Tuesday, 2 December 2014

Destination without Journey

‘I will take my life at noon today. It's time'. 

Gillian Bennett was 83 on the summer day in 2014 when she took her own life. The setting was idyllic: a short walk from her house on Bowen Island, made harder and longer by the foam mattress she had to drag without help to her favourite spot, a grassy perch with a stunning view. Had her husband Johnathan assisted her in any way, he would be breaking the law.

Around noon, Ms. Bennett followed a drop of Whisky with a mixture of Nembutal and water and said goodbye. The website www.deadatnoon.com was made public following her death and provides a thorough and thought provoking explanation of the reasons she chose to end her life. By sharing her story Ms. Bennett intended to stoke public discourse on the highly controversial issue of physician assisted suicide.

Ms. Bennett had dementia and it was progressing--rapidly. A psychotherapist by profession, she knew very well that her lucid moments would continue to be fewer and farther between until she would no longer know who she was. She understood that eventually 24 hour care would be required and that her “empty carcass” would become an increasing and needless financial burden on her family and on the provincial health care system until her death. 

Acting precipitously while still lucid was necessary because Ms. Bennett needed the wherewithal to act without assistance. Canadian law in August 2014 forbade health care professionals or anyone else from assisting her in any way. Interestingly, the public discourse she intended to spur by going public with such an intimate act has currently dovetailed with a Canadian Supreme Court hearing of an appeal by the B.C. Liberties Association contending that the law violates the Charter of Rights and Freedoms.

In many respects, Ms. Bennett’s actions appear laudable and courageous. She was open and transparent about discussing her intentions with family and close friends and accurately cited numerous humbling, degenerative symptoms consistent with advanced stages of dementia. She couldn’t countenance family members feeling obliged to pay regular visits to a nursing home or long term care facility to visit someone who not only had no idea who they were, but no idea who she was either.

If you’ve been around dementia, you are familiar with the effects of memory loss, long, blank stares, repetition, incoherent or unintelligible phrases, ticks, twitches, agitated, erratic behaviour and a host of increasingly debilitating physical deficits or infirmities. You may be aware that dementia is a terminal disease that most often takes lives as a result of falls or aspirated pneumonia. To date, there is no cure and little to slow the rate of neurological degeneration.

For all these reasons, Ms. Bennett’s decision is clearly supportable and perhaps even noble. Were there a public plebiscite on whether Canadian law should offer the choice of physician assisted suicide to dementia sufferers (and those suffering from terminal disease), it is likely the majority would vote in favour. After all, it is merely choice that Ms. Bennett is advocating. Not everyone with dementia or a chronic, debilitating terminal illness such as ALS will opt for assisted suicide, nor would every physician agree to administer it. In fact, it is thought the Supreme Court will overturn its 1993 ruling (which by a 5 to 4 vote denied a similar challenge by Sue Rodriguez) and endorse physician assisted suicide under rigorously regulated conditions. But while there is no question that quality of life considerations are fundamental to any discussion of assisted suicide, how can it actually be measured?

If quality of life is assessed solely according to normal physical and cognitive functioning, one could certainly deduce that symptoms such as incontinence and memory loss would significantly erode it. But dementia is not normal and behaviour cannot reliably be tied to predictable and familiar triggers or biological factors. Because there is a tendency to track dementia as a deficit trajectory, non-verbal communication is commonly considered a typical mid to late stage inevitability. And yet, dementia is, not surprisingly, allied with depression. Is it conceivable then, that non-verbal communication may, in some cases, be a choice rather than a strictly neurological outcome?  And if that is feasible, how reliably can a normal brain accurately assess the potential quality of life available in dementia?

Imagine a 94 year old man curled up all day long in a wheelchair, hands pressed against his chest, eyes cast downward. He speaks seldom, rarely opens his eyes and looks stiff and lifeless. How to account for the fact that this man, this lover of music, who back in the day would delight his children by breaking into song and dance with little provocation, can now, after years of assuming the same rigid position day after day, suddenly spring to life because someone thinks to place headphones over his ears and click the play button on an Ipod? Instantly, his eyes pop open, bugging out of his head with a mix of surprise, excitement and unbridled joy. He is animated, dancing, face alight, rocking from side to side, virtually bouncing around in the chair. Where has this come from? Where has he been for so long when he could have been here? 

The man is shocked and disappointed when the headphones are removed, but once reassured they will soon be replaced, he clearly and enthusiastically blurts out ‘Cab Calloway’ when asked to name his favourite musician. This begins an energetic  exchange, demonstrating that the liveliness lingers; that it can survive the absence of the music, but more importantly, in order to have been elicited, it must have been merely dormant all along.

Now imagine an 89 year old woman in long term care, virtually welded into the armchair she needs for security and communication. Head down, chin anchored to her chest, her eyes are squeezed shut, perhaps to hide from a world she no longer feels part of. Her fists are clenched, but she uses the right one for communication, banging on the wooden armrest at different rhythms and intensity to express what is rarely understood. She has been non-verbal for a number of years, able (or willing) only to grunt since the ability to form words seems to have abandoned her.
There is a white haired woman, a therapist, leaning over the 89 year old, perhaps a foot from her face. Her reassuring voice, brimming with praise, tells the woman how wonderful, beautiful and beloved she is. She strokes the woman’s face, gently, lovingly, and as she sings a hymn, the seated woman appears to respond, grunting and matching rhythms with her fist on the armrest. The white haired woman draws nearer, her warm breath and soft words soothing, trustworthy, comforting. The seated woman, eyes still shut, tilts her face up toward the therapist until they are inches apart, the grunting and fist pounding now silent. Barely above a whisper, the white haired woman says, ‘open your eyes’. Shockingly, the other complies. Now the therapist sings ‘Jesus loves me yes I know…’ and the seated woman, the hint of a smile creasing her lips, stares up at her  and in a dry, raspy voice, sings ‘for the bible tells me so.’

Is it possible that our understanding of the quality of life experienced by someone with dementia is hampered by a lack of imagination? Is it a stretch to imagine someone electing silence to cope with the incredible frustration and grief arising from the inability to clearly express one’s sense of displacement and loss?

There is no compensation for memory loss or diminished physical function, no illusion about the devastating and traumatic burden imposed by dementia. Gillian Bennett understood this and chose what she considered a dignified, self-affirming alternative. Intriguingly, what the anecdotes above suggest is that even while neural pathways linking the present with the past are no longer navigable, with the right stimulus, the vital touch points they inter-connected may, in some, and possibly many cases, still exist. In the mysterious realm of dementia then, assumptions about quality of life should perhaps consider the possibility that, to invert an old axiom, it may be more about the destination than the journey.