Autonomy and Older People in Care

An older woman looks out her window in Skiathos, Greece Photo: Nick Karvounis/Unsplash

 

By Nathan Leivesley

 

For all people, including older people, having the freedom to make choices about one’s own life is an important and basic human right: it is an essential feature of preserving and ensuring a person’s dignity. As such, especially in care contexts, it should be carefully safeguarded. While these ideas would normally go unchallenged with respect to most young or middle-aged adults, the vulnerability and a power imbalance between older patients and carers often challenges older people’s autonomy, specifically, their ability to make their own decisions. This article will first identify and define decision-making autonomy, then discuss challenges to autonomy that older people face. Finally, it considers what actions can be taken to maximise the autonomy of older people in the future.

 

What is autonomy?

In order to be able to properly discuss the challenges to older people’s ‘decision-making autonomy’, it is important to define the term. There are two different kinds of decision-making autonomy: the first is the ability to make personal decisions, and to have and express one’s own choices and values; the second is the ability to act on one’s choices, the ability to independently do rather than the ability to decide.[1] It is important to understand the differences between these types of autonomy, as older people might not have the ability to act on their choices but will still have preferences and might be perfectly capable of making decisions.[2] Carers often make the (faulty) assumption that a lack of ability to execute decisions implies a lack of ability or will to make decisions. This challenge, in combination with the others that I identify below, can lead to consequences that may be frustrating or even dangerous for older people receiving care.

 

Living and care arrangements

Research indicates that older people’s experiences of decision-making autonomy are strongly connected to their living and care arrangements, and that there is a significant difference in older people’s feelings of autonomy depending on what their living and care arrangements are. One study conducted in 2004 considered 214 older people in Northern Ireland who required ongoing care and who were living in either private homes (their own, or their family’s), residential retirement homes, or nursing homes.[3] The authors of the study questioned each person on their feelings about choosing a number of everyday activities, like deciding when to get up.[4] The results indicated, contrary to what might have been expected, that participants in private households felt less free or able to make decisions than those living in residential or retirement homes. This is because those living in private homes were often more likely to be informally cared for by family members, rather than the more formal care provided to those in residential or nursing retirement homes.

 

The authors suggest that informal carers – who may be time-poor or reluctant – are more likely to make rather than execute decisions made by the older people in their care. It was also reported that even when participants were able to make decisions about their own lives, they were often unwilling to do so.[5] In many cases, regardless of living arrangement, it seems that losses of decision-making freedom and autonomy for older people were commonly connected with actions taken, or care provided, by professional carers or informal carers.[6]

 

Task-focussed care might reduce decisional autonomy

Challenges to older people’s ability to make decisions are further exacerbated by the type of care they receive. If carers – especially those who are untrained and informal carers – are only focused on completing tasks (like bathing), it is unlikely that any input from the older person will be sought, given, or taken into account in the process of completing the task. This kind of task-focused ethic of care, while potentially efficient, may significantly affect older people’s feelings of autonomy. Combined with other factors connected to the broader organisational structure of formal care arrangements, like fixed mealtimes, lack of appropriate mobility aids, or scheduling of other required services, this can pose significant challenges to the decision-making freedom which older people ought to have and exercise.[7]

 

One review of studies on the autonomy and independence of older people who require care noted that a further constraint on autonomy that emerges in the course of task completion is the need to protect the person against potential risks.[8] While some level of risk-awareness and mitigation is appropriate, it is arguable that if risk and safety-related concerns are used to limit the decisional autonomy of an older person too significantly, the therapeutical value of an institution to the person may be limited.[9] Similarly, in informal care settings, it is possible that risk aversion on the part of untrained carers may lead to safety-conscious decision-making consistently overruling the wishes and will of the person who is being cared for.

 

What can be done to strengthen the autonomy of older people?

The core of the solution seems to begin with ensuring better communication between carers and older people. There are simple actions that can have a large impact on communication between older people and their carers. One such action is ensuring that both formal and informal carers are educated about and aware of the importance of ensuring older people are not deprived of their ability to make decisions about their life, even though their ability to execute those decisions may have decreased with their age or disability. Further, there is some evidence to suggest that if carers simply encourage and facilitate older people’s making small decisions about their daily activities, this behaviour will have a substantial impact on older people’s perceptions of their decision-making freedom.[10] A small study undertaken in 2010 found that older people in formal care who were consulted by their carers about how to decorate their living space reported higher levels of wellbeing than older people who were not allowed to make decisions in the same context.[11]

 

Further, in recognition of the barriers that older people in both formal and informal care face, carers should communicate with a focus on putting the person first, rather than putting the task, first. This means spending time eliciting and carefully listening to the wishes of those they care for, as well as ensuring that older people in care are equipped with the tools to make decisions, and have all relevant information explained to them before making decisions.[12] This recommendation, while simple, is vital to overcoming the core challenge of ensuring that older people’s decision-making autonomy is supported, even when it may not be possible for older people to independently act on their decisions.

 

The NSW Law Reform Commission has echoed these sentiments in its review of guardianship laws in NSW by suggesting a model which aims to get carers to support and assist older people in making decisions, rather than make unilateral decisions on their behalf. In its 2017 report, the Commission captures the essence of the action required to ensure older people are and remain empowered in a care context, in stating that the ‘role of the supporter is to access or collect information that is relevant to the decision, assist the supported person to communicate their decision and advocate for the implementation of that decision.’.[13]

 

Conclusion

Ensuring that as a society we protect human rights – like freedom, dignity and autonomy – for all people is vitally important. Older people deserve to be treated with the greatest amount of humanity and respect for their personal autonomy, particularly in a care context. Many of the attitudes and actions that serve to reduce or disregard the capacity and right that older people have to make decisions that affect their lives are premised on a generalisation and falsehood: that by reason of their age, older people are no longer appropriately equipped to make decisions and therefore exist as passive objects to be cared for. As this article has sought to establish, this is not the case. While older people (especially those receiving formal or informal care) might not, for reason of disability or otherwise, be able to act as independently as they may have previously, this should not be confused with the ability to choose – a right so fundamental that it should be preserved, protected, and empowered to the greatest extent possible.[14] Ensuring that older people in care are empowered to make decisions about their life is not simply a medical practice issue, but a human rights issue.

 

Nathan Leivesley was a UNSW Law student who assisted as a student editor for this issue of Human Rights Defender. He has since graduated and now works for the Supreme Court of New South Wales as a graduate assisting with policy and reform initiatives within the NSW justice system.  A special edition of Human Rights Defender magazine, on the Rights of Older Persons, will be available from 21 May.

 

 

[1] G. Boyle, ‘Facilitating choice and control for older people in long-term care’, Health and Social Care in the Community, 2004, vol. 12, no. 3, pp. 212-213.

[2] Ibid.

[3] Ibid, 215.

[4] Ibid, 214.

[5] Ibid, 218.

[6] Ibid.

[7] S. Davies, S. Laker and L. Ellis, ‘Promoting autonomy and independence for older people within nursing practice: a literature review’, Journal of Advanced Nursing, 1997, vol. 26, no. 408, p. 415.

[8] Ibid, 414.

[9] Ibid.

[10] Ibid, 415.

[11] C. Knight, S.A. Haslam and C. Haslam, ‘In home or at home? How collective decision making in a new care facility enhances social interaction and wellbeing amongst older adults’, Ageing and Society, 2010, vol. 30, no. 7, pp. 1393, 1404-11,

[12] J.P. Bynum, L. Barre, C. Reed and H. Passow, ‘Participation of very old adults in healthcare decisions’, Medical Decision Making, 2014, vol. 34, no. 2, pp. 216, 227.

[13] New South Wales Law Reform Commission, ‘Review of Guardianship Act 1987’, Draft Proposals, 2017, p. 12.

[14] United Nations General Assembly Human Rights Council, ‘Report of the Independent Expert of the enjoyment of all human rights by older persons, Rosa Kornfeld-Matte A/HRC/30/43’, 2015 pp. 13-18.