Last word: respecting decisions and privacy before and after death

In the recent Court of Protection case Newcastle upon Tyne Hospitals NHS Foundation Trust v LM [2014] All ER (D) 45(Mar); [2014] EWHC 454 (COP), the court had to determine the capacity and best interests of a Jehovah’s Witness patient as well as privacy before and after her death.

The patient, LM, a woman in her 50s, had no known relatives. She had a history of depression
and paranoid schizophrenia and had received compulsory mental health treatment. LM had been a Jehovah’s Witness since the 1970s at least.

In the middle of January 2014, LM was seen by
a consultant psychiatrist who had known her for seven years. He felt her mental health was good because he had treated her for some years.

On 6 February 2014, LM was admitted to
hospital by ambulance having been found wandering and confused outside her home; evidence suggested recent falls. From her admission to hospital, it was recognised that she was a Jehovah’s Witness. Her hospital notes were marked that she was not to receive blood or blood products under any circumstances.

LM made some improvement, but on 11 February 2014, she was found to be bleeding from a duodenal ulcer. Her levels of haemoglobin were falling and became dangerously low.

That day, a liaison psychiatry assessment found no evidence of active psychotic illness and the next day, LM told two doctors in the gastroenterology team that she was adamant she would not want any blood-product treatments.

The doctors felt she had full mental capacity at that time. LM had not, however, completed an advance decision pursuant to section 24 of the Mental Capacity Act 2005 (MCA).

Compromised survival

LM’s condition deteriorated and she was admitted to the high-dependency unit requiring intubation, ventilation and sedation. She lacked capacity to make or communicate any decision. Her profound anaemia compromised her chances of survival. A blood transfusion would improve those chances although it was possible she would not survive, even with that intervention.

On 18 February 2014, the intensive care consultant contacted the trust solicitor and spoke to LM’s GP, the gastroenterology team, the critical care team, the consultant community psychiatrist and the hospital liaison committee for Jehovah’s Witnesses. The trust’s medical director was consulted as well as the chair of the trust’s clinical ethics committee. Contact was made with the Independent Mental Capacity Advocates
service, whose view was that they need not be involved because LM’s church colleagues were available for consultation.

Later that morning, the trust solicitor met the intensive care practitioners to discuss whether to apply to the court for a legal determination as to whether LM’s refusal was valid, or to treat her in her best interests.

An immediate application was made to the Court of Protection. A circuit judge in Newcastle was willing to hear the application at 2pm but was told that the High Court would not release the matter to her. Arrangements were then made for the case to be heard in the urgent applications list by the Honourable Mr Justice Peter Jackson by video link, the judge sitting in open court with a representative of the Press Association present.

The application by the trust was for a declaration that it would be lawful to withhold a blood transfusion from LM.

The trust solicitor submitted that there
was evidence of LM’s capacity within MCA and that she had clearly expressed her refusal of treatment, namely a blood transfusion.

Evidence was given by the consultant intensivist as to her medical condition and the views of the clinicians that her expressed wishes applied to her life-threatening condition and should be respected.

This was supported by evidence from a fellow church member of LM’s who had known her for
30 years. He confirmed she fully subscribed to tenets of the Jehovah’s Witness faith (including opposition to any blood transfusion) and would have been distraught at the prospect of receiving a transfusion. This was supported by the chairman of the hospital’s Jehovah’s Witness liaison committee.

It was necessary for the judge to determine
the following questions:

1. Did LM (before she became unable to do so) have the capacity to make a decision to refuse
a blood transfusion?

2. If so, did her earlier decision about blood transfusions apply to her later circumstances?

3. Alternatively, if the answer to either of the above questions was no, was the trust’s proposal to withhold the transfusion in her best interests?

Capacity criteria

The judge found that prior to loss of consciousness LM had the capacity to decide whether to accept or refuse a transfusion. The presumption of capacity (section 1(2) of the MCA) was not displaced and the criteria for capacity (section 3
of the MCA) were met. He was satisfied LM understood the nature, purpose and effects of the proposed treatment, including that refusal of a blood transfusion might have fatal consequences.

He held that her earlier decision did apply to her later more serious condition. In consequence, he found that LM had made a decision that the doctors rightly considered must be respected.

Alternatively, he stated that if LM had not made a valid decision, he would have granted a declaration that to order a transfusion would not have been in her best interests. This was pursuant to section 4(6) of the MCA that her wishes, feelings, long-standing beliefs and values carried determinative weight.

He ruled that the right to life in article 2 of the European Convention on Human Rights (ECHR) is fundamental but not absolute. 

“There is no obligation on a patient with decision-making capacity to accept life-saving treatment and the doctors are neither entitled nor obliged to give it.

The order made was as follows: “It shall be lawful for the doctors treating LM to withhold blood transfusions or administration of blood products notwithstanding that such treatments would reduce the likelihood of her dying and might prevent death.”

Restricted reporting

The judge in LM considered the trust’s application for an order restricting publication of information about the case and LM, as an incapacitated adult. This was pursuant to the practice direction [2005] 2FLR 120 and the official solicitor’s practice note.

The trust solicitor argued that LM’s anonymity be preserved on the basis of article 8 of the ECHR and that the doctors and nurses caring for her should not be named. The Press Association submitted that LM’s identity be reported.

The judge stated he would grant a restricted reporting order (RRO) subject to the procedure being followed under the practice note requiring service on the national news media to comply with section 12(2) of the Human Rights Act 1998. Judgment on the decision was to be handed down later with the full reasons.

The full judgment and the RRO were to be handed down on 26 February 2014. LM died in
the early hours of that morning and the judge directed a further hearing take place that day by telephone when further submissions were made.

In accordance with the request from the trust, the judge held that the court had jurisdiction to make an order during the lifetime of a patient, which would continue to have effect after death unless and until varied (Re: C (Adult Patient: Restriction of Publicity After Death) [1996] 1 FCR 605). The proper approach was to make an order preserving the situation until a time came for someone seeking to challenge the question
on full evidence.

Therefore, an RRO was made preventing the naming of LM, the medical and nursing staff who looked after her and the two Jehovah’s Witnesses who participated in the proceedings. This did
not prevent naming the hospital, the trust or discussion of the issues.

Ethical guidance from the General Medical Council (GMC), the British Medical Association and the Department of Health all agreed that confidentiality obligations of doctors apply beyond death. Doctors have an obligation to keep personal information confidential after a patient dies (GMC professional code of medical confidentiality, paragraph 1.70).

More recently, Mr Justice Mostyn gave his judgment in Nottinghamshire Healthcare NHS Trust v RC [2014] EWHC 1317 (COP). Although this involved a patient who was detained under the MCA, the decision in LM was quoted with approval as there being no obligation on a patient with capacity to accept life-saving treatment and that doctors are not entitled or obliged to give it in such circumstances.

The judge stated: “The Hippocratic duty to seek to save life, or the benign but paternalistic view that it is in someone’s best interests to remain alive, must all surely be subservient to the right to sovereignty over your own body.”

On the facts of RC, he stated: “It would be an abuse of power in such circumstances even to think about imposing a blood transfusion on RC having regard to my findings that he presently has capacity to refuse blood products and, were such capacity to disappear for any reason, the advance decision would be operative. To impose a blood transfusion would be a denial of a most
basic freedom.”

Mostyn J also recognised and emphasised that individuals are entitled to rely on an “iron tenet” of an accepted religion to refuse the advantages of blood transfusion.

The use of advance decisions (previously known as living wills) formalised by the MCA has been sparse. This case emphasises the value for patients to specify their wishes about medical decisions that may need to be made after the patient has lost capacity, and the value for doctors who need to make treatment decisions.

LM demonstrates the difficult situations
that confront clinicians and how the law can
assist speedily, effectively and compassionately
to resolve complex professional and ethical conflicts: respecting autonomy and always placing the interests and dignity of the patients
at the forefront. SJ

Barry Speker OBE DL is a consultant with Sintons and is trust solicitor for the Newcastle Upon Tyne Hospitals NHS Foundation Trust. He acted in this case