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Door to dignity

Pippa Knight: Opening a door to dignity?

Pippa Knight was a healthy infant when at 20 months she suffered an acute necrotising encephalopathy, and sustained very severe brain damage. She was totally dependent on mechanical ventilation, despite which she had frequent oxygen desaturation, requiring immediate nursing and physiotherapy. Her mother was proposing that Pippa should have a tracheostomy, and ultimately return home. Her daughter was in a persistent vegetative state, and the Trust sought to withdraw life-sustaining treatment.

The case was heard first in the High Court, and then at appeal. During this judicial process, the court found that the concept of dignity did not help in identifying where Pippa’s best interests lay.

Whilst the recently incapacitated young person or adult may have values, wishes and beliefs that can reliably be ascertained or deduced, the court found that these elements cannot be divined in a five year old who suffered severe brain damage in the second year of her life. The judge pointed out that we may all think we can recognise dignity when we see it, but the description of someone’s life, or death, as ‘having dignity’ is highly subjective. This is illustrated by the fact that whilst some legal cases have asserted that an individual’s dignity has been honoured by continuing to sustain life, in others ‘dignity’ has been deployed to persuade judges to withhold life sustaining treatment. The court reflected that for some people ‘...there is dignity in enduring suffering; for others, prolonged suffering constitutes a loss of dignity’.

The notion of what a dignified death for Pippa might represent was also considered.

The Trust was proposing withdrawal of ventilation in a planned manner in hospital, palliative care then allowing Pippa to die peacefully with her family. Witnesses for the Trust warned of the reverse, where uncontrolled desaturation could lead to sudden death in ‘chaotic’ circumstances, in the absence of her family. These two possible outcomes were used as illustrations of promotion of dignity in the first instance, and its loss in the latter. Pippa’s mother strongly disagreed, unable to think of ‘anything more undignified’ than the prospect of a planned death ‘…in the corner of PICU’. Given these very different views expressed to the court about what might constitute dignity for Pippa, either in life or in dying, the judge rejected the notion that he could presume to adopt ‘some supposedly objective concept of dignity’ to determine her best interests.

On behalf of Pippa’s mother during the appeal court hearing, counsel observed that dignity was not a ‘touchstone’ (serving by itself to identify best interests). Alternatively, counsel for the Children’s Guardian (representing Pippa’s interests in court) contended that in addition to the principle of sanctity of life and the principle of self-determination, the court in Pippa’s circumstances should take into account the principle of respect for dignity of the individual. He asserted that both the burdens of her intrusive treatment and the potential benefits of treating her at home, surrounded by her family, are both aspects of the principle of respect for an individual’s dignity. A person ‘...with no awareness of their circumstances can still be afforded dignity, or treated with indignity, by the manner in which they live and the way in which they are treated’. Although the Court of Appeal did not embark on an analysis of these arguments (because no parties challenged the first instance judge’s ruling that he could not presume to adopt the concept of dignity) it did acknowledge that the concept of dignity might in the future need to be addressed by a judge.

There is wide recognition that the attributes associated with ‘human dignity’ are not a way of doing life; rather, attributes of being alive. Those who are participating in the human adventure flourish on that journey; irrespective of whether they have the neuronal connections to appreciate they are flourishing. It all turns on ‘being’. So many of us have seen incapacitated patients but none would deny the existence of their dignity.

It is for these reasons that judicial evaluation, of how the principle of respect for dignity might apply when considering a person’s interests, would be welcomed.

Robert Wheeler
Department of clinical law, March 2021