A walk in the woods

A return to ethical issues today. As ever, what makes a story interesting is when a second story causes you to look at the first in a new way.

The papers today have been looking at a Joseph Rowntree Foundation report that claims a single person needs a minimum of £13,400 gross a year to maintain a good standard of living. That standard will include bottles of wine, film tickets, bird feeders, a mobile phone and a bicycle. It excludes access to a car - apparently this is a luxury, not a necessity.

Meanwhile, in Cardiff, a small girl has Infantile Tay-Sachs disease. In her short life (she's only six) she has needed intensive care five times to get her through chest infections. Doctors apparently want the option not to treat her aggressively when she falls ill. Her parents say she has a right to life. They say (here is where the two stories collide) that she has a "marvellous" quality of life that includes foreign holidays, Centre Parcs and woodlands near by.

Standard of living is not the same as quality of life, of course, but the two are intertwined. You can be poor and happy, being rich doesn't necessarily make you happy. Back in April this year the Telegraph ran a story showing that although Britain is the world's 5th biggest economy it ranks only 17th in the world for quality of life. The Evidence Based Medicine series from the Hayward Group doesn't mention money at all in its definition of quality of life. The Quality of Life Challenge looks only at environmental issues - energy efficiency, lower taxes for "green" homes.

Psychologists consider that there is a heirarchy of needs. Basic needs come first. If you don't have a home and don't know if you'll eat this evening those needs are more pressing that whether or not you've seen the latest film or own a bird feeder. Certain basics need to be in place before we start to focus on the fancier things. Indeed, psychologust Oliver James says this very hankering after the fancier things can actually make us less happy.

So what makes good quality of life and standard of living? Is it a bottle of wine a week, a bird feeder and a trip to the pictures? Is it fast cars , fame and fortune? Or is it a walk in the park? The Telegraph reminds us today that the happiest people on the planet are the Danes. They quote Professor Ron Inglehart as saying "Ultimately, the most important determinant of happiness is the extent to which people have free choice in how to live their lives."

For me, this is the key in all this. Because your idea of happiness, quality of life, standard of living (and these aren't quite synonymous, but are surely intertwined) might be my idea of hell, and vice versa. You may feel that to be happy and have a good quality of life you need the fitness to climb mountains, bungee jump, hang glide, or just go jogging. I'd hate to be subjected to any of those things and would be happy to think I never had to do any of them. So if I were paralysed I might consider my life still to be worth living, but in the same situation you might wish yourself dead.

So you might look at the story of the little girl in Cardiff and feel sorry for her parents who think that having woodland nearby constitutes good quality of life when their daughter has epilepsy, is unable to speak and is almost totally paralysed. Or you applaud a couple who can see happiness in small things.

In the end it perhaps means that only an individual can decide what makes good quality of life for them; to decide when life is worth fighting for or when they would rather die. There can be no formula, policy or guideline to define these decision, which is why the Cardiff case will not be an easy one for the courts to consider.

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Dead or alive?

The BBC is running story today about a family in Mumbai who were taking their "stillborn" baby to the cemetery and when she began to gurgle. They were apparently "astonished". There is no indication as to how a man in Paris felt when he woke up on the operating table to find he was being prepared for surgery to remove his organs for transplantation.

In both cases the issue was around defining and diagnosing death. In the second case, which happened in Paris, the man had been diagnosed as dead under new experimental rules brought in to ensure that more organs are available for transplant. The article is vague about the rules, but refers to "heart stopped" which I assume is similar to "non-heart-beating organ donation" described in the Journal of Hospital Medicine. In the UK the criteria is brainstem death.

UK Transplant has a number of FAQs, including "how do they know you are really dead?" I'm surprised not to see listed as an FAQ "will doctors make an attempt to save my life if I am a donor or will they be more worried about having my organs?" It's certainly an objection I've heard from people- a fear of being used as a source of organs rather than being treated as a patient in need of care. It's a question more people will ask while incidents such as this French case continue to appear in the news.

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Guess how much I love you

Some things in life can be counted, weighed and measured. Two books, half a bar of chocolate, three pounds of cherries, 50g of hand dyed cashmere yarn, a metre of string. Or perhaps two hours wait in in A&E, one hairline fracture, three beds, fifteen stitches.

Other things are less measurable, expect perhaps by comparison. How funny is Jeremy Hardy? Does he make you laugh more or less than Andy Hamilton? Is an oak tree lovelier than a copper beech? Is Brief Encounter the saddest film you've ever seen?

The government thinks nurses should be more compassionate. It also thinks this is something that can be measured. How do you measure compassion? If I am compassionate towards one old lady in the morning can I treat a second old lady like second class citizen in the afternoon and still reach my compassion target? How many times do I need to say "there, there" before I can record it as compassionate activity? Is mopping a brow more or less compassionate that fetching someone a cup of tea? What is compassion, anyway? What happens if I feel as though I am being compassionate, but the recipient of my compassion feels I am being patronising, maudlin, overly familiar or intrusive?

Compassionate care is a good idea - as is treating patients with dignity. We should also treat our colleagues with compassion and dignity. We know what these things are - we certainly recognise when they are absent. But there are some things in life that just can't be measured (Elizabeth Barrett Browning not withstanding) or made into targets. They are the very things that are most important.

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DNR

I thought I'd have a return to ethics today. However, I'm avoiding the hybrid embryo debate in favour of something a little more directly clinical. A family has complained to the GMC because they said an order not to resuscitate was on their mother's notes, and they had not been consulted on this.

Initial (knee jerk) reaction is that this is a case of poor communication. The facts are scant, so it's impossible to say in this case.

Are there circumstances under which a DNR could be put on notes, and the family not informed? Suppose a patient asked not to be resuscitated, but wanted that decision to be kept from their family, to avoid distressing them or to avoid argument. Can a DNR be a private matter between patient and their care team? Does a member of the care team have a right to tell the family what the patient wishes to be kept from them? This seems to be the flip side of the question of what the patient has a right to know. If my relative is terminally ill, but I believe they can't cope with knowing that, do I have any right to ask the care team not to tell my relative how ill they are?

Part of the issue is whether a person refusing resuscitation is competent to make that decision. A person may be deemed competent to make some decisions about their care, but not others. A person has the right to make a decision that a healthcare professional might feel to be against their own, personal code of morals and beliefs.

A DNR decision can be made before we are even unwell, as part of a "living will" or advanced directive.

All trusts should have a policy on DNR orders. The BMA, RCN and Resuscitation Council (UK) issued a joint statement last year on "Decisions relating to Cardiopulmonary Resuscitation". Many of the main points of this document involve communication, capacity and the right of the patient to make decisions about their care. It specifically says (on p18) that "refusal by a patient with capacity to allow information to be disclosed to family or friends must be respected." In other words, a DNR, agreed by a competent patient and a care team, can legitimately be on a patient's notes, without the family and friends being consulted or informed.

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I'll have a tall, skinny decaff fairtrade latte with wings

Isn't it nice when things are simple? Well, perhaps. But it's possible to over simplify. If you send a friend into a coffee shop with the simple instruction to "get me a coffee", what are they going to bring you? Coffee means different things to different people.

I thought about this today when I heard a discussion on the Today Programme about human rights. Now I love the European Charter of Fundamental Rights, because it is so clear and simple. You don't need a law degree to understand it. The Universal Declaration of Human Rights is equally straightforward. Article one of the European Charter states that "Human dignity is inviolable. It must be respected and protected." Simple.

Unfortunately, this simplicity has its downside. When I ask you to bring me a coffee, anticipating a lovely skinny latte, I am going to be disappointed when you interpret "coffee" as meaning a full fat cappuccino with chocolate sprinkles and two sugars. Yeuch. Similarly, when a lawyer reads that a person has "a right to found a family" they interpret that as a right of a prisoner and his middle aged wife to have IVF. It's these and other interpretations of simplicity that lead politicians to call for the UK to withdraw from human rights legislation.

Human rights are also difficult when letting me have my rights will somehow infringe your rights. A man's right not to be a father, say the courts, outweighs his former partner's right to become a mother using their frozen embryos. If the embryos were inside her instead of out then he would have no such right - a man cannot force a woman to have an abortion, although he may have a right to prevent her from having one.

In the recent case of the Tory peer and the nurses Lord Mancroft complained about nurses discussing their private lives across his bed. The hospital in question was not happy. Was Lord Mancroft complaining about the personal lives of nurses, or about the fact that they discussed them over him? Do nurses have a right to have full modern personal lives outside work, or should they be the angels of popular Victorian imagination? Was Lord Mancroft's right to dignity violated by the nurses discussing their private lives around him? Patients and their carers both have rights - and responsibilities.

Essence of Care focuses on the basics of care that patients can expect, privacy and dignity being two of those basics. Age Concern campaigns for dignity for the elderly in care. You'd think that ensuring the elderly retain their dignity would be a simple thing. Simple isn't always easy.

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The wise child

News comes from the Times of a woman who is pregnant with her eighth surrogate child - a baby she is intending to carry to term and then give away to someone else. Depending on the arrangement it is possible that she will never see the child again.

The couple receiving the baby must be delighted - a real baby of their own. The genetic parents are likely to be themselves or one of them plus a donor, who might be the surrogate. They know who the surrogate mother is, and when their baby is coming. Perhaps they could have adopted, but babies aren't often adopted at birth, and then who knows who or what the parents are?

As for the surrogate mother - she is surely an angel, selflessly having babies for other people when she has none of her own. According to The Times she doesn't have a partner, and has never been in love, she is overweight and has had gastric banding, she suffers from depression. Is this a woman who needs care and help for her mental health issues? Is she a fit person to carry children for others? Is the organisation that arranged the surrogacy exploiting an unwell and unhappy person? She will gain £12,000 for carrying the child - what does she stand to lose?

Pregnancy is not without its risks. This woman has been through seven pregnancies already, which is bound to take a toll on her physical health. She is in her forties - an age at which some doctors feel it is unsafe for women to attempt pregnancy. How will the parents-to-be feel if this woman dies giving birth to their child? Or if the child itself dies? Or if the woman, falling into depression again, commits suicide - something she has already attempted. And what if this time the surrogate turns this into one of the 2% of surrogacy arrangements that end with the birth mother refusing to give up the child?

One person ( a man) commenting on this story condemns surrogacy as a "barbaric practice". He says mother and child will suffer trauma from being separated at birth and that this woman must be using "serial pregnancy" to fill the gap left by those seven missing children.

Others comments call surrogate mothers "selfless" women who give childless couples the child they long for. One suggests that as most MPs have children they can't know what it is to be childless and therefore are not fit to legislate on this matter. Does anyone have an absolute right to have a child, whatever the costs involved for others? Is it possible to live happily without children?

The BBC ran a story this month on twins who married each other, having been adopted as babies and never realising the true cause of their strong attraction. As family relationships - through multiple marriages and partnerships, surrogacy, IVF and so on - become more complex is it inevitable that individuals will suffer more problems? Or does infidelity and informal adoption mean that we're at no greater risk now than before of not knowing who our true parents are? They say it's wise child who knows his own father. Does it matter, except in terms of the new imperative to know our genetic history to predict our health?

One interesting take on surrogacy is the novel The Handmaid's Tale by Canadian author Margaret Atwood. It's set in a future where there are two classes of women - the rich, married and infertile and the fertile women whose job is to breed on their behalf.

What is the answer? Should we be more fluid and accepting of unusual family relationships, and perhaps relax the kinship laws that forbid some marriages, to allow people such as the twins to marry? Do we need artificial wombs or other scientific and technological advances to allow us to create as many children as we want? Do we need to change our attitudes to childlessness? Or to children?

Perhaps that's another definition of "ethics" - those questions for which there is no clear answer! And you know where to find more stories to spark ethical debate.

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A rose by any other name....

When you do the housework do you vacuum the floor or Hoover it? If you want to make a note do you reach for a ballpoint pen or a Biro? When you scribble a prescription are you prescribing ibuprofen or Nurofen?

Some brand names just stick, they become part of the language. Perhaps with drugs the reason that happens is that brand names are snappy names for marketing, while generics often fail to trip of the tongue. When sildenafil can be marketed generically I am sure we will all still be calling it Viagra. It's easier to say, easier to spell, and the word has passed into the collective consciousness through endless acres of newsprint and hours of TV coverage.

A commons public accounts committee thinks that GPs are too ready to write a brand name instead of a generic, bumping up the cost of pills and potions handed out each year to £8.2billion. As I drove to work this morning suggestion was made on the Today programme that the true cost of prescription drugs should be printed on packets for patients to see, to help them be aware how much the NHS is paying for them. On the one hand this might stop people collecting prescription drugs and then not bothering to use them. On the other, according to the programme, some people might press their GP for pricier brands believing they are better. We're used to thinking that generally speaking a £50 bottle of Bolly is nicer than a £3.99 supermarket own brand cava, that Harrod's cashmere is softer than Matalan's. Who is going to believe that they aren't just being fobbed off with five pounds worth of cheap pills when their friend has pills that cost £40 a packet?

The issue of generic versus branded is a problem elsewhere. Organisations like Oxfam campaign for developing world countries to be able to use cheaper generic drugs to treat their citizens. Drug companies feel that they should be able to use a patent to allow them to make money from their inventions, in which they have invested heavily. They say that if this didn't happen they wouldn't be able to afford to research and develop new drugs, and we'd all suffer. In the meantime, can it be right that they charge the NHS so much during the patented period when the market is, to all intents and purposes, a monopoly.

Oddly I've not been able to find anything from the pharmaceutical companies explaining why patents are important although I note that firms such as Novartis have information on ethical marketing practices and codes of conduct. These seem to focus on the way drugs are promoted to those who will prescribe them.

Stop thief!!

The Daily Telegraph has an interesting headline today - "Organs to be taken without consent." The article looks at the concept of "presumed consent" which means we assume that everyone wants to donate their organs at death unless they specifically say otherwise. After all, 90% of people, when asked, say they'd be happy to donate. At present we assume that no one wants to donate organs unless they specifically say so, and 40-75% of relatives refuse to allow organs to be taken when a family member dies.

The article moves on with some more emotive language. Patients' groups, it says, claim the plan will "take away patients' rights over their own bodies." The article plays on people's fears that sinister doctors will be whipping livers out of people before they are actually dead in order to pass them on to people awaiting organs.

There are two issues here. One is the way in which newspaper editors choose to present a story. The Telegraph wasn't alone in having a screaming headline on this. The Mail also chose to present it as a story of organs being taken without consent. The leading article in today's Independent claims that 1,000 people die each year waiting for a transplant, so the headlines could just as easily have read "Government to save 1000s from death."

The other strand here is around the ethics of consent. Consent has its difficulties, ethics are a complex. Neither is helped by knee jerk reactions and emotive language.

Yesterday's Independent on Sunday ran an article claiming that huge increases in the call for donations are due to binge drinkers destroying their livers and kidneys of the obese being damaged through the complications of diabetes. George Best received a liver to replace one damaged by drink. Should he have been given that liver? Are some people more deserving of new organs than others?

If we don't have enough organs to go around, how can we find more? One option being looked at is xenotransplantation - using organs from animals, including pigs. There are health risks involved - perhaps some that will only come to light too late. There are more ethical questions - is it right to breed pigs as if they were spare part factories for people, rather than animals in their own right?

Then there are artificial organs, including artificial hearts. Surely no ethical problems here? Perhaps the question edges into philosophy. If I have "bionic" limbs, and several artificial organs, to what extent am I still a human being, to what extent some sort of machine or robot? How much of the physical entity of "me" can be removed before I stop being "me"?

Part of the question around organ donation is to do with the ways in which we view death and what, if anything, happens to us after death. Will the dead be raised incorruptible? Is a dead body still the person we love? I can imagine that if I lost someone close to me I might want to sit with them for a while, growing accustomed to the fact of my loss. Those are precious minutes, hours, during which harvestable organs are deteriorating. If they were still on a life support machine could I really bear to have the organs removed when their heart was still beating, their lungs still breathing. What exactly is death?

UK Transplant has questions and answers on organ donation. Student BMJ, the World Health Organisation and the Nuffield Council on Bioethics all provide starting points for thought and discussion on this difficult topic.

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To err is human

Dr David Southall has been causing a stir in the media. In 2005, following the Sally Clarke affair, he avoided being struck off. Earlier this week he was found guilty of serious professional misconduct over another case and was struck off the medical register. Paediatricians rallied round, saying Dr Southall was the victim of a plot to deny the existence of child abuse. Some parents and children involved with the doctor accuse him of following his own agenda and keeping documents that should have been in medical files. The Royal College of Paediatrics and Child Health has described him as having made " a major contribution to child health."

Doctors are human beings. Sometimes they make mistakes. Sometimes their motives are flawed. They can have bad days, they can do bad things. They are just like everyone else. Because we perceive them to have power over people we all want them to do the right things for the right reasons all of the time. We want to feel we can trust them.

There are specific laws and guidance on protecting the vulnerable in society, which all health staff should be aware of. For guidance around children the NLH specialist library for Child Health is a good starting point.

The General Medical Council provides guidance for doctors on how to behave. It is the GMC that investigates allegations against doctors. Other professions also have guidance. The Nursing and Midwifery Council provides guidance on fitness to practise for professionals, as well as information for the public on making complaints. NHS Choices also advises patients on making complaints against the NHS.

I wonder how many complaints arise from a lack of understanding on either side about what is wanted, or what can be achieved? Communication is a key skill for all health care staff - which is why we have so many books on the subject in the library.

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Who lives, who dies?

This morning I heard a story on the Today programme about health economics. A radiotherapist was saying that for the money spent treating 500 women with Herceptin he could treat 3000 women with radiotherapy.



The discussion was sparked by The Investigation – a programme to be broadcast this evening. It will ask why cancer survival rates are the worst in Western Europe, despite “huge government expenditure”. (Don’t worry if you can’t catch it this evening – it’s available as a podcast and through listen again.)

The problem is that no pit of money is bottomless. Yesterday’s Today programme had a discussion on the need to increase spending on defence. John Humphries asked where the money was to come from – which other budget would they slash to pay for it – education, health or transport? The interviewee tried to avoid the question, saying that the amounts were only small. Presumably they are, but if it’s your school that has to close, or your village bypass that doesn’t get built, then it really doesn’t help to say that it’s only a small amount of money.



BBC news says that Herceptin costs £200,000 per patient. In the bigger scheme of things, that’s nothing. You couldn’t buy a house with that, a city banker would be insulted to have it as his annual bonus, but to the woman who receives successful treatment it’s worth every penny. On the other hand that was £200,000 that could have bought different treatment for different people – perhaps more people. It's £200,000 that can only be spent once and represents people who missed out because of that.

One of the speakers in today’s discussion reminded us that every patient is a mother, sister or daughter and on that level it is impossible to make choices. This is reflected in the titles of books on the subject – Who Should We Treat?, Hard Choices in Health Care.

Here some other starting points for thinking about healthcare rationing or spending priorities.

A 2005 BMJ editorial looks at “A middle way for rationing healthcare resources”

The Office of Health Economics has an online resource on health economics.

The think tank Civitas asks “Why Ration Healthcare?”

Herceptin has caused controversy before and the BBC has a collection of pages looking at value for money from drugs, drug rationing and “patient power” where an articulate patient with the money to bring in lawyers and the foresight to involve the media overturns a local decision to get funding for a drug…which may or may not then save their life.

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The wake up pill

I've been tracking the use of this blog with Google Analytics and was interested to see that several people stumbling across it had been looking for information on the ethics of coma. As I've mentioned before ethics is about how we look after the vulnerable - and those in comas are vulnerable because they are unable to tell us about themselves and their wishes.

One recent coma story covered here was the women whose family fought for her not to be given Zolpidem to wake her up. Today the Telegraph reports on a story of a young woman who has been woken by Zolpidem and seems to be recovering.

Looking at the pictures of this young woman, slumped in a wheel chair, it strikes me that we move on to a second area of ethics - care of the disabled and issues around quality of life. What does it mean to have quality of life? How can it be defined and measured? Is it enough not to suffer or should there be more to it than that?

This ties in, too, to the debate on abortion. Some abortions are carried out because the child will be disabled. How badly disabled must one be in order for life not to be worth living? I think of the range of cases - from the young girl in Ireland and was carrying a anencephalic child (that's a child with most of its head missing, in lay terms) to the vicar who asked the police to prosecute in a case where a child was aborted after 24 weeks for cleft palate.

Abortion is a complex issue. The BBC provides a page on ethical issues around abortion. Organisations on different sides of the debate include the Society for the Protection of Unborn Children , British Pregnancy Advisory Service the Catholic Church in England and Wales and Marie Stopes International.

A question of ethics

The library current awareness page now has a section on ethics. Recently I've been adding a lot of stories on the abortion debate to it. It struck me that many of the stories on ethics seem to be about preserving and protecting life, or meeting in a dignified way with death, at the beginning or end of life. If you were asked to give two examples of ethical debates in health what would you come up with? The two that leap to my mind are abortion and euthanasia.

This made me wonder what was the definition of ethics. My Shorter Oxford helpfully defines it as the science of morals...and then defines the science of morals as being to do with ethics.

I think it has to do with protecting the weak and vulnerable. Ethics are always interesting, perhaps it is also that we were all once born and will all eventually die so that cerebral debate on the rights of the terminally ill to die with dignity will one day become a very real set of decisions about your parent, or sibling, or you.

The other area of ethics in health is around animal welfare. Is it right that we should use animals to test drugs, shampoos, lipsticks, to ensure that we can use medicines and other products safely? Again, this seems to be to be an issue of protecting the vulnerable.

Beyond that, ethical questions arise when we learn how to do something new, and immediately we ask should we do it? I presume that in the past that impulse was a safety net. I have discovered that I can pull this animal's tail, put my hand in this fire or jump down this ravine. But are those actions wise? Will they harm me?

We teach children very early on that there are many things they can do but should not. Some of these are definite rules to avoid harm - don't touch that hot mug of tea! Don't put that pea in your ear! Don't hit your sister! Others are rules to help us fit into the rest of society - Don't pick your nose! Don't put your elbows on the table! Don't say that rude word!

Sometimes humankind learns how to do things and then finds they are harmful. We discover thalidomide and damage many babies. We discover that cows will eat other animals, and end up with BSE and vCJD. We discover tobacco and give ourselves lung cancer. Humankind has no parent to advise us, so we must think things out for ourselves. Sometimes we have to learn things through experience. Sometimes it takes many years for the harm to become apparent - hence the current debate on whether or not mobile phones cause brain tumours.

So it seems to me that ethics is about whether we should do those things we can do. It is about ensuring that we do not harm ourselves as individuals, communities or a species. It is about protecting others, too. Above all, ethics is about thinking before we act. There are more topics for ethical debate on the website of the Nuffield Council on Bioethics and on Intute's Bioethics Web. There are also ethical issues around you every day that should make you think.

Mother knows best

Hitting the headlines this weekend was the story of the mother who wants her daughter to have a hysterectomy. There is no medical need for this operation, but the girl has cerebral palsy and her mother is concerned that her daughter will be "confused" by menstruation and that it will cause her "indignity".

Presumably the mother speaks from her own experience when she speaks of menstruation involving "tears...pain...embarrassment". Menstruation is a very personal issue. Janet Street Porter, writing in The Independent about a new pill that will prevent periods talks of the "horror of menstruation." For other women it's no more than a minor inconvenience. Is it right to force you own view of menstruation on to someone else. Why assume that it will cause pain and embarrassment to the daughter when many women experience no such thing?

And why undergo surgery - which always carries some risk - when there is a handy pill that will do the same job? Pills have safety issues, too, and who knows how preventing part of a woman's normal biology will affect her health? The experts, as ever, are divided.

This story has echoes of the "pillow angel" story. Who benefits from the hysterectomy - the child, or the mother? If the mother is the primary carer is it necessarily wrong to do something that is "just" in her interest? Surely it's in the child's best interest to have her mother feel she can cope with caring for her? Without care at home this girl would need to be cared for by the state, costing money that could be spent elsewhere. Carers save the NHS billions of pounds each year.

As ever, although the mother says this is all about her child, any court decision on whether or not doctors can carry out the hysterectomy will have wider implications. Disability groups perhaps fear the thin end of the wedge, that having gone this far society will ask why not give hysterectomies to women with Downs, with MS, with ADHD, with any nasty antisocial habits we'd rather not perpetuate. How many steps is it from one hysterectomy to mass sterilisation of "life unworthy of life"?

As with many ethical debates our personal views and experiences colour our reactions. We perhaps react more strongly where a child is involved. We have our own views on the right and proper way for a mother to treat her child. Should we accept these emotions as part of the evidence in considering an ethical case, or is ethics an absolute, like a mathematical problem where it is possible to come to the right answer?

I don't have the answers. We have books in the library to help you think through ethical issues. You'll also find stories on ethical issue to get you thinking on our current awareness page.

Living wills, comas and life after death

News comes from America this week of a woman who has been in a coma for the past six years, following a heart attack. Last week she woke up and spent three days chatting to family and friends, before slipping back into a "minimally conscious state.” What is stranger is that this is not the first time she has surfaced. Will she wake again? No one seems to know.

Earlier this year a court ruled that a woman in a coma should, despite her family’s wishes, be given the drug Zolpidem, which can briefly wake such patients. The family argued that it would be cruel to wake her; that she would be confused and frightened to wake and realise what had happened to her. In the event the pill didn’t work and a judge allowed doctors to let the woman die.

Further back a husband fought with his in-laws. He said his wife, Terry Schiavo, wouldn’t want to live in a persistent vegetative state – her parents insisted that she would. The husband received death threats, the Supreme Court was involved, the family was ripped apart. Visits to the Living Will Registry shot through the roof. In the end Mrs Schiavo’s feeding tube was removed and she died.

Would a living will or advanced directive have helped in these cases? Since we don’t know how it feels to be in a permanent vegetative state how can we write something now about what treatment we do or don’t want if we end up in such a state? Easy to say now “I’d rather die” – but suppose once in PVS you are aware of loved ones, have wonderful dreams and memories and are certain you will wake again one day. It’s too late then to change your mind – you’ll have no way to tell people that you are happy as you are and don’t want to die. Recent research suggests that families of patients with “living wills” are happier with the end of life care received than the families of those without such documents.

The GMC has guidance on patients in persistent vegetative states We have books in the library that discuss this and other ethical issues. Wikipedia has suggestions for further reading and a list of PVS cases. The UK Clinical Ethics Network has a discussion on ethical issues at end of life. The BBC has legal and ethical information on living wills and some information on how to draw one up.

There are no right and wrong answers here, and every case is different, because every case is a human being and a family. Every clinican should be prepared by thinking the questions through, challenging your own assumptions and being prepared to change your mind as new information comes to light.

Angels and chimera

Ethics is an important subject in health, whether you are a nurse, a doctor or any other healthcare professional. It may sound like a dry and stuffy topic, but at its heart there is often a human tragedy.

There are two stories in the news at present that raise interesting ethical debates. Nine year old Ashley - who is known as the "frozen child" or the "pillow angel" has been given surgery and hormone treatment to restrict her physical development to help make it easier for her parents to care for her. Is this an aggressive assault made by carers with their own interests at heart? Or the thoughtful action of loving parents? Which is more abhorrent to us - a fully grown adult woman with the mind of a three month old, or a child forced to undergo surgery to prevent her becoming a woman? Does our own revulsion have any place in our thinking on ethics?

Are you revolted by the thought of an embryo that is part human, part cow? Or part human, part rabbit? Are the scientists who want to create these chimera pioneers or madmen? Is their insistence that the chimera will help cure motor neurone disease the truth, or emotional blackmail?

There are no simple answers. All you can do is inform yourselves about all sides of the debate and come to your own conclusions. These stories are often covered in detail on the BBC online health news, with coverage given to a range of opinions. It's a good place to start your thinking on ethics. http://news.bbc.co.uk/1/hi/health/default.stm