Consent to die following SCI – responding to the Tim Bowers story

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.