Bioethics, healthcare policy, and related issues.
The “Baby Joseph” case has been making the rounds of the right-wing press for some time, and is now in the mainstream press due to a confluence of right-wing hype and a predictably distorted Canada-vs.-US angle. As always, bad cases make good press releases, and rational standards of care suffer.
The child at the center of this case is an infant born with an unspecified “neurodegenerative disease” that has rendered him ventilator-dependent and in a “vegetative state”. (No press source I have seen has used the term “persistent vegetative state”, which has an exact clinical definition, and no doctor has been quoted on the patient’s actual condition, so it is not entirely clear what his status is.) It seems to be agreed that the condition is terminal. The family has had one child with a similar condition, who was brought home from hospital and died six months later. They are requesting to do the same with this child, but his vent status complicates this.
Here is a reasonably clear explanation of the background of the case:
The hospital precipitated the standoff last month when it sought the family’s permission to remove Joseph from his ventilator. This would have led to suffocation due to his progressive neurodegenerative disease, which his doctors say is fatal anyway.
The Maraachlis want to bring Joseph home to die, but to do so he must be removed from his ventilator and given a tracheostomy.
The hospital has refused to do a tracheostomy, insisting “it is not a palliative procedure. It is an invasive procedure in which a device is installed in a hole cut in the throat.”
For its part, the family refused permission to disconnect, then went public over it, then viral, with a save-baby-joseph Facebook page, a petition site by the same name and YouTube videos showing the baby, who the hospital claimed was vegetative, responding to tickling.
The story crossed the border when a Detroit hospital initially agreed to examine Joseph but then reneged. Fox News jumped on the story anyway, and in the resulting furor the staff at London Health Sciences Centre was subjected to death threats and accusations of murder and euthanasia.
The hospital has secured favorable rulings from both a judge and the Ontario Consent and Capacity Board, but the family has nonetheless gotten the hospital to hold off. Now the latter is insisting it was always willing to let Joseph go home — without a tracheostomy.
The hospital also offered to assist with a transfer to another facility willing to accommodate the family, but none could be found. Every hospital contacted, or which agreed to look into the case, refused to accept the transfer – a situation that is common in cases in which families demand medically futile care.
Today, a Catholic group known for grandstanding on end-of-life cases has apparently arranged a transfer to a US facility; Fox News helpfully inflames the issue with its usual journalistic integrity:
The baby who was hours from being pulled off life support at his Canadian hospital has been rescued by the national director of Priests for Life and taken to the U.S. for treatment.
Thirteen-month-old Joseph Maraachli, who is currently kept alive by a respirator and was recently denied a transfer to a Michigan hospital to undergo a tracheotomy, arrived in the U.S. early Monday morning with Fr. Frank Pavone and other Priests for Life staff.
“Priests for Life staff toiled through the night for many nights, working in concert with dozens of people to make this possible,” Father Pavone said in a statement. “Now that we have won the battle against the medical bureaucracy in Canada, the real work of saving Baby Joseph can begin.” . . .
“The medical board overseeing his case is apparently convinced that giving proper care to ‘Baby Joseph’ is futile,” the [Priests for Life] website reads. “They don’t mean that the medical care won’t help him. They mean his life in its current condition isn’t worth the trouble.”
(The patient was not “denied a transfer” by his current hospital – a hospital in Michigan was contacted, reviewed the case, and refused to initiate futile treatment, just as the current hospital has done. And note that nobody is going to “save” this patient – he is dying, and even his family recognizes that. Note also that “the medical bureaucracy in Canada” are the ones who have kept the patient’s body alive this far, and were still doing so at least as of last night. And, finally, note that nobody has said, and surely nobody believes, that caring for this patient “isn’t worth the trouble”; what they mean is in fact precisely that the requested care – a debilitating intervention prolonging a hopeless case for an unconscious patient – “won’t help him“. The loathsome Pavone is deliberately inflaming the issue to grind his personal axes regarding termination of treatment and universal healthcare. As in every case of futility, the problem here is that the further treatment the family is demanding won’t do any good, but doing no good is pretty much Pavone’s mission in life, so it was inevitable he’d insert himself and start shooting his mouth off.)
The case is, sadly, another familiar example of a fairly common clinical tragedy, in which a family, for emotional or religious reasons, wants an outcome that may not be possible or optimal, and right-wing ghouls descend to distort the facts and make use of the family’s tragedy for their own religious and political ends. Predictably,
Michael Schiavo Bobby Schindler has gotten aboard, still complaining about the case of his sister Terri Schiavo and making wild accusations, and the usual range of suspects is also clamoring for attention.
Before moving on to the larger implications of this otherwise ordinary case, however, it’s worth giving some thought to what is actually going on here, and trying to understand the interplay of interests and moral principles that are relevant.
Reasons for Refusal of Treatment
Almost the only information available about the case has come from the family, their lawyer, and the media-hungry agitators who are making it a political issue, so it is very hard to know what the actual facts are. But the case does seem unmistakably to be one of medical futility: the patient has no hope of recovery, further treatment will offer no change in his clinical condition, and the treatment demanded imposes costs and burdens without hope of changing the overall clinical course. Under these circumstances, the hospital recommended termination of treatment, and when the family refused the hospital waited a certain period and then moved to terminate treatment under a futility doctrine. I don’t know the exact terms of such policies in Canada (or whether they fall under national, local, or the hospital’s own authority), but in broad brush this is a familiar course of events.
The reasons for termination of futile treatment should be obvious, but are worth rehearsing again: Inevitably in such cases, there are accusations that the hospital is doing this “for the money”. (This is especially popular among American right-wingers when the hospital operates under a governmental single-payer system, as in this case. But of course US hospitals, for-profit or otherwise, are equally budget-driven, and nobody ever stops to mention the millions of Americans who never get into this situation because they simply have no access to care in the first place. But if red herrings were outlawed, there wouldn’t be a right wing at all . . .) Certainly financial resources are an important consideration – every dollar spent doing no good in a hopeless case is a dollar not spent helping a patient who could benefit. But conflicts over futility are not necessarily, or even mostly, triggered by financial considerations primarily; other resources can be equally or more important: a vent-dependent patient is taking up a ventilator, which is an expensive piece of equipment in limited supply, as well as an enhanced-care or ICU bed, nursing staff, and a part-time respiratory technician, all of which are likewise expensive and stretched thin in most hospitals. Regardless of financial issues, all this represents resources that other patients may need, and which at busy times may mean the difference between life and death for someone who could benefit in a tangible way from resources being used to provide no tangible clinical benefit to a vegetative patient. In some cases, families demand literally unlimited care for patients who can experience no benefit at all. In addition, if a given treatment is literally futile, continuing to impose that treatment may be a harm to the patient (since almost all treatments cause some degree of disruption or discomfort, and in the case of futile treatments this is not justified by any expected benefits). Clearly, limits have to be set; it seems just obvious that limiting treatments that are actually futile would be the first and least objectionable place to start.
In this case, the family does seem resigned to the fact that the patient’s case is terminal. What they are asking for is – apparently – not a miracle cure but the opportunity to care for the patient at home for as long as possible before he dies. This is more realistic than in some of these cases, and you can sympathize with the family’s desires. It’s reasonable to ask why the hospital objects, since the intervention needed to facilitate this request is not difficult to perform, and the patient would then no longer be taking up a hospital bed. Because the case has been so poorly reported, it is not clear exactly what the hospital is thinking, or why they oppose a terminal discharge to the patient’s family’s home. But it appears to me there are two issues at hand:
First, although the patient would be leaving the hospital, he would still require extensive outpatient services. The news stories do not bother to mention this, but he cannot “just” get a tracheotomy and go home – since he’s vent-dependent now, he’s not going to develop spontaneous respiration just because he’s got a hole in his throat. The tracheotomy is preparatory to placing him on a portable ventilator, which he will remain on until he finally dies. It’s easier to manage a home ventilator with a trache than with an endotracheal airway, but he’s still going to be vent-dependent for the rest of his life. As such, he will also need nursing and respiratory care, and physician oversight. Some of this can be managed by the family, but the patient will still need considerable resources from the local health authorities. It is possible that the hospital regarded this – equally clinically futile – care as an unwise use of resources, whether or not the patient was still hospitalized. Second, as the hospital notes, a tracheotomy is an invasive procedure that does significant damage to the patient’s airway, and in this case will provide no overt clinical benefit. Although this might allow the patient to go home, and that seems on its face to be a good thing, it’s important to remember that the patient himself is not going to experience any benefit from that. If this patient is truly vegetative, he is not going to be consciously aware of anything that happens, including whether he is at home or in a hospital. Sending the patient home – as natural as that seems – is purely for the family’s benefit in terms of any conscious experience any of them might gain from this. It seems to me that the hospital might be taking the line that the trache procedure cannot be justified on these grounds because it is not for the patient’s own personal benefit; the family, however well-intentioned, is clearly asking for a surgical procedure for this patient for reasons of their own – a request that directly violates the most basic accepted principles of decision-making for non-autonomous patients (i.e., that the decision-maker must act for the patient’s benefit alone, and especially not for their own benefit). This second consideration looms large: because this is a congenitally neurologically damaged infant, there can be no question in this case of “what the patient wants”, or even “what the patient would have wanted” (since the patient in this case has never, and apparently would not ever have, wanted anything). And given that the patient has no conscious experiences, good or bad, anything done in this case can only be to gratify other parties’ wishes (the family’s, and increasingly those of the growing crowd of right-wing religious agitators who continually turn these cases into fodder for their cultural jihad).
Viewed from these two perspectives – that continued intensive home care for a terminal, vegetative patient is equally as futile as continued hospital care; and that the family’s request for a surgical intervention in order to take the patient home with them is motivated by their own emotional needs, not an anticipated benefit to the patient - the refusal of the family’s request not only makes more sense, but would in fact have to be regarded as correct, barring other factors that haven’t been made clear.
[Note: there are some factors of the case that aren’t clear, and make it harder to figure out what all is going on here. First, the article at top says the hospital did, late in the game, state that the patient could go home without a tracheotomy. This doesn’t change the fact that continued intervention is futile, but it weakens the objection regarding non-beneficial treatment (the tracheotomy). Futility doctrine has not generally been taken to the point of forcing families to terminate treatment if an alternative could be found; it’s not clear why, if they could discharge the patient without surgery, they didn’t do so. At the same time, today’s intervention – transferring the patient to another hospital in a different country – also does not accomplish the family’s goal of taking him home with them. It may be that they decided they would rather seek continued life support in a hospital setting if they could not get the home-care option they preferred, but that makes the case a more typical futility scenario of a family demanding open-ended treatment that produces no clinical benefit, rather than one of them just seeking help in finding a more congenial terminal setting. Interestingly, both of these developments minimize the significance of the tracheotomy as the sticking point in the case (unless he’s going to get a tracheotomy in the US, and then go back to Canada to die, which would create a complicated administrative conflict – are Canadian providers obligated to pay for after-care for procedures in foreign countries that they had previously refused to authorize at home?). With so much unexplained about the case, it’s hard to know how or why any of this is happening.]
For the same reason that the tracheotomy will not benefit this patient, however, it should be noted that it will not severely harm him either. Ventilator dependency is uncomfortable, and a tracheotomy generally destroys the patient’s larynx, making it impossible for them to talk. But, since this patient – if he is truly irreversibly vegetative – cannot feel or speak anyway, those are not major issues. The patient is not going to experience any conditions, at home on a vent, worse than he currently experiences in a hospital on a vent (which is to say, nothing at all). This suggests – again extrapolating from the vague descriptions in newspaper stories, mostly from very biased sources – that the objection to the tracheotomy, though properly based on considerations of preventing the imposition of unbeneficial harmful procedures on the patient, may be overstated; this procedure may be futile, but it would not be a harm that the patient was actually conscious of.
Given that observation, the objection that the family is acting out of their own interests is likewise well-taken but perhaps rather formalistic: they are not acting strictly in the patient’s interests, but the patient has no (consciously felt) interests and can (consciously) experience no harms, so what is gained by insisting on strict adherence to that principle here?
At this point it is also meet to introduce the question of subjective benefits of treatment. Throughout the discussion above, I have been careful to focus on “clinical changes” from treatment, and “conscious experience” of benefits and harms. These are the objective consequences of treatment: actual changes in the patient’s clinical condition as determinable by examination, and the actual experience of and reaction to events by the patient themselves as consciously felt by them. I have been careful not to specify what clinical changes actually constitute a benefit, and I have avoided the question of subjective benefits that might conceivably accrue even to an unconscious or vegetative patient. But it’s fair to acknowledge that some people might regard clinically futile treatments – treatments that do not produce a significant change in the patient’s clinical condition – as beneficial, if they serve non-clinical interests the patient may have. Some patients have a personal or religious desire to live as long as possible, regardless of clinical condition; this is valid where it represents an authentic desire of the patient. (It is in no way mandatory, still less anything that religious reactionaries can be allowed to impose against a patient’s will, as in the Schiavo case and so many others. And of course the mere existence of that desire does not constitute an obligation on anyone else to provide the resources to fulfill it.) Some patients may want to die at home rather than in a hospital; some may want to meet specific goals in life (live to see a meaningful event in their lives, spend time with their family before the end, wait to have final meetings with friends or family members, etc.). And some may have religious beliefs about the right way or right time to die. All these may require continued treatment in otherwise clinically hopeless cases, and they are certainly valid interests of some patients that can be met through continued treatment. It is important to remember that all treatment – whatever its clinical consequences – is valuable only because it serves some interest of the patient; the clinical impact of any treatment – however great or minimal – means nothing except in the light of what the patient themselves wants. And so, clinical treatments can only truly be considered futile if they fail to serve the goals of the patient in seeking treatment, not simply because they do or don’t produce a cure or any other particular clinical outcome. This consideration is meliorated in the Baby Joseph case by the fact that the patient himself, as noted above, holds no such desires. But we should remember that it’s too simplistic to treat “futility” as simply a matter of clinical efficacy in a technical sense.
Given the considerations above, and reading between the lines of the news reports a bit, the situation seems sad and confounding, but far from a scandal. That hasn’t kept the vultures from whipping up their usual “death panels” frenzy, of course, but we don’t have to play along.
The family wants to bring their child home to be with them; possibly also they want to prolong his life as far as possible regardless of his condition, but that part’s less clear. Either way, it’s easy to understand, and perhaps sympathize with, their wishes. But we must also realize that this is their desire, arising from their own needs and interests; it cannot be an individual desire on the part of the actual patient. This is not to accuse the family of being uncaring or manipulative; no doubt their desire is to care for their son the best way they can, which means as closely a part of their family as they can manage. It’s just that, in the nature of things in this case, that desire cannot arise from or be shared by the son himself, and so the family’s sincere desire to provide the best possible treatment runs up against the facts that this patient cannot expect any overt clinical benefit from prolonged treatment, and cannot form or hold any personal, subjective values or goals that would be served by continued treatment. Thus, the family’s plans do not actually serve the patient’s own, personal good, no matter how sincerely they intend to do so. (Note particularly that the religious value some place on prolongation of life cannot be an issue in this case, since the child has no religious – or any other kind of – beliefs of his own.)
The hospital wants to minimize the expenditure of clinical and financial resources without benefit (on an inpatient, and possibly also an outpatient basis); in this case continued treatment of this patient will produce no clinical benefit other than prolonged stasis in a vegetative state. The hospital also apparently objects to performing an invasive procedure on a non-consenting patient with no hope of clinical benefit, in response to a third party’s wishes – though here also their precise reasoning is less clear. Since the patient has no personal desires to be accommodated, the issue of possible subjective benefits from clinically futile treatment does not arise. Thus, the hospital is acting in keeping with obviously reasonable priorities and well-recognized principles of patient autonomy, and is not acting contrary to the desires or interests of the patient himself.
In light of this balance of interests and principles, the hospital’s objections to continued or increased treatments in this case are not unreasonable. Even so, given that the patient cannot suffer conscious harms by more-aggressive intervention, it may seem that the hospital is being unnecessarily nit-picky. It may seem reasonable that, even though the patient cannot benefit overtly and has no desires regarding possible subjective benefits, it might be reasonable to “give the family the benefit of the doubt” and let them do what they want. The problem with this is multi-fold: (i) it establishes a principle whereby unconscious patients without advance directives can be treated whatever way someone else wants, for the other party’s benefit – thus voiding the established consensus on substituted judgment; (ii) it elevates parents’ religious or personal beliefs above patient interests for minor patients – an already-contentious issue in decision-making for children by parents; (iii) it would essentially void the entire concept of medical futility by making virtually any articulated desire by family members (or other third parties) a sufficient ground for prolongation of treatment no matter how hopeless (and it is easy to suspect that this is in fact the goal of the right-wing interlopers who have jumped on this case). Even if we are tempted to void ethical principles in this case, where it seems there are few or no direct interests of the patient at stake and the patient has not expressed any prior preferences that might be violated by continuing treatment, and even if we are willing to disregard any questions of competing priorities or limitations on resources (which the hospital understandably is not), agreeing that principles can be voided, and resource limitations should be overlooked, is a dangerous step when so many such cases arise, and especially in the face of a coordinated movement to hijack patient-centered care for religious and political reasons.
One feature of this case that does call out for sympathy is the obvious concern of the family for their son. And this is common in many such cases, not only involving children but dependent adults, elders, and others. It is understandable that in these cases the family’s interest in soothing their own feelings is not distinct from, but to a large degree indistinguishable from, their love for the patient and their desire to do the best for that patient themselves. It seems cold to insist – even if technically true – that taking a family member home to die does not serve that patient’s own interests (because, as cognitively diminished, they may have none). I am tempted to speculate about a possible limited exception to the rule of substituted judgment in the patient’s interest: in cases where the patient has literally no countervailing interests of their own, is it reasonable to allow decision-makers (specifically, family members) to act for their own interests in relation to the patient, by bringing them home to die or maintaining life support for non-suffering patients even when there is no hope of cure? The dangers seem to me significant, and the possibility that such exceptions would be further misused by political interests almost inevitable. Still, it’s worth thinking about in cases like that of Baby Joseph: where the family is clearly acting out of love for the patient, but not in the patient’s interests, would it be wrong to indulge their desires if it at least doesn’t harm the patient?
Worth discussing, perhaps.
UPDATE: Fixed mistake in the name of Terri Schiavo’s brother, Bobby Schindler. Thanks to Barry in comments.
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