The Human Rights Act: Sometimes it’s about everyday life and death decisions

By Natalie Therfall and Sanchita Hosali at the British Institute of Human Rights

 

At the end of our lives, 68% of us will die in hospital. Of that percentage, 80% will die with ‘Do Not Resuscitate’ (DNR) orders in place. These are the sobering figures Lord Dyson quoted when delivering today’s Court of Appeal judgement which confirmed that a person’s basic human rights can be breached when a DNR order is placed on a patient file without consultation.

The Case

Janet Tracey from Family Handout

Janet Tracey, photo from Family Handout

The case (Tracey v Cambridge University Hospitals NHS Trust) was about Janet Tracey, a care home manager, who was seriously ill with terminal cancer and had to be ventilated following injuries sustained in a car crash. In the course of Mrs Tracey’s treatment, when she was about to be removed from artificial ventilation, a DNR order was placed on her records. The removal of the ventilator was successful and Mrs Tracey was able to breathe unassisted. Later on Mrs Tracey’s daughter looked up what was meant by the term ‘DNR’ which she had seen written on her mother’s records. She was distressed to discover that had her mother’s heart stopped (cardiac arrest) during her treatment, she would not have been resuscitated. At the request of the family, the hospital removed the DNR order. Janet, her family and medical staff were then able to discuss end of life matters, and subsequently decided that they would place a DNR order on file. A little while later, Mrs Tracey died in hospital.

The family were concerned that the first DNR had appeared on Mrs Tracey’s records without any consultation. They asked the courts to decide whether this breached her right to respect for private and family life which is protected by the Human Rights Act (Article 8).

The Importance of the Judgment

The first judge who heard the case believed the family’s claim that the DNR order placed without permission violated Mrs Tracey’s right to respect for private and family life was academic because the order had been removed before it had done any harm. Lord Dyson in the Court of Appeal disagreed. He noted that the fact Mrs Tracey’s heart had not stopped while the DNR order was on file was fortuitous, and:

fortuity cannot bear on the question whether Mrs Tracey was sufficiently involved in the decision-making process which led to the imposition of the first notice.”

In other words, Mrs Tracey was lucky, and being lucky does not mean the decision to place the first DNR on file respected Mrs Tracey’s human rights. In the future others who may have been subject to DNR orders without consultation may not have been so lucky. The Court also said it was not enough that the DNR order was cancelled when the family raised concerns. Mrs Tracey’s human rights were engaged by the underlying policy that led to a decision being made without consulting her. It was not the refusal to resuscitate that was being challenged, but the policy that led to decision being made without involving the Tracey family.

Why is this about human rights?

The right to respect for private and family life applies to a range of decisions and issues that affect people’s private life. Crucially, this can include decisions at the end of life. Lord Dyson states in the case:

A decision as to how to pass the closing days and moments of one’s life and how one manages one’s death touches in the most immediate and obvious way a patient’s personal autonomy, integrity, dignity and quality of life.”

Clearly, the right to respect for private and family life was engaged in Mrs Tracey’s case (and other end of life decisions) and should be a vital part of the decision making process.

When deciding whether Mrs Tracey’s human rights had been breached the judge said it is clear from previous decisions in the European Court of Human Rights that the degree of patient involvement in end of life decisions required by Article 8 will depend on the particular circumstances of the case. But this right also carries with it a presumption of patient involvement, and there must be very convincing reasons for not involving the patient.

What convincing reasons?

There is a principle in common law that a patient cannot force a doctor to give them a particular treatment, including resuscitation. Lord Dyson explains this does not mean the patient is not entitled to know about the doctor’s decision, to discuss it with them and if appropriate, request a second opinion.

Importantly the Court also said that just because a patient may be distressed by a discussion about non-resuscitation, as Mrs Tracey was, does not mean they should be excluded from the decision. The doctor may only exclude a person from the decision process if “he or she thinks that the patient will be distressed by being consulted and that that distress might cause the patient harm”.

The Outcome of the Case

By the time the case was heard in the Court of Appeal, the hospital had rewritten the policy regarding DNR decisions. The Court notes that the new policy respects the Article 8 rights of patients by involving them in decisions where doctors think a DNR order is necessary. However, the previous policy which had led to a DNR order being placed on Mrs Tracey’s records without consultation had breached her human rights under Article 8.

Beyond the case – the everyday impact

The right to respect for private and family life is not absolute. It is a qualified right, which means officials can restrict it when there is a law in place to allow such a restriction and when it meets one of the aims set out in the Human Rights Act, e.g. to protect the rights of others. In any event, any restriction of the right must always be proportionate. This means all alternatives should be considered, and the decision maker should not simply jump straight to the most restrictive option.

Following Mrs Tracey’s case, when a doctor assesses whether discussing a DNR order with a patient will distress them enough to cause “physical or psychological harm”, they will have to balance this harm against the potential harm to the patient’s rights if they do not include them in the decision.

Sadly at the British Institute of Human Rights we know that MRs Tracey’s case is not a one-off. We work extensively in the health and social care sector, both with doctors and nurses and advocates supporting patients and families. The issue of DNR orders being placed on people’s files without consultation is something we hear all too frequently.

In one instance a 51 year old man with Down’s syndrome and dementia had a DNR order put on his file without him or his family being consulted. The reasons given on the form were listed as: ‘Down’s syndrome, unable to swallow… bed bound, learning difficulties’. He and his family argued that this was discrimination and that it breached his right to life under Article 2. The case was settled out of court and the NHS Trust apologised.

In another instance a worker for an advocacy group we’ve supported visited her client, an older man with dementia, on the hospital ward. She found a DNR order on his file and when she asked staff about this was she was told that everyone on the ward had a DNR automatically. The client was not aware of the DNR. However his advocate believed he had capacity to take the information on board, as well as having two daughters who had visited but were not consulted or informed. The advocate challenged the blanket use of the DNR orders with staff, explaining that she thought this raised serious human rights issues, especially the right to life not to be discriminated against. The DNR was withdrawn.

Putting human rights into practice

Clearly human rights need to be part of the decisions made every-day by staff in health and social care. A human rights approach helps staff to do this, empowering them to see the law as not merely a compliance issue for lawyers but part of their everyday practice. BIHR’s new resource The Difference It Makes: Putting Human Rights at the Heart of Health and Social Care is designed to help practitioners do this, using a range of real-life stories.

Following Mrs Tracey’s case all professionals involved in DNR decisions need to be aware of their obligations under the Human Rights Act to involve patients in these decisions. It may also be necessary for NHS Trusts and organisations to review their policies on making of DNR decisions to ensure people’s human rights are being respected. This, after all should be at the heart of our health care:

 

NHS Constitution Principle 1: The NHS provides a comprehensive service, available to all… It has a duty to each and every individual that it serves and must respecttheir human rights”

 

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As a small charity we rely on the support of those who care about human rights being respected, protected and fulfilled in the UK. Your Tweet could help us to win this competition!

 

Carers Week 2014: Human rights inside the courts and everyday advocacy

By Sanchita Hosali and Natalie Therfall at the British Institute of Human Rights

 

This Carers’ Week (9-13 June) we take a look at some important court judgments affirming the human rights of carer givers and care receivers alike. These judgments highlight the role of the Human Rights Act both in challenging poor decisions and its use in the decision making process. But remember it’s not all about the courts, BIHR’s Your Human Rights: A Pocket Guide for Carers is a handy resource to help people in their day-to-day interactions with public services, outlined at the end of this blog.

When the local authority becomes involved in care at home

There have been a number of cases where the proper procedures for altering care arrangements has not been followed. Although this may seem like a box ticking exercise, the result of such procedural failures has been to separate families. In one case a family carer had not been informed where their relative has been taken. The Human Rights Act has important role in such cases, empowering carers to hold services to account when officials have overstepped the mark.

In RR v Milton Keynes Council, an 81 year old woman with dementia was removed from her home without warning and without authorisation. Her son was not informed where she had been taken and their contact was restricted. The court roundly criticised the conduct of the local authority. The authorities had violated the woman’s right to liberty protected by the Human Rights Act (in Article 5) by failing to get the proper authorisation to detain her in a nursing home. They were also found to have violated her right to respect private and family life under the Act (Article 8) by removing her from her home of 30 years and from the family that had been caring for her.

This case bears striking similarities to that of the Neary family who took action against Hillingdon Borough Council; ; where Steven Neary, a young man with learning disabilities cared for by his father, Mark, was taken into respite care and then not allowed to return home for a year. Again the court criticised the conduct of the local authority in this case, which took place 3 years before RR. The court decided that the authorities had violated Steven’s right to liberty by detaining him without authorisation, for a number of months. And both Steven and Mark’s right to respect for private and family life had been violated because Steven had been taken from the family home and they could no longer enjoy life as a family.

As well as the delays sought in authorising depriving Steven of his liberty in the care unit, the court criticised the use of safeguards.. Known as Deprivation of Liberty Safeguards (DOLS, set out in the Mental Capacity Act 2005), these are intended to safeguard people who have been deprived of their Article 5 right to liberty. Mark Neary, Steven’s father, was quoted in the judgement as saying “safeguards seemed good – the reality didn’t. I didn’t know where I was”. It was clear in Neary that the safeguards had been misused. Here measures which are supposed to ensure respect for the rights of people in care were used as a tool to ensure continued detention, and risks to the right to liberty. Clearly, reason for safeguarding are about ensuring people’s basic rights to liberty and to free from harm, in practice this was forgotten, which is why the Human Rights Act was needed to challenge officials and hold them to account.

The Deprivation of Liberty Safeguards

The recent case known as Cheshire West is a significant step in recognising the human rights of those without capacity to make decisions about their own care. It concerned three adults with learning disabilities in ‘home like’ care placements who were none-the-less deprived of their liberty under Article 5. This is because, as the lead judgment by Lady Hale states, disabled people and people who lack capacity to make a decision are still protected by the same universal human rights as the rest of us. As Baroness Hale said, if a care arrangement would deprive her of her liberty, then so too would it deprive the person without capacity of theirs, it doesn’t matter what the intentions behind the deprivation are, or whether the person seems not to protest against the situation:

a gilded cage is still a cage

The case is important for carers. This test about whether a situation is depriving someone of their liberty applies whenever the state becomes involved in the provision of care. Where a local authority assumes responsibility for somebody’s care, they also assume responsibility to properly assess whether their care arrangements deprive that person of their liberty. If they do, then the proper safeguards must be applied. Baroness Hale is quick to emphasise that needing to apply the safeguards to a person’s care is not a bad thing. It is a crucial mechanism for ensuring that the person’s rights are respected while receiving care. The reviews required by the safeguards should be independent assessments which determine whether the persons rights, including to make decisions about what happens to them (Article 8) are respected to the maximum extent possible.

Respecting the wishes of the person in care

A 2013 case highlights importance of taking the wishes of the person in care into account in decisions affecting their life. The substantial issue of the case was whether an older woman with dementia could be allowed to return to live in her home for a trial period. The woman, Mrs Manuela Sykes, a former activist and politician also wished to waive her right to anonymity in order to raise awareness of her experience. The court found that at the time of the case Mrs Sykes lacked the capacity to make that decision for herself, however, taking into account her present wishes and her former strongly held values, it was decided that it was in her best interests to allow her to waive her anonymity: “by nature she is a fighter, a campaigner, a person of passion… she would wish her life to end with a bang not a whimper.”

A recent case from the European Court of Human Rights, McDonald v UK found that a woman forced to use incontinence pads when she was not incontinent had her rights to a private life engaged when she was made to live in a manner which “conflicted with [her] strongly held ideas of self and personal identity”. Once those Article 8 rights were engaged, the local authority providing overnight care had a duty to consider those rights when making their decision or else they would be in breach of them. This case highlights the importance of looking at all care decisions through a human rights lens.

Challenging discrimination against carers

The rights in the Human Rights Act are drawn from the European Court of Human Rights, which is overseen by the European Court of Human Rights. The European Union and the European Court of Justice are completely separate. However, when the ECJ was asked to look at an employment case from the UK involving a carer, they looked at human rights. In Coleman v Attridge Law the ECJ used the ECHR human rights principle of non-discrimination when deciding whether an EU directive prohibiting discrimination against disabled people in employment applied to Sharon Coleman. Sharon, the main carer for her disabled son, worked at a law firm and was denied flexible work arrangements offered to her colleagues without disabled children. The ECJ found that disability discrimination by association is unlawful in the workplace. The case ensured that UK law provides protection against discrimination on the grounds of someone’s association, including caring responsibilities, with a disabled person.

Everyday empowerment and accountability is important tooCarers Guide

Human rights have been relied on in all of the above cases to ensure that lack of capacity or a caring role do not prevent a person from enjoying and exercising their rights. This has been something of a whistle stop tour of recent case law surrounding care, but you can read about some of these cases in more detail on this blog.

Finally, it’s really important to remember human rights are not all about the courts. The Human Rights Act has an important role beyond and before legal action. The law is about our rights and it can empower us to challenge poor treatment and decisions in our everyday interactions with public officials (as well as help officials develop and deliver better services). BIHR’s project work to take human rights into the heart of everyday life has included working with carers and their advocates. In our consultation with n-compass advocacy service in the North East of England:

  • Almost half thought human rights were important to their caring role
  • But less than a third felt confident that they knew what their rights were
  • And only 15% felt confident advocating for the rights of those they cared for

That’s why we produced Your Human Rights: A Pocket Guide for Carers, to help fill that gap. The Pocket Guide is about empowering carer’s with a bit more knowledge about their rights and the rights of those they care for, and carer’s tell us how important this is:

[with BIHR’s Pocket Guide] I feel more empowered and confident on how to challenge, I see human rights can facilitate change (Carer, North East England)

The BIHR guidance helps to equip carers with the knowledge to better secure their rights as well as those of the persons they care for. It’s all about bringing rights home. (Nick Gradwell, carer and expert by expereince)

So this Carers Week let’s spread the word that human rights are what it says on the tin – getting it “right” for all “humans” including carers and those for whom they care.

 

Capacity, Deprivation of Liberty and Human Rights: “What’s the harm, it’s for their own good?”

At the British Institute of Human Rights this is something we hear a lot, especially when we’re working on the care and treatment received by people with learning disabilities and capacity issues. Usually it’s a question that is well-meaning, but one which reveals deep-grained attitude that fails to recognise the most basic human rights we all have to be treated with equal dignity and respect. On 19 March the Supreme Court confronted this issue when deciding whether the care arrangements for P, MIG and MEG amounted to a deprivation of their right to liberty (also known as the Cheshire West case).[1]

This is an important case. It case is illustrates why and how the Human Rights Act should be the lens through which to view other laws and day to day practices. It has the potential to transform the way people in local authorities and those caring for others (especially involving the Deprivation of Liberty Safeguards and Mental Capacity Act) make decisions about people’s lives which put the person and their rights at the centre of the process, rather than relying on “best intentions”.

The Care Arrangements of P, MIG and MEG

P was a 38 year old man with Down’s syndrome and cerebral palsy who was cared for by 24 hour staff, in a house along with two other residents. He needed help with all aspects of daily life and went on accompanied trips out of the home almost every day. MIG and MEG were teenage sisters with learning disabilities who had been removed from a neglectful home. MIG lived with a foster mother whom the court noted she adored and MEG lived in an NHS facility for learning disabled adolescents. Both girls attended the same college during the day.Closed window

In MIG’s case she never attempted to leave the foster home by herself but would have been restrained from doing so it she had tried. MEG was sometimes physically restraint and received tranquillising medication. P was sometimes restrained in response to challenging behaviour.

Before the case got to the Supreme Court

The cases started in the Court of Protection, where it was found that P’s arrangements did amount to a deprivation of liberty, but as this was in his best interests it should continue, but with safeguards, including review.  MIG and MEG’s care arrangements were found to be in their best interests and not a deprivation of their liberty, and thus not be subject to review.

The Court of Appeal agreed that MIG and MEG’s were not deprived of Liberty, noting the “relative normality” of their situation. The Court also overturned the decision on P, finding that it was not a deprivation of liberty, introducing the idea of comparing P’s life to that of an adult in a similar situation with similar disabilities.

What the Supreme Court said

In P’s case the Supreme Court was unanimous that his situation amounted to a deprivation of liberty, and by a Logo UK Supreme Courtmajority (4 to 3) they also found the MIG and MEG had been deprived of their liberty. The leading judgement was delivered by Baroness Hale and it well worth the read, making it clear that human rights are universal to all and not lost simply because someone may have capacity issues.

The key point those involved in decision-making and delivery of care arrangements should bear in mind is that the test for whether a person is deprived of their liberty is whether they are “under the complete supervision and control of the staff and not free to leave”. The person’s compliance or lack of objection, the “relative normality” of the placement and the purpose behind it are all irrelevant to this objective question.

So what’s the harm?

Well quite a lot actually. As Lady Hale says in her judgement:

people with disabilities, both mental and physical, have the same human rights as the rest of the human race…This flows inexorably from the universal character of human rights, founded on the inherent dignity of all human beings…Far from disability entitling the state to deny such people human rights: rather it places upon the state (and upon others) the duty to make reasonable accommodation to cater for the special needs of those with disabilities…

“If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage. (our emphasis)

Making rights real

Whether this case will indeed transform practice now depends on the extent to which practitioners are made aware not only of this case but of why and how human rights are relevant to their work (and not simply about the legal team). At BIHR we run a range of training and capacity building services and projects and we’ll certainly be raising awareness through our work. We have recently been supporting people and groups to give evidence to the Mental Capacity Act Committee, which found some significant gaps in the protection of people’s human rights. You can read our response to the Committee here and the evidence we submitted here.

Ultimately the British Institute of Human Rights is a charity, with no statutory mandate (or funding) to drive forward work to put human rights at the heart of health and care. That is why we work hard to form partnerships with service providers, practitioner bodies, regulators and advocacy services to help people know and understand their rights and duties and put them into practice (check out our new resource “The Difference it Makes”). Indeed, we were pleased that the Care Quality Commission recently recommended that all advocacy services and detaining authorities should distribute BIHR’s Mental Health Advocacy and Human Rights: Your Guide.

As the new structures for health and social care take root, we very much hope to work with NHS England, the Department of Health, CCGs and others involved in the system, to make sure that people’s basic rights are respected and protected.


[1] P v Cheshire West and Chester Council [2014] UKSC 19