When P stops eating and drinking

By Ian Brownhill, 26th March 2024

This is not a blog about anorexia, withdrawal of artificial/clinically assisted feeding, nor is it a blog post about the ethics of voluntarily stopping eating and drinking (VSED). Rather, it is an attempt to explain the circumstances in which the Court of Protection might become involved in a case where a person has stopped eating and drinking. This post sets out broad principles and should not be relied upon as legal advice. From the outset, it is worth noting that for many people, stopping eating and drinking is simply part of their dying process.

The call

Most of the cases involving fluid or food refusal which resulted in published judgments relate to patients with anorexia nervosa. However, there is a variety of different circumstances in which food/fluid refusal occurs. Calls to Court of Protection lawyers tend to occur in these three scenarios:

• P has stopped eating and/or drinking and expressed a reason for doing so. That reason might be political (a ‘hunger strike’), or, might be an attempted means to cause a change in their wider care and support arrangements;
• P has stopped eating and/or drinking with a view to ending their own life (this is often referred to as VSED);
• P has stopped eating and/or drinking but has not given any reason and care/health staff are unclear what, if anything, to do in the circumstances.

In respect of which call is most common, it is, in my experience that P has stopped eating to either change their situation or in some form of protest. That protest is not always what we would consider to be ‘political’ –  in fact that is relatively rare. 

A right to stop eating and drinking?

You will not find an explicit right in a statute which says that a person is permitted, or entitled, to stop eating and drinking. However, it is recognised by the law that an adult cannot be compelled to eat or drink if they have capacitously decided not to do so.

A helpful starting point is what Lord Goff said in Bland [1993] AC 789 at page 864:

“…the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so.”

A person cannot therefore be forcibly fed  (be it by enteral or parenteral fluids or nutrition), when they capacitously refuse. Baker J (as he then was) put it simply in Dr A [2013] EWCOP 2442 at paragraph 30: 

“… if Dr. A. has the capacity to make decisions as to whether to take food and drink, he is entitled to starve himself to death if he so chooses. The question is: does he have the capacity?”

Trying the door handle

I recently heard Professor Paul Menzel, Dr Hope Wechkin and Dr Peter Reagan talk about the development of the Clinical Guidelines for Voluntarily Stopping Eating and Drinking in the United States. During their presentation, Peter Reagan spoke about one terminally ill woman who had commenced VSED and then stopped. He used the analogy of her trying the door handle: he said it gave her great comfort to know that she could end her life in that way if she chose. That analogy struck a chord with me as Ps who seemingly voluntarily stop eating and drinking, then start again, have been an issue of concern in some cases before the Court of Protection.

Often the court is concerned with whether the person is making a capacitous choice not to eat and drink. In those cases, the capacity assessment will be focused on whether the person is able to make a decision as to their hydration and nutrition. In the assessment, the relevant information is focused on whether, functionally, the person is able to understand, retain, use or weigh, the consequences of not taking fluid or food. If there is a functional deficit identified, the assessor then has to determine whether that is caused by a disorder of the functioning of the mind or brain. That can be a difficult assessment. One such difficult case was PH. 

The PH case was blogged about frequently when it was before the court^[1] and ultimately a judgment was given by Hayden J (PH v Betsi Cadwaladr University Health Board [2022] EWCOP 16) that PH had the mental capacity to refuse hydration and nutrition. 

In this case, PH had a clear ongoing relationship with his treating clinicians, his lawyers and even the judge. Reading the blogs and the judgment, you will see how carefully his capacity was considered by the court. The court had a wealth of evidence in PH but that is not always the case.

In other cases, the issue of capacity has been more difficult or contentious:

In QJ a 87 year old man with vascular dementia stopped eating. In that case, P [QJ] did not answer certain questions put to him by his treating clinicians. Hayden J was keen to emphasise that the mere fact that someone has stopped eating does not mean that it should be concluded that they lack capacity to make that particular decision. 

In this blog , there is a report of where Williams J heard evidence and argument of 3 days in respect of a woman who was admitted to hospital having fractured her femur and then refused to eat. The reasons for her refusal were not articulated, at least in the blog.

In Nottingham University Hospitals NHS Trust & Anor v RL & Ors [2023] EWCOP 22, Sir Jonathan Cohen was faced with the scenario where nobody could engage P at all. The protected party, RL, a life sentenced prisoner, was in hospital having stopped feeding himself. His treating consultant psychiatrist assessed that he was “suffering from depression, and described him as virtually stuporous and mute. When she last saw him, he did not even flicker his eyes when she put papers in front of him and was not willing to communicate his wishes in any way at all. She described him as presenting as ‘quite shutdown.’” When the Official Solicitor’s representative tried to engage with him,  “he literally was not able to do so because RL would not come out from under the bedclothes; he remained completely invisible and would not engage in any way whatsoever.”

The other complicating feature that needs to be recognised when P stops eating and drinking is, that at some point, every P will lose the capacity to make decisions about their nutrition and hydration. Put simply, P will become unconscious or experience confusion or delirium with changes in the body’s chemistry and as organs shut down. At this stage, unless there is a valid and applicable advance decision to refuse treatment (ss. 24-26 MCA 2005), a best interests decision will need to be made. One of the matters to be considered in making that best interests decision will be  a person’s previous wishes and feelings as well as their values and beliefs. 

How the cases arrive in the Court of Protection

Just as in any other kind of case, matters involving a P who steps eating and drinking come to court when there is a dispute as to their capacity to make decisions as to hydration and nutrition, or, when there is a disagreement as to their best interests in this regard.

Whilst assessments in respect of P’s capacity to make decisions about to eating and drinking may be unusual, or practically difficult, the relevant law is relatively settled. This is reflected in the decisions above. The more challenging disputes will relate to P’s best interests.

The following issues need to be highlighted:

1. Unlike in the United States, there is no clinical guideline in respect of people who chose to voluntarily stop eating and drinking. Clinicians who are choosing to support this decision (they cannot be compelled to provide treatment) will likely want reassurance that the steps they are taking are lawful and comply with P’s capacitous (and uncoerced) wishes or that they are in P’s best interests;
2. Some cases have an abundance of evidence in respect of P’s wishes and feelings both before and after losing capacity to make a decision as to their hydration and nutrition. Not all cases do. In some cases, P simply stops eating and drinking and the explanation is unknown. It ought not be forgotten that P stopping eating and drinking can be simply a reflection of an untreated dental issue or the fact that they are approaching the end of their life in any event;
3. Section 24 of the Mental Capacity Act 2005 allows a person to make an advance decision in respect of specific treatment to be carried out or provided by someone providing, “health care”.  It is untested as to whether that could include spoon feeding someone or providing them with nutritional supplements.  There is at least an argument, considering the Court of Appeal’s decision in JJ, that it might. In that case, giving a quadriplegic person a boiled sweet equated to medical treatment;
4. Section 5 of the Mental Capacity Act 2005 does allow decision makers to conclude that a certain course of action is not in P’s best interests, even if that course (perhaps not to treat a particular injury, or not to escalate treatment for a disease)  would lead to their death: An NHS Trust & Ors v Y & Anor (Rev 1) [2018] UKSC 46;
5. In any situation where a person is indicating that they want food and this is denied, it is likely to be very problematic for clinicians or carers following the decision of the Court of Appeal in Burke.  

The wider context and the future

Later this year, on 31 May 2024, I will be speaking at the Medical Law and Ethics Discussion Group, Oxford University about how English and Welsh law handles people who stop eating and drinking as a form of protest. Earlier this year, I spoke at the 4th International Conference on End of Life and the Law “Ethics, Policy, and Practice” (ICEL4) at the S.J. Quinney College of Law at the University of Utah in Salt Lake City, Utah, U.S.A as to how our laws differentiate between patients and protestors in these circumstances. It is (I hope) a fascinating subject and one which is steeped in British legal history, going back to the Prisoners (Temporary Discharge for Ill-Health) Act 1913 (designed to deal with suffragettes on hunger strike) and beyond. But, in reality, it is representative of a very small cohort of cases that come before the court.

Much more challenging is how VSED fits into the wider public (and legal) discourse around assisted dying/suicide and whether it is seen as an adjunct to that argument or an integral part of it. Equally, there is alarm that the concept of mental capacity has been used in a way to deny treatment to suicidal patients and that some patients, simply due to issues with their communication or cognition, have not been able to access medical care for physical health issues.

Whatever the broader issues are in society, if P stops eating and drinking, careful thought needs to be given to their capacity and then (if appropriate) to their best interests. 

Ian Brownhill is a barrister at 39 Essex Chambers who specialises in mental capacity, medical treatment disputes and wider public law, regulatory and safeguarding issues. Ian has acted in a number of food refusal cases in the Court of Protection and in a number of inquest/regulatory/safeguarding matters where a person has stopped eating and drinking. 

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^[1] Hunger Striking for his Identity: Autonomy, Capacity, and Justice ; Capacity for Litigation, Residence and Care: Hunger-Striker (WA) back in court; “What is he saying to us?” The ‘voice’ of a hunger-striking man in a best interests decision about his medical treatment; A ‘secret’ hearing on life-sustaining treatment