. To me this means that issues are not clear cut from the legal perspective and/or opinion, belief and bias play a role in the way the justices opine. A 5 to 4 makes it law and we all have to live by the ruling. The panel, as I see it, will be an unbiased body, with direct information of the patient. It will be in a position to evaluate and sympathetically assess the questions like “inappropriate”, “bad”, etc. It can explain to the patient the reality of “hope of improvement” and determine the meaning of benefit – to whom and in what way.

    I think the time has come when those of us who are concerned and saddened by the pain and suffering that inappropriate/futile treatments cause should be proactive and vocal. If ever the courts really face the issue and give a ruling that addresses the core issue, we will deal with it. It may not give us a safe harbor, but that is for the future.

    We should speak out as Bridget Williams has. We should focus on the suffering but should not be quiet about the waste of resources – money, morale and equipment.

Authors

Subscribe Via Email

Affiliations