Clinically assisted’ (or ‘artificial’) nutrition and hydration refers to providing nutrients and fluid to a patient who cannot swallow.
Treatment is provided by a tube into the patient’s stomach. In the early stages after injury a tube is usually inserted into the patient’s stomach through their nose and down their throat (a nasogastric tube) but for long-term treatment, there is usually an operation to enables the tube to go directly through the stomach wall. This may be referred to as a PEG (Percutaneous Endoscopic Gastronomy) or RiG (Radiologically Inserted Gastrostomy).
Although some people see providing clinically assisted nutrition and hydration as basic care, it is classed as a medical treatment in law, and, like any other treatment, should be provided only if it is in the patient’s best interests.
In many cases where there has been a devastating brain injury, a decision is made in critically ill patients that providing life-sustaining treatments (such as cardiovascular or ventilatory support and CANH) is not appropriate, because the injuries sustained are clearly not compatible with survival or functional recovery.
Sometimes severely brain injured patient are maintained longer to allow for further assessment – but doctors then decide that the injury is so bad that treatment is futile, or families decide that there is already sufficient information to know that the person would not want a feeding tube.
If it is agreed that a feeding tube is in the patient’s best interests at the start this should be a ‘time-limited’ trial for no more than 6 months in the first instance. As with any other treatment, there should be a regular re-assessment (at least annually) to explore whether continuing with CANH is still in the patient’s best interests. This should look closely at whether or not the patient themselves would have agreed to this treatment in the circumstances.
Guidance produced by the British Medical Association and Royal College of Physicians, endorsed by the General Medical Council (2018) underlines the duty of treating clinicians to hold formal, documented, best interests meetings with those who care for the patient and are interested in his or her welfare.
The guidance specifies that meetings: “should begin as soon as possible and within four weeks of the original injury. It is not necessary to wait until a formal diagnosis has been made, or patients have reached their full potential for improvement, before beginning to discuss their likely views about continuing CANH. Beginning those discussions does not mean that a decision must be made imminently but will ensure that those close to the patient are aware of the options available and can begin to think about, and discuss with family and friends, what the patient would want and to share those views with the treating team.”
Such meetings are both to share clinical information about the patient’s diagnosis and prognosis (which should also have been assessed by an independent expert), and to elicit information about the patient’s values, wishes, feelings and beliefs in order to decide whether it would be in the patient’s best interests to continue to provide CANH. Accurate information should be provided about how death following discontinuation of CANH would be managed.
The following questions can be helpful to frame the clinical assessment needed for decision-making about CANH in patients who are not imminently dying:
- What is his/her current condition?
- What is the quality of his/her life at present (from his or her perspective)?
- What is his/her awareness of the world around him/her?
- Is there any (or any significant) enjoyment in his/her life? If so, how can this be maximised?
- Does he/she experience pain and/or distress and if so, is it appropriately managed?
- What is his/her prognosis, if CANH were to be continued?
- Is there any real prospect of recovery of any functions or improvement to a quality of life that he/she would value?
- What is the prognosis if CANH were to be discontinued?
- What end-of-life care would be provided?
(Box 4, page 29, Guidance on CANH and adults who lack the capacity to consent)
In many cases, family members and clinicians are able to reach an agreement about the patient’s best interests. In such cases, where nobody believes that continuing CANH is in the person’s best interests, it can be withdrawn without involving the Court.
Health professionals who have conscientious objections to discontinuing CANH have a responsibility to recognise this as a potential conflict of interest; this should be declared prior to beginning discussions within the healthcare team or with those close to the patient. If individual clinicians could not sanction a best interests decision to withdraw CANH, they should hand over the care of the patient to a clinician who could.
Where, however, a health professional does not disagree in principle with the withdrawal of CANH but believes, in a particular case, that it is not appropriate, this should lead to further discussion and, where appropriate, a further clinical opinion being sought. (see section 2.4 in the Guidance)
If, after further discussion, second opinions and (possibly) mediation, family and treating clinicians are unable to agree about whether continuing CANH is in the patient’s best interest, the hospital Trust or CCG must make a speedy application to the Court of Protection so that a judge can decide the matter.
Emma reflects on the decision to insert a feeding tube into her severely brain injured mother. This kept her alive in a vegetative state for several years.
Decisions about clinically-assisted nutrition and hydration [CANH] generate strong feelings. There may be concerns about providing it at all shortly after catastrophic injuries, with some people believing that it would be better not to extend the patient’s life at that point.
There are often strong views later about whether or not CANH should be withdrawn from patients who have received it, or whether it is in the patient’s best interests to replace feeding tubes that have dropped out, or perished. A range of views was represented by those we interviewed.
- Some people we spoke to were opposed to withdrawing any life-prolonging treatments from their relative because they believed the person would have wanted to be kept alive.
- Some would consider withdrawing such treatments in the future, but felt it was too early to contemplate such decisions.
- Others thought that many (potentially) life-prolonging treatments should be withdrawn (e.g. ventilation) but felt strongly that it would never be acceptable to discontinue CANH, even though they believed that their relative would not want to be alive.
- Some people we spoke to had come to view that discontinuing CANH was the ‘least worst’ option for their relative.
Mark’s brother has been unresponsive for 3 years, but Mark believes it is too early to contemplate withdrawing ANH.
Mark and Helen view withdrawing ANH as very different from switching off a life support machine such as a ventilator.
Some interviewees thought that considering withdrawing clinically-assisted nutrition and hydration from the person they loved, could be an act of caring and courage.
Kevin felt that there was more love in withdrawing his son’s feeding tube than in letting him be sustained indefinitely in a permanent vegetative state.
Miggy feels it was courageous to take responsibility and decide to ask if the feeding tube could be withdrawn
Some interviewees were horrified at the idea of discontinuing CANH, partly because they saw it as a deliberate act inevitably resulting in the patient’s death and partly because of the moral status of ‘food and water’ .
By contrast, other people think of tube feeding as an active intervention, imposing something on a person which might get in the way of the natural end-of-life process.
She could not contemplate withdrawing artificial nutrition and hydration as she saw that as an active decision to make her mother die. However, Emma did agree to withdrawing stroke medication.
Cathy originally thought her brother continued to survive, because at some level he wanted to be alive. She now sees this rather differently.
Interviewees were often concerned that, even with a confirmed vegetative diagnosis, it was possible that their relative would experience pain and suffering following treatment withdrawal. But some were reassured when they gained extra information, or witnessed what happened when a feeding tube was withdrawn. Fern describes how her partner has repeatedly been close to death from a series of cardiac arrests and infections and she would now like him to be allowed to die, including, if necessary, following the withdrawal of his feeding tube.
“If he got very ill, which he will do again, he will that’s inevitable. I would support the decision at this point to remove it and I would be very emotional and, yes I would be up there and I would wait with him. It can take a week I’ve heard, so you know. It sometimes takes two. People just, you know, it does take… but I know he’s going to go. There’s not a miracle coming for this, this is the way it’s going to go. And I support that, because I believe that’s what he wants. I feel he’s had enough”.
Helen, who at first rejected the idea of discontinuing CANH, came to think it was the best option.
Helen, like some other people we spoke to, initially resisted the idea of withdrawing artificial nutrition and hydration from her son but came to reassess this.
Although it should always be the Trust or CCG who initiate legal proceedings, this does not always happen. We interviewed several people who had been forced to initiate court proceedings to challenge the continuation of CANH for their relative. (Note: at the time of these interviews all decisions to discontinue CANH from PDoC patients had to go to court, even when there was a consensus about the patient’s best interests).
Although each of these interviewees saw withdrawing CANH as the best course of action in the circumstances, they also felt that there should have been another way of allowing the person to die.
Gunars and Margaret actively pursued ANH withdrawal because it was the only legal option, but comment that pets and farm animals are treated better.
Cathy fought to ensure her brother’s feeding tube was withdrawn, but she also says prisoners on death row get a better death.
Relatives often observed that death following CANH withdrawal was not as bad as they had anticipated. Indeed, It often seemed peaceful. It was noticeable when we compared accounts of different ways in which patients had died that this seemed to be ‘better’ than some of the other ways of dying (see ‘Death and Dying’). David and Olivia are clear that David’s mother died painlessly and peacefully after CANH was discontinued – which everyone had agreed was no longer in her best interest. (Note: this couple is reporting on a decision made before 2018 – hence the application to court inspite of the consensus). David and Olivia are glad they had the courage to advocate for David’s mother and believe this prevented her from what, they believe, might have been a worse death if CANH had been continued.