As posted on ABCs opinion site, The Drum – see here
The global news last week featured reports of a paralysed man, Tim Bowers, who chose to turn off his life support system.
Bowers’ injury was a severe one – he was a C3 quadriplegic with the possibility of lifelong intubation. On the day after his accident, doctors woke him from an induced coma and asked whether he wanted to continue life-support. He apparently replied, with a shake of his head, “no”, and after spending a few hours with his family, his life support system was turned off and soon after he died.
While I understand and sympathise with Bowers’ decision, I am appalled that the doctors gave him the option to end his life at that time. Admittedly, Bowers had previously said to his wife that he didn’t want to spend his life in a wheelchair. But this view merely betrays the fact that he shares the common able-bodied assumption that life with a spinal cord injury (SCI) is not worth living. Clearly, his family and doctors (as well as the global news media, which generally reported on the event without raising any concerns) shared the same opinion.
At stake is the issue of medical consent. Of course, people should be given the right to make decisions about their own future. But for consent to be meaningful, the patient needs to be fully cognisant of all relevant facts. In this case, there is simply no way that a patient – one day after a horrifying accident – is in a position to know what it might be like to live with a severe SCI.
In fact, research on quality of life (QOL) for ventilated quadriplegics suggests that “There is relatively strong evidence that people with high-level ventilator-dependent SCI rate their QOL as relatively good in the years after injury” – and that life satisfaction increases with time. And this is to say nothing of the fact that many people experience substantial recovery in the weeks and months following the initial accident. Just because someone needs ventilation in the early weeks does not mean that it will be permanent. Of course, it may be – but even then, it is possible to live a life full of accomplishment and meaning.
Of course, this life is difficult – indeed, impossible – to envision one day after a horrifying injury, lying on a bed, plugged into a spider web of tubing, unable to move. And because it is impossible, then so is meaningful consent.
In my view, Tim Bowers’ doctors have failed in their duty of care, and it makes me wonder how this has come about. Is this decision (and its widespread endorsement) an indication of a loss in our appreciation of the sanctity of life? Is it part and parcel with the push for legalisation of “the right to die”? Has economic pragmatism and cost benefit analysis prevailed?
I hope it’s just an aberration. If not, then quadriplegics like me (I am a C5 non-ventilated incomplete quadriplegic) might be the last of our kind. Indeed, I wonder how many inspirational global citizens would not be around today if they and their families had been asked in the early days and weeks of their recovery, “Do you want to go on living like this?” Christopher Reeve? Teddy Pendergrass? Countless unheralded but inspirational men and women?
At some point, almost all of us would have stolen a glance at a quadriplegic and mumbled to our partner/friend, “He’d be better off dead. If that happens to me, ask the doctors to pull the plug.” It’s a natural reaction – fear of the unknown. But it turns out that the unknown of SCI, when confronted head-on, is not as horrifying as it first appears.
Yes, life with quadriplegia (like countless other disabilities) is challenging and sometimes bloody horrible. And yes, ventilated quadriplegia would be especially difficult. But it is still life, and so it is open to the pursuit and experience of joy, love, beauty, accomplishment, and meaning – provided one has the courage to face up to the long process of rehabilitation, and provided doctors, and society as a whole, inspire newly injured people to see that a full life is possible.
It is in failing to provide this inspiration that the medical staff attending to Tim Bowers failed.
Ruth AgiusNovember 10, 2013 at 3:04 pm
I agree with you, Shane. For consent to be legal, it has to be given by someone of “sound mind”. How can this guy not be emotionally and psychologically in shock a day following his accident?
Shane CliftonNovember 10, 2013 at 3:18 pm
Clare HarrisonNovember 10, 2013 at 8:07 pm
Reading the article in the paper it struck me that ‘the relatives’ are usually required to turn off life support when there is no consciousness, or chance of survival. Sounds like this was a commercial decision masquerading as ‘giving a patient more autonomy ‘ in a roomful of very frightened people.
Dan CliftonNovember 10, 2013 at 8:28 pm
You are probably right that this guys was not in a position to be fully informed of this decison, and that he could (would) have gone on to have a fullfilling life with his SCI …………. but he did make this decision pre injury and in a sound state of mind. Was it the right decision? who knows – but the fact is that people do make decisions all the time without being fully informed of the consequences, and go on to live (or die) from these decsions.
That said the media run on this story certainly reinforces some sterotypes without much balance …. not that this should surprise any of us.
Clare HarrisonNovember 10, 2013 at 9:36 pm
Sorry, I meant that the medical proffession waking him up to choose to turn off life support sounds like a commercial decision.
Shane CliftonNovember 10, 2013 at 9:43 pm
If that is not the rule, Claire, then it should be. And I do hope economics are not driving the decision!
Michael JensenNovember 11, 2013 at 12:11 am
Hi Shane – why don’t you send this article into the newspaper? It would be great to see it there.
Shane CliftonNovember 12, 2013 at 9:56 am
okay – I will submit to the editor and see how that goes. Otherwise I might submit to Scott Stevens on the religion and ethics webpage
Lauren HayesNovember 11, 2013 at 9:21 am
Agree with Michael – the public also need to get another side to this story.
Steven ClancyNovember 11, 2013 at 12:05 pm
It is symptematic of society’s desire to take away rights for the vulnerable. It is mostly economic. Working in Dementia Care, I see this more and more. We have residents who have come in saying that they would never want to be in higher grades of care. No-one chooses to be in these states, as you well know Shane, but quality of life is not deminished just because someone needs greater support. Well written Shane.