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Celia Kitzinger 12 December 2018

Clinically Assisted Nutrition and Hydration – new guidance for doctors

Celia has worked on issues surrounding decision-making and mental capacity for many years, and was a member of the core group who produced the new guidance published today
Guest post Healthcare professionals

Today sees the publication of important new guidance from the British Medical Association and the Royal College of Physicians, endorsed by the General Medical Council.

The guidance advises doctors when they’re making decisions about providing or not providing life-sustaining nutrition and hydration via feeding tubes for adults who have lost the ability to decide for themselves.

Any of us can lose this ability — sometimes slowly, as a result of advancing dementia or disease of the central nervous system — but often suddenly, perhaps as a result of a severe stroke or traumatic brain injury after an accident or assault.

Why this matters to me

As a Co-Director of the Coma and Disorders of Consciousness Research Centre I have supported dozens of families with a relative in a vegetative or minimally conscious state who is being treated with Clinically Assisted Nutrition and Hydration. This guidance will make a huge difference to their lives.

What I mean when I talk about Clinically Assisted Nutrition and Hydration

Clinically assisted nutrition and hydration (CANH) is a medical treatment sometimes used when people have difficulty in swallowing. It involves inserting a tube into a vein, through your nose, or directly into your stomach and using it to provide a liquid formula feed. It does not include spoon feeding or any other way of providing food and liquid by mouth.

Deciding whether you receive CANH

When you have capacity to make your own decisions you can decide for yourself whether or not to accept CANH. You can discuss it with your family and doctor, think through the risks and benefits, and you can decide to start or stop at any point.

If you lose the ability to decide whether or not to have CANH (e.g. because you have a deteriorating neurological condition or a sudden onset injury) then, under English law, your doctor will then make the decision for you. That is, unless you have already appointed a Health and Welfare Attorney or completed a valid and applicable Advance Decision.

Next of kin have no decision-making rights.

Now, let’s examine two of the important points from the new guidance in some more detail:

1. Doctors must make decisions about CANH instead of waiting for family to raise it

This new guidance lays out what doctors should consider when making a decision in the best interests of the individual patient.

Doctors should ask family members and friends about the person’s values, wishes, feelings and beliefs and find out how the person lived their life and the sorts of things that mattered to them.

In my experience, with patients in vegetative or minimally conscious states, a feeding tube is often inserted in the days following brain injury. Doctors then treat CANH as if it were basic care, and never discuss it with families again. The person is moved to long-term care and the GP writes a prescription for formula feed every month without questioning it.

Treatment is given by default, with nobody taking responsibility for deciding whether or not treatment is in the person’s best interests.

Most families tell me that doctors have actually never asked them about whether the person would want to receive CANH.

Sometimes this is because doctors don’t think it’s their place to raise questions about a feeding tube decided upon by a different doctor earlier in the patient’s medical care.

Sometimes it’s because they are afraid of upsetting the family by even mentioning that CANH could be withdrawn.

Sometimes it’s because they have conscientious objections to withdrawing CANH.

I recently attended a formal best interests meeting with family members where two doctors refused to discuss withdrawing CANH on the grounds that it would be “unethical” and “equivalent to euthanasia”.

I’m really pleased that the guidance emphasises the importance of doctors taking responsibility for making best interests decisions about CANH. It says families must be told the name of the doctor who is the ‘decision-maker’, and that decisions about CANH must be reviewed regularly.

It also requires doctors with conscientious objections to CANH-withdrawal to declare their views and to hand the care of the patient over to colleagues. This is really important for ensuring that decisions are made in the patient’s best interests — explicitly and transparently.

2. Doctors must put the person’s wishes at the centre of decision-making

The guidance sends a powerful message: Decisions about CANH need to put the patient’s own values and wishes centre stage. The decision-maker should aim to make the decision that the patient themselves would have made in this situation.

In the past, I have watched doctors make decisions based on their own values and wishes, ignoring the attempts of families to convey what the person might have wanted.

I have seen doctors tell families that they have to wait for a year after the accident to get a diagnosis confirming that the vegetative state is “permanent” before they will consider withdrawing CANH.

I have watched a doctor say that someone with a diagnosis of the “minimally conscious state” must receive CANH for five years to see if they recover.

All of this is untrue — and has always been untrue.

The emphasis on diagnosis is misplaced — diagnosis matters only if the person themselves would have said something like, “if I’m in a vegetative state, I’d like you to wait for a year to see if it’s permanent before you withdraw treatment”. Some people might say this — but many wouldn’t.

What matters most is usually whether or not the person is (realistically) likely to regain the ability to recognise family and friends, or be able to communicate, or even live independently again. Will the person recover to a level that (for them) would be ‘quality of life’?

The new guidance tells doctors that they must ask the person’s family and friends what they think the person would have wanted.

For some people ‘sanctity of life’ is an important value and they’d want to continue receiving treatment that could extend their life no matter what. Others would be horrified at being kept alive once they were no longer able to make important decisions for themselves, or would not want their life extended artificially if they can no longer recognise and interact with people they love.

The main point here is that different people want different things, and the guidance makes it clear that the person’s wishes must be the main factor when doctors make such decisions about CANH. Of course sometimes there is disagreement about what the person would want, and then — if second opinions or mediation do not resolve things — the medical authorities need to apply to court so that a judge can decide.

Although it’s written for doctors, if you are a Health and Welfare Attorney for someone who is receiving CANH (or you think they should be), this guidance will help you too. There’s also a booklet for family and friends.

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