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(7) Medical Law

Donation and Transplantation: How does it work?

Organ donation

Types of Donation

Euthanasia and assisted suicide

euthanasia 1

Murder, euthanasia, and assisted suicide

If you went into a bar and injected a fatal dose of a drug into someone, intending to kill them or to do them really serious harm, you’d be guilty, wherever you were in the world, of murder. Note, importantly, that motive and intention are different. Many people commit murders with compassionate motives. The classic example is the ‘mercy killer’ who, wishing to spare his wife more agony, puts a pillow over her face and suffocates her. His motives are love and mercy: his intention is to kill.

Lilian Boyes suffered for many years from rheumatoid arthritis. It became increasingly agonizing. She howled like a dog when she was touched. Palliative options were exhausted. She repeatedly begged her physician, Dr Cox, to put her out of her misery. He repeatedly refused. There were no doubts about her mental capacity. She continued to beg and to howl. At last Dr Cox gave her a lethal injection. He wrote up in her medical notes what he had done. A nurse contacted the police, and Dr Cox was tried for attempted murder (an attempt rather than the completed offence, notionally because the prosecution could not prove definitively that the injection was the cause of the death-it was theoretically possible that she had died of an entirely unrelated arrhythmia just as the plunger was pressed-but more likely because the prosecution realized that a jury would be more likely to convict of attempted murder since a murder conviction carries a mandatory life sentence in the UK). The case was indefensible. The law was clear. He was legally indistinguishable from the husband with the pillow, and was duly convicted. His benign motive was reflected in his sentence-a short and wholly suspended sentence of imprisonment: see R v Cox (1992).

All of us surely have sympathy both for Lilian Boyes and for Dr Cox. The question is whether that sympathy is a good reason for a change in the law of murder. Proponents of the legalization of euthanasia tend to use two strands of argument. First, they contend that compassion makes euthanasia morally mandatory. We wouldn’t let our dog continue to scream for years with uncontrolled pain: we’d take it to the vet to be put down. Why should we deny to humans what basic decency makes us do to our dogs? And second, they emphasize autonomy. Our lives are our own, they say. We can decide what to do with them. If we choose to end them, that’s our business.

The opponents of a change in the law are often, but by no means always, motivated by a belief in the sanctity of life which is often rooted in the notion of the Imago Dei-the idea that God’s image is stamped on all humans, and that to take life is to efface that image. They are typically suspicious about the primacy of autonomy, suggesting that it is not the only principle in play. They note that the exercise of X’s autonomy necessarily affects the life (and the exercise of the autonomy) of Y. A special and important example of this is the asserted slippery slope from voluntary euthanasia to involuntary euthanasia (the killing of a patient who has not consented to it, or not consented to it when in possession of all the relevant facts, or who has consented to it under some sort of duress from relatives or carers, or who simply feels that their continued existence is a burden to others).

Whether this slippery slope exists in jurisdictions where euthanasia is lawful, and if so whether any block can be placed on it to stop practice sliding disastrously all the way down to the bottom, are matters of intense debate. It is probably true that capacity-truncating depression is a common and under-diagnosed condition in patients who ask for euthanasia. This means that there is reason to wonder about the validity of the consent they give, and reason to wonder whether, if their depression were treated, the desire for death would recede. But it does not necessarily mean that no sufficient safeguards can be put in place to relegate these concerns to the status of mere slogan. If autonomy is the sole arbiter of action, say the opponents of euthanasia, why restrict the right to die to terminally ill patients (as is usually the case in those jurisdictions where euthanasia is permissible)?

Why not allow a tired, bored person to drop in at a euthanasia booth on the way home? They assume, in this argument, that this will be unthinkable. The proponents of euthanasia have three responses. First, and most radically: ‘Why not indeed? But sadly society’s not yet mature enough for such a dramatically enlightened step.’ Second, and often bolted on to the first: ‘That’s not the law we’re asking for at the moment, so don’t introduce irrelevancies.’ And third, and more disarmingly: ‘There may be real concerns about whether a request from a physically well person is made with full capacity. Autonomy would therefore be suspicious of the booth.’

Another argument from the opponents is based on the role of doctors, who would be doing the killing. If we say for the sake of argument that X has a right to be killed when, where, and in the circumstances that they wish, should that imply that X can say to Y: ‘You must kill me, whether you want to or not?’ If Y is society, perhaps this demand is not so offensive. If Y is a person, or perhaps even a profession, it becomes trickier. And ultimately it is a profession, and a person within a profession, who has to do the killing.

Individual doctors, whatever their broader views on euthanasia, have tended to express distaste for doing the killing themselves. The medical profession in many countries, concerned about what euthanasia laws would do for the doctor–patient relationship, has been slow to endorse those laws. But this is not always the case: it is hard to make useful generalizations, particularly since so few countries have experience of euthanasia.

Significantly absent from the ranks of pro-euthanasia doctors are palliative-care physicians-those who deal with the reduction of pain and distress at the end of life. Their stance has tended to be that euthanasia is never necessary: that modern palliative care enables a good death for all. Even in the very rare cases where satisfactory analgesia is impossible, one can always sedate to unconsciousness -effectively anaesthetizing the patient until she dies.

The pro-euthanasists respond that good palliative care isn’t available to everyone, and that it is absurd and intellectually dishonest to say that there’s an ethical difference between ablating someone’s consciousness permanently by anaesthesia and ablating it permanently by causing their death.

 

And so it rumbles on.

 

Assisted suicide is a close ally of euthanasia. But there are some important differences. Most jurisdictions do not now make it an offence for a person to attempt to commit suicide. There are compelling reasons for this. Pressure for change came from doctors who noted that being the principal prosecution witness against a patient they had successfully pumped out was unlikely to help the therapeutic relationship with that patient. Often, however (for instance in the UK and many US states), it is an offence for someone to help someone commit suicide.

Assisting suicide of course covers a multitude of legal sins. Some are downright evil. Take, for instance, a recent UK case where the defendant persuaded his girlfriend that she was worthless, demon-possessed, and better off dead. She eventually believed him, drank the bottle of vodka he’d handed her to give her Dutch courage, and, at his encouragement, jumped off a bridge. Some are motivated simply by compassion. Some sort of legal control of assisted suicide seems appropriate, but so does a good deal of prosecutorial discretion.

Any sensible law permitting assisted suicide will, as all jurisdictions that have such laws recognize, need robust safeguards to ensure that requests for suicide are made voluntarily, without coercion, and in full knowledge and understanding of the relevant facts.

 

Withholding and withdrawing life-sustaining treatment

 

Ms B had a bleed into her cervical spinal cord. It paralysed her from the neck down. She couldn’t breathe for herself: a ventilator had to do it for her. She found her life unbearable. She asked her clinicians to turn off the ventilator and let her die. They refused. They were very fond of her, and they thought her life was worth living. She took them to court, asking the court for an order that her continued ventilation was unlawful. The only issue for the court was whether she was mentally competent to make the decision-whether she had the cognitive apparatus to understand what she was asking for-and whether she was properly informed. She was competent, and so the ventilation constituted an assault. The UK NHS body in charge of her care (as opposed to the doctors who had expressed their reluctance) was ordered to stop the ventilator and let her die: B v An NHS Trust (2002).

This was not a suicide or an act of euthanasia. It was a natural death. What killed Ms B was not the flick of the ventilator switch, but the bleed and the consequential respiratory paralysis. The case illustrates a principle respected in all jurisdictions: competent adults can decline even life-sustaining treatment. The alternative would be a frightening paternalism. For US examples, see Satz v Perlmutter (1978), McKay v Bergstedt (1990), and Georgia v McAfee (1989).

It is much more difficult with incapacitous patients.

A 45-year-old man is involved in a catastrophic accident. Like Tony Bland, he is in PVS. He has no sensation, nor will he ever have again, but he normally needs no active medical care other than tube feeding. He gets a chest infection. A five-day course of oral antibiotics would cure it. If it is not treated it will kill him. What should be done? There are four common legal strategies.

 

Substituted judgment

 

Here, the decision-maker seeks to make the same judgment that have been made by the incapacitous patient were that patient not incapacitous. This will involve an inquiry into the patient’s wishes and values. This is a common approach in the US, but many states have recourse to the best interest’s strategy if the views of the patient cannot be determined with sufficient certainty. The substituted judgment approach sounds good: its rhetoric is straightforward patient autonomy. But patients’ supposed views are often inaccessible, or can be determined only by looking through the possibly jaundiced eyes of those, such as relatives or carers, who may have a stake in the patient’s death. Few of us are articulately philosophical when it comes to considering how we’d like to die, and even fewer of us have the medical knowledge necessary to tailor our utterances closely to the clinical circumstances in which we are likely to approach death. There are, too, plenty of studies showing that, when we find ourselves in the medical situation that, when healthy, we feared most terribly, we find our lives much more valuable and bearable than we thought we would. I doubt that most of us factor that literature into those depressing end-of-life conversations we have in the early hours-precisely the sort of conversations that are likely to take centre stage in a determination of substituted judgment.

Substituted judgment, of course, can have no place in making decisions on behalf of people who have never been able to make or express decisions on their own behalf (for instance children or people who have never had capacity). Since most of us are more or less incompetent and inarticulate, and do not record our views reliably, it seems strange to say that there’s such a rigid division between the technically incompetent and others that a wholly different test should be applied to each.

 

Best interests

 

The test used, for example, in the UK, is the best interest’s test, whereby an action or inaction will be lawful if it is in the best interests of the patient. ‘Best interests’ are considered holistically: they are not a mere audit of the ‘medical best interests’. In theory this is an objective test: something either is or is not, as a matter of fact, in someone’s best interests.

In PVS cases judges have struggled (notoriously in Bland) with the question of whether a permanently, irretrievably unconscious patient has any interests at all, but surely such a patient does: he would want, for instance, to be remembered well. A PVS patient is not a mere piece of meat on a slab. Suppose it were proposed that medical students practised rectal examinations on a PVS patient. Would that be right? It would not, and that is because the patient has residual interests (perhaps best described as dignity interests, protected in Europe under, I suggest, Articles 8 and/or 3 of the European Convention on Human Rights) which can still be violated. You don’t have to be cognate to be human or to be abused.

In practice, best interest’s determinations are often infused with substituted judgment. The English Mental Capacity Act 2005, for instance, requires a decision-maker to consider, when deciding where someone’s best interests lay, any previous expressions of opinion by the patient. It’s assumed, therefore, that it may not be in the best interests of a patient to be dealt with in a way with which they’ve previously indicated they’d be unhappy.

The courts often encourage a ‘balance sheet’ approach. They conduct an audit of the patient’s life, listing in one column the factors in favour of continued existence, and in the other the factors in favour of death. Obviously not all factors have the same weight: judgment has to be applied. But once the factors are appropriately weighted, one theoretically adds up each column. The column with the highest score wins, and the judicial thumb is turned up or down accordingly.

This sounds easier and more scientific than it is. ‘Best interests’ are notoriously elusive. Sometimes (and particularly where the patient is very young and very disabled-perhaps even unable to manifest, by vocalization or facial expression, signs of pain or pleasure), it may be necessary for the law to make certain presumptions. One important presumption is the presumption in favour of continued existence. If you choose, you can call it a foundational respect for the sanctity of life. It has a long and distinguished lineage. It is crucially important in deciding how the various factors in the best interests audit are weighted. It is often decisive. But it can be (and often is) displaced.

 

Proxy decision-making

 

Sometimes people appoint someone to make decisions for them. This is typically done by a durable or lasting power of attorney. Often (for instance in many US states and in the UK), a power of attorney entitling the attorney to decline even life-saving or life-sustaining treatment on behalf of a patient has to comply with particular formalities that may not apply to more general powers of attorney. Parents typically make proxy decisions for their children, of course. And that includes treatment decisions. But parental views are best regarded as an aid to determining where the child’s best interests lie. They’re a very helpful aid: so helpful, indeed, that they are presumed to be definitive of those best interests in most jurisdictions. But the presumption can be rebutted. The court has the last word.

It’s broadly the same for proxy decision-making on behalf of adults. All the legislation that permits lasting powers of attorney reserves to the court the ability to review an attorney’s decision. So the fate of a person who has executed a power of attorney may nonetheless be decided according to (depending on the jurisdiction) the best interests or the substituted judgment test.

 

Advance directives

 

Otherwise known as ‘living wills’, these are expressions by a person made, when they are still competent, about how they would like to be treated when they are no longer competent. They may apply to the withdrawal or withholding of life-sustaining treatment, but particular formalities are often required when they do. They may take the form either of a statement of principles that the person would like to have applied in relation to their end-of-life decision-making, or of a medically specific direction such as: ‘If I become mentally incapacitous and doubly incontinent I do not want any life-sustaining treatment.’

Their legal effect varies between jurisdictions. In some places they are merely evidence which can be taken into account in deciding what to do. In others they have the same effect, if valid and applicable, as a refusal by a competent patient.

Importantly they are almost always refusals. That’s because it is very unusual to be able to compel a doctor actively to do something she’s unhappy about. But stopping her doing something that she might consider worthwhile is very different. They can be useful, but they need to be approached cautiously. They need to be kept updated. Medical science moves on, and patients’ views change. By the time an advance directive becomes relevant, the therapeutic or palliative options, or the patient’s personal circumstances or philosophical convictions might be very different from those that pertained when the directive was made. Sometimes, too, disease can transform personality. Suppose X is terrified of Alzheimer’s disease. He makes a directive saying that if he gets the disease he refuses life-sustaining treatment. His fears are realized. He is diagnosed with Alzheimer’s dementia. It strips away a lot of his cortex, but it also strips from him much of the angst that, when he was capacitous, made his life hell. He seems to have been transported into a child-like Eden. He laughs with the nurses, giggles happily with his fellow patients, and watches, with apparent enjoyment, the very worst daytime TV. So far as anyone can tell he’s happier than he’s ever been.

But then he contracts a chest infection. Just as in the case of our 45-year-old road traffic victim, it will kill him in five days if it’s not treated with oral antibiotics. The daughter, who is the sole beneficiary under his will, produces the advance directive, saying that if he is given the antibiotics she will sue for assault.

What should the doctors do? Doesn’t it seem as if X has died, and that a different person, Y, has risen from his ashes? There’s only a superficial biological continuity between X and Y. They share some cells. Why should a document signed by X, who is dead, be the warrant of execution of another person, Y, whom X never met and whose condition X never anticipated?

There is no straightforward answer to this question from any jurisdiction, although textbooks often suggest that there’s nothing here to discuss-and that the death of Y is legally inevitable.

 

Withdrawing and withholding: no distinction

 

A final point: it’s usual for lawyers and ethicists to assert that there’s no material distinction between withdrawing and withholding treatment. The reason for that is clear enough. If there were a distinction, it might prove legally or ethically hard to stop treatment that had been started. That might make doctors reluctant to start potentially valuable treatment. And that would be in no one’s interests.

 

Organ donation and the ownership of body parts

 

At least if I’m in England, I don’t own my own body. Indeed it is incapable of being owned. I don’t even possess it: R v Bentham (2005). This might seem odd. I feel and talk as if I own it. But when I feel and talk that way I’m being legally very sloppy. What I’m really saying is that I have a right (or at least more of a right than anyone else) to control what happens to my body. And if the proposition is put like that, the law agrees with me. Indeed, as we’ve seen when we looked at the law of consent, the law agrees very robustly indeed-as long as you’re a legally competent adult who’s in a hospital rather than in a sadomasochistic salon. But the law has a problem with the notion of the living body as property. Yes, there’s a problem with the dead body too, of ancient origins, but this is really a corollary of the problem with the living body. Why should my descendants have a claim to my corpse when I have no claim, when alive, to the same mass of cells?

The law’s distaste has two roots. The first is theological. The law was framed by believers who thought that to assert ownership over oneself was blasphemous. We didn’t create ourselves, and so we don’t possess title over ourselves. This attitude (perhaps buttressed by a deeply entrenched instinct) persists, although the beliefs, by and large, do not. The second is related to it, but is a creature of Kant and the Enlightenment. It’s a hatred of commodification. ‘Distaste’; ‘instinct’; ‘hatred’: these words sound anomalous in a book about the law. But in this area, perhaps more than any other (which is saying a lot), judges shoot from the intuitive hip. It’s hard to trace consistent strands of reasoning: policy is dressed up, often very implausibly, as logic.

 

Now it’s property, now it’s not

 

But it’s hard to get away completely from the notion of property. Property thinking and property language are sometimes very useful. And, by and large, the courts haven’t bothered to get away. They have been messily pragmatic. To the extent to which it’s convenient to see body parts as property, they have done so (peppering their judgments with caveats). The overall result has been that body parts are sometimes, sort of, property, and sometimes, most emphatically, they’re not. Here’s an example of that pragmatism. The English Court of Appeal in R v Kelly (1999) reaffirmed the old, basic rule that there was no property in unmodified body parts. It went on: ‘It may be that … on some future occasion … the courts will hold that human body parts are capable of being property for the purposes of [theft], even without the acquisition of different attributes, if they have a use or significance beyond their mere existence. This may be so if, for example, they are intended for use in an organ transplant operation, for the extraction of DNA, or … as an exhibit in a trial.’ This is remarkable judicial frankness. It’s saying, in effect: we’ll invest something with whatever attributes it needs to have in order for us to do the Right Thing. That’s no bad thing. Getting the right result is rather important. Its importance tends to be underrated by legal scholars.

The Germans are unusual in being forthright and consistent about the status of severed body parts. For the Germans, these are property. Most other jurisdictions try to find ways to avoid the simple, unequivocal label ‘property’ and its consequences. The High Court of Australia is typical. Clinging, in Doodeward v Spence (1908), to the historical insistence that there was no property in a corpse (grave robbers were charged with theft of the shroud, or with obscure ecclesiastical offences concerning grave desecration), it said that someone who puts work or skill into the treatment of a dead body or a body part so that it acquires ‘some attributes differentiating it from a mere corpse awaiting burial’ acquires a right to retain possession. Doodeward was the nemesis of the thieves who stole body parts from the Royal College of Surgeons. They argued that they could not be convicted of theft, since no property had been taken. Not so, said the English Court of Appeal. The parts had been preserved: labour had been expended on them. Accordingly they were sufficiently ‘property’ to be stolen: R v Kelly (1999). Cases about the ownership of parts or products of a living human body have tested the judges’ ability to get by without the notion of property. In Moore v Regents of the University of California (1990) (Supreme Court of California), the claimant had leukaemia. His spleen and other body parts were removed and, without his consent, cells were used to establish a very economically and medically valuable cell line. The cell line was patented. It earned a lot of money, but not for the claimant. He sued, contending, amongst other things, that his cells were property which had been ‘converted’ to the use of another. The court disagreed with this, concerned about the stifling effect on research that might result if entirely innocent researchers might be liable in conversion for working in good faith on a cell line of whose provenance they knew nothing. There were other remedies available to the claimant: the doctor who had removed the tissue without consent was liable for breach of fiduciary duty and for operating without consent. But those claims weren’t worth anything like the billions of dollars represented by the cell line.

In Hecht v Superior Court for Los Angeles County (1993) (California Court of Appeals), semen could be property for the purposes of being disposed of under a will because the man who had ejaculated it had had sufficient decision-making authority in relation to that semen. It was that authority that rendered it property. The effect of this was that his girlfriend could recover the semen and use it for the purpose for which it had been ejaculated-namely to inseminate her. (Similar cases in England, such as R v Human Fertilisation and Embryology Authority ex p Blood (1999) and Evans v Amicus Healthcare (2004), are best seen as cases about reproductive autonomy and specific questions of statutory construction).

Policy, rather than legal logic, is behind both these decisions. In Moore it was thought that a property analysis would do, on balance, more harm than good, and so it was rejected. In Hecht it would do more good than harm, and so it was adopted. In the English Court of Appeal case of Yearworth v North Bristol NHS Trust (2010), semen ejaculated for the purposes of conceiving children after chemotherapy for cancer was negligently destroyed. A wrong had clearly been done, but how should it be described? It was held that, although a statute restricted the use that the men could make of the semen, that restriction did not mean that they could not ‘have ownership’ of it for the purposes of a claim in negligence, and that accordingly ‘it follows a fortiori that the men had sufficient rights in relation to it as to render them capable of having been bailors of it’. Both ownership and bailment (looking after a chattel) imply the recognition in that semen of some sort of property.

So, in the US, England, and elsewhere, body parts and the products of bodies are regarded as property if that gives the right answer. What about trading in body parts, or things that my body produces? There’s a market for human blood, for instance. Can I turn myself into a blood farm, milking myself of blood for profit? Selling one kidney could go a long way towards paying off my mortgage, and could well save someone’s life. If my blood and my kidney are my property, why not? Indeed, why should the lawfulness of the sales turn on the arcane and, as we’ve seen, rather arbitrary question of whether the label ‘property’ should be applied to each? Even if my kidney isn’t property, and I have no right to possess it in the sense understood by land lawyers, I’ve still got much more right than anyone else to decide what happens to it. If I choose to wreck my kidneys by marinating them each night in gin, the law won’t stop me. Why should it stop me doing something financially sensible and socially useful? A prostitute in many jurisdictions can lawfully sell her body for sex. Why should she not sell her blood for the manufacture of life-saving blood products?

 

The knee-jerk ethical answer, of course, is ‘commodification’-an answer that begs endless questions. Yes, this is commodification, but so what? A proper answer perhaps has to deploy the language of human dignity. Many jurisdictions have prohibited commercial dealings in human organs and body products. The general international tone is heard in Article 21 of the Council of Europe’s Convention on Human Rights and Biomedicine (1997), which provides that: ‘The human body and its parts shall not, as such, give rise to financial gain.’

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