Nov 06, 2020

“One happy year might seem a better option than three unhappy years at the end of life”: a human rights approach to meal times

 

How do we support older people to continue making choices about their own lives, even as they approach death?

This was a topic tackled by Professor Colleen Cartwright, Emeritus Professor and Chair of the Human Research Ethics Committee, Southern Cross University, at Friday’s Lantern Project’s 2020 Online Conference.

Professor Cartwright began by explaining there are more than 5,000 people over the age of 100 in Australia. Due to improvements in technology and medicine, many who would once have died are able to remain alive for long periods, she said.

The fact that people are living longer lives has created new practical, legal and ethical challenges, she said, and went on by outlining some of the key issues people working with older people encounter in relation to food and eating, and in general.

Older people have the right to refuse food 

For as long as they have capacity, older people must be given choice and control over the food they eat and how they eat it, Professor Cartwright said. 

Food and drink not only provides sustenance, but it is pleasurable and it creates a link with a person’s former life. 

Meal times also have an important social role. “For some residents, the main interaction they have with another person is when they are being fed,” Professor Cartwright said, suggesting that perhaps this is a role that could be conducted by suitable volunteers.

But older people also have the “right to… refuse” food and medical treatment if they wish.

It is only when someone no longer has the capacity to make decisions for themselves that a ‘substitute decision maker’, who is appointed by the person, can make decisions on their behalf, including about food. A substitute decision maker is usually appointed in an advance care directive.

People fear losing capacity more than death

Professor Cartwright said her research has shown people are more worried about losing their mental faculties and maintaining control over their lives than they are about extreme pain and even dying. “These things were of much more concern than death itself,” she said.

“One happy year might seem a better option to them than three unhappy years,” Professor Cartwright said.

If the person has the capacity, and they understand the risks, they must be able to make choices for themselves, and food is a key area they can maintain control, she said. “The person must understand the nature and the effect of the decision to be made.”

However, in residential aged care, this can present challenges.

A common example of where residents don’t have choice is in the temperature of the food they receive – for example, eggs are often served cold, she said.

In another complex situation, a resident might want to eat food that a dietician or nutritionist has advised them against eating. Say, a diabetic may want to eat sweet food.

People who have capacity must be able to communicate their decision, either by speaking or writing, or through body language, such as nodding or shaking their head.

According to the United Nations, people retain capacity until it can be proven otherwise. Incapacity must not be confused with ignorance, making a bad decision, eccentricity, failure to communicate or the diagnosis of dementia, Professor Cartwright said.

‘Putting down the spoon’ at the end of life 

Losing the swallowing reflex is a normal part of the dying process, and it is part of what prepares the body for death, Professor Cartwright explained.

As a result, people will often stop eating and drinking at the end of their life.

In Europe, they call it ‘putting down the spoon’.

“If the dying person does not want to eat or drink this should be respected,” said Professor Cartwright. “Even someone with advanced dementia might turn their head away or push away the food or the cup; this can be accepted as refusal.”

Families who insist loved ones continue eating and drinking, even when they are refusing, need information, support and counselling.

“It’s not okay to harm the patient in order to soothe the family,” Professor Carwright said.

PEG feeding can simply prolong the dying process

Artificial nutrition and hydration through a percutaneous endoscopic gastrostomy (PEG) tube is not appropriate for someone who is dying or has advanced dementia, she said. Sometimes it simply prolongs the dying process, rather than prolonging life.

“The human orgasism, when death is approaching, releases endorphins, a natural high, they become euphoric. If you provide artificial food, it doesn’t allow the body to do that,” Professor Cartwright said.

(However, she said it may be appropriate for someone with compromised swallowing, especially if they have capacity and it contributes to their quality of life.)

PEG feeding is also “not appropriate” if the main reason it is being used it is being used is to save staff time.

When the person no longer has capacity

Advanced care planning and having a substitute decision maker can help to ensure that the person’s wishes are respected, even when they no longer have capacity, Dr Cartwright said. She herself has appointed a “feisty” person to ensure her wishes are carried out, she said with a smile.

An advance care directive is a legally binding document that allows a person to make their wishes for future healthcare to be known. It only comes into effect when the person loses decision-making capacity. An advance care directive can appoint a substitute decision maker to make personal or healthcare decisions on the person’s behalf in the situation the person loses their capacity. 

When a new resident enters an aged care home, one of the first things the home should do is encourage the person to write an advance care directive. One it is written, it should immediately be documented to ensure it is enacted upon if and when it is needed.

 

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  1. The end of life and the right to choose is extremely hard and be able to put down the spoon should be a right for all residents. Families and carers need to be aware and have education and support on the dying process and how the body process works. I have often seen families want PEG feeding and other medical interventions but not understanding that it prolongs the death and does not give the person quality of life.
    Choice, Advance Care planning and education if needed. Death and palliative care are still taboo subjects and yet often are the most important for the person.

    1. Dieticians and speech therapists often cause confusion and anxiety with relatives preventing good EOL care. Clearly worded ACP are extremely helpful in traversing this minefield. Educating the public through participation in death and EOL topics is paramount to increase understanding and literacy around death.

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