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Children and Families

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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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.

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Premature death or wrongful death?

A headline in the Daily Mail from yesterday highlights the cost of over treatment for extremely premature and marginally viable infants.

    “Parents cause infant to suffer by forcing doctors to give futile treatment”.

Despite doctors counselling a set of parents that their 22 week gestation premature infant (born 4 ½ months early) had virtually no chance of survival, the parents insisted that Warren* be actively resuscitated and treated in intensive care and threatened legal action if doctors refused. Warren received chest compressions in the delivery room and was put on a breathing machine. He developed holes in his fragile lung and had multiple drain tubes inserted into his chest. Warren’s thin skin tore and broke even with gentle handling, and he developed patches of skin loss, like second degree burns, on his trunk and limbs. He developed bleeding in the centre of his brain, and on the 5th day of life perforated his bowel from infection. He died the following day. Meanwhile, 2 infants born prematurely in the same hospital were unable to be accommodated in intensive care because of lack of beds and had to be transferred to another hospital 1 hour away. One of those infants became unstable during the ambulance transfer and developed additional complications. Lawyers representing Warren are now considering legal action against the doctors and against his parents.

But of course, that wasn’t the real headline or case in the Daily Mail, and legal action such as that described is not likely to take place.

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A change of heart

Earlier this week fourteen-year old Hannah Jones received a heart transplant. This is eight months after Hannah hit the news for her refusal to have the surgery. There was much debate in the media (including this blog) at the time about whether or not teenagers should be allowed to refuse life-saving treatment, though overall there was a lot of support for Hannah’s decision.

But in the last week Hannah has apparently changed her mind, and elected to have the surgical procedure. What is the significance of this for the decision to go along with her earlier choice? Hannah might well have died in the last 8 months, in which case she would never have had a chance to rethink her position on transplants. Does the fact that she has now changed her mind give us more reason, in future, to overrule similar patients who are declining live-saving treatment?

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What’s special about selling gametes?

Dominic Wilkinson posted yesterday on the issue of whether payment for egg and sperm donation should be legalised. This question attracted significant media attention yesterday after Lisa Jardine, of the HFEA, called for debate on the existing UK ban on payment for donors. Today's Guardian contains a piece highlighting several ways in which people can already sell their bodily parts or products, ranging from livers to breast milk, and from blood to hair. Sale of many of these bodily parts/products is regarded is ethically problematic, and is, in many cases, illegal. But not in all cases. For example, few would have a problem with the sale of hair for use in wigs.

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Feetility – should we pay egg and sperm donors?

Lisa Jardine, the head of the UK Human Fertilisation and Embryology Authority, has called for public debate about paying egg or sperm donors. Currently donors are given a maximum of £250 in reimbursement for expenses. But donation rates have fallen in recent years, at least in part related to changes in rules in 2005 preventing donor anonymity. As a consequence a significant number of patients seeking donor egg or sperm for in-vitro fertilisation have been forced to travel overseas. In essence Jardine suggests that a regulated local market in donor eggs and sperm may be better than unregulated fertility tourism.

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Refusing Cochlear Implants: Is It Child Neglect?

Australian Graeme Clark developed the cochlear implant, or bionic ear, in the 1970s. It does not amplify sound but directly stimulates any functioning auditory nerves in the inner ear. The Australian Government has promised a screening program of all babies for deafness from 2011. At present, only 70 percent children who might benefit are picked up early. The earlier deafness is detected, the more effective treatment can be.

Lobby group Deaf Australia says the implant "implies that deaf people are ill or incomplete individuals, are lonely and unhappy, cannot communicate effectively with others and are all desperately searching for a cure for their condition. [This] demeans deaf people, belittles their culture and language and makes no acknowledgment of the diversity of lives deaf people lead, or their many achievements."
Some deaf parents have denied their children cochlear implants. Is this right?

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Pandemic ethics: Party to the flu (or vigilante vaccination)

A public health expert has warned yesterday against the idea of swine-flu parties, arguing that it may undermine the fight against the emerging pandemic. But others, including James Delingpole in the Telegraph have embraced the idea, hoping that mild influenza now will protect against more serious illness later. Exposure parties might be thought of as a form of vigilante vaccination against influenza.

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Umbilical cord blood donation: opt out or work on Sundays?

Umbilical
cord blood (UCB) contains haematopoietic stem cells, which can be used for the
treatment of several lethal disorders, including leukaemia
and several types of anaemia. Other sources of haematopoietic stem cells are bone marrow and ordinary peripheral
blood. Unlike bone marrow donation, which requires general anaesthesia, UCB
donation does not cause any inconvenience or significant risks for the donor. Peripheral
blood contains very few stem cells. Another major advantage of using UCB stem
cells is that less genetic similarity is required between donor and recipient.
This increases the chance of finding a ‘match’ and thus of the transplantation
being successful.

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Nice People Take Drugs (Too)

The drug and human rights charity *Release* recently launched an advertising campaign in which the slogan ‘Nice People Take Drugs’ was displayed on the sides of London buses. Their aim was to encourage society to face up to the reality that a huge proportion of the population does at least experiment with drugs and to combat the popular assumption, which underlies a good deal of political rhetoric and media coverage, that since drugs are simply ‘evil’ there is no point in seriously debating drug policy. Those ads are now being withdrawn by the company that booked the space, after advice from the Committee of Advertising Practice: http://www.guardian.co.uk/media/2009/jun/09/nice-people-drugs-ads-pulled

Apparently, Release has been told that their strap-line would be more acceptable if it included the word ‘too’. This suggests that the CAP may have felt that the public would read the original claim as equivalent to ‘All those who take drugs are nice people’. But even adding the word ‘too’ may not be enough. For the new sentence might be read as: ‘All nice people take drugs, along with other things (such as holidays when they can, advice when they need it, offence when people are rude to them, etc.).’ Of course, no one would have understood either the new or the old sentence in these ways. But in fact, though it should be up to Release how they word their strap-line (the censorship charge they have made doesn’t seem far-fetched), adding ‘too’ does bring out more clearly what they want to say: that we should stop demonizing drug-takers and have an open, impartial, and well-informed debate.

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