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!

 

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Salisbury: Home to the Magna Carta and the Human Rights Tour!

Guest blogger: Tom Bisgood

After two hours on three trains I arrived in Salisbury to attend one of the BIHR Human Rights Tour Events – admittedly the London one might have been an easier journey, but the opportunity to go to a community-based event outside of the capital was one not to be missed.

The day started much as it meant to go on – with lots of debate and discussion among the participants. The first thing we tackled was a biggie – what we felt human rights were all about. For my group this provoked a wide range of views including ideas of fairness, equality, checks on state power and even wars and bombs.

Learning a bit about the history of human rights and the particulars of the European Convention on Human Right and the Human Rights Act set us up for the rest of day. The somewhat tongue-in-cheek history video tracing some of the roots of human rights was apt given that Salisbury lays claim to be home of the best preserved copy of the Magna Carta.

Arguably, one of the most important parts of the day was the case studies and the chance to look at how human rights might apply to a variety of real life situations. I have no doubt from the discussions in my group that this session was extremely useful to those working in social care and community groups – what we learned was so clearly applicable to their work. We explored the case of Alex who, due to his history of mental illness was deemed unsuitable to be a reliable witness in a case against a man who bit off part of his ear and so the prosecution against his attacker was dropped. I don’t want to give too much away in case you get to look at Alex’s case on the Human Rights Tour, but it brought to life how human rights are about the person and looking at how the actions or inactions of officials can make us vulnerable or put us at risk. I’ll leave it there and wish you luck with your group discussions if you “meet” Alex on the Tour!

For me the most eye opening part of the day was the “fact-checking” sessions, where we investigated the reality behind some of the things about human rights in the press, from politicians, on the bus (or two-hour train journey!). The BIHR team were definitely put to the test, with the group throwing out some pretty big issues from FGM to deportation.

For me one of the most interesting bits was unpicking “cat-gate”, where the Home Secretary and many papers talked about how human rights and owning a cat meant a person couldn’t be deported. This case was actually about a Home Office policy which said deportation (here because a man overstayed his student visa, not because he’d committed a crime) should go ahead unless the person is in a relationship of more than two years. The man had been in a relationship and there was evidence to show this, like owning a cat – something lots of people in relationships do! So yes a cat was involved, but in a really minor way, which had nothing to do with human rights. Yet it presented by the media and politicians in a way which undermines human rights, making them seem silly or even dangerous.  And that led us to the case of Abu Qatada. I was surprised to learn how human rights helped the UK deport him to Jordan. Practically the whole world has agreed to the legal ban on torture (of course practice might be different), and this means Governments can’t just send someone to be tortured in another country and turn their face away. What they could do was get proper assurances that torture wouldn’t happen, and by convincing Jordan to agree to the international legal ban on torture – by using human rights – the deportation could go ahead. But none of that seems to have been explained by politicians or the media.

All in all the Human Rights Tour was an incredibly thought-provoking day. It was a great space for a real mix of people to firstly meet up and secondly to learn about and debate human rights, in a far more balanced way than is often seen in the media. At the end of the day I feel I’ve learnt a substantial amount about human rights and really got to develop my knowledge further. So now you’ve finished reading this, what are you waiting for? Book your free place at the Human Rights Tour now!