Bowyer and Gillett: Too impaired to rock and roll

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Opinion

Tony Nicklinson suffered a stroke in 2005 and was left in a condition known as 'locked-in syndrome'. Paralysed below the neck and unable to speak, communicating through the use of an Eye-Blink computer, he is engaged in a legal process concerning his right to die.

In framing the ethical debate in terms of 'right to die' we examine the social context in which the 'right to die' appears to be the only viable option.

Current law criminalises assisted suicide and/or voluntary active euthanasia.

Nicklinson claims that this undermines his right of autonomy and dignity and is contrary to sections 1 and 6 of the 1998 Human Rights Act. He is said to have full legal capacity and has made a voluntary, clear, settled and informed decision to end his life.

Nicklinson's situation creates conflict for medical practitioners, who have a duty to their patients to relieve suffering and to ensure they do not die preventable deaths. However, patients have the right to refuse treatment even if such refusal would result in their death.

Nicklinson wants more than merely a restraint in terms of life-prolonging care and his decision poses a problem for doctors who are trained and committed to support life and affirm its value.

Nicklinson, who requires help with all aspects of daily living, from toileting, to eating and washing, has stated that he does not want to go on living in a situation he finds intolerable.

Describing his predicament he states that he has no dignity left, telling how he is washed, dressed and put to bed by carers who are strangers, and how he has to defecate to order, whilst suspended in a sling over a commode.

These actions, performed in the way that Nicklinson describes, do appear to strip him of dignity, so that his self-worth, his value as a person is diminished. But his testimony implicates others, as our dignity is intimately related to how others treat us.

It can be enhanced or diminished by other people's actions and attitudes, and can be undermined by inept or inappropriate relationships. The loss of his dignity is therefore, perhaps an indictment of a social context and not of Nicklinson.

Jean Dominique Bauby, who also found himself locked-in after a stroke, initially wanted to end his ordeal, to the horror of his speech therapist, who was deeply committed to his care. But after dedicated attention from herself and others, Jean-Dominique came to find meaning in his life (see the book and film, The Diving Bell and The Butterfly).

In contrast, Nicklinson views his carers as strangers, indicating that the caring relationships required for dealing with the physical aspects of his being may not be appropriate.

Caring practices that fail to respond sensitively to a person as someone worthy of value can damage self-worth, sometimes irrevocably, and a loss of self-worth can be feared more than death.

Care also extends beyond the physical necessities of life. It includes re-connecting Nicklinson to a meaningful life, not just with a device like the Eye-blink computer, but through worthwhile involvements in his community, recognising the contributions to life that he is still able to make, regardless of his physical condition.

Nicklinson insists he does not need the protection of those who would keep him from securing his death because he is not vulnerable, by which he means he is not someone who is unable to make a decision for himself.

But he is vulnerable in many other ways: his life is vulnerable to being colonised by strangers who can undermine his self-worth; he is vulnerable to the messages that are conveyed to him through the attitudes and practices of those around him; through them he is vulnerable to the values and expectations that modern society extols when it disseminates a very narrow view of 'normality', so that those who fall outside the bandwidth are made to feel undignified and unworthy.

Our human condition is both resilient and fragile; breakdown is intrinsic to it along with the propensity to transcend adversities. We suffer when we experience breakdowns, as they interrupt the ways in which we ordinarily make sense of our lives.

Responding to breakdowns requires resilience: it involves changing our trajectory to incorporate the breakdown in some coherent way, which in turn requires the world we live in to re-integrate us on our new path. Recognised by others as persons of value, we find a place to belong and a life worth living.

The kind of heroism required to live 'locked-in' is not something we can impose on someone, because to shape a worthwhile life in this situation needs informed and non-coerced compliance. There is however a person in Dunedin who has chosen this difficult path and who many regard as an inspiration to others in terms of how he has shaped his life. As every human being responds differently to extreme circumstances, fortitude or heroism cannot be mandated and can only be applauded when it occurs.

However, when the world we have created leaves no place for those whose troubles are too complex for 'fixing', we might well be impelling them towards ending their own lives, because we give them no alternative way of ending their suffering. It is important to ask ourselves whether we should be creating this kind of world, where if you are too impaired to rock and roll, it is time to die.

* Lynne Bowyer and Professor Grant Gillett are researchers at the University of Otago's Bioethics Centre