Nov 06, 2017

Dementia Patients That Refuse Spoon-Feeding: Human Right or Legal Risk?

Some people don’t like the idea of being kept alive through the use of feeding tubes or other kind of artificial nutrition and hydration.

And these same people could prevent this from happening by having an advance care directive- clear instructions of their wishes to not be fed or hydrated in such a way if they do not wish to be.

There is a similar serious concern for people living with dementia, who may eventually lose the ability to feed themselves – and would rather not be kept alive if that were the case.

However, being spoon-fed food was not considered in the same as being artificially fed by tubes. And therefore, could not be included as a crucial end-of-life decision that is practiced.

However, this may have changed in the United States – and could eventually be seen in other parts of the world too. 

In Washington, a state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life.

Titled “My Instructions for Oral Feeding and Drinking”, the guidelines include clear directives for when “ I become unable make decisions about my health care and I stop feeding myself due to Alzheimer’s Disease or other progressive dementia”.

It states that “if I accept food and drink (comfort feeding) when they’re offered to me, I want them. I request that oral food and fluids be stopped if, because of dementia, any of the following conditions occur” followed by example of being indifferent to feeding, spitting food out, and turning away from being spoonfed.

The guidelines are a message on the behalf of the resident to medical and long-term care providers, caregivers, family, and other loved ones as a request to honour their wishes.

“We get calls from folks with concerns about dementia and concerns about the fact that loved ones with dementia feel like they’re being force-fed,” says Sally McLaughlin, executive director of End of Life Washington.

“Many, many folks understand that as they stop eating, they would like no one else to feed them.”

However, there is also criticism of such “right-to-die” efforts, as there is the feat that – though they start out narrowly defined and applicable to a small percentage of the population – they will become common practice and lead to negligence.

“No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink,” the document states. It adds that the “reflexive opening” of the mouth should not be interpreted as consent to eating.

It should be noted that these new “instructions” are by no means legally or ethically binding. In fact, in an overwhelming majority of states in the US, it is prohibited to withdraw oral food and fluids from dying people.

Another challenge with these kinds of advance directives, is that though a person can state their wishes that are to be honoured – it doesn’t mean the family, the facility, or the involved medical professionals will follow it.

Looking closer to home, could similar initiatives be put in place in Australia?

Dr Rodney Syme, the vice-president of Dying With Dignity Victoria, wishes for similar instructions for himself.

“If I have dementia and I am unable to feed myself,” says Dr Syme, “then I do not want anyone feeding me. I would just like to be left alone, and eventually to pass”.

“People have this misconception that if an elderly person is not eating and drinking, then they are in great pain and are starving to death”.

“But as long as you keep the lips and mouth moist and they are relieved of pain, then there isn’t a great deal of suffering”.

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  1. Thanks for the important considerations

    I would be happy to support the line of thinking if we passed 3 important bridges

    1 We have to be 100% sure that our own prejudice is not part of the consideration. Quality of life is a very personal experience and vary dramatically through the stages of life. The frame of reference of a child, an economically active adult and a patient living in the unique world of dementia are worlds apart. “Validation” by carers and family referring to a social standard or prior/other stages of life could be not only unfair but also inhumane.
    2 Dysphagia is very common towards the end stages of dementia and the fear of the agony of aspiration should not be under estimated. Turning the head away, spitting or clenching the jaw could indicate a will to die, but food residues in the retro pharynx, a prior experience of aspiration or clinical depression can present in exactly the same way …
    3 Depression as a symptom of dehydration and malnutrition is probably part of the clinical presentation in >90% of patients in the end stages of dementia. I believe this is made much worse by the negative body language of carers and family. This can be turned around dramatically by a positive and friendly attitude and proper hydration and nutrition. We expect that many new feeding devices to address the different stages of dysphagia will appear in the market over the next 10-20 yrs., targeting independence, optimal safe feeding and regaining dignity.

    Some of the happiest patients I have met were experiencing the later stages of Dementia – intrigued by a new reality that was fully accepted and positively supported by carers and family.

    Dr Gawie Roux
    Managing Director, Lifemere

  2. At the end of my mother’s life she absolutely refused to be spoon fed. She would not drink. Even though she had advanced dementia she was clear about this. She even turned her head away when I tried to moisten her lips with an ice block. There is no way I would have prolonged her misery by having her tube fed and intravenously hydrated.


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