Is sectioning for a bed a violation of human rights?

The following guest blogpost was written by Ben Clubbs Coldron, a final year undergraduate in the Law School here at Nottingham:

A recent survey by the Royal College of Psychiatrists of junior doctors suggests that the practice of sectioning people (who would if asked agree to voluntary admission) to secure a bed in hospital may be more widespread than was previously thought. This post asks whether sectioning for a bed breaches domestic law and the patient’s human rights and if so whose responsibility it is to address this.

The survey asked junior doctors how they make decisions regarding detention of a patient in hospital under Part II of the Mental Health Act 1983 (MHA). The answers given revealed that a relatively important factor in the decision was the availability of beds in the relevant hospital. The results also indicated that patients are being sent home in the absence of a bed and some individuals may be being sectioned merely to secure a bed due to an insistence by some hospitals that before an allocation is made the patient should be detained under the MHA. The reduction of the pool of available resources associated with austerity measures presumably has heightened the need to prioritise. The label that detention or sectioning under the MHA represents is being used by doctors to effect the order of patients in these hierarchies; whether all the legal consequences of that deprivation of liberty are justified by medical necessity or not.
The survey questioned 576 junior doctors working in psychiatry. The junior doctors involved in the survey were not necessarily s.12 approved doctors (approved for the purposes of the MHA as having special experience in the diagnosis or treatment of mental disorder and authorised to recommend compulsory admission) and therefore although they will be involved in the clinical decision to detain a person under the act they must make the decision in conjunction with an approved doctor.

More than a quarter of the survey sample was comprised of practitioners in the London area so the results cannot be confidently generalised given the fact that there is far greater demand for beds in London and therefore it is a context in which such pressures would likely be more operative on medical decisions. The answers may nevertheless indicate in an intuitive sense how doctors approach these important legal decisions across the country. The results highlight some of the adverse effects that poor resourcing of NHS institutions can have, and demonstrate the potential to use legal tests for deprivation of liberty to label patients as high priority thereby getting the treatment that they need even if detention under the MHA is far more restrictive of the persons liberty than strictly necessary.

The results of the survey showed that 37% believed that a colleague’s decision to section a patient under the MHA had been influenced by the likelihood of finding a bed. 18% felt that securing a bed was operative on their own decision making in this context. This discrepancy may be explained by the fact that the sample of doctors were probably not all s.12 approved. Other findings included 25% saying a bed manager had told them that unless their patient had been sectioned they would not get a bed and just under 30% claiming to have sent a critically-ill patient home because no bed could be found.

This shows some doctors using detention under the MHA to secure patients a bed due to hospitals insistence on this label before allocation. According to law this should be an irrelevant factor. For doctors this strategy secures or guarantees a bed for a patient who would benefit greatly from it and therefore is a useful method to secure their patients welfare. Doctors appear to be saying that the legal criteria are met in order to demonstrate the medical necessity for a bed. This highlights two potential misunderstandings, one concerning the relationship between the Winterwerp criteria and the criteria for admission under the MHA 1983 and the other concerning the way the decision is to be made.

The first misunderstanding concerns medical necessity. The decision in Winterwerp [which was hugely influential upon the drafting of the MHA 1983] required that all compulsory admission and treatment be based on a procedure prescribed by law and that the determination of mental disorder be based upon ‘objective medical expertise’. Deprivation of liberty of a person of ‘unsound mind’ is justified only if such a course of action is lawful and proportionate. The criteria for admission in the MHA require an objective medical asssessment of the mental disorder as well as two additional criteria. Detention must be necessary (cannot be provided in a less restrictive way) for the protection of the patient or the public. Winterwerp requires that the medical necessity is objectively observed in order to meet the legal criteria, but the doctors appear to be applying the legal criteria to demonstrate medical necessity. This is precisely the opposite of what is required. Legal compulsion is a poor proxy for the severity of a patient’s illness and therefore it is wholly inappropriate to administer the test in this way. Even seriously ill patients may have good insight into their need for inpatient care and should not be deprived of access to inpatient care on the basis that they do not meet an arbitrary criteria for admission.

To detain a person in hospital for mental health care it must first be lawful. The ECtHR jurisprudence demonstrates that the lawfulness of a hospital detaining a patient depends on whether it is proportionate (Gatt v Malta) or arbitrary (Bazano v France). It must also be in accordance with domestic law which prescribes the action reasonably precisely and makes the law publicly accessible (Silver v UK).

As the doctors, in making Part II MHA 1983 decisions, are taking into account factors not included in the MHA criteria the decision is not in compliance with domestic law and therefore is not lawful under Silver v UK. Secondly, it is claimed to be made on the grounds of necessity but the real reason is in fact to secure a bed. It therefore involves detaining people for treatment or assessment under false pretence which is arbitrary. Lastly the legal test for deprivation of liberty in ECHR and domestic law is that the person has a mental disorder to the nature or degree making it a medical necessity that he be treated in hospital (Winterwerp v Netherlands). Where a person is sectioned for the purpose of securing a bed merely because a bed is desirable the benefit the person may gain does not mean it is strictly necessary. It is therefore a disproportionate interference with art.5 rights. Sectioning people in order to secure a person a bed in hospital is a violation of domestic law. It is also a breach of the ECHR because it is a deprivation of liberty which is not justified under art.5(1)(e) of the ECHR.

The doctors making these decisions are in a difficult position as there are fewer beds than there are patients who need (or would benefit from) them. In some ways it is very rational for doctors to use these powerful legal labels in order to promote their patients wellbeing. Therefore it could be argued on the doctor’s behalf that an insistence by the ECtHR that the legal test be administered strictly may in fact compromise the care of their patients.

There are positive obligations which support this argument under art.3 of the ECHR concerning the provision of adequate medical care to prisoners (Hurtado v Switzerland) and even specialist psychiatric care in prisons (Keenan v UK) as the state, in depriving people of their liberty, takes on responsibility and additional obligations towards them. These positive obligations are however limited by the fear of detrimental economic consequence. The spectre of health and benefits tourism looms large in the judge’s minds (see D v UK and N v UK). An individual detained in hospital under the MHA would also attract these positive obligations (Rabone v Pennine Care NHS Foundation Trust) as the state institution has taken on responsibilities and obligations in detaining the individual. However it is not clear that this extend to someone with similar need for treatment but who is not yet detained? It would be strange if the ECtHR interpreted art.3 as not creating positive duties to treat individuals who do not meet the threshold for detention. It must be inconsistent with human rights for hospitals to say access to healthcare is governed by deprivation of liberty. Only the acuteness of the patients’ need should determine the obligations a hospital owes a patient under art.3 as it is the seriousness of the consequences of a failure to provide care which will bring the individual under the scope of that article and this is unlikely to be affected by legal status.
Under the current ECtHR interpretation of art.3 there is probably no a positive duty to provide proper medical care to individuals that do not meet the Winterwerp test and are therefore detained. In N v UK and D v UK Strasbourg held that deportation of illegal immigrants who had AIDs and required intensive treatment to a country where they would almost certainly die of their ailments did not violate art.3 (it is a possibility under Soering v UK and Chahal v UK that where a state deports people to other country where breaches of the convention are likely to occur it will amount to a violation by the deporting country). Even in this case where deportation was effectively a death sentence the protection of the national economy from poor and desperate ‘benefit and health tourists’ was deemed more important that these individual’s lives. In light of this type of interpretation it’s a wonder we still deem art.3 an absolute right.

A final issue is that perhaps the practice which the survey indicates in the making of these decisions may be an art.14 ECHR violation as well as a violation of the Convention of the Rights of Persons with Disabilities. The CRPD & ECHR art.14 prohibit discrimination. There is a potential for discrimination between mentally disabled individuals and the non-disabled community in that those with mental disabilities are less able to access adequate medical care. There may also be discrimination between different levels and types of disability as it is arbitrary to treat individuals with different mental disabilities, but relatively similar needs, so differently merely on the basis of a legal label misleadingly applied.

The real illegality perhaps lies in the hospital policy of refusing beds to individuals who would benefit from inpatient care but are not subject to legal compulsion. Approved mental health practitioners, who actually have legal duties (s.13 MHA) to make an application to admit a patient to hospital, are reporting that these types of policies are being implemented and this must stop. It compromises those patients care and places patients in arbitrary hierarchies of need. The reasons for doctors recommending inpatient care must be examined too because the desire of doctors to get patients into hospital may be driven by the fact that community care is not and cannot adequately deliver appropriate care to certain patients.

It could be argued that rather than blindly focussing on patient’s procedural rights under art.5 ECHR the court should seek to protect the substantive rights of patients under art.3 thereby sanctioning the strategy of doctors using this legal test to allow patients to access treatment. However it is clearly not desirable for doctors to be using part II of the MHA in such a disingenuous way. The solution will probably require more resources being provided and changes in hospital policy in allocation of beds, perhaps encouraged by adaptation of the s.3 interpretation in relation to medical care which creates rights and positive obligations for mentally disordered people to access treatment they need. It should not depend entirely on whether the patient is detained or not. Doctors also need to understand the legal consequences of the decisions they make but it is probably the policy of hospitals that has forced doctors to adapt their approach to the legal test for detention in order to promote patient welfare. Hospitals therefore need to take their duty towards sick patients seriously and make a change in policy possible by either bolstering care in the community to make up for the shortfall in beds or simply provide more beds.

Why the Human Dignity Trust should be recognised as a charity…

OK this is not about mental health law. And I should really wait and see what the Charity Tribunal says. But I was so cross at this comment piece from Geoffrey Robertson which I broadly agree with but is still full of errors (Scientology is not a religion) that I had to do some thinking. And since there was no chance the Guardian were going to publish 2 pieces agreeing that the Human Dignity Trust should be recognised as a charity I have put this one up here for safekeeping.

It is also an odd way of rewarding myself for marking a huge number of exam papers on Trusts over the last week many of which tackled a difficult essay question on charities law.

The Human Dignity Trust does vital work challenging the criminalisation of homosexuality around the world. To be criminalised on the basis of one’s sexuality activity inherently undermines dignity and the related human rights to privacy, equality and freedom from cruel, inhuman and degrading treatment.

But it is not able to operate as a charity so unlike many religious organisations, private schools, private hospitals and animal sanctuaries the Human Dignity Trust receives none of the tax advantages of charitable status. To be recognised for charitable status an organisation must demonstrate that it was established for one of the charitable purposes listed in s.3 Charities Act 2011 and that it exists to benefit the public.

So today’s hearing at the Charity Tribunal could not be more important, to the Trust itself, and many other campaigning groups which want to demonstrate that their work benefits the public.

At issue are two key questions in charity law, one old and one new. The old question is the extent to which a charity which solely or mainly exists to promote change in the law either in the UK or in other countries can be recognised as performing a public benefit? The new question is how we define ‘the advancement of human rights’ as a charitable purpose.

The new question is easy. The Human Dignity Trust have stated that their definition of human rights is taken from the Universal Declaration of Human Rights and other relevant international and regional conventions. The Charity Commission quite reasonably pointed out that there is no freestanding right to ‘human dignity’ in international human rights law. A standard philosophical construction of the relationship between human dignity and human rights is that dignity is the end to which rights pertain. This creates a Catch-22. A charity to promote human dignity is not advancing specific human rights. The Human Dignity Trust cannot possibly specify in advance which human rights provisions will be found by regional or domestic courts to require the decriminalisation of homosexuality because they have not taken the necessary strategic litigation yet. On this new question the Charity Commission’s response to the HDT application is ambiguous [see paras 21-2] and needs to be clearer because this issue deserves to be clarified. If a charity’s purpose is to advance human rights must they specify the actual justiciable human rights instruments they are going to advance?

But this still leaves a larger question of whether litigating to change the law can be a charitable activity at all.

This is much harder. In 2013 when the HDT applied for charitable status the Charities Commission gave a predictable but disappointing answer. In a 1981 case called McGovern v Attorney-General the High Court ruled that a small organisation set up to conduct research into human rights to advise Amnesty International could not be considered charitable. Slade LJ was concerned that lobbying to change the law was a political purpose and as such the courts could not know whether or when the charity was actually performing its duties. Since the enforcement of charity law is done by external regulators it is crucial that they can look at the organisation’s activities and consistently observe whether it is both consistent with its purpose and continuing to benefit the public. Courts and regulators are poorly placed to evaluate whether a programme of litigation is either charitable or beneficial to the public since they assume that the law as it stands is correct. Asking a court whether a planned programme of litigation is beneficial to the public is in effect also asking what the outcome of the litigation should be.

In 2006 Parliament made matters easier for the Charity Commission by telling it that the advancement of human rights is a charitable purpose. The regulator has been told that activities to advance this end should be looked upon favourably. But it still leaves a problem if the activity is pursuing litigation and not other human rights promotion work such as awareness-raising or working with survivors of human rights abuses.

Reading the case again I was struck by how different the world of human rights litigation looked from the perspective of 1981. In 1981 Slade LJ was concerned that an English court could not know if pursuing litigation to oppose the death penalty for adultery in a state governed by Islamic law would advance human rights because the judge would know too little of local conditions. After 14 years of the Human Rights Act and assessments of the practices of courts in other territories for numerous reasons this concern looks weirdly parochial. Any English judge today would feel competent to assess that being stoned to death for adultery abuses one’s human rights. The second question is whether litigation to challenge the local practice will achieve anything. But if the issue is whether litigation may be futile then the test being applied is ‘risk of not achieving a benefit’ and if we start applying that to research, religion or amateur sport (especially amateur sport) where will we be?

By definition human rights abuses occur when states allow laws to persist or create new laws which authorise the abuse of human rights – the performance of the death penalty, the use of torture to extract information in a state of emergency, the continued use of plenary guardianship and isolated social care institutions to legally deprive disabled people of their liberty and legal and political status… Strategic litigation is a valuable tool in the arsenal for human rights activists. But strategic litigation is also a practice carried out by big companies wanting to challenge legislation which affects their commercial interests and by campaign groups wanting to promote idiosyncratic personal ends. In the first case it is not clear that the litigation should be exempt from tax and in the second example it is not clear that taking it will benefit the public. So what makes the Human Dignity Trust different?

The answer must lie in the second half of the statutory provision which tells us that it is a charitable purpose to advance human rights. It goes on to state that it is a charitable purpose to promote conflict resolution, reconciliation and religious and racial harmony or equality and diversity. Human rights belong with a group of charitable purposes which make society more harmonious and less divisive.

The main thrust of McGovern v Attorney-General was correct. It would be dangerous to establish a precedent that campaigning to change the law alone is charitable. At the same time advancing human rights means advancing legal change. And Parliament has confirmed twice in the last decade that advancing human rights is a charitable purpose.

The distinction is that human rights belong to all of us. They are general and not particular. Organisations, like the Human Dignity Trust do not seek to divide society by promoting specific personal or commercial interests. They want to lawfully promote the rights of all people to enjoy sexual freedom.

This is a distinction which the Charities Commission can observe and can enforce and in this respect the judgment in McGovern has clearly been superceded both by statute and by changing public attitudes. The Charities Commission is quite capable of asking whether the litigation a charity wishes to pursue will genuinely bring about an advance in the human rights of those affected. And to know whether pursuing this litigation is likely to benefit the public the Charities Commission can consider the size of the sector of the public whose rights are being promoted, the likely impact on others of success and the impact of the human rights affected.

There will, inevitably, be problematic test cases at the margins if the Human Dignity Trust succeed. Most will concern domestic campaign groups which want to redefine their goals as relating to the promotion of human rights. And perhaps more of these groups should be given charitable status than enjoy it currently.

Freedom of religion, the Mental Health Act and Mental Capacity Act

Yes yes yes I know we need to do a blog post on Cheshire West. It is in the pipeline.

In the meantime I’m doing another blogpost on a judgment which has not even been published yet. The facts are in the public domain and it extends an issue we already addressed in this blog a few weeks ago – the interfaces between the Mental Health Act, Mental Capacity Act and the right to freedom of religion under Article 9 ECHR.

J is 23 years old and currently detained under the Mental Health Act. He will cut himself severely if not physically restrained and these deep cuts will cause life-threatening bleeding which may only be treatable with a blood transfusion. J is a Jehovah’s Witness and and has drawn up an advance directive specifying that he did not want to receive a blood transfusion under any circumstances even if a failure to treat might result in his death.

The advance directive is valid for the purposes of the Mental Capacity Act. It was signed and witnessed and J had mental capacity at the time it was drawn up. But advance directives do not apply to treatment administered under the Mental Health Act.

Treatment given to J to treat the effects of his self-harm will be lawful treatment under s.63 of the Mental Health Act. But J’s doctors applied to the Court of Protection for a declaration regarding the legality of their treatment because given he currently has capacity to refuse treatment and has made an advance directive it would be unethical to override these wishes and perform a blood transfusion upon him.

In a sense the advance directive is a red herring. It is useful future evidence that J’s religious convictions are not a current whim but apart from that even if J were not detained under the MHA it would only be relevant if J was incapable of making a capacitous refusal of a blood transfusion. In fact two hearings have found that J does have the capacity to make decisions about his treatment. The point is unusually well-established in his case.

Mostyn J. has held that J’s doctors have the discretion not to perform a blood transfusion should one become necessary in J’s case. His reasons have yet to be published but will be interesting to see.

At issue here is the extent to which a patient detained under the MHA enjoys the same right to freedom of religion as any other patient. Interestingly, the jurisprudence of the European Court of Human Rights as it applies to Jehovah’s Witnesses is not particularly helpful. The most useful case is a chamber judgment from 2010 concerning the total suppression of the Jehovah’s Witness faith in Russia. One justification put forward for this by the Russian authorities was that in promoting the carrying of ‘No Blood’ cards by followers the Jehovah’s Witness faith promoted suicide. The ECtHR held that provided the decision to carry a ‘No Blood’ card was capacitous and not the result of an overborne will encouraging followers to carry these cards could be consistent with public policy.

But domestic jurisdictions have already gone much further in advancing the right of Jehovah’s Witnesses to protect their religious convictions even if this places them in danger and the caselaw the ECtHR cited was of necessity drawn from Ontario, England, Spain, South Africa and the USA.

And since the passing of the MCA a number of cases have upheld the position in English law that the advance directives of Jehovah’s Witnesses which specify the refusal of blood products should usually be honoured. Whatever the ethical questions this raises the legal point is well-established in English law. A refusal by Jehovah’s Witness of a life-saving blood transfusion should be respected unless there are circumstances that put healthcare stuff on notice that it may not have been made voluntarily.

So J is in an extraordinary position. His doctors confirm that he has the mental capacity to refuse treatment. If he was at home and self-harmed to the extent that he has and were taken to an A&E Department the position that his current refusal (were he able to make one) or his advance directive should be respected would be uncontroversial. It is only the fact of his detention under the Mental Health Act which makes compulsory treatment possible at all. Reports on the outcome of Mostyn J’s judgment state that he held that clinicians can leave J untreated if he self-harms to the point of endangering himself again. This seems consistent with the only legal position that makes any sense. Patients detained under the Mental Health Act must, at a minimum, enjoy the same right to freedom of religion as anyone else. But how he reached that conclusion and distinguished J’s freedom to decide to harm himself and refuse treatment without interference from the position of other patients who self-harm will be critical. Parliament in 2005 clearly did not intend that patients in psychiatric detention should be able to use the provisions of the Mental Capacity Act to protect their interest because they explicitly excluded detention under the MHA from the ambit of the MCA.

J’s case is similar to a number of other cases which appear to straddle the operations of the MHA and MCA and also involve the protection of human rights of detained people. Cases like SB, AA, E and J raise huge questions about the viability of maintaining both a Mental Health Act and Mental Capacity Act and in effect two jurisdictions to safeguard the human rights of people with mental disorders.

The only major proposal around for improving this state of affairs is George Szmukler and John Dawson’s proposal for a Fusion Law. I am personally hugely sceptical about the likelihood of improving the transparency and consistency or challenge-ability (is that a word?) of professional decision-making about people with mental disorders if the threshold used is whether they have the mental capacity to make a decision. So I am a fusion sceptic.

But cases like J’s provide an opportunity to watch and reflect. If Mostyn J offers robust guidance on how clinicians should make decisions about protecting J’s freedom of religion whilst working within the MHA then the case for fusion is weakened. But a poor judgment which leaves clinicians less clear how to decide the next difficult set of facts reduces the case for maintaining the status quo.

Taking wishes and feelings seriously – Easy Read version

This is an easy read version of an article about people who cannot make a decision. You can read the original article in the Journal of Social Welfare and Family Law.

Part 1: When do we have to make decisions for other people?
The law in England says sometimes people cannot make decisions for themselves. Sometimes people cannot make decisions because they do not understand things. Sometimes people who are very sad or very angry cannot make decisions because their feelings are so strong. Sometimes people cannot make decisions because they cannot remember what they need to know to make decisions.

When we cannot make a decision the law says other people can make the decision for us. Usually this will be someone we know well and who knows about the decision too. If someone does not understand whether they need medicine a doctor may make the decision for them. The doctor must make a decision that is in the person’s best interests.

The law says that in deciding what is in someone’s best interests the person making the decision must think about what the other person would like. If the doctor gives someone medicine she must think about what the person likes. For example some people do not like tablets. The doctor could give them a medicine which comes as a syrup instead.

Part 2: What is this article about?
Sometimes we do not know what is in someone’s best interests. When this happens the person who has to make the decision can ask a special Court to tell them. This court is called the Court of Protection.

Judges in the Court of Protection make decisions for people who cannot make a decision for themselves. I wanted to know how the judges think about what people who cannot make decisions would like.

I looked at lots of decisions that the judges had made. These decisions are called cases. Cases are very important. Judges have to look at cases that have already been decided when they make decisions. This is to make sure we treat cases that are the same in the same way.

In most of the cases the judges do not talk about what the person who cannot make a decision would like.

There are some cases where the judge does look at what the person who cannot make a decision would like.

I looked at those cases carefully. Continue reading

Making Decisions for Somone Else: The Relevance of their Views

The following post is a guest blog by Amanda Keeling and re-blogged from the blog of the Institute for Mental Health.

The Mental Capacity Act 2005 provides a framework for making a decision for an individual who is found to lack capacity to make it him or herself. Where an individual lacks capacity to make a decision, a decision must then be made in their best interests under s.4 of the Act. Section 4(6) provides that, when making a decision in someone else’s best interests, account must be taken of any past or present wishes or feelings, beliefs or values that would have influenced their decision, and any other factors they would have been likely to have taken into account if they had capacity.

Since the MCA came into force (and indeed, prior to the MCA as well), it has long been a subject of debate as to the weight that an individual’s wishes and beliefs carry in this process. Munby J (as he then was) gave two judgments in the years just after the MCA came into force which dealt with this factor, the first being Re MM; Local Authority X v MM (by the Official Solicitor) and KM [2007] EWHC 2003 (Fam), at paras [121]-[124], the second being ITW v Z & Ors [2009] EWHC 2525 (Fam), which restates Re MM and adds several elements. Re MM noted that P’s wishes and feelings should always be a significant factors, but were not necessarily determinative. He pointed to the need to consider the degree of P’s capacity when expressing wishes and feelings, and the impact of not giving effect to them. ITW v Z and others added the caution that the relevance of wishes and feelings will be case by case, and that additional factors to consider are the strength and consistency of those views over time, how rational, sensible, responsible and pragmatic the views were, and the possibility of actually implementing the action necessary to respect the views.

Munby J was, in that case, specifically dealing with P’s current wishes, when he/she lacks capacity, but those factors are equally applicable to thinking about the relevance of past wishes and beliefs; in particular, where someone has made a strong statement refusing a particular treatment, and subsequently loses capacity, what weight should that statement be given?

Sections 24-26 of the MCA outline the process of ‘advance decisions’ – these are decisions which are binding on medical professionals with regards to refusal of treatment where the issue arises once P has lost capacity. For advance decisions to be binding on professionals, they must be ‘valid and applicable’ to the circumstances, and must be signed by both P (or P’s representative) and a witness – any other written statement is simply something to be taken into account as part of s.4(6).

However, a recent decision in the Court of Protection, published a few weeks ago, suggests that spoken statement can have a similar effect as advance decisions, although presumably they are not legally binding in the same way.

Newcastle Upon Tyne Hospital Trust v LM [2014] EWHC 454 (COP) centred on the time-honoured issue in medical law of the giving of blood products to Jehovah’s Witnesses. LM had been admitted to hospital in early February, suffering from a duodenal ulcer, which was causing dangerously low haemoglobin levels. During the next few days, LM met with several medical professionals to discuss her treatment options, and she was very clear that she did not wish to accept blood products. She was also seen by a psychiatrist, due to her presenting with confusion on arrival, and a history of depression and schizophrenia. She was found by the psychiatrist to be well, and the physical medical professionals she spoke with felt that she understood the implications of refusing blood products and had capacity to make the decision.

Subsequently, LM’s condition deteriorated significantly, she required intubation, ventilation and sedation, and clearly lacked capacity to make any further decisions. Her anaemia became profound and life-threatening, and it was clear that a blood transfusion was really her only hope of survival, but that even then, her condition may not have improved. In addition to her statements during the preceding days, the clinical team had been aided by information from members of LM’s congregation, who affirmed the strength of her belief, and her views on the issues of blood products, which had been consistent since the 1970s. The medical team decided that her decision to refuse blood products should be respected, and sought a judgment from the Court of Protection affirming this decision, given its life-threatening nature.

Mr Justice Jackson, handing down his judgment sadly after LM had passed away, agreed with the decisions made by the medical staff. He considered that LM’s decision was ‘valid and applicable’, and it was correct to respect it. He considered carefully the issue of her capacity at the time the decision was made, and the long-held and consistent nature of her belief on the issue, and concluded that her refusal of consent ‘was applicable to her later more serious condition. There was no difference in kind and I am satisfied that she intended her decision to be effective in the circumstances that subsequently arose’ (para 21).

This is not a decision being made within the framework of s.4(6), but rather a clear spoken refusal of consent being treated with the same respect as a written, valid advance decision. Although not clear from the judgment, one presumes that such spoken words are not binding on professionals in the same way as a valid advance decision under ss. 24-26 of the MCA are, but it does give much more weight to such clearly stated advance statements. This is to be applauded – LM was making a decision about the specific treatment relevant to her condition with capacity, and very close to the time when the treatment actually needed to be given. Further, there was clear evidence that this decision was not being taken on a ‘whim’, but a long-held belief; why should it not have been respected, simply because it was not written in a specific format?

However, Jackson J does note that, had there not been such a clear, valid and applicable decision, and the issue had to be decided under best interests, he ’would have granted the declaration sought on the basis that to order a transfusion would not have been in her best interests. Applying s.4(6) in relation to the specific issue of blood transfusion, her wishes and feelings and her long-standing beliefs and values carried determinative weight. It is also of relevance that a transfusion might not have been effective to save her life’ (para 23, emphasis added).

We are now in a position where, when refusal of consent stems from clearly stated and long-held beliefs, it seems to have a ‘determinative weight’ when considering best interests. Further, where that refusal is made clearly, with capacity, with regards to specific treatment, it will be treated like a valid advance decision. However, there are still some questions; Jackson J adds in the point that it is ‘also of relevance that a transfusion might not have been effective to save her life’, but we are left wondering what the decision of the court might have been had it been a more certainly life-saving procedure. There is also the issue that this is an issue of religious conviction – would a long-held belief founded on other grounds be given the same respect?

I teach tort law to first year law students, and coincidentally last week our tutorial was on trespass and issues of consent and capacity, and even more coincidentally, the problem question we dealt with concerned the refusal of consent for a blood transfusion. However, the woman in the problem question was refusing the transfusion due to a fear of contracting CJD, despite the negligible risk of this happening. When we were discussing ‘Grace’s’ refusal of consent for the blood transfusion (claiming, somewhat dramatically, ‘I’d rather die than contract CJD!’), my classes were often split as to what they thought the doctors should do with regards to respecting that statement once Grace lost consciousness and the giving of a transfusion became a matter of life or death.

Some felt that such a clear decision should be respected, while others questioned the validity of this decision, as they were concerned she did not truly understand the risk. We explored the issue a little more, and considered the circumstances where such a statement might be respected – perhaps she had been a vet during the 1990s and seen many cows suffering with BSE, perhaps she had been a research scientist. I asked what if she had simply developed something of an obsession, and done a lot of research, and decided that death was better than the risk, however small, of living with and dying from CJD. On this, the classes were often split again, and I certainly would be interested in the view of a court. Would a deeply held belief such as this be respected, or would it be considered, in the words of Munby J in ITW v Z and others as not ‘rational, sensible, responsible or pragmatic’? That is a difficult question to answer, and certainly raises questions about the prioritisation of religious belief over others.

Connor Sparrowhawk Blog Post – Easy read version

Update: You can read this post with pictures here: Connor Sparrowhawk Easy Read Blog Post. This link will open a pdf file. The picture version was prepared by a charity called Change. Change is run by people with learning disabilities.

A report has been published about Connor Sparrowhawk who died last year. You can get a copy of the report by going to this website: http://www.southernhealth.nhs.uk/news/report-into-death-sparrowhawk/.

You can read about Connor’s life at this website: http://mydaftlife.wordpress.com/

Connor Sparrowhawk had learning disabilities. Connor also had epilepsy. He had to go into hospital. In hospital he had an epileptic seizure in the bath. Connor died because of the seizure.

After Connor died 2 people investigated what happened. They wrote a report. The report said staff should have watched Connor carefully.

Connor needed to be watched to keep him safe. If the staff at hospital had watched Connor he might not have died.

I want to know if the hospital broke the law. I want to know about Connor’s human rights.

Connor had a right to life. The hospital had to protect Connor’s right to life. If someone dies at the hospital the hospital has to find out why.

The report helps to protect the lives of other people with learning disabilities. It tells the hospital how to care for people with epilepsy.

But I want to know if the hospital should pay some money to Connor’s family to say sorry. This money is called damages.

Sometimes hospitals need to pay damages to say sorry. Sometimes hospitals do not. It depends on whether they knew Connor was very likely to die.

If the hospital knew Connor was very likely to die and they did not keep him safe then they should pay damages.

The report does not tell us if the hospital knew that Connor was very likely to die. If Connor’s family want damages they might go to court. Or they might not want to go to court.

I think the law here is causing problems. Sometimes hospitals are scared to talk to families about how people died and what went wrong. They may be scared that if they talk about what happened they will be saying they knew the person was very likely to die and they did not keep him safe.

This makes it hard for families to find out why someone died.

When someone dies their families are terribly sad. If they do not know why the person died they feel angry and frightened too. I think we should try and make the law clearer so hospitals and families can talk about why someone has died.