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Disability, Chronic Conditions and Rehabilitation

Mining your past to justify your terminal care: the idea of a ‘retrospective QALY’

There is no end to human suffering. There is a distinct end to the amount of money that governments will spend on reducing it. Someone has to make decisions about healthcare resource allocation. I am very glad it’s not me.

Many tools are used in the decision-making process. Not many emerge well from a viva with a philosopher.

Individual clinicians use intuition, experience, NICE
guidelines, the fear of hospital accountants and, no doubt, prejudice and the
tossed coin. But policy makers do not have the luxury of being able to account
only to their consciences and the local man in a suit. They have to say something in the minutes about the
reason for funding procedure X but not procedure Y. The real reason might be:
‘My grandma, whom I loved very much, had procedure X, and it did her good’, but
they can’t say that.

Read More »Mining your past to justify your terminal care: the idea of a ‘retrospective QALY’

Organ Donation Euthanasia

by Dominic Wilkinson and Julian Savulescu

There are 8000 patients on transplant waiting lists in the UK. Every year 400 patients die while waiting for an organ to come available.
We are all far more likely to be in need of an organ transplant than to be a donor. Most of us expect that if we needed a transplant that someone would donate one. On the basis of the ethical golden rule – do unto others as you would want them to do for you, we should all think seriously about whether and how we could donate our organs if we no longer need them.

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Eugenics or ‘reprogenetics’? Call it what you will, but let’s do it

As The
Times recently
reports:

 

“British couples are to be offered a groundbreaking genetic test that
would virtually eliminate their chances of having a baby with one of more than
100 inherited diseases. The simple saliva test, which identifies whether
prospective parents carry genetic mutations that could cause life-threatening
disorders such as cystic fibrosis, spinal muscular atrophy or sickle-cell
anaemia in their children, is to be launched within weeks in Britain… If the
procedure, which will cost about £400 per person or £700 for a couple, is
widely adopted, it could dramatically reduce the incidence of 109 serious
inherited conditions that collectively affect one in every 280 births.”

 

Surely we should be delighted at such great news?
Surprisingly, not everyone agrees. Some experts object that the test, devised
by the Californian company
Councyl, could lead to “back door eugenics”.
They also argue that the
diseases it detects are too rare for most people to need screening, and that it
will cause needless alarm. Finally, they fear that it will raise demand for
embryo screening and abortion.

 

Read More »Eugenics or ‘reprogenetics’? Call it what you will, but let’s do it

The worth of a life and a life worth living

There has been a lot of discussion about health care rationing in the North American media over the last year, much of it hysterical and barely coherent. A number of respected ethicists have tried to make the case for rationing, including Peter Singer in the New York Times last year, and recently John Freeman.

This week Newsweek Science Editor Sharon Begley asked ‘What is a Life Worth?’ drawing on a recent study presented at the American Society for Maternal-Fetal Medicine meeting. Begley noted

“This is the kind of news that unleashes hysteria about "death panels" and "health-care rationing," but here goes: an analysis of genetic screening for an incurable, untreatable disease called spinal muscular atrophy shows that it would cost $4.7 million to catch and avert one case, compared with $260,000 to provide lifetime care for a child born with it. So here's the question: do we say, "Damn the cost; it is worth any price to spare a single child the misery of being unable to crawl, walk, swallow, or move his head and neck"—or do we, as a society, put on the green eyeshades and say, "No, sorry, we can't afford routine screening"?”

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Is the brain half full – or half empty?

There have been dramatic headlines in the media ('Coma Man. I think…I’m alive') following the publication yesterday of a new study using brain scans to detect consciousness in profoundly brain damaged patients. For the first time scientists and doctors have demonstrated that some patients diagnosed with persistent vegetative state may be able to communicate using functional magnetic resonance imaging (fMRI).

Read More »Is the brain half full – or half empty?

Obesity and Responsibility

There has been a good deal of discussion about obesity recently, since the Royal College of Surgeons criticized access to weight loss operations in the UK as a ‘postcode lottery’: http://www.guardian.co.uk/commentisfree/2010/jan/21/morbid-obesity-gastric-bands-nhs-costs

One common response – for example by Catherine Bennett in The Observer (  http://www.guardian.co.uk/commentisfree/2010/jan/24/homeopathy-obesity-gastric-bands ) has been that the question of unfairness shouldn’t be permitted to arise in the first place. Obesity, since it is self-inflicted, should not be treated by the NHS at all. Rather, the money should be spent on treatments for involuntary ailments, such as cataract operations or hip replacements.

Against this, it could be argued that interventions to cause weight loss, such as gastric bands, are in fact a highly effective use of NHS resources, since (a) they tend to work pretty well and (b) they save the costs of further treatment down the line for conditions which would otherwise have been caused by the obesity. This argument, however, fails to deal with the original deflection of responsibility for obesity onto the sufferers themselves. If they bring obesity on themselves, which then gives rise to further medical problems, then plausibly they have brought those problems on themselves as well. The NHS should refrain from treatment throughout.

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Killing is killing – or is it?

In the
headlines this week is the tragic story of Frances Inglis, whom a jury at the Old Bailey found guilty of murdering her disabled son Tom
and sentenced to nine years in jail. Tom Inglis had been left severely
braindamaged after falling from a moving ambulance in 2007, throwing his mother
in a state of deep distress. She refused to believe an (apparently isolated)
encouraging prognosis from one of the doctors at the hospital, and concluded
that it was her duty to release her son from the “living hell” in which he found himself. Horrified on learning that the only legal way of
allowing her son to die was an application to the High Court for Tom’s food and
water to be withdrawn, Frances Inglis decided to take action on her own. After
a first unsuccessful attempt 14 months earlier, she took her son’s life by
injecting him with a lethal dose of heroin in November 2008.

 

Read More »Killing is killing – or is it?

Should parents decide? The case of RB

In the Family Court yesterday, a controversial case that has been widely reported in the media came to a premature close. The father of baby RB, a severely physically disabled 13 month-old infant, withdrew his opposition to the plan by RB’s mother and doctors to take him off life support. It is believed that in the near future doctors will stop breathing machines and allow RB to die. The court did not, in the end, make a judgement about this case, though a statement of endorsement by Justice Macfarlane yesterday suggests that it would have reached the same conclusion.

Read More »Should parents decide? The case of RB

Switzerland gets tough on suicide clinics

The Swiss
government (the Federal Council) has recently announced its intention to crack
down on “suicide tourism” and to severely restrict the activities of suicide clinics like Dignitas and
Exit, which have regularly made the headlines outside Switzerland in the last
few years (particularly Dignitas), as foreigners make up a large proportion of
the hundreds of people they help to die every year. The government is proposing two draft Bills for public deliberation until March. The first option is an outright ban on suicide clinics; were it to become law, clinics like Dignitas and Exit would simply have to close down. Such an extreme measure, however, doesn’t have the favors of most members of the Federal Council, and probably won’t have those of the Parliament either. The second option is more likely to prove popular, and I will thus focus on it: it would involve much stricter regulations – rather than a ban – being imposed on the activities of these clinics. Violations of those regulations would involve sanctions of up to five years in prison.

Read More »Switzerland gets tough on suicide clinics