Judgement Comes After Mum Instructs Specialist Human Rights Lawyers At Irwin Mitchell To Help Daughter With Huntington’s Disease Languishing At The End Of Her Life

Legal permission from the courts will not be required to withdraw life-support treatment to people suffering from debilitating diseases, providing relatives and doctors are in agreement and medical guidelines are followed, a senior judge has ruled in a landmark judgement.

The Honourable Mr Justice Peter Jackson gave the legal ruling in the High Court following the case of a woman with advanced Huntington’s disease, who died after her family successfully applied for permission for doctors to withdraw her treatment.

The woman’s mother had instructed specialist human rights lawyers at Irwin Mitchell to ask a judge at London’s Court of Protection to grant hospital doctors permission to withdraw her treatment provided by a feeding tube and provide palliative care only. The woman’s family said that after suffering with Huntington’s disease for over 25 years, she had reached the point where she was completely unaware of the world around her and that she would not have wanted to be kept alive in the condition she was in. Doctors and the family agreed that it would be in her best interests for her treatment provided by a feeding tube to be withdrawn.

Despite doctors at the Midlands hospital where she was a patient agreeing, it was felt that the law might require her case to need permission from the Court of Protection. The position as to when these cases must be brought to the court had previously been unclear. In the case of The Hillsborough victim Antony Bland, permission was sought from the court in a landmark case in 1993. Since then many cases have come before the court to seek permission to withdraw treatment with some cases causing the family distress and delaying the doctor’s treatment plans.

The case is significant as the law was previously unclear and the Official Solicitor, a government officer appointed to act for the patient in such cases, argued that every case where withdrawal of clinically assisted nutrition and hydration is requested should come before the court. The family and the NHS trust argued that permission from the court was not required where there was no dispute and the position was not clear. Submissions were made to the court about how it would be best to protect the patient’s human rights.

The family argued that major life and death decisions happen every day in hospital and do not always need to come before the court. NHS doctors supported this argument.

But now following the decision made in this case, Mr Justice Peter Jackson has ruled that permission from the court is not always necessary.

A decision to withdraw life sustaining treatment (including feeding by tube) will be lawful, providing it meets General Medical Council, British Medical Association and the Royal College of Physicians’ guidelines - and relatives and medics are in agreement. In those cases where agreement cannot be reached or the position is not clear, the court will still need to resolve the dispute. The judgement is supported by another judgement in July this year given by Lady Justice Eleanor King in the Court of Appeal in the case of Paul Briggs, the policeman whose family and doctors were granted permission to withdraw treatment. 

Caroline Barrett is a public law and human rights specialist at Irwin Mitchell’s Cambridge office.

Expert Opinion

“We have acted for families across the country in cases concerning serious medical treatment issues or life and death decisions. It is hoped that this judgment will significantly clarify the law in this area and ensure that those with terminal or life limiting illnesses are treated with dignity and respect in the final stages of their lives.

“Our client’s family witnessed a much-loved daughter, wife and mother deteriorate to the point where she no longer seemed to be aware of the world around her, or recognise her loved ones who regularly visited her in hospital and helped care for her.

“Our client had lived in hospital for over 20 years and her family and hospital staff provided dedicated care and support to her throughout her slow decline.

“Huntington’s Disease is an extremely cruel disease and when her condition reached the point when she had no quality of life remaining, and appeared unaware of the world around her, her family felt that her feeding tube which was keeping her alive, should be withdrawn.

“Although doctors agreed with the family that this would be the best thing for our client, the case took a long time to be resolved because of the legal uncertainty as to whether the case needed to be brought to the Court for permission. Our client’s doctors spent many months gathering evidence and instructing an external expert for this purpose. Eventually our client’s mother approached us so that she could issue the case at the court herself. She recognised the hospital staff were doing an excellent job but that the lack of clarity about the legal position was causing delay and distress.

“This judgment has great legal significance in that if relatives and doctors are in agreement, and after following the medical guidelines issued by the Royal College of Physicians (1) it is agreed that withdrawal of treatment is in the patient’s best interests, the court has confirmed that there is no legal requirement for a court order before the treatment can be withdrawn. Doctors and patients will be acting in accordance with the law, set down by the Mental Capacity Act 2005. This will allow those suffering with terrible diseases such as Huntington’s, or other terminal or life limiting illnesses, to pass away with dignity, easing the suffering and pain for all involved.”
Caroline Barrett - Senior Associate Solicitor

The woman, who cannot be named but is referred to as “M”,  was in her 50s and had suffered from Huntington’s for 25 years. The hereditary disease attacks nerve cells in the brain, affecting movement, judgement and the behaviour of those with the condition. 

Her mother, who is in her 70s, instructed Irwin Mitchell to issue the case on her daughter’s behalf in the specialist Court of Protection, which deals with issues relating to people who lack the mental capacity to make decisions about their own treatment.

The case was also legally significant because it was also one of the first cases concerning the withdrawal of life sustaining medical treatment where the court appointed a family member as ‘litigation friend’ to act on behalf of a patient. Usually the Official Solicitor, an independent litigation friend is appointed to act for a protected party in cases of serious medical treatment.

However, Mr Justice Peter Jackson ruled that M’s mother had her daughter’s best interests at heart and said allowing her to be a litigation friend would be in M’s best interests.

Expert Opinion

“This is one of the first reported cases, where the court has justified the appointment of a family member as litigation friend in a medical treatment case.

“The judge specifically said that just because the mother was asking for withdrawal of treatment, this did not make her an unsuitable litigation friend.”

Caroline Barrett - Senior Associate Solicitor

(1) The prevailing professional clinical guidance – currently the GMC’s Good Medical Practice guidance, the BMA guidance ‘Withholding and Withdrawing Life-prolonging Medical Treatment’ and ‘End of Life Care’ and the Royal College of Physicians’ Guidance on Prolonged Disorders of Consciousness.

Our Human Rights lawyers are able to assist across a number challenges, from the right to life to access to healthcare. To find out more about our wider Public Law services, visit our Protecting Your Rights page.