Health

Take Back Control? Doctors as Appointed Fiduciaries

Written by Ben Davies

There’s a story that’s often told about the evolution of the doctor-patient relationship. Here’s how it goes: back in the bad old days, doctors were paternalists. They knew what was best, and the job of the patient was simply to do as they were told and hopefully get better. Then, in part because of abuses of power, and in part because of cultural changes, a new model emerged. This model cast patients not as passive recipients of instruction, but as active, autonomous agents, put in charge of their own medical decisions. The doctor-patient relationship was remodelled, from a paternalistic relationship (doctor looks after patient’s health) to a service relationship (doctor does what patient wants, within limits).

That story is almost certainly too simple to be true. But even histories that aren’t wholly accurate can come to influence our culture and expectations. And the dominant assumption between both patients and medical professionals seems to be that our relationship will be cast on what is sometimes called the “informative model” (Emmanuel and Emmanuel, 1992), where the medical role is simply to provide the patient with empirical information, such as information about likely risks and outcomes.

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Reversibility, Colds, and Neurosurgery

By Jonny Pugh

This blog was originally published on the Journal of Medical Ethics Blog

 

Happy new year to readers of the blog!

I always approach the new year with some trepidation. This is not just due to the terrible weather, or even my resolution to take more exercise (unfortunately in the aforementioned terrible weather). Instead, I approach January with a sense of dread because it is always when I seem to come down with the common cold.

In my recent research, I have been interested in the nature and moral significance of reversibility, and the common cold is an interesting case study of this concept. In this blog, I will use this example to very briefly preview a couple of points that I make in a forthcoming open access article about reversibility in the context of psychiatric neurosurgery. You can read the open access paper here.

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Abortion: a Law Unto Itself

By   Charles Foster

Wrongful life cases (typically where a birth has resulted from a failed sterilisation procedure), used to be big business. The parents would sue the negligent steriliser for the costs of bringing up the unwanted child. There was always something distasteful about parents unwishing their child, and this distaste found legal expression in Macfarlane v Tayside Health Board,1  where the House of Lords said that such claims were unlawful. The ratio of Macfarlane was summarised by the Lord Steyn in Rees v Darlington Memorial Hospital NHS Trust:2 Continue reading

Press Statement: Monstrous Gene Editing Experiment

Chinese researcher He Jiankui of Shenzhen claims to have gene edited two healthy embryos, resulting in the birth of baby girls born this month, Lulu and Nana. He edited a gene to make the babies resistant to HIV. One girl has both copies of the gene modified while the other has only one (making her still susceptible to HIV). 

If true, this experiment is monstrous. The embryos were healthy. No known diseases. Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer. There are many effective ways to prevent HIV in healthy individuals: for example, protected sex. And there are effective treatments if one does contract it.

This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit.

It contravenes decades on ethical consensus and guidelines on the protection of human participants in research.

In many other places in the world, this would be illegal punishable by imprisonment.

Could gene editing ever be ethical? If the science progressed in the future and off target mutations reduced to acceptable and accurately measurable level, it might be reasonable to consider first-in-human trials (with appropriate safeguards and thorough ethics review) in one category of embryos: those with otherwise lethal catastrophic genetic mutations who are certain to die. Gene editing for this group might be life-saving; for these current babies, it is only life-risking.

These healthy babies are being used as genetic guinea pigs. This is genetic Russian Roulette.

Prof Julian Savulescu

Uehiro Chair in Practical Ethics

Director Oxford Uehiro Centre for Practical Ethics

University of Oxford

Response from David S. Oderberg to “Against Conscientious Objection In Health Care: A Counterdeclaration And Reply To Oderberg”

I am grateful to Prof. Savulescu and Dr Giubilini for taking the time and care to respond in detail to my Declaration in Support of Conscientious Objection in Health Care. I also thank Prof. Savulescu for giving me the opportunity to reply to their lengthy analysis. The authors make a series of important criticisms and observations, all of which I will face directly. The topic of freedom of conscience in medicine is both contentious and likely to become increasingly urgent in the future, so it is as well to dispel misunderstandings, clarify assertions and respond to objections as thoroughly as possible. That said, I hope I do not try the reader’s patience by discussing Giubilini and Savulescu’s objections point by point, in the order in which they raise them.

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UK Supreme Court Decision Means Patients No Longer Forced to Live

By Mackenzie Graham

On July 30, The UK’s Supreme Court ruled that there is no requirement to obtain court approval before withdrawing clinically assisted nutrition and hydration (CANH), when there is agreement between physicians and the family that this is in the best interests of the patient.

In the judgement, Lady Black writes:

“If the provisions of the MCA [Mental Capacity Act] 2005 are followed and the relevant guidance observed, and if there is agreement upon what is in the best interests of the patient, the patient may be treated in accordance with that agreement without application to the court.”

Until now, requests to withdraw CANH needed to be heard by the Court of Protection to determine if withdrawing treatment was in the patient’s best interest. In addition to being emotionally difficult for families, this is a time-consuming and expensive process, and often results in the patient dying before a judgement is rendered.

I think this decision has much to be said in its favour. First, it means that when there is agreement that continued treatment is no longer in the best interests of a patient with a prolonged disorder of consciousness, these patients are no longer being ‘forced to live’ until the Court affirms that being allowed to die is in their best interests. In many cases, court decisions take months, meaning that a patient is forced to be kept alive, against their best interests and the wishes of their family. Making the decision to withdraw care from a loved one is highly distressing, and this is likely further compounded by the burden and distraction of court proceedings.

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The Dangers Of Deferring To Doctors

By Charles Foster

(Image: tctmd.com)

There is a dizzying circularity in much medical law. Judges make legal decisions based on the judgments of rightly directed clinicians, and rightly directed clinicians make their judgments based on what they think the judges expect of them. This is intellectually unfortunate. It can also be dangerous.

There are two causes: Judges’ reluctance to interfere with the decisions of clinicians, and doctors’ fear of falling foul of the law.

In some ways judicial deference to the judgment of professionals in a discipline very different from their own is appropriate. Judges cannot be doctors. The deference is best illustrated by the famous and ubiquitous Bolam test, which is the touchstone for liability in professional negligence cases.1 A doctor will not be negligent if their action or inaction would be endorsed by a responsible body of professional opinion in the relevant specialty.

In the realm of civil litigation for alleged negligence this deference is justified. The problem arises when the deference is exported to legal arenas where it should have no place. The classic example relates to determinations of the ‘best interests’ of incapacitous patients. Something done in relation to an incapacitous patient will only be lawful if it is in that patient’s best interests. Continue reading

Should Gene Editing Be Compulsory?

Written by Julian Savulescu

Hypothetical Case 1: Enzyme Replacement Therapy for Gaucher’s Disease

Consider a hypothetical version of a real life disease, Gaucher’s Disease. Gaucher’s disease is an inherited disorder caused by a genetic mutation. The mutation means an enzyme–  glucocerebrosidase — is not produced. A a result, glucerebrosides (fats) build up, damaging cells. This can cause bone fractures, liver enlargement, and bleeding but most importantly, brain damage. Once this has occurred it is irreversible.

Enzyme Replacement Therapy (ERT) is now available and for the purposes of this hypothetical case, the treatment offered, if given from the moment of birth, will prevent all damage (in real life current enzyme replacement treatments do prevent most symptoms, but do not affect nervous system involvement).

In our hypothetical case, a child is born to parents known to carry the mutation for Gaucher’s Disease, and prenatal testing has already confirmed that the baby is affected. ERT must be started at birth in order to prevent brain and other damage. However, the parents are Christian Scientists and refuse medical treatment. They believe prayer can cure their child’s condition.

Doctors are concerned the missing enzyme needs to be replaced before the child’s brain is damaged. They take the case to court where judges agree that therapy is in the child’s best interests.

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Video Interview: Richard Holton on Addiction

Is addiction within or beyond our control? What turns something into an addiction? What should we do (more of) to tackle addiction? In this interview with Dr Katrien Devolder (philosophy, Oxford), Professor Richard Holton (philosophy, Cambridge) discusses these questions.

 

Should Abortion be a Matter of Referendum?

Alberto Giubilini
Wellcome Centre for Ethics and Humanities and Oxford Martin School, University of Oxford

I am writing this post on the 25th of May, as the Irish abortion referendum is taking place. However, you will probably be reading it once the results are already known. I am not going to write in support of either side of the debate here anyway. I want to write about the appropriateness (from an ethical point of view) of this referendum itself. I want to suggest that a referendum is not the appropriate way to solve the dispute at stake.

Irish people have been asked whether they wanted to repeal the Eight Amendment of the Irish Constitution, which gives foetuses and pregnant women an “equal right to life”. It is commonly assumed that the Eight Amendment was preventing the Irish Government from legalizing abortion, except in extreme and very rare circumstances in which abortion is necessary to save the life of a pregnant woman. If the majority of Irish people votes “yes”, abortion can become legal in the country. If the majority votes “no”, abortion will remain a crime in the country, with the exception of a few extreme and very rare circumstances. More specifically, voting “no” means voting in favour of the idea that in Ireland a foetus does have a right to life equal to the right to life of the woman. Voting “yes” means voting in favour of the idea that in Ireland the foetus does not have a right to life comparable to the right to life of a woman; in other words, that it can be considered merely as part of the woman’s body for the purpose of attributing it a right to life (though not necessarily for other purposes), and therefore something that a woman can permissibly decide not to keep alive as a matter of bodily autonomy or, in many cases, and depending on what definition of “health” we adopt, as a matter of basic healthcare.

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