Autonomy and choice in pandemic times: the importance of empowerment in care decisions.

Recently I happened to be discussing being a parent with someone who had become a father for the first time. One of the comments I made to him was that parenting was a process of discovering that true knowledge is learning what you do not know. For despite all the books and videos you can read or watch nothing can prepare you for the real experience. It is a journey of self-discovery; a process of un-learning all the suppositions and thoughts you initially felt were true and allowing yourself to be changed for ever. There is a real truth in the sense that the best parents are those who have been willing to be taught by their children. From the first moment when you return from the hospital into the fearful state of total responsibility for a fragile life all the way through to the faltering first steps, through toddler tantrums and on to teenage expressiveness parenting is something that not only leaves an indelible mark but changes you forever. It is full of ebbs and flows, shallow pools and torrid currents.

As any parent will probably attest one of the hardest lessons you learn is the art of letting go. From the desire to protect and guard with suffocating love you have to learn to let go, trust, and empower individuality. Whether it is allowing a toddler to climb beyond your own risk analysis or allowing someone to miscalculate in fledgling relationships – it seems a constant balance between the desire to intervene and protect and the realisation that autonomy and individuality can never flourish in the shadow of a dominant parent.

Autonomy is a concept that has been much in my thought in the last week. I recognise that autonomy is critically important in the nurturing of a child through its early life. The skill of enabling a child to develop so that it is able to make its own decisions, develop its own moral and ethical framework for action, and to do so with an emotional maturity is perhaps the greatest gift of parenting. Without it we would create a society devoid of creativity, ingenuity, expressiveness and soul.

The autonomous child learns to understand that they that they have control over themselves and the choices that they make. That their actions and interactions have consequence and purpose, effect and outcome. Autonomy is developing the abilities to think for yourself rather than merely replicate the views, opinions and thoughts of others, especially your parents! It is the sense of control, agency and responsibility critical to making us into human beings capable of being truly who we are and in relationship with others.

Sadly, there are a whole host of factors that can limit autonomy and prevent the development of the essential characteristics of self-worth, self-regard and self-love. The things that limit our personal autonomy can be the barriers that society places in front of us in terms of our socio-economic status, its disabalism or racism or classism. But equally our autonomy can be restricted by impairments of body or mind that may constrain us.

Those who work in social care know that the essence of good care is enabling an individual to exercise the fullest possible autonomy. It is the realisation that regardless of any cognitive or physical impairments that every human individual has the right to exercise choice, control and autonomy to the best of their abilities and capacity. Good care is about removing or limiting the barriers that prevent human autonomy and control.  It is about enabling an individual to be as independent as possible, it is about reducing dependency rather than fostering it.

That is why our legislation in Scotland recognises that whilst there are indeed some who may have limits on their mental capacity there can be no automatic presumption of incapacity rather there is always a presumption of capacity. I have the right to make decisions about my own person, body and life unless under very strict criteria it is deemed I no longer possess the mental capacity to do so. But even then there is an awareness that capacity can fluctuate and be episodic so there is a duty on those who care for me to continually seek to enable me to exercise autonomy, choice and control.

Without a sense of autonomy, we would feel continually under the control and agency of others; we would not be able to make decisions about what matters to us in our lives. So, in social care the fostering of autonomy is central and critical.

As a whole society we have an obligation to respect the autonomy of other persons, which put simply is to respect the decisions made by other people concerning their own lives. This is what lies at the heart of human dignity, the ability to allow others to grow  into the fullest expression of their own humanity and individuality, without us forcing them to be someone they are not, to do something they do not want to do. All of which is boundaried by the laws and obligations of the whole community and society.

That last point is important because of course no one of us is wholly autonomous. We cannot just do what we want without appreciation that we live in relationship one with the other in a society. When we make decisions and act on those decisions, our decisions and actions are at least partly autonomous.

In social care and health care it has become one of the core ethical standards that an individual must be involved in decisions about their own health and wellbeing.

Autonomy is regarded as a fundamental ethical principle. Put simply it is the acknowledgment that patients who have decision-making capacity have the right to make decisions regarding their care, even when their decisions contradict their clinicians’ recommendations. Autonomy is the principle which underlies the requirement to seek the consent or informed agreement of a patient before any investigation or treatment takes place.

So, what about autonomy in the time of a pandemic?

It is because we are part of a wider community, society or nation that during a period of national emergency that as autonomous individuals we are willing to accept the instruction and laws of our Government in order to protect both ourselves and others. We have seen this in the remarkably high level of compliance during lockdown and in the initial stages of removing ourselves from lockdown.  Managing public behaviours and expectations has been critical. A citizenship without a sense of consensual autonomy would never have supported the restrictive measures which we have all had to live under in the last few months.

But the reason behind me thinking about autonomy this week is the number of people who have written and spoken to me about the extent to which, perhaps especially as we come out of lockdown, we have failed to give adequate respect and cognisance to the autonomy and rights of older people.

Jane wrote to me to say, “I have the right to make decisions over my own life.”  She is in her 90s and in a care home which has been affected by Covid19 and because of that even outdoor visiting is not happening because of the requirement to be virus free for 28 days.  Jane has mild dementia and is in a residential not a nursing home. She is there because of issues to do with mobility and frailty. She has full cognitive ability and mental capacity, yet she feels that she has no control, diminished rights and no autonomy. She feels in her own words “as if I am being treated like a child.”

Her letter was heart-felt and I have to be honest in saying I find it hard to answer her because I think she is right. I do think that we have now reached a state in our pandemic response where we are in danger of limiting the human rights and personal autonomy of individuals ‘solely’ on the basis of where they happen to live or on the basis of their age.

The loss of autonomy and individual agency brings about profound psychological impacts on an individual. This sense of not having control and choice robs us of our identity and purposeless, our individuality and freedom.

Atul Gawande in his brilliant book ‘Being Mortal’ argued that this lack of respect for older people and their exercising of individual autonomy can ultimately mean that as a society we can conclude that prolonging longevity is more important than quality of life. We are so preoccupied with minimising risks in the way our elderly are cared for that we strip them of their autonomy  and control (even with reduced capacity) by treating them like infants unable to make decisions and take actions for their lives.  

Studies across the world are recognising the emotional and psychological toll which lockdown has brought to care home residents, including the loss of interaction with family members. I am increasingly convinced that we need to urgently look at the way in which we have approached the need to balance infection control and prevention and the quality of life of those in our care homes. This in essence has to do with autonomy.

When someone enters a care home regardless of whether or not they have a life-limiting condition such as dementia they do not lose autonomy, they have not left their rights to choice, control and individual agency at the front door. Yes, we have as a whole society  consented to restrict ourselves as part of our belonging to that society, but now that we are removing these restrictions we cannot treat one group less favourably than others simply in the name of infection prevention. This is a subtle and hard balance, but I am not sure we are getting it right.

Moving forward it will be critical that as a whole society and as a care system that we find better ways of ensuring that individuals in care homes and indeed individuals who are dependent upon support and care in our communities have a better mechanism and means to influence decisions taken on their behalf. Part of autonomy is the right to exercise voice and influence, the need to be heard and have your distinct needs addressed.

Any future ‘lockdowns’ will risk a failure of compliance if there is not a greater sense of engagement with and involvement of those affected by measures ostensibly designed to protect but which by default rather than design may actually lead to greater harm. We need to empower people to exercise their autonomy in decisions made about their care most especially when the extent of restrictions have such a dramatic impact on their health, well-being, and autonomy as human beings. We have to stop treating care home residents as children and restore their adult autonomy.

“A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.” 

Atul Gawande, Being Mortal: Medicine and What Matters in the End

 

Donald Macaskill