Retired medical geneticist and End-of-Life Choice Society member, Dr Mac Gardner, explains why the recent discovery of a potential delay in the progression of Alzheimer’s isn’t really the breakthrough it may seem to be.  Possible dementia breakthrough drug may delay degeneration: Otago Daily Times Online News (odt.co.nz).  He pleads for our End of Life Choice Act 2019 (the Act)  to be expanded to allow dementia sufferers access to assisted dying. Such an aspiration will be fraught with difficulties. Nevertheless, the End-of-Life Choice Society NZ intends to tackle the issue at the upcoming legislative review of the Act commencing November 2024.

There are genuine reasons for the difficulties inherent in this quest. They boil down to the ethical considerations of mental capacity and of voluntariness. Quite properly, the Act requires applicants to have mental capacity regarding their decision to hasten death, and to convince two unrelated doctors that they are making that choice of their own volition. No-one with a shred of moral conscience would argue to the contrary and certainly the End-of-Life Choice Society does not.

There are many different types of dementia, each progressing according to its own evolution and causing different physical, emotional and behavioural responses in the sufferer. From time of diagnosis to time of death can be anything from 3 – 12 years but accurate prediction is almost impossible. There are, however, measurable progressions in the disease through seven stages in total, from early, mid, to advanced. Except in the case of a very fast-progressing dementia, the diagnosed person is likely to spend many years with either transient mental capacity or complete mental incapacity.  These are the years many would like to avoid.

Currently, it is estimated that about 70,000 people in NZ suffer from dementia. Future predictions are for an increase to 170,000 by 2050 due to population growth and increased longevity. The incidence of dementia is 30% higher in women than in men. Dementia as a direct cause of death is partly hidden, because advanced dementias are often accompanied by co-morbidities and these may be ascribed as causes of death on the death certificate instead of the originating (or concurrent) dementia.  It is New Zealand’s third leading cause of death after cardio-vascular disease and cancer.  

Aotearoa New Zealand’s eligibility criteria for assisted dying are for death to be foreseeable in “6 months or less” with voluntariness and full mental capacity up to the last minute. The option of using an advance directive to request assisted dying is currently explicitly prohibited in the legislation. This trio of barriers instantly rules out assisted dying for all dementia sufferers.

There are two possibilities for advancing their prospects: one in early-stage dementia and the other in late-stage dementia via an advance request. This would be different from the advance directive/living will we are all familiar with but would operate with similar intent. 

Firstly, let us examine the possibility of a person diagnosed with a dementia and wishing to apply for assisted dying in the early stage of the disease. This may be preferred by medical practitioners because the applicant still has mental capacity at this time and can still display voluntariness, making conversations around the wishes of the applicant concurrently valid. It may also be preferred by the applicant because they know they will retain sufficient mental capacity to see the process through to their own hastened death, thereby removing the uncertainty of relying on others to complete the task after their own mental capacity is lost.

However, the stumbling block here may be society itself.  Human society has a healthy regard for life and an obsessive desire to prolong it. To voluntarily choose an early departure, then, seems unnatural and, to the deeply religious, downright ungodly.  This latter group will petition Parliament to reject early access to assisted dying.

Secondly, let us look at the possibility of accessing assisted dying in late-stage dementia by making use of an advance request completed, of course, while the applicant still has mentally capacity. This may be preferred by society because we recognise the greater proximity of the applicant to their “natural” time of death, even though timing is still unpredictable and probably far off. It may therefore be preferred by Parliament to the limited extent that Parliament represents the wishes of the electorate. But medical practitioners who may be faced with a request to hasten the death of an applicant who is now mentally incapacitated and who cannot therefore give last-minute consent, may find it very difficult. Can they be sure this is what the applicant still wants? 

Conscientious objection is an important safeguard here. Assisted dying doctors, like all other clinicians, have a right of conscientious objection and this should never change. If an applicant’s case does not “look” as if it has merit, then no matter how well-documented the advance request, no matter how many audio and video-recorded sessions accompany the documentation attesting to the mentally competent applicant’s enduring desire to end life when specified trigger points have been reached, the doctor is unlikely to proceed. At the last minute, prima facie may very well trump a faultless legal process in the doctor’s emotional mind. The End-of-Life Choice Society has heard many descriptions of the final days of loved ones living with dementia; they range from unresponsively withdrawn to manifestly tortured.  It would be easier for an assisted dying doctor to agree to follow the advance request of an applicant who is visibly physically suffering and wildly agitated by mental torment than to agree to the same for an applicant sitting quietly in withdrawn bewilderment. Conscientious objection will likely be declared in the latter case, thus thwarting the applicant’s intention.

Notwithstanding these many difficulties, the End-of-Life Choice Society has taken best advice from academics and medical professionals on the issue and has put together a proposed, specialised advance request for dementia sufferers to access assisted dying. As explained above, this would go beyond the usual advance directive that merely takes advantage of our existing right to reject life-prolonging medical treatment when we can no longer speak for ourselves. (You can download the Society’s free advance directive form and read the accompanying booklet here.)  Instead, this is a request that will require multiple steps as safeguards, including repeated interviews with medical practitioners during the period of mental capacity. For surety, others should be present during these interviews which could be video- and audio-recorded as reminders of the firmness (or otherwise) of the applicant’s intentions. Detailed documentation will be essential. The “what ifs?” will need to be covered in the interviews and repeatedly referred to.  A guardian will need to be appointed by the applicant to agree with the medical practitioner concerned when the time is right – that time to be specified by the applicant with detailed descriptors in advance of the conditions arising.

The Netherlands and Belgium legalised the choice of an applicant to access assisted dying through an advance request some 20 years ago. It is an achievable goal if there is visible collective will.  In addition, their legislation allows assisted dying in early-stage dementia in acknowledgement of the fact that death is inevitable with this disease and that the applicant is experiencing anticipatory suffering so great that they are willing to trade away several years of life to escape it. In Canada too, dementia sufferers are already accessing assisted dying (known there as medical assistance in dying or MAiD) in the early stages. These societies, it seems, have overcome that blanket distaste for a voluntary early departure from life.   

In the meantime, what is happening within our own Assisted Dying Service?  Under the current restrictive eligibility criteria, Aotearoa New Zealand’s first year report on assisted dying recorded 257 assisted deaths, equivalent to 0.8% of total deaths in that year.  No breaches have been reported. There have been no reports of “coercion” or “abuse”. The predicted dire consequences of legalising assisted dying have simply not eventuated. The public has not lost trust in doctors: on the contrary, assisted dying doctors are deeply trusted and gratefully valued by their patients. The doctors themselves say that assisted dying practice, although emotionally challenging, is a rewarding and meaningful aspect of their medical practice.