Part one of our blog series on dignity and dying: Andrew Grey on the role of resources, and why we should be concerned by Polly Toynbee.

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Assisted dying is again in the news, as Noel Conway who is living with motor neurone disease took his case for the right to assisted dying to the Court of Appeal.

His arguments are powerful. His suffering is real. His lawyer summed up the crux of the tension saying: “Mr Conway reiterates that, if suitable safeguards are in place, the wider interests of society cannot possibly be said to require him to undergo such a death in the name of securing against possible risks to weak and vulnerable individuals.”

That is a big if. It is these risks to weak and vulnerable individuals that have prompted counterprotests by disability groups outside Parliament this week. Many of them fear a change in the law, and some of the arguments around the issue reveal why.

In a recent article in The Guardian, Polly Toynbee made the case for legalising assisted dying. Like many campaigners, she advocated this as a person’s right to die.

But unlike many supporters of assisted dying, she explicitly suggested assisted dying needs to be considered for those with dementia. Noting the fears people have of developing this condition, she wrote that most people are appalled by the thought of ‘being an intolerable burden to their family’.

Not only family, but also the struggling health and social care system – for she also said that ‘cost is inevitably part of the reason why we need this law’. These arguments for legalising assisted dying may be shocking to some, but they’re inevitable at a time when both the health and social care systems are under increasing financial strain. Earlier this year the British Medical Association (BMA) argued that the NHS is ‘struggling to cope with unprecedented rising patient demand against a backdrop of crippling financial restraint.’

Clearly then, the debate around assisted dying is not one which can ever just be about choice as an expression of dignity. It is also (mainly) a debate around the resources – in other words, time, training, and attention – we are prepared to invest in end of life care.

Of course, for most advocates of assisted dying, their motivation is not saving on the costs of care. The vast majority see it as enabling people to have dignity by giving the choice and autonomy to die when and how they want. That’s why, for example, the main campaign group for legalising assisted dying in the UK is called Dignity in Dying. Their compassion and drive is laudable.

Noel Conway has understandably argued he is best placed to decide what is a dignified or undignified death for him. For him choice and autonomy are a vital component. However, dignity is a crucial term that shapes the debate. It is important that we reflect on it is being and should be used.

Polly Toynbee’s article shows us why. If our conception of dignity might lead to people choosing to end their own lives because they feel they’re an ‘intolerable burden’ to their families or the NHS, we should be worried. If dignity is located in choice and independence, those whose choices and independence are impeded, such as the disabled or elderly or those with dementia can’t help feel, by implication, undignified.

To understand better what dignity in dying might look like beyond this narrow definition, I spoke to a range of doctors, nurses and chaplains with extensive experience of caring for people at the end of life. Their insights are shared in the report Dignity at the End of Life: What’s Beneath the Assisted Dying Debate?

In contrast to an understanding of dignity as choice and control, the report explores the concept of dignity as a person’s worth or value, which is intrinsically linked with the nature of human beings as relational – for the quality of our relationships are central to our meaning and wellbeing in life.

I asked these healthcare professionals what this understanding of dignity looked like in their practical daily experience with people at the end of life. For them, it meant showing people who are dying that they, and the people who are important to them, are valued. They showed this in the way they behaved towards them – making an effort to get to know them, and communicating with them as fellow human beings rather than as patients on a list. Were they at peace with the fact that they were dying? Were they troubled by any unresolved conflicts, or estranged from people they loved and wanted to see before they died? Were they worried about the afterlife?

The debate around assisted dying is not an abstract matter of the limits of choice. In fact, the most significant issue when thinking about dignity is the amount of resource that we are prepared invest in end of life care. Appropriate levels of resource create the space where people can experience dignity. Conversely, people could have the ‘dignity of choice’, but be completely bereft of dignity in the round.

When professionals invested the time, care and resources to protect a dying person’s dignity, they managed to address many of the concerns that tend to lead people to consider assisted dying – such as fear of dying in pain, or humiliation from incontinence. In doing so they helped people to see themselves not as burdens on the health and care system, but as human beings worthy of a good, dignified death.

Polly Toynbee may believe that some people seeing themselves as intolerable burdens, alongside the costs of their care are reasons to consider assisted dying. I believe it is essential that we show people they matter at the end of life, not least with our resources. No one should feel obliged to end their own lives because other people have failed to communicate to them their intrinsic worth – their dignity – as human beings. Noel Conway’s case is heartbreaking, but alongside compassion for his suffering the wider social risks of legalising assisted dying remain worryingly real.

Andrew Grey is the author of the Theos report 

Dignity at the End of Life: What’s Beneath the Assisted Dying Debate?

He will be speaking at a Theos event on 10 May: more details here.

This is the first in a series of blog exploring various aspects of dignity at the end of life.