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Debate: The Fiction of an Interest in Death? Justice for Charlie Gard

26 Apr, 17 | by miriamwood

 

Julian Savulescu

Dominic Wilkinson’s Response

A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents. His doctors argued that the rare mitochondrial disease (MDDS) he was born with was causing him unbearable suffering.

His parents had raised funds to take him to the US for experimental treatment and they wanted the chance to try the treatment. His doctors argued that such treatment could only prolong his suffering. It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.

“It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”

This is a profoundly difficult decision, and one in which all parties are acting out of care and compassion for the child. My comments are of course limited as I do not have access to all the relevant facts. However, it does raise an important question about the current basis of such decisions.

Ethics of Limitation of Life Prolonging Medical Treatment

In general, medicine has a presumption in favour of saving life, or prolonging life. There are three justifications for departing from this default. That is, there are 3 justifications for withholding or withdrawing life prolonging medical treatment:

  1. the patient autonomously refuses it. (autonomy)
  2. continued life is no longer in the patient’s interests (best interests)
  3. the probability of the treatment prolonging life, or the quality of life, or the length of time the patient can surVive are too low to justify the cost of the attempt (distributive justice)

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Debate Reponse: Charlie Gard, Interests and Justice – an alternative view

26 Apr, 17 | by miriamwood

Dominic Wilkinson

Responding to Julian Savulescu

The sad and difficult case of Charlie Gard, which featured in the media last week, is the latest in a series of High Court and Family court cases when parents and doctors have disagreed about medical treatment for a child. Doctors regard the treatment as “futile” or “potentially inappropriate”. Parents, in contrast, want treatment to continue, perhaps in the hope that the child’s condition will improve. In the Charlie Gard case, the judge, Justice Francis, rejected Charlie’s parents’ request for him to travel to the US for an experimental medical treatment. He ruled that life-sustaining treatment could be withdrawn, and Charlie allowed to die.

Two reasons

As Julian Savulescu argues,there are two different ethical reasons for health professionals to refuse to provide requested medical treatment for a child. The first of these is based on concern for the best interests of the patient. Treatment should not be provided if it would harm the child. The second reason is on the basis of distributive justice. In a public health system with limited resources, providing expensive or scarce treatment would potentially harm other patients since it would mean that those other patients would be denied access to treatment.

The importance of resources

When doctors and the courts consider cases of ostensibly “futile” treatment, they often focus exclusively on best interests. That is understandable, since the prevailing ethical and legal frameworks largely ignore the question of limited resources. The courts have no mechanism, statute or precedent, to allow them to assess whether or not a treatment would be too expensive or of too little benefit to provide it. Professional guidelines tell doctors that they should base decisions on the interests of the child.

In many cases, however, it is uncertain whether or not treatment would be in the interests of the patient. There may be much stronger and clearer arguments to limit treatment on the basis of finite and scarce medical resources.

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The Implications of Libertarianism for Compulsory Vaccination

24 Apr, 17 | by miriamwood

Guest Post: Justin Bernstein

Paper: The Case Against Libertarian Arguments for Compulsory Vaccination

In a recent political controversy, libertarian Senator Rand Paul articulated his opposition to a policy of compulsory vaccination, stating that he was “all for [vaccines],” but that he was “also for freedom.” U.S. opponents of vaccines often object to compulsory vaccination on the (false) grounds that vaccines cause autism. But Paul’s claim that he was “for freedom” suggests a distinct, libertarian-minded rationale for opposing compulsory vaccination.

Libertarians deny that the state has the right to restrict individual liberty in order to promote welfare. A policy of compulsory vaccination promotes welfare by ensuring herd immunity. But such a policy also restricts individual liberty because it requires parents to subject their children to a medical procedure, and permits the state to punish non-compliance. So, a policy of compulsory vaccination certainly seems at odds with the libertarian’s commitment to liberty–even if herd immunity is threatened.

Some libertarians, however, attempt to avoid the controversial conclusion that libertarianism is incompatible with compulsory vaccination. In my recent paper, “The Case Against Libertarian Arguments for Compulsory Vaccination,” I argue that such attempts are unsuccessful, and so libertarians must either develop new arguments, or join Senator Paul in opposing compulsory vaccination.

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Breakthrough Immunotherapies Seem Like a Dream Come True for Children with Leukemia

18 Apr, 17 | by miriamwood

Guest Post: Nancy Jecker, Aaron Wightman, Abby Rosenberg, Doug Diekema

Paper: From protection to entitlement: selecting research subjects for early phase clinical trials involving breakthrough therapies

A breakthrough therapy to cure cancer in children suffering from acute lymphoblastic leukemia (ALL) is a dream for many families.  New immunotherapies appear to make this dream a reality. Such therapies use a person’s own immune cells to recognize and combat their disease. In the largest study to date of ALL patients treated with a form of immunotherapy known as Chimeric Antigen Receptor (CAR) T-Cell therapy, a 93% remission rate was reported. Such results are a glimmer of hope for those whose prognoses were previously considered very poor.

However, the good news is tempered by the fact this potentially lifesaving experimental therapy may not be available to everyone who might benefit. And demand is growing as word spreads. Since CAR T-cell therapy for ALL is available only through clinical trials, do patients have a right to participate? How should we choose among medically suitable candidates?

We have faced these questions before. Most recently, with ZMapp to treat Ebola Virus Disease, azidothymidine (AZT) to treat HIV and AIDS, and Immunitab (Gleevac) to treat Chronic Myleogenous Leukemia. Are patients suffering from devastating, life-threatening diseases entitled to breakthrough therapies?

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The moral bioenhancement of psychopaths

18 Apr, 17 | by miriamwood

Guest Post: Elvio Baccarini and Luca Malatesti

Paper: The Moral Bioenhancement of Psychopaths

We argue that the prescription of mandatory moral bioenhancement (from now on MB) of psychopaths is justified because it satisfies the requirement of public reason as elaborated in political philosophy. This is the requirement that a moral or political prescription should be justifiable to all those persons over whom the prescription purports to have authority.

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Donald Trump’s Mental Health (again)

14 Apr, 17 | by Iain Brassington

The speculation about Donald Trump’s mental health that was doing the rounds earlier in the year seems to have died down a bit.  That’s to be expected; like it or not, his Presidency is now part of normal life.  But I’ve been lagging in my blogging here, and so it’s only now that I’ve got a moment to mention in passing an op-ed article about Trump in the New Scientist that appeared just after I posted last on the topic.  (February.  I know, I know.)

It’s by Allen Frances, and it takes issue with what he calls “armchair diagnosis” of the president.  He’s right to say that there’s something disquieting about armchair diagnosis: “psychiatric diagnosis is already done far too casually and inaccurately in medical and mental health practice.  Armchair diagnosis further cheapens its currency.”  However, I do wonder whether we ought to pay some attention to whose armchair it is.  Often, it’s an armchair occupied by the genuinely ignorant, or the spiteful.  That’s the internet for you.  Accusing someone of being mentally ill or having a personality disorder on this account may be simply mistaken; or it may be intended as a jibe, the subtext of which is that there’s something shameful about having a mental health problem.  But not every armchair is the same: as Frances’ article admits, a letter with 35 signatories who work within the mental health field appeared in the New York Times.  That letter may be misguided, or ill-motivated.  But it is by people who, presumably, know a thing or two about the topic.  Their armchair is not my armchair.

But there’s something else about the piece that’s just nagging away at me.  I don’t know a heck of a lot about mental health, but (and maybe that’s why) there’s a passage in the article that strikes me as being just strange:

But the main [reason for opposing armchair psychiatry] is the inaccuracy of the narcissistic personality disorder (NPD) diagnosis: Trump may be a world-class narcissist, but this doesn’t make him mentally ill.

I wrote the criteria for NPD for the Diagnostic and Statistical Manual of Mental Disorders, which guides mental health diagnosis in the US and beyond. These require not only that the personality features be present, but also that they cause clinically significant distress and impairment. Trump appears to cause severe distress in others (rather than experiencing it himself) and has been richly rewarded (rather than punished) for his self-promoting and self-absorbed behaviours.

[…] We must avoid the frequent mistake of confusing mental illness with bad behaviour. Most people who lie, cheat and exploit others are not mentally ill, and most mentally ill people do not commit dishonourable acts.

There’s a few things that are a bit odd about this. more…

Law Changes and Slippery Slopes

13 Apr, 17 | by Iain Brassington

Apparently, there was a TV programme in Australia the other day in which a there was a discussion of assisted dying.  It got reported in The Guardian, largely on the basis that an 81-year-old audience member kept calling Margaret Somerville “darling” and then got mildly sweary.  I’ve only seen those clips from the programme that are linked in the Graun‘s report, so I’m not going to comment on the tone of the debate in particular.  Rather, I’m interested in one of the responses to the programme, from Xavier Symons, writing in The Conversation.

Symons takes the opportunity to unpick the idea of a slippery slope argument – in this case, the claim that allowing some forms of assisted dying will commit us to allowing… well, that’s open-ended, but it’s sufficient to say that it’d be terrible.  We’d want to avoid terrible things; therefore, the argument goes, we shouldn’t allow any of it.  This is well-worn stuff in the seminar room, but it’s a mode of argument that refuses to die.  Quite correctly, Symons points out that

there is a need for empirical evidence or sound inferential reasoning to support the claim that event B will necessarily (or probably) follow on from event A.  Without this evidence, the argument is invalid. I can’t just claim, for example, that the legalisation of medicinal marijuana leads to the legalisation of ice – I need to show some empirical or logical connection between the two.

So far, so standard.  (I’d say “unsound” rather than “invalid”, because the validity of an argument doesn’t depend on its evidence – or, at least, not in the same way; but that’s a small matter.)  He then makes another move, which is a bit more interesting:

But (and it’s a big but) there is such a thing as a good and valid slippery slope argument.  A good slippery slope argument demonstrates a causal or probable relationship between event A and B, such that event B can legitimately be expected to occur if event A is allowed to occur. […] There are, nevertheless, compelling empirical and logical slippery slope arguments available to defend more modest claims about the “normalisation” of assisted dying.

Is this correct? more…

Individually-Randomized Controlled Trials of Vaccines Against the Next Outbreak

11 Apr, 17 | by miriamwood

Guest Post: Nir Eyal, Marc Lipsitch

Paper: Vaccine testing for emerging infections: the case for individual randomisation 

The humbling experience of international response to Ebola taught the world a thing or two on preparing for Zika and for other emerging infections.

Some of those lessons pertain to vaccine development against emerging infections. One lesson was that vigorous vaccine development should start long in advance of outbreaks. CEPI, the Coalition for Epidemic Preparedness Innovations, was recently launched with an initial investment of half a billion US dollars from the Gates Foundation, Britain’s Wellcome Trust and the governments of Japan, Norway and Germany. There is also growing recognition that best practices on vaccine testing should be developed prior to outbreaks, from a study methodology viewpoint.

By contrast, in Zika, ethical guidelines on response in general and on an aspect of vaccine testing were created only once the pandemic erupted. Shouldn’t ethical disputes, e.g. on trial design for vaccine candidates, be ironed out in advance of emerging infections?

One persistent ethical question in vaccine testing pertains to individually-randomized control in efficacy trials. At the height of the 2014-5 Ebola outbreak, individually-randomized controlled trials were much maligned. Our paper at the Journal of Medical Ethics sets out to defend that approach for vaccine efficacy testing in emerging infections, including highly fatal and untreatable ones in developing countries.

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The Deadly Business of an Unregulated Global Stem Cell Market

30 Mar, 17 | by miriamwood

Guest Post: The deadly business of an unregulated global stem cell industry

Tereza Hendl and Tamra Lysaght

In our paper, we report on the case of a 75-year old Australian woman who died in December 2013 from complications of an autologous stem cell procedure. This case was tragic and worth reporting to the medical ethics community because her death was entirely avoidable and the result of a pernicious global problem – doctors exploiting regulatory systems in order to sell unproven and unjustified stem cell interventions.

The patient at the centre of this case, Sheila Drysdale, underwent a liposuction procedure administered by cosmetic surgeon, Dr Ralph Bright, at his private Sydney clinic. Dr Bright did not perform this procedure for cosmetic reasons, but rather to ‘treat’ her advanced dementia with adipose (fat) derived stem cells. Mrs Drysdale died within ten hours of the surgery. Following an inquest into her death, the New South Wales Deputy Coroner stated that the utilisation of stem cells to ‘treat’ dementia was “highly questionable” and displayed “some of the hallmarks of ‘quack’ medicine,” particularly owing to the lack of scientific evidence supporting such ’therapy.’ The Coroner, thus, called for a more rigorous regulation of ‘innovative’ medical procedures in Australia that would protect vulnerable patients. Sadly, the relevant regulatory authorities have done very little to bring about any justice for Mrs Drysdale, or to address the systemic problems in Australia’s legislative framework that allows medical professionals to offer unproven stem cell-based interventions to patients without any accountability.

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Family Presence During Resuscitation: Extending Ethical Norms from Pediatrics to Adults

28 Mar, 17 | by miriamwood

Guest Post: Christine Vincent and Zohar Lederman

Paper: Family presence during resuscitation: extending ethical norms from paediatrics to adults

Family Presence During Resuscitation is an important ethical issue for discussion within the medical community. Currently, family presence is more commonly accepted in paediatric cardiopulmonary resuscitation (CPR) than adult CPR. However, we argue that this fact is not morally justified and that the case for family presence during adult CPR is indeed morally stronger. In our paper we provide an ethical argument for accepting both family presence during adult CPR and pediatric CPR.

Arguments commonly used by ethicists and medical professionals to justify family presence during resuscitation (FPDR) in the emergency room revolve around scarce evidence of harm to patient outcome, strong evidence demonstrating benefits to relatives, and respect for patient’s wishes. However, we argue that these three main reasons all seem to be stronger in the case of adult patients than pediatric ones.

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