Autonomy in end-of-life care for people with intellectual disabilities

Respect for autonomy can be interpreted as minimising interference by others. However, for people with intellectual disabilities who are in the final phase of life, other people are in fact very important when it comes to respecting the autonomy of the person concerned. It is the caregivers and family who give these people a voice. This is what has been reported by researchers from NIVEL and VUmc in the Journal of Intellectual Disability Research.

During the end-of-life phase of a person with an intellectual disability, caregivers and family often find it particularly difficult to take account of that person’s wishes and autonomy. They want to give the very best care, but wonder just how this can be done. Sometimes they choose to protect the one who is ill and avoid discussions about their last wishes and impending death. The person’s intellectual disability makes it more difficult to talk about illness and death and to get a clear picture of what is wanted and needed in terms of care and information.
‘Discussing it properly’
“Caregivers and family of people with intellectual disabilities sometimes think that their loved ones are unable to understand their situation and unable to think things through and make decisions,” says Nienke Bekkema, a researcher at the Netherlands Institute for Health Services Research (NIVEL). “It’s often because they want to protect that person. Our research shows, however, that they are able to use the relationships they have positively. This doesn’t always mean they can discuss the issues together properly, but they can involve their loved one as much as possible in the end-of-life care they will need, thus giving them a voice.”
In order to respect a person’s autonomy properly, people need some special qualities. For example, you have to be able to pick up the signals and changes in behaviour that allow you to interpret what the ill person with an intellectual disability needs, wants and prefers. And you have to be able to give that person information in a way that is right for their level of understanding. In addition, being able to deal with the person’s wishes and needs that may clash with those of the caregivers and family is a desired quality.
Showing the way
The study also shows how you can let someone’s voice be heard, even if they have difficulty expressing what they want. This can, for example, mean fitting in with their way of communication, such as when the family of a man with a severe intellectual disability explained it to him: “You point out which way to go when we’re walking. And you can do the same thing now, for dying. You have to say it yourself. Jos is a big boy and Jos can say for himself how he wants to die. And it’s allowed. You are allowed to die.”
A book of last wishes
Or there is the case of a man who had earlier made a book together with his caregivers that outlined his final wishes. Later, when he became even more ill, he made it clear that he was no longer satisfied with the book. He had the feeling that the book had largely been completed by other people. Step by step, together with a social worker, he filled things in again in the book until he was happy with it. In the end, it turned out to be just the same as before, but the man was now satisfied because he had the feeling that he had done it himself.
The researchers interviewed 47 caregivers and close family members of twelve people with intellectual disabilities who had recently died. For this study, the researchers looked specifically at statements that touched upon the autonomy of the deceased. Their results fit in with a care-giving/ethical vision of autonomy that, unlike the liberal vision, is based upon the strength of relationships instead of focussing on as little interference from others as possible.

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