The law is clear that someone can legally refuse food and water. However, the experiences we hear about on our helpline suggest that the support people get can vary.
Voluntarily stopping eating and drinking (VSED)
Voluntarily stopping eating and drinking (VSED) is when someone with mental capacity decides to hasten their death by stopping the oral intake of all food and fluids.
VSED is not the same as the common loss of appetite that happens when someone is dying. Eating and drinking less are signs that someone may be in the last months and weeks of their life and is a normal part of the dying process.
VSED is different. It’s when someone makes a deliberate decision to stop eating and drinking with the intention of controlling the manner and timing of their death. It’s a process which should have support from healthcare professionals so that symptoms are well managed
The law on VSED in the UK
VSED is legal in the UK. The Supreme Court has clarified that an adult with mental capacity can legally refuse food and water even if this will lead to their death.
The Supreme Court also made it clear that doctors are able to give patients advice about the clinical options available to support a decision to VSED. This includes things like sedation and other palliative care.
Read what the Supreme Court said
In R v Ministry of Justice [2014] UKSC 38 the Supreme Court recognised that:
‘A person who is legally and mentally competent is entitled to refuse food and water, and to reject any invasive manipulation of his body or other form of treatment, including artificial feeding, even though without it he will die’.
The Supreme Court also said that doctors have a duty to provide this kind of advice, and provided reassurance that:
‘The doctor is in no danger of incurring criminal liability merely because he agrees in advance to palliate the pain and discomfort involved should the need for it arise’.
Important
Many people, including healthcare professionals, do not know much about VSED or the support someone may need during the process.
VSED is not an easy process – mum was forced to endure, not one but two battles: foregoing food and water and also convincing professionals that she wished to die the way she lived – on her own terms.
Mary, 51
We know from the experiences of people who contact us that some people feel well supported by healthcare professionals to discuss VSED and are given high quality care and symptom management.
But many people have negative experiences including:
- doctors refusing to discuss it
- being wrongly detained under the Mental Health Act
- struggling to get the right support and symptom management
Information for doctors
The British Medical Association (BMA) provides guidance for doctors on caring for patients who elect to voluntarily stop eating and drinking to hasten death (VSED).
In the USA there are clinical guidelines for VSED published in the Journal of Pain and Symptom Management.
VSED and mental capacity
The law says that all adults should be assumed to have mental capacity to make a decision about their medical treatment, unless there is reason to suggest otherwise.
What is mental capacity?
Mental capacity is the ability to make a decision for yourself.
While you have mental capacity you have the right to make decisions about your medical treatment and care. You can choose to refuse or consent to treatment.
The law in England and Wales says that someone’s mental capacity should be assumed, unless there is reason to question it. For example, if they have had a brain injury or a diagnosis of dementia. If there is a doubt about a person’s capacity, then an assessment of their capacity will be carried out.
You must be able to do all four of these things to demonstrate mental capacity to make a decision:
- Understand the relevant information
- Retain the relevant information for long enough to make a decision
- Weigh up and use the relevant information as part of making a decision
- Communicate the decision once you have made it
Mental capacity is time and decision specific. This means that someone may have the mental capacity to make some decisions but not others, and their capacity to make the decision needs to take place, at the time that the decision is being made. For example, someone with advanced dementia may have the mental capacity to decide what they want to eat that day, but not to make a decision about refusing CPR.
In Scotland and Northern Ireland the principle of mental capacity is similar, but they have their own definitions. The Office of the Public Guardian in Scotland has a helpful definition of incapacity on their website. The Department of Health NI define mental capacity in their Code of Practice (PDF, 2.8MB).
If there’s a concern about your mental capacity, it’s possible your GP or another healthcare professional may want to do a formal capacity assessment before supporting you with VSED.
The professionals may also be concerned about your mental health, so they may want you to be seen by a psychiatrist or have a Mental Health Act Assessment. In some cases professionals may decide you meet the criteria for detention in hospital. This is also known as being ‘sectioned’.
If you or someone you know has been sectioned under the Mental Health Act after talking about VSED, our specialist nurses may be able to explain what’s happening.
Vicky’s experience supporting her dad with VSED
“My dad was 84 when he died by VSED. He suffered a stroke 10 years ago and had deteriorated since. He decided that he wanted to stop eating and drinking because he felt his life was no longer worth living, and, to be sure that no one was implicated in assisting his death, he called a lawyer who in turn called his GP, to record a conversation about it all. The GP confirmed his capacity but thought he needed a psychiatrist too.
A few days later, three people arrived and sectioned him.
Dad was sectioned for a full 7 days. When he returned home, he lived only another 7 days.
My parents were both devastated by the fact that a full week at the end of Dad’s life was spent inappropriately incarcerated in a psychiatric ward, despite him being mentally sound. I am angry that Dad was unable to spend all of his dying days at home which was his wish. It was so unfair and frightening that he was taken off like that after he had a rational and clearly thought through conversation with a doctor and lawyer.”
Dying from VSED – what to expect
The process of dying from VSED can be different depending on the person. Guidance from the British Medical Association and Journal of Pain and Symptom Management describes three stages of VSED:
- Early stage. The person is alert and still able to interact with people. They can manage or be distracted from occasional hunger pangs and increasing thirst and dryness in the mouth.
- Middle stage (often the most difficult). The person will become increasingly dehydrated which will lead to weakness, fatigue and longer periods of sleep. They may also suffer from:
- muscle soreness and pain
- agitation, confusion, anxiety, restlessness, hallucinations and delirium
- seizures
- nausea and vomiting
- Late stage. By this stage death is expected within a few days. The person will be unconscious as the organs shut down. Near death the person will show the normal signs of dying including changes in breathing, cold hands and feet and changes in the colour of skin.
Symptoms from VSED
When someone is dying from VSED there are a number of symptoms that need careful management by healthcare professionals and carers so the person remains comfortable throughout the process.
Important
It’s important to discuss the range of symptoms and a plan to manage them with a healthcare professional before any attempt to start VSED.
Guidance from the British Medical Association includes the following symptoms which may help guide the conversation with a healthcare professional:
- hunger
- thirst and dryness in the mouth
- dehydration
- muscle soreness and pain
- risk of falling out of bed
- agitation, confusion, anxiety and restlessness
- delirium and/or hallucinations
- seizures
- nausea and vomiting
How long does it take to die from VSED?
Dying from VSED can typically take between 10 to 14 days, but the exact process will be unique to each person and depend on their physical condition and if they decide to temporarily eat or drink at any point. For people who are not living with an advanced or progressive condition, dying by VSED can take much longer.
Talk to your doctor about VSED
Before deciding if VSED is something you may want to do, you could speak to your local hospice or GP. It’s important to find out if they will support you with VSED.
Sometimes healthcare professionals may be comfortable with the idea but not clear on specifically how they will support you.
Prepare for a difficult conversation
It’s possible the healthcare professional you talk to will not be familiar with VSED. It can be a difficult topic for healthcare professionals. Many are anxious about the legality and ethics of VSED, which can mean they are not comfortable talking about it with their patients.
Important
We would be very concerned about anyone attempting VSED without clinical support. In some cases we may consider making a safeguarding referral if someone chooses to start VSED without clinical support.
Because VSED is a process which needs clinical support, it’s important to make sure everyone:
- is clear about your wishes
- knows about the law on VSED
- agrees on a specific plan to support you (including any anticipatory medications)
Preparing for VSED
If you’ve decided to go ahead with VSED and have the support of healthcare professionals, then there are some things you may want to have in place before starting.
You can make a living will (advance decision) to refuse clinically-assisted nutrition and hydration (CANH).
What is clinically-assisted nutrition and hydration (CANH)?
Clinically-assisted nutrition and hydration (CANH) is given when someone has a medical condition that means they are unable to swallow, and so cannot eat or drink. If it is not provided, a person will die. With it, some people could possibly go on living for a long time, in some cases, many years.
CANH involves giving a person a liquid that contains nutrition or hydration. This can be given through a tube through the nose, a tube directly into the stomach (PEG feed) or an intravenous drip (directly into a vein). It is different from helping people to eat or drink by mouth, for example spoon-feeding or helping someone hold a cup to their mouth.
Although some people do not see a difference between clinically-assisted nutrition and hydration and helping someone to eat or drink, the law is clear that CANH is a form of medical treatment. It can only be given to someone who lacks mental capacity if it’s in the person’s best interests.
An advance decision refusing CANH is legally binding in England, Wales and Northern Ireland. In Scotland, an advance directive (as they are more commonly known) is not legally binding, but doctors often recognise and follow them.
A living will (advance decision) refusing the offer of ordinary food and drink by mouth is unlikely to be followed. This is because the offer of food and water by mouth is considered part of basic care to keep someone comfortable.
You may also want to make an advance statement. It’s not legally binding on doctors, but it can help make your wishes clear to your healthcare team once VSED has started.
Sandra’s experience supporting her dad with VSED
Her dad had Parkinson’s disease and decided to refuse food and water towards the end of his life when his condition deteriorated. He was 86. He discussed his plan to stop eating and drinking with his palliative care consultant who prescribed some sedatives. Sandra explained:
“One of the nurses said, ‘We need to ask if he wants his food,’ and they brought him a tray of a three-course meal at one point, like a pantomime. He had to be the one to say he didn’t want any food. He said, ‘Please, I don’t want any food’. They said, ‘We have to offer it to you every time’ and he found that irritating.
Of course he was hungry and he was being presented with food he didn’t want. I think the staff found it incredibly difficult. I think they were worried about being sued.”
In an advance statement, you can:
- explain why you’ve decided to stop eating and drinking
- say what you want your healthcare team to do if you ask for food or drink during VSED
