Tuesday, 31 December 2013

The Right to Age Well

If I dug deeply into the family’s photo albums I would eventually find a few old Polaroids of a skinnier version of me wearing soccer goalkeeper’s gear with boots and gloves, ready for battle. Those were the days – but I’ll spare you the images!

These days I live out my love for the sport somewhat vicariously through my youngest son’s soccer exploits and my middle son’s refereeing. Breaking the ‘habits of a lifetime’ in conceding that at least one referee knows what he’s doing still hurts!

I also continue my love of ‘the beautiful game’ through coaching juniors. Helping young budding goalies is a wonderful privilege with the added benefit of extending my ‘use-by date’! I still play the occasional game or two, but with each passing year the aches and pains scream longer and louder – even louder than my long-suffering wife’s repeated overtures to quit!


What’s all that got to do with ‘aging well’ you ask? Well, it strikes me that how we age does have a great deal to do with how we live. Not just in the care (or perhaps lack of, in my case) that we take to keep our bodies in trim; not only in the exercise that we give our grey matter and not even in the interests that we maintain or develop in later life, though these are all important.

I’m thinking more about how we exercise autonomy – our ability to make decisions for ourselves about ourselves and the intertwining of relationships where respect for the autonomy of others influences our own autonomy.

Exercising one’s autonomy in later life is critically important to a sense of well-being. But just as a small child’s world expands as he or she develops, so it is that aging can reduce a person’s world; particularly if there are attendant health, capacity and mobility issues. But maintaining autonomy is something different from maintaining independence.

My home town of Adelaide had as Thinker in Residence for the 2011-2012 year a specialist in age-related issues. Dr Alexandre Kalache, a native of Brazil wrote an excellent paper in his time here called: The Longevity Revolution – Creating a society for all ages.

He reflects, rightly, that older persons can be subject to violations of their rights through ‘limited access to services, education and job opportunities, elder abuse, neglect and abandonment – that render them to be one of the most vulnerable population groups.’

He says that, ‘(A)ccess to citizenship becomes limited if frailty, illness, disability or isolation reduce a person’s capacity to effectively exercise his or her decision-making rights.’

Is it any real wonder that, according to a recent Beyond Blue  survey that around 35% of residents in age care facilities experience depression?

Kalache makes a very clear distinction between autonomy and independence; terms, he says, that are often used interchangeably, though they have quite different meanings. “Independence commonly refers to the ability to undertake tasks without assistance, “he says. Kalache is thinking about care settings when he observes that, though one may lose independence ‘due to illness, injury or other chronic conditions’, a rights-based approach to caring can still ensure that people retain their ability to make decisions, decide preferences, maintain relationships and social connections.

So what’s the big deal about autonomy? Exercising autonomy in aging is about retaining resilience, a sense of control and, ultimately a sense of worth.

Losing the physical possibility of continuing to play the sport I love will not be easy. Thankfully, that dawning comes gently to me; preparing me for the inevitable. No doubt, in the greater scheme of things, even this hurdle will pale against later challenges.

But for some people the loss of independence comes rather abruptly and, I imagine, it’s a whole lot harder to deal with.  Take the example of Texan man, Tim Bowers.

Bowers was a newly married fit and active man who had a tragic accident while hunting that rendered him completely paralyzed. In the aftermath of this tragedy, compounded by later events, a number of quadriplegics told the media their stories of gradual adjustment, acceptance and a renewed lease on life – opportunities denied to Bowers.

Bowers never got that chance. He was deliberately woken from a medically induced coma but a day after the accident and asked by his family if he wanted to go on living this way. He declined, his breathing supports were removed and he died. 

On the face of it, Bowers seemed to exercise autonomy. But, poignantly, what he feared was most likely the loss of ability (independence) – not his loss of autonomy.

Sadly this is an example of autonomy misunderstood and misapplied. Autonomy implies an understanding of the choices one is making and the distinctions between such options. Bowers cannot have understood in that moment that he may have recovered some movement, that he may have been able to live without breathing support, and, more importantly, that he may have learned to adjust to his circumstances and live a fulfilling life. According to reports (and self-evidently) he did not have access to the kinds of information and support that he needed to make an informed decision.

And yet time and time again we hear that the majority of those seeking assisted suicide in places such as Oregon state their main reason for doing so as a fear of loss of autonomy. Is it really loss of autonomy or loss of independence that they fear?

We also hear talk about ‘loss of dignity’ at the end and the false argument that a lethal injection somehow guarantees a death with dignity. Dignity at the end-of-life is important. The question is: what does it look like? Are we saying that loss of independence diminishes dignity? But that would include each and every one of us in some way and by some degree making aging itself something to be feared.

We all find our ability to do some of what we once took for granted diminishes with age. Some right-to-die activists have argued that fear of disability is enough reason to want to die and, in Holland and Belgium, some have taken that course.

“I wouldn't want to live life in a wheelchair,” Bowers apparently told his family some time before his accident. It seems it was taken as writ. Yet plenty of people do live with the use of mobility aids with no evident loss of dignity; or perhaps even do so with a greater sense of dignity than they ever may have mustered as non-disabled people.

“I don’t want to live if it means that someone has to take me to the toilet.” I’ve heard that more than once; but again, plenty of people need that kind of support. Like with Bower’s probably off-hand comment, it is more about a fear of the unknown and fear of diminished independence than it is about a loss of dignity.

And then there’s the threat by the prophets of doom that we’re all going to end up in an undignified mess so we’d better get prepared to ‘take matters into our own hands’. ‘Just wait until you’re paralyzed!’ said Belgian Professor Etienne Vermeersch recently in a moment of candor. Like snake-oil salesmen, these folk create a false need and then gleefully provide the remedy.

Few of us would willingly embrace complications and severe illness at the end-of-life. We either don’t think at all about death and disability or, if we do, we harbour a secret hope that we might go quietly after a good night out! But, if we do experience difficulties – even in coming to terms with diminishing independence – we should strive to maintain our autonomy.

And when it comes to the question of where to turn for comfort and support, for guidance and wisdom, are we simply going to take an uniformed leap into the arms of the death peddlers and doom merchants; or are we willing to look to those who have experienced what now faces us; those who have already met and dealt with the same challenges? Are we willing to dignify their lives and the lives of countless others who live daily with disability and poor prognoses or are we going to diminish them by giving no value to their lives, their difficulties and their choices?

As John Donne observed: “No man is an island, entire of itself”. (Any man's death diminishes me, Because I am involved in mankind, And therefore never send to know for whom the bell tolls; It tolls for thee.) Our independence is better termed inter-dependence. We may lose abilities to do the things we once enjoyed, but we can still enjoy observing those same abilities in others and gain some satisfaction in being part of that.

Likewise, autonomy is rarely exercised in isolation. Every choice we make affects others. Making space for people to exercise good choices in aging, no matter how small, enhances self-worth and, most likely acts to reduce the incidence of depression. And because ‘man is no island’ a rights-based approach to individual autonomy ends at precisely the point where another person’s rights are compromised. For better or for worse, we live in societies where the social compact, upheld and protected by the canon of law, not only binds us inextricably to each other but also protects us from the bad choices of others.

Such is the phenomenon of abuse of aging persons. Elder Abuse is a significant and growing problem, particularly in Western countries. It manifests itself in many ways; all of which have at their root the diminishing of the dignity of the person through the denial of their autonomy and rights to freedom, the protection of their person and property.

But perhaps an even more insidious a form of discrimination is a form of ageism that detests the elderly; not so much because of whom they are or what they represent, but rather because, like modern-day Dorian Grays, people grow fearful of their own aging.

I mentioned earlier the kind of discrimination against people living with disability represented by the fear-mongering of some in the right-to-die movement. The character Dorian Gray in Oscar Wilde’s novel held a disdain for people that, in his eyes, were less-than-beautiful; less-than-full of the vigor of youth; less-than-perfect.

It seems to me that this is a subtle yet significant driver of the pro-euthanasia movement. It’s not so much about ‘dignity’ so-called as it is about the supremacy of the self and a denial of the relationship to the other; seeking some magical power over life and death itself so as to spare oneself the supposed ‘indignity’ of both aging and disability.

This kind of thinking must be resisted vigorously. It puts people at risk. There is ample evidence that this risk extends to life itself. But think: if this attitude becomes as pervasive as some would want, aren't we ultimately all at risk? What chance then for people living with disability to live well; what chance for us all to age well?

No Man Is An Island John Donne

No man is an island,

Entire of itself,
Every man is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thy friend's
Or of thine own were:
Any man's death diminishes me,
Because I am involved in mankind,
And therefore never send to know for whom the bell tolls;
It tolls for thee.
  

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