In 2015 dementia became the leading cause of death in England and Wales according to the Office of National Statistics (ONS). Since then the rate has continued to rise. The latest figures for 2018 show more than 1 in 8 of all deaths (12.8%) are caused by dementia, and for women over 80 this rises to 1 in 4.
The term “dementia” covers a lot of different illnesses. Alzheimer’s disease accounts for 75% of cases, vascular dementia, (a series of mini-strokes in the brain), 15-20%, with the remainder including frontotemporal dementia, Huntington’s disease and Lewy-body dementia. What they all have in common is a gradual loss of mental capacity, typically over many years, leading to eventual death, unless the patient dies of another cause before then. Death from dementia occurs on average around 7 years after initial diagnosis.
In the early stages, the sufferer retains mental capacity and can live independently, though they will need increasing amounts of support. In the later stages, mental capacity is lost. Patients are unable to remember recent events and may be unable to feed themselves. 24-hour care is essential, often in a specialist nursing home. Patients may be unable to move, or alternatively may need to be kept in a secure environment to prevent them from wandering off and getting lost. The ability to recognise friends and family is lost. Meaningful communication becomes difficult or impossible. In some cases, patients may lose inhibitions and turn violent or abusive. Although some patients appear to resign themselves gracefully to their declining abilities, others find the increasing confusion and lack of control very upsetting and frightening.
Few people would hope for this end of life. An opinion poll in March 2019 found that 88% of those surveyed thought a medically assisted death, at the patient’s request, was acceptable for those in early stage Alzheimer’s disease while the patient still had mental capacity, in at least some cases.
Without a change in the law, people who receive a dementia diagnosis have stark options. Some, like Sir Nicholas Wall, take their own life, in private, without incriminating others. He did so, violently, after moving into a care home, while he still could. Many of those who try to end their life fail, as movingly portrayed in the film Still Alice.
Others, like Alex Pandolfo, make plans to go to one of the Swiss organisations offering a medically assisted death. In Switzerland a medically assisted death can be given in cases of dementia provided the patient has mental capacity at the time of death. Once dementia has been confirmed and the details accepted, Swiss organisations give the “green light” for the assisted death to take place. This in itself gives relief to those contemplating this option. The problem for dementia sufferers is that they then have to judge how long they can wait. Going too soon deprives them of a period of acceptable quality of life, albeit with reducing capabilities. The risk is that if they leave it too long they will lose mental capacity, depriving them of the Swiss option.
Those who do not make their arrangements before they lose mental capacity are at the mercy of their relatives and carers. A very disturbing story of a husband who shot his wife dead in her nursing home, claiming that she “had suffered enough” shows what lengths some people can go to. The wife was suffering from dementia, though in this case the husband was also found to be suffering from dementia himself. He was found guilty of manslaughter and sentenced to 6 years in a psychiatric hospital.
Recent attempts to change the law in England and Wales on assisted dying have proposed restricting assisted dying to those who both have mental capacity to make a life-ending decision at the time of their assisted death, and also have a life expectancy of six months or less. Such a law would be of no use to the 1 in 8 people who die of dementia as by the time their life expectancy is reduced to six months, (assuming they have no other terminal conditions), they will no longer have sufficient mental capacity. This is one of the reasons why MDMD campaigns for a broader law. (Indeed such a restricted law would be discriminatory, as outlined in a BMJ opinion piece by two leading medical professionals.)
There is strong opposition to a change in the assisted dying law in the UK. One of the arguments used by those who oppose a change is that people who are dependent on life-sustaining medication can legally refuse it, thereby causing their life to end. This option is not available to those with dementia unless they have other conditions which cause them to be dependent on life-sustaining medication. When asked how someone could avoid the end stage of dementia without a change in the assisted dying law, Baroness Ilora Finlay, a professor of palliative care and a strong opponent to a change in the law, said: “Putting it bluntly, there’s no law against committing suicide.” When pressed on how a dementia sufferer could do this she went on: “there are people ordering drugs over the internet now and taking overdoses”. Although she was very clear that she was not suggesting that people should do this, the mere suggestion of this illegal and highly risky approach is frightening and shows a very surprising lack of compassion. Surely there must be a safer way to ensure people have a good death?
Although Switzerland is the only country to admit foreign nationals for medical assisted dying, a few other countries now provide this option for their citizens. Belgium and the Netherlands not only allow a medically assisted death for dementia sufferers in the early stages when they still have mental capacity, but they also allow euthanasia for people with dementia who have written a valid advance decision requesting euthanasia when they reach a particular point in their cognitive decline after they have lost mental capacity. At first sight this seems like a promising approach, however, there are a number of concerns:
- It puts a huge responsibility on relatives and doctors to make a decision on behalf of the patient. When has the patient reached the right point? Cognitive decline is not a smooth process. People have “good days” and “bad days”. At some point, the “bad days” outnumber the “good days”, but is that the right point? And how can others judge this accurately?
- What if there is disagreement among relatives and/or doctors?
- In practice, doctors and relatives may not feel able to carry out the wishes expressed in the patient’s advance decision – so the person may not get what they wished.
- In an important sense the dementia patient who has lost capacity is no longer the same “person” as they were. Their personality has changed – possibly in a way that accommodates their new situation in ways that their old self couldn’t anticipate. Should their prior wishes still be carried out? This situation is rather different from that of an advance decision to refuse treatment for someone in a long-term coma as in that case the patient is no longer conscious.
Whether the Belgian and Dutch law is sufficiently safe and reliable for those who have lost capacity is a matter to be determined over the next few years. There have certainly been some difficult situations that have challenged doctors and the courts.
These concerns are some of the reasons behind MDMD’s objective of campaigning for a change in the law which applies only to mentally competent adults. This is a safer approach for all concerned and is sometimes referred to as the “5 minutes to midnight” approach where the patient ends their life before losing mental capacity, but when this is predicted to occur fairly soon. In practice, euthanasia in late stage dementia on the basis of an advanced decision is very rarely used in the Netherlands or Belgium. In 2017 in the Netherlands, 166 early-stage dementia patients died with medical assistance, compared to only three late-stage dementia patients.
Canada introduced its Medical Aid in Dying (MAiD) legislation in 2016. It applies to those who have mental capacity and whose death is “reasonably foreseeable”. In 2019 after much consideration, the first few applications of MAiD for early stage dementia patients took place. The medical community there is developing guidelines to help doctors carefully assess the MAiD criteria in dementia cases safely.
The Alzheimer Society in Canada are respectful of dementia patients considering MAiD, making this statement in October 2019:
“The right of persons with dementia to advocate for access to MAiD, including through advance requests should be respected. The Alzheimer Society will continue to inform persons with dementia about the legislative processes related to MAiD and any changes to the law.” (MDMD emphasis).
It is particularly interesting that they consider the situation of advance requests. Currently the MAiD law in Canada requires the applicant to have mental capacity at the time of the assisted death, though there is discussion in Canada about the possibility of broadening this.
Dr Ellen Wiebe is a Canadian MAiD practitioner. She gave a very interesting talk to Friends At The End (FATE) in November 2019. The video is available here. In the Q&A that followed, one question asked about the Canadian approach to dementia. (At 36:33 in the video.) Dr Wiebe carefully explained the difficulties and how Canadian MAiD practitioners could, with extreme care, provide MAiD to some dementia sufferers, provided that they retained mental capacity. She explained how, through a series of assessments, doctors could advise on when the patient was nearing the time when they would lose mental capacity, the “5 minutes to midnight” time. Dr Wiebe stated that she had been able to give MAiD to 8 dementia sufferers. She went on to discuss the possibility of extending the law to allow MAiD by an advance request, after mental capacity had been lost. Interestingly she says
I would refuse to provide [MAiD] at this point [after mental capacity has been lost] because I want somebody to tell me ‘Yes, I’m ready to die today’. Every single one of my patients has been able to do that… I need that.
This echoes the concerns above and the reasoning behind MDMD’s campaign policy.
Dementia raises many questions for advocates of assisted dying. On the one hand, many people understandably wish to avail themselves of medical assistance to die to avoid what for them would be an unacceptable quality of life in the late stage of the disease. This is especially true of those who have seen what the illness can do to their loved ones. At his mother’s funeral Phil Cheatle, MDMD’s Lead Campaign Commentator, said: “No one should be sad at Joan’s death. It was the release she had been waiting for, for far too long. We had already lost the person we knew. Our parents teach us many things in life. The last thing my mother taught me was how not to die.”
On the other hand, there is the desire to protect people from making unsafe decisions when their decision making capacity is declining. MDMD welcomes the efforts now being made in Canada in developing appropriate procedures.
An excellent book giving a much deeper analysis of the issues around assisted dying and dementia was published in October 2019. O, Let Me Not Get Alzheimer’s Sweet Heaven! – Why many people prefer death or active deliverance to living with dementia is written by Colin Brewer, a retired psychiatrist who has assessed nearly every British dementia patient who applied to go to Switzerland for a medically assisted death in the last few years.