Landmark ruling means legal permission no longer needed to withdraw life support for patients with life-limiting conditions.
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.
Mr Justice Peter Jackson gave the ruling in the High Court following the case of a 50-year-old woman (referred to in the case only as M) who had suffered from Huntington's disease for 25 years and died earlier this year after her family applied for permission for doctors to withdraw her treatment.
M’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 she developed Huntington’s disease in the 1980s and became permanently resident in hospital in 1994. By 2003, she had become dependent on clinically assisted nutrition and hydration (CANH). Her family and doctors believed she was in a minimally conscious state, unable to communicate but showing some signs of response to pain relief. Doctors and the family agreed that it would be in her best interests for her treatment provided by a feeding tube to be withdrawn.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 be heard and sought 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.
Sarah Wooton of Compassion in Dying welcomed the ruling, "Today’s judgement is a helpful step towards a clearer, more person-centred view of end-of-life care," she said. "When all parties – family, the hospital and treating doctors – are agreed on what someone would have wanted for their care, it seems absurd to require a costly court process to confirm this."
“While the judgment is likely to be contested by the Official Solicitor, we believe Mr Justice Peter Jackson’s reasoning is sound. It should not be necessary to require court proceedings to respect a person’s wishes simply because they are in a persistent vegetative state (PVS) or minimally conscious state (MCS). That requirement is unduly onerous on families and on the health services, who would need to expend large amounts of money even where there is no dispute as to the right course of action. As the judgment points out, it may even lead to inappropriate treatment continuing against a person’s wishes simply to avoid having to go through the Court of Protection.
“It is clear that the best way to avoid complicated and costly hearings in the court is to ensure your wishes are recorded in an Advance Decision or Advance Statement," continued Wooton. "These are legally binding and enforceable statements that would ensure anyone who is unable to express their wishes can nonetheless have them respected by healthcare professionals. Anyone who is faced with a chronic and progressive illness should consider completing an Advance Decision or Advance Statement so that they, their friends, their family and their caregivers can be certain that they get the treatment and care that’s right for them.”
Caroline Barrett, a human rights solicitor at the law firm Irwin Mitchell that represented M’s family, explained the context that led the family to bring the case: “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.
“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 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.”
This ruling sets a precedent which has implications for people with life-limiting conditions and their families and could alleviate the distress of individuals spending longer on life support in a vegetative state than is necessary because medical staff/family members have been unable to bring cases to court due to the expense and bureaucracy involved.
Mr Justice Jackson ruling clarifies that as things stand, courts need not be involved in these sorts of cases, so long as doctors and families are in agreement, and the removal of food and water are in the best interests of the patient.
About Huntington's disease
Huntington’s disease, which is often called HD, is a hereditary disorder of the central nervous system. It used to be known as Huntington’s Chorea or HC. Huntington’s disease usually develops in adulthood and can cause a very wide range of symptoms. The disease, which affects both men and women, has no cure and cannot be reversed or slowed down.