The Court of Appeal’s decision requires practitioners involved in end of life care to ensure that the appropriate people are consulted, detailed records are kept and that organisational policies comply with the law.
This briefing follows the update in our July Health Legal Update and is intended to provide practical guidance to those working in acute and end of life settings where decisions are being made regarding life sustaining care interventions.
The Court said that “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”.
Key points for providers
- Appropriate training of staff is key to ensure that they understand that the decision to withhold CPR is a clinical decision and this should be communicated to patient (and their relatives if they lack capacity). This will allow a patient/their family to seek a second opinion.
- Consideration needs to be given to training doctors to have these conversations.
- Earlier consultant involvement is likely to be required
- Not consulting will only be appropriate in the exceptional circumstance where a clinician feels that to do so will cause physical or psychological harm. It should be recognised however, that, while these discussions can be stressful, merely causing distress is not enough to exclude a patient from the process. We would recommend that a team discussion take place first where this may be a concern.
- Where a patient lacks capacity, providers are obliged to consult with the patient and those involved in their care about the decision (subject to confidentiality).
- Properly recording a note of your discussion is imperative. As with any clinical decision you take, doing so will assist if your decision later comes into question. A note of the discussion should include a record of your discussion in relation to:
- What CPR is and what it is expected to achieve.
- What a DNACPR is and what happens if CPR is not provided.
- The views of the treating team, patient and, as appropriate, their family.
- What information was provided to the patient in written form.
- The outcome of the discussion and any further action points.
- Handovers between shifts are of critical importance. Communication with the treating team and the patient are key.
- Communication between primary and acute care providers may be important. For some patients, the issue of a DNACPR might be raised at an initial stage with their GP. If an issue is raised before CPR might be called into question, this can enable informed discussions before acute assistance is required. It may also provide the opportunity for a patient to make their wishes regarding treatment clear, draft an Advance Decision or create a Health and Welfare Lasting Power of Attorney (LPA).
- Providers must be alert to the existence of Advance Decisions. Where a patient has lost capacity, a valid and applicable Advance Decision will stand, unless it can be shown that the patient has withdrawn it, acted inconsistently with it or appointed a health and welfare LPA afterwards. An attorney can only consent to or refuse life-sustaining treatment on behalf of the donor (the patient in question who has been assessed as lacking capacity) if, when making the LPA, the donor has specifically stated in the LPA document that they want the attorney to have this authority. As with all decisions, an attorney must act in the donor’s best interests when making decisions about such treatment. The attorney must not be motivated by a desire to bring about the patient’s death. If you have doubts about whether the attorney is acting in the donor’s best interests, seek legal advice.
- Providers should ensure that their policies and written information are both available and directed at patients and their families, as well as to staff.
- There is no obligation to offer to arrange a second opinion where the whole Multi Disciplinary Team are of the view that a DNAR notice is appropriate.
The proceedings were brought by way of Judicial Review by the family of Mrs Tracey, who had died before the application was made. They sought to challenge a decision by her treating Trust to put in place a DNAR notice.
Mrs Tracey was diagnosed with lung cancer with an estimated life expectancy of nine months. She then suffered serious injuries in a road accident and was admitted to hospital. She was placed on a ventilator and a decision was taken by her treating team to take her off ventilation. The question arose as to what would happen if she suffered a cardio-respiratory arrest. The doctors completed a DNACPR notice. How that happened and what was in the notes lie at the heart of this case. When one of her daughters discovered that the first notice had been made, she was horrified and registered her objections. As a result the notice was removed and cancelled.
Mrs Tracey’s health thereafter started to deteriorate. Mrs Tracey did not wish to discuss resuscitation. A few days later it was agreed with members of the family that a second notice should be completed. Mrs Tracey died on 7 March 2011.
The family claimed that the Trust had breached Mrs Tracey’s rights under Article 8 of the European Convention on Human Rights (the Convention) (which relates to a person’s right to respect to private and family life) because in imposing the first notice, it failed to adequately consult Mrs Tracey or her family, notify them of the decision, offer a second opinion, to make its DNACPR policy available to her and to have a policy that was clear and unambiguous.
A claim was also advanced against the Secretary of State that he failed to publish national guidance to ensure that the process of making DNACPR decisions is sufficiently clear, accessible and foreseeable and that persons in the position of Mrs Tracey have the right:
- To be involved in discussions and decisions about DNACPR.
- To be given information to enable them so to be involved, including the right to seek a second opinion.
The Trust’s DNACPR policy was available online while Mrs Tracey was in hospital. It was not directed to patients or disseminated to them unless specifically requested. A copy was not provided to Mrs Tracey or her family. Since 29 April 2014, the Trust has been issuing a CPR leaflet which outlines the CPR decision making process and states that patients will be asked what they think.
In relation to the Trust, the court decided that there had been an unlawful failure to involve Mrs Tracey in the decision to impose the first DNACPR. The court refused the other relief which had been sought. Key points were as follows:
- It is inappropriate (and therefore not a requirement of Article 8 of the Convention) to involve the patient in the process if the clinician considers that to do so is likely to cause her to suffer physical or psychological harm. Doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them. Many patients may find it distressing to discuss the question whether CPR should be withheld from them in the event of an arrest. If however the clinician forms the view that the patient will not suffer harm if she is consulted, the fact that she may find the topic distressing is unlikely to make it inappropriate to involve her. The Court should be very slow to find that such decisions, if conscientiously taken, violate a patient’s rights under Article 8 of the Convention. Clinicians should consult even if they feel the treatment would be futile. A patient is entitled to know when a clinical decision has been taken. If they are not told, they will be deprived of the ability to take a second opinion.
- The doctors in this case had not discussed the first notice with Mrs Tracey or reached a conclusion that would indicate that they assessed that discussing the issue would cause distress. There was a breach of the Article 8 procedural obligation to involve Mrs Tracey before the first notice was completed and placed in her notes. The Trust had not demonstrated that there were convincing reasons in this case not to consult her before this step was taken.
- The leaflet mentioned above handed to patients since April 2014 was sufficiently accessible for the purposes of Article 8(2) of the Convention. The Trust had also issued online guidance aimed at patients and the Court held that this made good the previous shortcomings in the accessibility of its policy.
- Referring to the case of Condliff, which related to the funding of bariatric surgery (and in which Mills & Reeve acted), the Court reflected that it is clearly not the law that Article 8 is never engaged in any case involving the provision or withholding of medical treatment. The question of whether it is engaged should not be confused with the separate question of whether it is breached in the circumstances of any particular case.
The case against the Secretary of State was refused. He had not breached the NHS Act 2006 by failing to issue a national DNACPR policy. It is true that the Secretary of State exercises an overarching responsibility for the provision of healthcare under section 1 of the 2006 Act. The Court of Appeal decided that to hold that article 8 requires the formulation of a unified policy at national level, rather than having individual policies at local level, would have been unwarranted and would represent an unjustified intrusion into government healthcare policy. It is government policy to encourage decision-making at local level. It was not evident that a central mandatory policy would necessarily be more effective.
How far does the decision go?
There has been much debate about this. It would appear that the decision could be far reaching in terms of the end of life decisions that it applies to. It goes beyond CPR and could cover various other end of life treatments, including ventilation and dialysis, for example. The key lesson is that where a decision is being taken, in advance, in relation to whether or not to treat an opportunity is presented for discussion with the patient and (where appropriate) their family.
Any challenge will be dealt with by the court on a fact specific basis. Ensuring that your organisation has an appropriate policy in place that is accessible and aimed sufficiently at patients, along with readily available written materials on ward for key treatments will provide an opportunity to open discussions. It is accepted that this will have resource implications and some concern has been expressed that this could lead to a “tick box” approach to the issue, but the court ruling has made it very clear that a dialogue with patients should be entered into.
Readers should note that it is understood that the joint statement will be the subject of further review in the near future.