End of life decisions

Diet, Changing Desires, and Dementia

Written by Ben Davies

Last week saw the launch of a campaign (run by the group Vegetarian For Life) that seeks to ensure that older people in care who have ethical commitments to a particular diet are not given food that violates those commitments. This is, as the campaign makes clear, a particularly pressing issue for those who have some form of dementia who may not be capable of expressing their commitment.

Those behind the campaign are quite right to note that people’s ethical beliefs should not be ignored simply because they are in care, or have a cognitive impairment (see a Twitter thread where I discuss this with a backer of the campaign). But the idea that one’s dietary ethics must be ‘for life’ got me thinking about a more well-established debate about Advance Directives. (I should stress that what I say here should not be taken to be imputing any particular motivation or philosophical commitments to those behind the campaign itself.)

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Abolish Medical Ethics

Written by Charles Foster

In a recent blog post on this site Dom Wilkinson, writing about the case of Vincent Lambert, said this:

If, as is claimed by Vincent’s wife, Vincent would not have wished to remain alive, then the wishes of his parents, of other doctors or of the Pope, are irrelevant. My views or your views on the matter, likewise, are of no consequence. Only Vincent’s wishes matter. And so life support must stop.’

The post was (as everything Dom writes is), completely coherent and beautifully expressed. I say nothing here about my agreement or otherwise with his view – which is comfortably in accord with the zeitgeist, at least in the academy. My purpose is only to point out that if he is right, there is no conceivable justification for a department of medical ethics. Dom is arguing himself out of a job. Continue reading

Guest Post: How Should We Evaluate Deaths?

Written by: Carl Tollef Solberg, Senior Research Fellow, Bergen Centre for Ethics and Priority Setting (BCEPS), University of Bergen.
Espen Gamlund, Professor of Philosophy, Department of Philosophy, University of Bergen.

In 2015, there were 56.4 million deaths worldwide (WHO 2017).[i] Most people would say that the majority of these deaths were bad. If this is the case, why is it so, and are these deaths equally bad?

Death is something we mourn or fear as the worst thing that could happen—whether the deaths of close ones, the deaths of strangers in reported accidents or tragedies, or our own. And yet, being dead is not something we will ever live to experience. This simple truth raises a host of challenging philosophical questions about the negativity surrounding our sense of death, and how and for whom exactly it is harmful. The question of whether death is bad has occupied philosophers for centuries, and the debate emerging in the philosophical literature is referred to as the “badness of death.” Are deaths primarily negative for the survivors, or does death also affect the decedent? What are the differences between death in fetal life, just after birth, or in adolescence? When is the worst time to die? These philosophical questions, although of considerable theoretical interest, is particularly relevant for how we evaluate deaths in global health, and policy-makers spending money to finance different health programs need to know how to answer them.  Continue reading

In Praise Of Dementia

By Charles Foster

Statistically there is a good chance that I will ultimately develop dementia. It is one of the most feared conditions, but bring it on, I say.

It will strip me of some of my precious memories and some of my cognitive function, but it will also strip me of many of the neuroses that make life wretched. It may (but see below) make me anxious because the world takes on an unaccustomed form, but surely there are worse anxieties that are dependent on full function – such as hypochondriacal worries, or the worry that comes from watching the gradual march of a terminal illness. On balance the trade seems a good one. Continue reading

The Ethics of Consciousness Hunting

By Mackenzie Graham

Crosspost from Nautilus. Click here to read the full article

When Adrian Owen, a neuroscientist at the University of Western Ontario, asked Scott Routley to imagine playing a game of tennis, any acknowledgement would have been surprising. After all, Routely had been completely unresponsive for the 12 years since his severe traumatic brain injury. He was thought to be in a vegetative state: complete unawareness of self or environment. But, as Owen watched Routley’s brain inside a functional magnetic resonance imaging (fMRI) scanner, he saw a region of the motor cortex called the supplementary motor area—thought to play a role in movement—light up with activity. When he told Routely to relax, the activity ceased. And when he asked Routley to imagine walking around his house, he saw clear activity in the parahippocampal gyrus—a region of the brain that plays an important role in the encoding and recognition of spatial environment.

***

One question that Owen didn’t ask Routley was if he wanted to die. It’s easy to imagine how Routley’s life might not be worth living. It might be painful, for example, or mean he could no longer do the things that he wanted to do in life, or involve the loss of his relationships. On the other hand, people who sustain debilitating injuries often report a level of well-being that approximates that of healthy people. Even patients in a locked-in state—total paralysis with the exception of eye-movement—have reported that they are happy with their lives.

Continue reading at: http://nautil.us/issue/64/the-unseen/the-ethics-of-consciousness-hunting

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

Dementia and the Social Scaffold of Memory

By Jonathan Pugh

 

The number of individuals suffering with dementia is steadily increasing; as such, the moral issues raised by the neurodegenerative diseases that bring about the symptoms typifying dementia are of pressing practical concern. In this context, Richard Holton’s topic for the first of his three 2018 Uehiro lectures (on the theme “Illness and the Social Self”) is a timely one: What are the ethical implications of the progressive and pervasive loss of memory that is a central feature of dementia?

I shall be blogging a synopsis of each lecture in the series on the Practical Ethics blog – You can find a recording of the lecture here

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Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…

By Dominic Wilkinson

@Neonatalethics

 

In the latest case of disputed medical treatment for a child, the family of Liverpool toddler Alfie Evans yesterday lost their last legal appeal. The family had appealed to the European Court of Human Rights to examine whether the UK courts’ decision (to allow doctors to stop life support) was contrary to the European Convention on Human Rights. The European Court (as it had in two other cases in the last 12 months) rejected the appeal. It is expected that the artificial ventilation that is currently keeping Alfie alive will be withdrawn in the coming days.

This decision, difficult as it is for his family to accept, is the right decision for Alfie. Medical treatment can no longer help him. As I wrote a month ago, it is time to stop fighting, time to let him go.

However, one important legal and ethical issue raised in this case, and in the case of Charlie Gard from last year, is about the basis for deciding when parents and doctors disagree. What ethical standard should apply?

Last week, the UK Supreme Court adamantly refused Alfie’s parents’ previous legal appeal, focused on this specific question.  I will argue that the court’s arguments fail and that the current UK legal approach is mistaken. (Though in fact, in the Evans case as in the case of Charlie Gard, it seems likely that the court would have reached the same decision about treatment even if it had applied a different ethical standard).

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Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case

by Dominic Wilkinson

@Neonatalethics

[Updated 22/02/18]

This afternoon, in another case of disputed medical treatment for a seriously ill child, Justice Hayden in the High Court concluded that treatment should be withdrawn from toddler Alfie Evans against the wishes of his parents.

See below for a press release on the Alfie Evans decision. I will add further reports and links to the court transcript when it is available.

See here for ethics commentary and resources on the Charlie Gard case.

See also my recent blog on the Evans and Haastrup cases: Medical treatment disputes and the international second opinion

Details from the court ruling (Liverpool Echo)

Court judgement

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