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.

The death of Connor Sparrowhawk and liability of public authorities

Connor Sparrowhawk died in an assessment and treatment centre in Oxford in July 2013 after suffering an epileptic seizure whilst he took a bath. Connor had been diagnosed as having epilepsy for two years, was receiving medication for his condition and there were many signs in the weeks preceding his death that his seizure activity might have increased.

An independent report commissioned by Southern Healthcare NHS Trust which runs the centre where Connor was a patient has just been published. It has found that Connor’s death could have been prevented if staff had recognised that his epilepsy created risks around taking baths and conducted a proper risk assessment.

This post is not about the report. Instead it is a reflection about the current state of the law on the liabilities of state institutions responsible for detaining people who subsequently die in their care. Continue reading

When the Political is Personal Part 3

Am I over-qualified or under-qualified to comment on cases concerning mad women who might become pregnant. They affect me deeply for reasons that should now be obvious. But is this affective awareness a qualification? It is not self-evident that lived experience of disability makes me better able to criticise the current operation of the law than my other attributes – I was an academic lawyer long before I developed epilepsy. Continue reading

When the Personal is Political Part 2

Why is the personal political…

There have been some more caesarean section judgments which I will not link to for reasons which I have outlined in Part 1. You can find press commentary on them if you want to.

But this post is about my own experiences of mental disorder and how this would affect childbirth. And the reason I have decided to write something so self-indulgent is because I can, I have the autonomy to disclose my own story without adversely affecting the privacy interests of anyone else. Continue reading

When the Political is Personal Part 1

Paradoxically this is a blogpost about a group of cases which I do not want to talk about. So it should be short. Instead I have had to break these posts into three because as I started to explore this interlinked set of topics I realised they raised more issues than I had imagined possible.

The cases which triggered these reflections are those concerning substitute decisions made on behalf of women experiencing mental disorders during childbirth. Continue reading