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.
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!