World Congress of Families Sydney May 2013

  I was asked by the World Congress people to give a short address on the relationship between euthanasia & assisted suicide and family dysfunction. 
The following text should be taken as observation and opinion.

Euthanasia: dysfunction - cause and effect by Paul Russell

We have a saying in our family that 'The Russell's put the fun back in dysfunctional'. I think we might all be able to identify with that in some ways.
One definition of dysfunction says that it is a 'Deviation from the norms of social behaviour in a way regarded as bad'.
This encapsulates, I think, the problem with euthanasia & assisted suicide and the public discourse about this dark spectre in our midst.
End of life issues are almost always difficult for families, we know that. The way families interact in daily living will normally be a good indicator of how they respond/react to end-of-life discussions, but the addition of the 'elephant in the room' about an 'early exit' does nothing to enhance or support the family in such circumstances; on the contrary, it is dysfunctional precisely because it is a deviation from the norms of social behaviour in those circumstances.
What messages do our elders hear from society about aging and the end of life? Two main myths:
Myth one: you'll be a burden on your family and on the system. To this, some respond with a healthy dismissal; while others will absorb the subtle and not-so-subtle message that indeed, they will be a burden.
Myth two: you're likely to die in pain and discomfort. This is a complex matter. Some in the pro-euthanasia movement continue to make references and comments that re-enforce this. It's a campaign of fear. Like the proverbial snake oil salesman, they convince people that they are in desperate need then they provide them with a 'solution'.
I say that this is complex for a number of reasons. Firstly, if you get access to quality palliative care from the best trained people you will not die in pain. But access is not universal. So whilst, in a perfect world, we could say that pain is no longer the problem, even our peak palliative care bodies cannot say so absolutely - not because their craft cannot achieve this goal, but because there simply are not enough high quality trained professionals and simply not enough services to go around. This, I believe, is the real problem to be answered.
How is this both cause and effect of dysfunction?
It is so easy to re-enforce the negative message about an older relative being or becoming a burden. All it really takes is a little lack of attention, a deaf ear to the subtle requests for affirmation. God knows, we have funeral plan adverts on TV showing healthy vibrant seniors saying 'we don't want to be a burden on the kids'.
Yet at a time when the elder may be moving to a nursing facility from their home of many years with little in the way of personal comfort possessions and where their routines evaporate, it is often really only the constancy of the family in their visits, phone calls, outings etc. that can actually re-enforce and restore a sense of the worth of that person.
This is a very fragile period in a person's life and it is something that no-one really offers any guidance to help with.
It is very easy to fall into the trap of patronising the elder, of not really listening to what they are saying. "Hit me on the head dear" is what my mother-in-law would say. This, from a woman who would never have contemplated an easy way out of anything in her entire life. What was she saying? What did she really want in reply?
The answer was simple. She was really saying that she didn't think any of us were really aware of the difficulty she was having coping with her radically changed circumstances. She wanted re-assurance. She wanted to know from us that we cared, that we understood, that we would create a routine of family care around her and that she would be no stranger to the family and the grandkids.
In spite of many 'near-death' experiences, Mum lived a further 16 years in her nursing home. She certainly had a will to live and I hope that, if there's a ledger somewhere, that we will have been known to have helped rather than hinder her sense of worth and purpose.
I think you know that it is not always like that. People often share stories with me because of my work. Terribly sad stories - many would shock you.
Neglect is probably one of the worst kind of abuse. Imagine my mother-in-law's cry for help being met with disinterest or, even worse, agreement. It does happen. It would be easy to see this as strictly a sinister and perhaps criminal neglect; but it isn't always so. Some people are so emotionally damaged themselves in this world that even their best intentions may never find concrete expression. There's a fear of decrepitude and diminishing faculties that for some may mean that they cannot even face it in others. It can be hard, even in the strongest families, to get past the presenting circumstances and to love regardless of them.
Paul with Alex Schadenberg's book
And it is expression that is probably the most significant support. A gesture, a smile, a caress, a laugh, a song, a reminiscence.
I need to focus now on a phenomenon that is reaching epidemic proportions in many parts of the Western World. I'm referring to Elder Abuse. Elder Abuse is the physical, psychological, emotional, financial and even sexual abuse of elderly persons. In some reports I have read, jurisdictions in the U.S. and elsewhere estimate that up to 10% of the population over the age of 65 years are subject to such abuse in some form. This is deeply dysfunctional.
It is a classical situation of abuse in a power imbalance between a younger, able person (often a family member or carer) and an older person with diminishing faculties. It is grossly under reported precisely because the abused person is fearful of repercussions, has little or no access to any other person outside the abusive situation, or because they rely so entirely upon that person that they fear what might happen to them if they were removed.
If it is about power, then it is also about money. The two seem to go together. Financial Elder Abuse is a no brainer really.
The ultimate elder abuse, of course, would be the premature death of the elder and the assignment of the estate to the abuser. This is where the relationship between Elder Abuse and euthanasia becomes crystal clear.
Yes, bills we've seen recently in South Australia and elsewhere attempt to cover the possibility of coercion, but attempts at trying to address these very real concerns are essentially lip service: trying to assuage genuine concerns with almost useless safeguards.
I put it to you that euthanasia and assisted suicide does not happen in strong, functional families. Even with the celebrated cases in our media, there is often a hint of a back-story of some thing missing.*
What is happening deep down here is that we've become a society where we incessantly seek for the quick fix - the easy way out - the path of least resistance. This is as true for the individual thinking of themselves as it is for individuals' thinking about others. We have become a society whose god is utility and function.
The spinmeisters of the pro-euthanasia movement have done their job playing on our natural fears about death and amplifying them to the point where they would have us all expect to die in excruciating pain and in horrific circumstances. As I said, theirs is a campaign of fear.
And what does that fear really say? It says, 'I don't want to end up in a wheelchair, I don't want to end up with someone else wiping my bum, I don't want to have to rely on others, I don't want to experience the decrepitude of demise.'
It is less about dying than it is about living.  
Ultimately, what they're really saying is that they don't want to be disabled; they don't want to be aged and infirmed. This promotes a subtle and not-so-subtle disdain of elders and of the disabled. "I don't want to be like them" ergo "I am repulsed by them." Little wonder that genuine disability activists are so incensed by the idea of euthanasia because they see themselves as targets.
And it doesn't seem to me to be too much of a stretch to characterize these messages as a form of abuse writ large.
It is possible that in this kind of thinking we are seeing the birth of a new form of eugenics. The worship of the perfect and the disdain of anything imperfect.
This, friends is the real dysfunction that we should fear. It gripped and bedazzled Europe for two dark decades up until about 1940. And there are deep, subtle and resonant echoes of this horror right here in our midst.
And that, dear friends, becomes the challenge for us all. It's a challenge about the preservation and restoration of a culture that is sorely in need of a functional vision of the family which includes and embraces those of us who are less-than perfect!
Yes, maybe we can put the fun back in functional!

*Here I am not referring to cases where someone is euthanased where the family was unaware and would have otherwise intervened. Unfortunately, this also occurs.