Unthinkable: Should we always put human rights first?

‘Empowerment is crucial for people with impaired capacity’ but it isn’t the only thing of value, says Prof Mary Donnelly

‘There are a lot of questions about how empowerment can operate for someone with advanced dementia.’  File image: John Stillwell/PA Wire

‘There are a lot of questions about how empowerment can operate for someone with advanced dementia.’ File image: John Stillwell/PA Wire

 

We have come a long way from the days when people with impaired capacity were locked away in hospitals or asylums. Ireland once led the world in this practice, and even in 1961 – as psychiatrist Brendan Kelly records – one in every 70 Irish people above the age of 24 was placed in a psychiatric hospital.

Paternalistic attitudes have been succeeded by a more enlightened human rights-based approach, characterised by an emphasis on “empowering” individuals with an intellectual disability, mental illness or dementia to control their own lives. But are people’s best interests always served by insisting on the recognition of rights?

In a recent article, for example, campaigner Steph Booth wrote about decisions she has made for her husband, actor Tony Booth, who has Alzheimer’s disease, arguing that sometimes it is better to override his consent as “I know my husband better than anyone”.

Prof Mary Donnelly of UCC, author of Healthcare Decision-Making and the Law, has a research specialty in this field. She believes there are “aspects of the liberal conception of autonomy” that need to be re-examined. In particular, she says, more attention needs to be paid to how dementia or an intellectual disability is experienced by the individual herself or himself. This means finding a role for phenomenology – the study of sensations and experience – in deliberations about medical law.

As Donnelly puts it, “thinking in rights terms alone – without the human’ component – is too narrow”. Without a focus on first-hand experience, “important realities may be subsumed within the abstraction of human rights norms”.

What are the limits of a human rights-based approach to ethical deliberations about impaired capacity?

“I should say at the outset that there are undoubted benefits to a human rights approach, especially the strength that comes from the potential for legal enforcement. A right is an entitlement; in theory at least, rights make the world sit up and take notice. For people with impaired capacity, this has been long overdue. But, focussing on human rights alone is reductionist; it misses important parts of the picture.

“Rights, by definition, are abstract – we talk of rights to autonomy; dignity or bodily integrity. These are useful concepts but they do not have the nuance to address the complexities of people’s lived reality, what Heidegger calls, our ‘being-in-the-world’.

“If we think, for example, about someone whose capacity has been impaired through dementia and reason from these abstract rights, we miss the rich tapestry of connections and complications which make up this person’s experience of living. These are often simple things: Rita likes to have her hair combed or John is content when there is music, but these simple things may be what make lives valuable for the people who live them.

“Recognising the importance of these is crucial to affording each person the best chance to live the best life possible for them in their own circumstances. A human-rights based approach is useful only in so far as it helps to achieve this.”

The human-rights based approach substitutes the idea of acting in another’s “best interests” with the idea of “empowering” the other to make their own decisions. Are there downsides to the “empowerment” approach?

“Empowerment is crucial for people with impaired capacity, who are still often deprived of even the most basic freedoms. Empowerment is linked with the right of autonomy – our right to make decisions about our lives.

“This is an important right; indeed within traditional Enlightenment liberalism, it has often been seen as the most important right. But it is a mistake to see autonomy as the only important thing in people’s lives.

“Other values which makes lives worthwhile include kindness, care, connectedness, and human flourishing – what Aristotle called eudaimonia. A focus on empowerment alone risks overlooking these values. And, we need to recognise that we still do not know how far empowerment can extend.

“We can easily envisage how a focus on empowerment can enhance the life of a person with Down Syndrome – and should be making every effort to deliver on this – but there are a lot more questions about how empowerment can operate for someone with advanced dementia. So we need a much more convincing evidence base before we put all our eggs in the empowerment basket.”

Ultimately, are we forced to make assumptions about what’s in the best interests of people with impaired capacity – be it the assumption that they are best placed to decide for themselves what’s best?

“The traditional approach, which saw decisions made on the basis of a purportedly objective view of what was in the best interests of a person with impaired capacity, is now discredited. We now approach the matter with a good deal more epistemic humility, acknowledging that we can never be sure what is in someone’s best interests. This is a good thing. But decisions still have to be made.

“One of the more positive aspects of thinking about someone’s best interests is that it places the person at the centre of everything. This needs to remain the central focus. But we need to begin from the person’s own perspective; their wishes; their experience; the things that they value.”

How might one incorporate phenomenological inquiry into ethical deliberations about impaired capacity?

“Ethical deliberations have conviction only if they start from the perspective of the person whose capacity is impaired, not just what do they want or feel but also how well any decision coheres with the things that give value to their lives.

“Scientifically, we know more about our neural pathways than ever before but we are still a very long way from understanding the ‘bodymind’ of people with impaired capacity.

“Applied phenomenology focuses on lived experiences. This means listening to people themselves but also to those who live with them and care for them. It starts from the person rather than from an abstract concept.

“Mathew Ratcliffe’s recent work on schizophrenia and profound depression shows what fine-grained studies of lived experiences can offer, especially when it comes to working out the complex interplay between human rights and human beings.”

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Ask a sage:

Question: How can I become more optimistic in the age of Brexit and Trump?

Roberto Unger replies: “Hope is not the condition or cause of action; hope is the consequence of action. And those who fail in hope should act, practically or conceptually, so that they may hope.”

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