Dementia currently affects 1 in 14 people in the UK. Many people will either know someone with dementia, have had to support and care for someone with dementia or have been diagnosed themselves.
When the Mental Capacity Act 2005 (“the Act”) was going through parliament, many “pro-life” groups argued that the provisions around health and welfare and advance directives would be the prelude to legalised euthanasia.
Before the Act, which came into force on 1st October 2007, the Courts used their inherent jurisdiction to make decisions over matters where the individual lacked capacity to do so for themselves. This included the case involving Tony Bland¹; a Liverpool football supporter caught up in the Hillsborough disaster, who was in a permanent vegetative state as a result of his injuries. The House of Lords, as it then was, ordered that it was in Tony’s best interests for his life support machines to be turned off having considered medical evidence and seeking to discern Tony’s views from before the accident. The Act codified many aspects of the way in which the Courts had previously made decisions in this arena.
There had also been a growing number of people who were following a trend begun in the US and writing “living wills”. These documents had no legal force but were intended to set out an individual’s wishes concerning treatment and care to be given in circumstances where they were incapable of communicating their wishes. As such, the documents could be considered as part of the decision-making process. Once again, the Act codified the way in which these documents should be set up to have validity. The Act also enabled the creation of a health and welfare power of attorney to enable individuals to make decisions over care and treatment in circumstances where the individual had lost capacity to do so for themselves. A power of attorney enables the individual to authorise the attorneys to refuse (or stop continued use of) life-sustaining treatment. In every case, the attorney and medical and other staff must make the decisions in the “best interests” of the individual.
An indication of how vigilant the Courts have been in guarding the boundaries of these provisions and regulations has been their continued refusal to see assisted suicide as consistent with the current law – arguing that parliament must make any such change².
The Courts have been called upon to make decisions in a number of different cases where the individual has lost mental capacity to communicate their own wishes and, whether as a result of a stroke or progressive illness or suchlike, is in a permanent vegetative state or similar, and kept alive by medical means. The Courts have considered in detail the medical evidence and expert views, as well as views from family members as to what they believe their loved one would have wished for in such circumstances. The Official Solicitor would represent the individual and put forward arguments on their behalf.
Sometimes it can seem as if a decision to allow the machines to be switched off has been made lightly³, but it should be remembered that the individual, by this time, is unable to communicate their wishes and the medical officials have considered there is no prospect of improvement. Whilst a reading of the case report may make it seem as if the Court ruling has been made lightly, it will have come after a detailed hearing of all the evidence as well as putting the family through significant additional emotional heartache.
The case of the NHS Trust v Y in 2018⁴ has caused concern for some, suggesting the Courts are relaxing the requirements so that assisted suicide may enter by the back door. Some commentators have also suggested the Court of Protection is a secret court, adding to the concerns about “euthanasia creep”. The allegation is that the proceedings are heard in private, so that little is known about the cases and the decisions being made. This case was notable, however, as the British Medical Association (BMA) and the Care Not Killing Alliance made written submissions which the Court considered.
A careful reading, however, of the NHS Trust v Y judgement makes it clear not only that there has never been an absolute requirement that all such cases must go to a full hearing in open court (para126) but also that this will only be possible where:
“... the process is the subject of proper professional guidance, covering vitally important matters such as the involvement in the decision-making process of a doctor with specialist knowledge of prolonged disorders of consciousness, and the obtaining of a second opinion from a senior independent clinician with no prior involvement in the patient’s care. The second opinion, as contemplated in the guidance (the GMC guidance 2010) is, in my view, a crucial part of the scrutiny that is essential for decisions of this sort, and the guidance sets parameters which should ensure that it is an effective check, in that the clinician who provides the second opinion must (so far as reasonably practical in the circumstances of the case) be external to the organisation caring for the patient, and is expected to carry out his or her own examination of the patient, consider and evaluate the medical records, review information about the patient’s best interests, and make his or her own judgement as to whether the decision to withdraw (or not to start CANH (clinically assisted nutrition and hydration) is in the best interests of the patient. Thus the interests of patients and their families ate safeguarded, as far as possible, against errors in diagnosis and evaluation, premature decisions and local variations in practice.
If at the end of the medical process, it is apparent that the way forward is finely balanced, or there is a difference of medical opinion or lack of agreement to a proposed course of action from those with an interest in the patient’s welfare, a court application should be made.” (paragraphs 124 and 125).
The case makes it clear that the “lack of agreement” may be on the part of the family such that a court application is needed.
As others have noted, however, the handing back of this responsibility does carry with it the real need to ensure that the Mental Capacity Act is understood and applied with care and attention to its spirit as well as its letter, in the clinical context. The case also highlights the ongoing tension between medical advances and ethics and the need for ongoing rigorous debate and accountability.
For more information
If you would like more information on this article, please contact Alex Elphinston.
1. Airedale NHS Trust v Bland AC 789
2. R on the application of Conway  EWCA Civ 1431; and the Public Guardian v DA and Ors  EWCOP26
3. M v Mrs N, Bury Clinical Commissioning Group and a Care Provider  EWCOP 76 (Fam); and M v A Hospital  EWCOP 19
4. NHS Trust v Y  UKSC 46
The 2022 Code replaces the NHF Code of Conduct 2012 (the 2012 Code) and sets out the baseline standards that the NHF expects of its member registered providers (RPs).
The High Court has dismissed a challenge by the Police Superintendents’ Association to the closure of legacy public sector pension schemes.
In my recent blog, I said that we would be issuing a series of ebriefings and blogs highlighting issues with the Procurement Bill. This is the first of these.
Contractors and delivery partners are facing a ‘perfect storm’ in many cases with a number of factors directly impacting upon the profitability of their work.
Worker status, like Piers Morgan, is one of those things that we think has gone away and then it pops up again!
We are seeing a steady trickle of decisions focused around the issue of flexible working requests or employer requirements for changes to working patterns (both pre and post the pandemic).
For those of us who have endured a choppy cross channel journey, the mention of P&O Ferries will invoke some nauseous memories.
Successive generations have witnessed seismic shifts in the workplace; post-war it was the return of the soldiers and the impact on working women who had to work in their place.
In this podcast, Puja Desai interviews Kimberley Foster and discusses her experience with counselling. This is a really helpful podcast for anyone who has thought about counselling.