Why everyone should write an Advance Decision – the case of Paul Briggs

The case of Paul Briggs, reported in the Daily Telegraph and other papers, highlights why everyone should write an Advance Decision (AD) to refuse medical treatment in case they are ever in a situation where they would wish to refuse treatment, but are unable to speak for themselves. Mr Briggs situation shows how this could happen to anyone at anytime. ADs are not just for elderly people whose death in imminent.

PC Paul Briggs (43) was involved in a road accident 17 months ago and is in a permanent vegetative state. The Telegraph article reports that his wife believes that the withdrawal of treatment is in Paul’s best interests given his previously expressed wishes, injuries and his current condition and prognosis. The doctors treating him think differently. The case is going to court.

If Mr Briggs had written an AD the situation would be easier, though still tragic. For example, his AD might have said something to the effect that if he was in a coma or vegetative state for over 6 months, with little prospect of him regaining the minimum quality of life he would wish for, then he refuses all treatment aimed at prolonging his life, including artificial breathing, feeding, and hydration. He could have given his own examples of what constituted a minimum acceptable quality of life for him. This would help ensure he would be allowed to die.

An AD like this is not only legally binding on medical staff, but more importantly it is also easier for both relatives and medical staff, as they have a clear record of the patients wishes to guide their decisions, and so are much more likely to reach agreement and avoid the situation of Mr Briggs where his wife is having to pursue her case through the courts. Everyone – medics and relatives alike – I’m sure would want to act in Mr Briggs’ best interests, but without a record of his wishes it can be difficult to agree on what that is.

For more information on Advance Decisions, end of life planning and how to write yours, see this page, and the recent MDMD lecture given by Prof Celia Kitzinger, a leading expert in ADs.

Please encourage your friends and family to complete their ADs.

It is ironic that only 4% of people have written ADs – an existing legal right to give people some control over what happens to them if they loose mental capacity – whereas over 80% are in favour of some form of assisted dying. Advance Decisions will still be required even if assisted dying is legalised as they apply when a person has lost mental capacity, whereas it is highly likely that legalised assisted dying would only be permissible when a person still has the mental capacity to request that option. An Advance Decision would have helped Mr Briggs, Assisted Dying legislation would not.

UPDATE 20th December 2016: Court finds in favour of family

UPDATE 5th July 2017: The implications of the court case are discussed in a paper in the Journal of Medical Ethics July 2017 – Volume 43 – 7 : When ‘Sanctity of Life’ and ‘Self-Determination’ clash: Briggs versus Briggs [2016] EWCOP 53 – implications for policy and practice by Jenny Kitzinger, Celia Kitzinger and Jakki Cowley

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Dementia now leading cause of death

A BBC report highlights the latest statistics published by the ONS on causes of death. Dementia (including Alzheimer’s disease), is now the leading cause of death, accounting for 11.6% of all deaths in 2015. This has now overtaken coronary heart disease, though for men that still remains the leading cause of death.

For those over 80 years old, dementia is the leading cause of death for both men (13.7%) and women (21.2%). The ONS explain the increase as being “… in part because people are simply living longer but also because of improved detection and diagnosis”.

The statistics underline the importance of extending the scope of proposed right-to-die legislation beyond those who are within 6 months of dying. Dementia is a terminal illness where the time from diagnosis to death averages 7 years. It is a cruel way to die – few people would find it the “good death” they might hope for.

In the early stages, dementia sufferers retain their mental capacity. MDMD campaign for people in the early stages to have the option of an assisted death if that is what they wish, in order to avoid the suffering caused by the later stages as mental capacity ebbs away. Even the best palliative care is unable to relieve the loss of dignity and personal identity that later stage dementia brings, though some sufferers have so little capacity that they are unaware of the true nature of their condition.

We urge politicians, medical professionals, and Dignity in Dying¹ to recognise that some people, quite rationally, do not want their lives to end this way and would much prefer the option of a medically assisted death – even if their life is a little shorter than medically possible. They believe in quality of life, not just quantity of life at any price. These vulnerable, mostly elderly people, who ask for help to die, deserve our compassionate, legalised assistance, provided it is their own, well-considered wish, and they still retain the mental capacity to make the decision.

¹Dignity in Dying “believe everybody has the right to a good death. Including the option of assisted dying for terminally ill, mentally competent adults.” Unfortunately DiD interpret “terminally ill” to mean within 6 months of dying – something doctors can not accurately predict. People dying with dementia will generally no longer have sufficient mental capacity by this stage, so the DiD policy will not help people with the most common terminal illness – one which can be very unpleasant in its later stages, and where an assisted death could avoid huge suffering.

MDMD believe it is time for DiD to change their approach in the light of the increase in dementia as a cause of death.

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My Death, My Decision is a company limited by guarantee, registered in England company number 11758121 and located at Unit A 39 Moreland Street, London, EC1V 8BB.