End of life decisions

How much would you pay to live an extra year?

Dominic Wilkinson, University of Oxford

@Neonatalethics

Medical science continues to push at the boundaries of life and death with new drugs and technologies that can extend life or improve health. But these advances come at a cost. And that inevitably raises difficult questions about whether public health systems should pay for such treatments – and, if so, how much. For example, should the NHS fund the new breast cancer drug Kadycla which comes with a £90,000 price tag per patient?

Some countries make these difficult decisions by looking at the cost-effectiveness of new treatments. How much does the new treatment cost and how effective is it compared with existing treatments? Treatments may help patients live longer, or they may improve a patient’s quality of life (or both). Kadycla appears to extend life by about six months.

One mathematical way of combining these elements uses the concept of a Quality-Adjusted Life Year saved, or QALY. As an example, a treatment that extends life for one year but at a “quality” level of half normal it said to save 0.5 QALY. When treatments are assessed this way, health systems can then use a threshold to work out a maximum cost that is affordable. The National Institute for Health and Care Excellence (NICE) uses a threshold of £20,000-£30,000 for each Quality-Adjusted Life Year saved (QALY). This would mean (assuming full quality of life), that the NHS would be prepared to pay £10,000-15,000 for a course of Kadycla.

Saving time.
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Drinking at Schiphol with the fount of bioethics

A couple of weeks ago, in an airport bar, I met the foundation of modern bioethics.

I was crawling back to London: he was heading to JFK.

‘I usually fly First’, was his opening, as we sat on those vertiginous stools. ‘So I’m usually in the Lounge. But it’s good to be reminded how the other half live.’ I was glad, for about a minute, to be part of his democratic education.

He’d had quite a start on me, and was several G & Ts down when I arrived. That might have loosened his tongue. Or perhaps, and probably, he was as keen when sober to talk obsessively, self-referentially and self-reverentially about himself.  Continue reading

Reincarnation and discrimination

by Dominic Wilkinson @Neonatalethics

In California, in the last week, there have been further motions in a long running lawsuit relating to a brain-dead child. Oakland teenager Jahi McMath died after a tonsillectomy in December 2013. However, her parents rejected the medical diagnosis of brain death, and despite a Californian court providing judicial backing for doctors’ determination, organized for her to have a tracheostomy and be transferred to another medical facility. More than 18 months later it appears that Jahi’s heart is still beating and she is still connected to a breathing machine somewhere in New Jersey. Continue reading

It’s tough to make predictions*

by Dominic Wilkinson, @Neonatalethics

The Court of Protection is due to review very soon the case of a teenager with a relapsed brain tumour. The young man had been diagnosed with the tumour as a baby, but it has apparently come back and spread so that according to his neurosurgeon he has been “going in and out of a coma”. In February, the court heard from medical specialists that he was expected to die within two weeks, and authorized doctors to withhold chemotherapy, neurosurgery and other invasive treatments, against the wishes of the boy’s parents.

However, three months after that ruling, the teenager is still alive, and so the court has been asked to review its decision. What should we make of this case? Were doctors and the court wrong?

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An infant-sized ethics: St Cross Ethics Seminar – Dr Richard Hain

by Dominic Wilkinson @NeonatalEthics

On the 29th of January, Paediatric Palliative Care Specialist Dr Richard Hain gave the first St Cross Special Ethics Seminar for Hilary Term.

Dr Hain’s talk was titled “Mere Practicality?  Infants, interests and the value of life”. The talk abstract and a link to a podcast of his talk can be found below.

The main focus of the talk was on contemporary accounts of medical ethics and in particular on the challenge of finding an adequate account that addresses the needs of human infants. Hain drew an analogy with a blood pressure cuff or “sphygmomanometer”. Blood pressure cuffs wrap around the upper arm, and air is pumped in to them until blood flow stops through the arm (this gives a reading of the pressure in the patient’s arteries). Adult-sized blood pressure cuffs don’t work well for children or infants. A too large cuff will usually give a reading that is too low because it doesn’t take as much air to cut off the blood flow. It underestimates a child’s true blood pressure.

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The Wrongness of Do Not Resuscitate Orders Being Ignored

Guest Post by Joseph Bowen

Joseph is a BPhil Student studying at Oxford University.

Following a surprise inspection of Colchester General Hospital by the Care Quality Commission (CQC) on Friday 14th November, it was reported that inspectors had found that some patients (“elderly people, some [suffering from] dementia”) had been inappropriately restrained, and/or sedated without consent, and that ‘Do Not Resuscitate’ (DNR) notices were being disregarded. What struck me about this case is that, while all are horrible practices, the DNRs being ignored seemed worse than the inappropriate restraint and sedation without consent. Continue reading

Not-so-lethal – the ethics and costs of extraordinary fetal intervention

By Dominic Wilkinson (@Neonatal Ethics)

Late last month, a paper in the US journal Obstetrics and Gynecology reported the extraordinary case of Abigail Beutler. Abigail is now 14 months old. She was born without kidneys, a condition sometimes called ‘Potter’s syndrome’. Potter’s syndrome is normally universally fatal in the newborn period, because without kidneys the fetus does not produce urine and has little or no fluid around them. Without any fluid around the fetus, their lungs do not develop.

Abigail is the first baby to ever survive with this condition. Doctors infused artificial fluid into the uterus around her (amnioinfusion) on five occasions during the pregnancy. This seemed to allow her lungs to grow. Although she was born 3 months prematurely, she had only minor breathing problems at birth. She has received kidney dialysis since soon after birth, was discharged home after 19 weeks and is now reportedly being considered for a kidney transplant. Continue reading

Freezing critique: privileged views and cryonics

Cryonics – the practice of freezing people directly after death in the hope that future medicine can resuscitate them – is controversial. However, British Columbia is the only jurisdiction with an explicit anti-cryonics law (banning advertising or sale of cryonics services), and a legal challenge is apparently being put together. The motivations for the law appear murky, but to some this is a rights issue. As Zoltan Istvan notes, “In a world where over 90 percent of the people hold religious views of the afterlife, cryonics could become a noteworthy global civil rights issue. ” Maybe the true deep problem for getting cryonics accepted is that it is a non-religious afterlife, and we tend to give undue privilege to religious strange views rather than secular strange views.

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Economic arguments and assisted dying.

by Dominic Wilkinson (@NeonatalEthics)

Lord Falconer’s assisted dying bill is being debated today in the House of Lords. In the past week or two there has discussion in the media of many of the familiar arguments for and against such a proposal. As Roger Crisp noted in yesterday’s post, there have been relatively few new arguments. Supporters of the bill refer to compassion for the terminally ill, the difficulty of adequately relieving suffering, and patients’ right to make fundamental choices about the last stage of their lives. Opponents of the bill express their compassion for the terminally ill and those with disabilities, fear about coercion, and the omnipresent slippery slope.

One concern that has been raised about the assisted dying bill is the fear of abuse in the setting of an overstretched public health system. For example, Penny Pepper, writing in the Guardian notes that “Cuts to social care are monstrous…How would the enactment of the Falconer bill work if brought to our harassed NHS?”

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Would Legal Assisted Suicide be the Final Triumph of Market Capitalism?

Tomorrow  in the House of Lords Lord Falconer’s bill on assisted dying will be debated. The bill would allow those who are terminally ill and likely to die within six months to request life-ending drugs from their doctor for the patients to use as and when they see fit.

As might have been expected, there has been huge discussion over the bill, but most of the arguments presented so far are not new, and the same will probably be true tomorrow. But there is one I haven’t seen before, put forward recently by Giles Fraser: that assisted suicide is the ‘final triumph of market capitalism’. Continue reading

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