‘Five to Midnight’ Before Dementia Takes Over

A BBC story discusses the assisted death of dementia sufferers, in particular the case of Annie Zwijnenberg in the Netherlands. Annie was never in any doubt that she wanted euthanasia, once she had her Alzheimer diagnosis. She delayed as long as she felt she could but she knew that if she waited for too long she would lose the mental capacity to confirm her decision at the time. This would make it much harder for her doctor to help her. In the Netherlands, with an appropriate Advance Decision, euthanasia for someone who has requested it but has subsequently lost mental capacity is legal – though it is controversial.

Dementia is the leading cause of death in England and Wales, with 1 in 8 deaths being caused by dementia, rising to 1 in 4 for women over 80. Many of us would wish to avoid the final stages of dementia where the quality of life is below the level we could accept – or at least, below the level our former-selves, before we lose mental capacity, could accept.

In the UK our options for avoiding end stage dementia are bleak, which is why MDMD campaigns for a change in the law on assisted dying. In Switzerland, those with early stage dementia can have an assisted suicide, but only if they have the mental capacity to make a life ending decision at the time. MDMD supporter Alex Pandolfo is choosing this route and has talked publicly about the difficulties of deciding when to make his final journey there.

Phil Cheatle, MDMD’s Director of Campaign Policy, recently asked Baroness Finlay, a professor of palliative medicine at Cardiff University and a strong opponent of a change in the assisted suicide law, how he could avoid late stage dementia. Her answer, sourcing drugs from the internet, was both astonishing and illegal. MDMD regard this as unsafe and uncaring. There has to be a more compassionate solution instead of people taking their own lives, often too soon, and often in a risky, unpleasant, traumatic way.

MDMD agrees with the Swiss approach that those seeking an assisted death need to have mental capacity at the time of their assisted death. This is a strong safeguard. It also makes a difficult situation easier for those who would otherwise have to decide when to give euthanasia to another person – a responsibility that few would wish to accept.

The BBC story highlights another issue of assisted suicide – an oral method can take a long time. In Annie’s case her doctors eventually decided to give her a lethal injection, which is legal in the Netherlands. A similar issue was illustrated in a recent documentary by Louis Theroux, but in this case, in California, a lethal injection would have been illegal. A better alternative method for assisted suicide seems to be that used at Lifecircle in Switzerland by Dr. Erika Preisig. Whenever possible she uses an intravenous method where the patient controls a valve to start the flow of the medication which will end their life. (It is required by Swiss law that the patient self-administers the lethal medication.) Dr Preisig told MDMD that using this method the time taken to die is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all”.

MDMD campaigns for a safe, peaceful method like this to be available in the UK for those who (amongst others) are dying of dementia and who choose an assisted death as their form of a good death. Currently this choice is denied to people. People like Joan Cheatle, who feel that due to incurable medical conditions, (and typically in old age), their life is complete and they just want to go to sleep peacefully and not wake up. Instead, despite the best care available, they have to suffer for months or years longer than they wish, until they are dependent on life sustaining medication which they can refuse. In comparison, Annie Zwijnenberg in the Netherlands was lucky. She had her wish of ending her life ‘five before midnight’. Something that Joan Cheatle, in the UK, asked for, but was denied.