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”

 

 If you found this blog useful please consider supporting BIHR to win a competition for Small Charities Week 16-20 June 2014. All you need to do is send a Tweet which says: #ILoveSmallCharities like @BIHRhumanrights because (and add you reason).
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!

 

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Respecting the right to family life: the Human Rights Act, parents with learning disabilities and access to justice

By Sanchita Hosali and Natalie Threfall at British Institute of Human Rights

“Human beings are social animals. They depend on others. Their family, or extended family, is the group on which many people most heavily depend, socially, emotionally and often financially. There comes a point at which, for some, prolonged and unavoidable separation from this group seriously inhibits their ability to live full and fulfilling lives.” (Huang, 2007)

The right to respect for family life protected by the Human Rights Act (in Article 8) goes to the heart of decisions involving children and care, reminding us to consider the both the rights of a child as an individual and their rights as a member of a family. Yet it is a human right that is often misunderstood in practice (and sometimes maligned in headlines and sound-bites). A recent decision in the family court, Re DE (A Child) [2014] EWFC 6, is a reminder that the local authority and its staff need to understand that consideration of the Human Rights Act is an important part of making fair and lawful decisions that respect the rights of the child and the family.

What happened?

The case concerned D, the child of a couple with learning disabilities. D had been subject to a care plan from birth, and had been living at home with his parents who were supported by the local authority. The local authority had become concerned that D’s welfare was deteriorating and made plans for D to be taken into foster care. This would be followed by a hearing to determine the future of the care plan. The parents’ solicitors asked the courts for an injunction preventing D from being taken into care before the care plan hearing. They said the injunction should be given using powers under the Human Rights Act, because removing D before the hearing was a disproportionate restriction on their right to respect for family life. The first judge rejected this as he did not believe he had the power to grant such an injunction.

Challenging the interim care decision on human rights grounds

At the higher court Mr Justice Baker found that the first judge had limited himself and his powers wrongly when refusing to grant an injunction under the Human Rights Act. Local authorities have a duty under section 6 of the Human Rights Act to make sure all their decisions respect the rights in the HRA. In D’s case the authorities had failed to respect the Article 8 rights to the family (discussed below). Therefore the courts, which also have a duty under section 6 to respect human rights in their decision making, can rely on the Human Rights Act to prevent an unjust decision. This means if a judge has the power to grant an injunction, a power which has recently been granted to the family courts, then they can grant an injunction under the Human Rights Act.

Did the care decision therefore violate the rights of D or his parents?

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

In cases of removing a child from the family home, looking at the situation through a Human Rights Act lens means recognising that the child and the family have rights which should be respected unless the tests of lawfulness, legitimate aim, and proportionately justify restriction. For example, where a child is at danger of serious harm or neglect the Human Rights Act places a positive obligation on officials to step in and take action (this underpins safeguarding).

In D’s case he was not in immediate danger, nor was there any threat of future danger. Yet he was taken into foster care before the hearing to determine the future of the care plan and the child’s best interests. If, after a full and proper hearing had been carried out, it was found to be in D’s best interests for him to be taken into foster care, the interference with his and his parents’ Article 8 rights would be justified. However, to take him into care when he was not in danger and before evidence could be heard from his parents failed to take the family’s human rights into account.

What does this mean?

D’s case simply (but importantly) clarifies that in such situations parents can apply to the courts for an injunction under the Human Rights Act. Whether the removal decision breached human rights, is a matter which must be decided at a full hearing.

However, it does have a broader significance in reminding officials about the importance of taking human rights into account at every stage of the decision making process. We have blogged before about cases where decisions that drastically alter peoples’ lives have been made before their human rights have been considered and the proper safeguards put in place, such as in RR v Milton Keynes Council where the local authority failed to apply for authorisation to remove an elderly woman from her home. The decision in Re D highlights once again the weight local authorities must put on all rights when making their decisions.

Hold on, there is an access to justice issue too

D’s case also raises access to justice questions, an issue of growing concern with recent changes to legal aid, which have had a particular impact in family and civil cases. Because of the specific nature of the original care plan and the changes that were being enacted, under the Children Act 1989 the family fell into a gap that left them without non-means tested legal aid. As the father had a steady, but low paying job, he was unable to access legal aid and his solicitors and barrister acted pro bono.

Justice Baker highlights this gap as being a real barrier to accessing justice, particularly for adults with learning disabilities involved in care proceedings. Being unable to challenge a local authority’s care decision potentially leaves many families separated and unable to challenge violations to their rights. In particularly serious cases, being unable to contest life altering decisions may also risk falling foul of the right to a fair trial under the Human Rights Act (Article 6), which applies in many civil issues including family law.

At the end of his judgment, Justice Baker specifically calls this point to the attention of the President of the family courts, Sir Justice Munby. This week he made the important decision to suspend proceedings in a case where contact arrangements for a child were complicated by his father’s inability to access representation or translation services (Q v Q).

That case deals with contact arrangements between a father (who was a registered sex offender) and his child. As part of the hearing both sides put their case and evidence to the judge, however in this case legal aid for the father has been discontinued, and without translation or representation he cannot take part in the case. Justice Munby said:

“that there could be circumstances in which, without the assistance of a legally qualified representative, a litigant might be denied [their right to a fair hearing] … these are matters which are required to be investigated in justice not merely to the father, but I emphasise equally importantly to the son, as well as in the wider public interest of other litigants in a similar situation to that of the father here … there is the risk that, if one has a process which is not fair to one of the parents, that unfairness may in the final analysis rebound to the disadvantage of the child.”

As a result, he has suspended proceedings, inviting the Justice Secretary Chris Grayling to intervene in the case and explain how the costs of the case, which is “necessary and fair”, should be met. If necessary, he says, it may be the court, as a public body with a duty to respect human rights as described above, which must meet the costs of the case and ensure access to justice. We await the Minister’s response…