What connects these two recent news stories? Jeffrey Spector, a 54-year-old businessman with a spinal tumour, travels to Dignitas in Zurich to commit suicide, with support from his family; and the Health Service Ombudsman publishes a report called “Dying without Dignity”, which criticises the end-of-life care provided by the NHS.
Campaigners for legal reform argue that Spector’s choice of death shows his search for dignity at the end of life and the desire to retain control: in a word, “autonomy”. But the ombudsman’s report – and a closer reading of the cases which constantly appear in the media – suggest it’s not autonomy. It’s mainly fear.
For some years there has been a persistent and sophisticated campaign to persuade us to bring in a legal right to assistance in committing suicide.
The legal campaign swings between the courts and parliament. In the courts, desperately ill people with a strong call on our empathy – and a very articulate account of their situation and their wishes – are funded to bring human rights cases. In parliament, a series of bills have been introduced, of which Lord Falconer’s House of Lords bill (which he has promised to re-introduce) was the latest.
In the media, litigants waive anonymity to argue their cases before the bar of public opinion – and other cases and stories are presented (such as trips to Dignitas) which present the campaigners’ account of the issues.
All this takes place against a particular demographic and economic background. As everybody knows, we have an ageing population. This means more illness and, inevitably, more people dying. However, the state of the economy makes it difficult to increase NHS funding (even if it isn’t being reduced), and this leads to financial restrictions for end-of-life care.
A great deal of the need is taken up by private hospice care, charitable funding for community nursing support and family and friends. These can do an outstanding job: I will never forget what they did for my mother and sister during the terrible summer of 2006 when they both died of ovarian cancer.
But the ombudsman’s report gives heart-wrenching examples of how it goes wrong and demands solutions to six problems: failure to recognise that someone is dying; poor pain control; poor communication; inadequate out-of-hours services; poor care planning and delays in diagnosis and referral.
None of these problems requires a change in the law, or a reinterpretation of human rights. Everybody agrees we should have a right to decent end-of-life care.
Dignity and control
The fundamental terms of the debate, as framed by the campaigners, are that people should have a choice about how they live and, by extension, how they die. Dignity, in the context of death, is identified not just as a pain-free death but a chosen time of death.
Undignified death is death which lacks autonomy. It is undoubtedly true that for a lot of people, a feeling of being in control of their lives is very important. It matters more to some than others, but it is a legitimate part of our human rights. It is protected by Article 8 of the European Convention on Human Rights.
However, an examination of the ombudsman’s report shows little evidence of the importance of choosing when one dies. It shows people who care about knowing that they are going to die, about being able to prepare to die (mainly by saying goodbye), about choosing where to die and with whom. Naturally, it also shows a concern for pain-free death.
What offends us about the case studies in the report is the unexpectedness, squalor and loneliness of the deaths described. It is this that we fear.
An examination of Jeffrey Spector’s case is instructive. He chose to die “early” because he feared the paralysis threatened by his disease. His response to that fear was to take control.
The chief campaigning organisation has chosen the name Dignity in Dying. The ombudsman’s report is entitled “Dying without Dignity”. But there is a mismatch.
Put simply, if the fears illustrated in the report could be dispelled, we would not need the reform for which the pressure group campaigns.
Timothy James does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.
Authors: The Conversation