Can autonomy become neglect?

[Posted on 15 October, 2020 by Lena Nylander]

The Swedish Act concerning Support and Service for Persons with Certain Functional Impairments was implemented over 25 years ago and has since then had a major impact on many people’s lives. Its purpose is to provide help and support to individuals with various impairments so that they may lead lives like others, as willing, autonomous participants in society. These services must be requested, either personally or through a representative, and one can always refuse whatever support is not wanted or needed. Many have had their lives significantly improved, especially people with disorders in category 1 (intellectual disability, autism and conditions resembling autism).

Some people in category 1 have moderate, severe or very severe intellectual disability and many of them have concurrent autism. These individuals have major cognitive difficulties, including difficulty and often even inability understanding context and the bigger picture, comprehending consequences and the passage of time, as well as surveying and assessing options. Many lack communicative language, but many can immediately express their will or reluctance in ways that their environment can learn to understand.

All staff working with adults in group homes and daily activities tend to be informed that the care users’ autonomy must be respected at all times. Naturally, personnel must never exercise any kind of physical coercion, but where should the line be drawn in the other direction? From time to time – not so rarely, in fact – care users are left to their own devices, forced to rely on very poor judgment when making important choices. Should personnel help these individuals do things that are obviously hazardous to their health? If someone has diabetes and wants to eat sweets, should they be allowed to do so even when they cannot grasp what it might lead to?

Many care users get antipsychotics, which, without a healthy diet or adequate exercise, will eventually cause a so-called metabolic syndrome or diabetes. How much and in what way should staff support a healthy lifestyle even when the care user prefers to sit still and eat junk food? There is a growing consensus that people with Prader-Willi syndrome (a chromosomal abnormality where the person cannot regulate their food intake and therefore risks extreme obesity) need support in order to not literally eat themselves to death, but there are many others with disorders suffering from malnutrition and severe overweight.

How can staff urge care users who do not see the point of being clean to engage in personal hygiene anyway? Filth and foul odour often lead to exclusion and thereby less participation in society. Should care users choose clothes and shoes themselves, or should staff present options suited to the weather and activity? Should personnel always help maintain oral hygiene, and whose fault is it if care users get cavities due to sloppy toothbrushing? How much responsibility can care users take for their own “choices” – do they even understand what it means to choose, what their options are and what the consequences might be?

Staff sometimes ask care users what they want to do in different situations and whether they want to participate in various activities. Many people with moderate/severe intellectual disability and autism virtually always say no to these questions – either because they have learned that it tends to be the safest choice (especially when they have not understood the question) or because it is the most comfortable option. It might also be the most comfortable option for the staff, as it means they do not have to do anything. Moreover, one might argue that the care user chooses to gain weight, get cavities and end up in bad shape by opting for a lifestyle leading to such consequences.

Getting – but obviously never forcing – people with moderate/severe intellectual disability and autism to live in a way that keeps them healthy, active, happy and involved is often no easy task. The key is motivation and finding ways to make daily routines more palatable: healthy food should be appetising, physical activities should be fun and getting help with personal hygiene should be a natural and respectful part of everyday life. Above all, one should not put the care user in a position to make choices they are not equipped to understand and handle. The fact that the individual lives in a group home and/or has daily activities is precisely because their disorder causes them to struggle with things like everyday choices.

Staff face situations presenting these sorts of ethical dilemmas every day, and handling them requires open discussion and support. Relatives and/or representatives should also participate in these discussions, not least because care users are unable to complain about a lack of support. When a person’s capacity for autonomy is overestimated to the point that they no longer get the support they need to live a good and healthy life, the result is a kind of reverse neglect.

[This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.]