Today terminal cancer patient Helen Kelly has lent her weight to Lecretia Seales’ case – calling for people to be allowed the option of assisted dying. Contrast this with Stuff’s article yesterday, which told the story of Jayne Malcolm who never wanted to “give up” on her battle with cancer. The response to that is simple –if you don’t want an assisted death, don’t ask for it. Assisted dying is voluntary, you administer the lethal dose yourself once a doctor has provided you the means.
We live in a free society, where generally people have the choice to do what they want. To remove that freedom, the government needs a good reason. The opponents of assisted dying have offered six arguments to back up their case, but as we will see below, none of them have any evidence. That only leaves their belief in the sanctity of life above all else; which a spiritual belief held by a few people. It is hardly a good reason to make a law that governs other people’s choices.
Let’s look at the arguments against legalizing assisted dying, and whether they stack up.
1) Good Palliative Care Avoids the Need for Assisted Dying
The argument is essentially one that says the loss of dignity, the pain and mental suffering that is associated with dying from an incurable illness can be alleviated by high quality palliative care.
There are two issues to look at here in terms of the research
1) Does the provision of high quality palliative care remove indignity, pain and suffering specifically and
2) Does removing that pain, suffering, and indignity also remove an individual’s desire to have an assisted death?
Evidence that Good Quality Palliative Care Removes Suffering and Indignity
A look over the body of evidence regarding on palliative care provision is mixed. Lets take two examples: palliative care at home can reduce the burden of suffering, while there is little evidence that improving palliative care quality in rest homes (where many deaths occur) improves outcomes for patients.
While this is not the definitive word on the research, it is fair to say the argument that good palliative care can remove or manage all suffering, pain and indignity experienced by dying people does not stack up. This is not surprising as palliative care is underfunded and under researched in many countries. It is certainly not appropriate for us to say palliative care does not remove pain and suffering (it clearly does), or that we should not continue to invest heavily in finding out what the BEST palliative care actually looks like for ALL people, because our current system of palliative care clearly does not meet everyone’s needs.
Evidence that removing suffering and pain removes the desire for an assisted death
In those cases where we do remove suffering and pain effectively (which we have yet to know how to do consistently for all patients) does it remove the desire for an assisted death? The best evidence we can look to is treatments for depression as many argue good quality treatments for depression and hopelessness will reduce the desire for an assisted death among the terminally ill. However, there are no randomised control trials yet to support the claim that such therapy ends the desire to hasten death (though it may reduce distress).
The problem of course with the argument is the assumption that a desire for an assisted death stems from a pathology that needs treatment, either a physical one (pain) or a psychological one (depression, hopelessness). And that we can overcome the desire for assisted death if we can 1) identify that pathology and 2) treat it effectively. To date the evidence does not support this position.
Interestingly, a study following terminally ill patients who requested assisted dying and those who did not found no differences in the prevalence of unbearable suffering for physical, psychological, social and existential symptoms, suggesting it is not the experience of the illness that determines the desire for an assisted death.
Perhaps we need to reconsider the idea that the desire for an assisted death is a problem that needs fixing and can be fixed? Perhaps comprehensive palliative care is about effectively catering for the needs and desires of all people the best way that works for them?
2) Doctors do not want to be held liable or wish to do it
In NZ most palliative care is primarily provided on a day-to-day basis by nurses and overseen by general practitioners who have an interest in caring for those who are dying.
It is important that we know not just what doctors and nurses more generally think of assisting in dying but also those who have an interest in palliative care. The data is limited.
A non representative small survey of NZ GPs found that around half (47.3%) of Waikato GPs support legalising PAD in specific circumstances, 5% did not know and the other 47.3% did not support it. The specific circumstances included adequate safeguards against abuse, a competent request from an adult over 18 who has end stage terminal or irreversible disease (e.g. cancer, motor neuron, respiratory failure). We know little about who these doctors are that support it, and if these findings represents all doctors views.
The New Zealand Medical Council, which registers all doctors in New Zealand has no official position on assisted dying. While the New Zealand Medical Association, a voluntary body that does not represent all doctors, does not support it, it is unclear if their Position Statement is representative of the beliefs of the wider profession.
Either way we need to know what those clinicians (doctors and nurse) who currently specialize in palliative care think.
3) Death and natural dying is an important & fundamental experience for individuals and their families to experience
This is a values based argument. Putting that aside we would ask does assisted dying actually preclude that experience from occurring? What evidence is there that a specific type of dying (non assisted dying) is more meaningful or ‘better’ than another (assisted dying)? Not forgetting that medical treatments have totally blurred the boundary of “a natural death”, why administer drugs that keep a person continually sedated until ‘a natural death’ but not those that end life?
What constitutes a ‘good death’ differs between the patient, the family and the clinicians involved. Research with palliative care nurses and patients showed extremely divergent views on what constituted a ‘good death’.
The question is whose experience of dying are we interested in making meaningful and to whom? To quote one piece of research on the dying experiences of patients
“A good death and a death with dignity may be achieved when death is congruent with the personal values of the patient”
4) Legalising assisted dying is a slippery slope and laws will expand/change to include people who are neither incurable nor at end stage
What is the evidence from overseas on this?
It is legal for terminally ill competent adults to seek a physician assisted death in the US states of Oregon, Montana, Washington, Vermont, and California. The wider more encompassing laws (that include assisted suicide and euthanasia) exist in various forms in the Netherlands, Belgium, Germany and Switzerland.
The original laws that were introduced in these countries have not changed since their introduction, with the exception of Belgium who had allowed for the inclusion of terminal ill incurable children who are conscious of their decision and are in an end stage of death. Germany has been talking about tightening their law.
There is no compelling evidence for the legal slippery slope.
5) Vulnerable Groups will be at Risk From Abuse of the Law (e.g. those with mental illness, the elderly)
In the US the numbers of PADs are very small. In 2013, about 300 Americans who were terminally were prescribed lethal medications, and 230 died from the result of taking them, so abuse is likely to show up quickly.
A study drawing on the formally collated health data and three independent studies, found that in both Oregon and the Netherlands the lives of vulnerable people (including the elderly and mentally ill) were not ended by assisted dying at any greater rate than those from other non-vulnerable groups. The conclusion was that “Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups”
The validity of the Oregon data has been questioned with the specific suggestion that those who are depressed are in fact more vulnerable to PAD. However, as we have discussed we need to thoroughly test that assumption that a desire for PAD stems from a psychological issue that can be fixed, as opposed to being a value intrinsic to that individual.
There is a legal summary (from the Canadian case of Carter vs. Canada) of what has occurred in overseas jurisdictions where assisted death is legal, with regard to abuse of the law. The conclusion is the “…empirical researchers and practitioners who have experience in those systems are of the view that they work well in protecting patients from abuse while allowing competent patients to choose the timing of their deaths.”
It is worth noting that the likelihood of abuse depends very much on the framework of the law put in place. Physician assisted dying for terminally ill adults who are competent and consenting is likely to be very difficult to abuse. In the US two doctors must confirm the terminal nature of the illness with a life expectancy of less than 6 months, and a request for PAD must be made twice over a set period of time, and the individual assessed for mental capacity and familial pressure to ensure true consent.
In terms of elder abuse, we also need to ask why we are concerned that this may be an issue? As we have previously discussed what framework for end of life care do we currently have for the elderly that may lead to abuse?
6) We will make mistakes about whether a person is terminally ill.
In reality professionals make a call about the terminal nature of an illness every day when they offer people ‘palliative only treatments’ and define people as being ‘end stage’. Certainly medical professionals make mistakes. Predicting life expectancy is a very difficult thing for doctors to do, but research indicates if anything for those with advanced and incurable disease doctors tend to be overly optimistic about life expectancies. However, the development of better prognostic tools would help with this particular concern.
So overall what support do the arguments against assisted dying have in research?
The answer appears to be very little. There are certainly some grey areas where more research would be valuable for the conversation, but currently none of the claims made against legalising physician assisted suicide can be backed up with quality data.
So what do we have left if there is little evidence to support many of the arguments against assisted dying? We have a moral issue, one that is really about what we believe about WHO gets to decide the manner and nature of a dying person’s death? Do we ALL have the same value set – that the process of dying ‘naturally’ is a meaningful/spiritual event for every person and constitutes a ‘good death’? If we do not all hold to the value that life is sacrosanct regardless of quality, then imposing it on others surely goes against the spirit of what New Zealand society is about?
I want to end with some reflections on how the evidence relates to my story about the death of my stepfather.
Could Seb have better care? Yes he could have. Was his pain well managed? Probably – but in the last few days of death no one can really tell you whether pain is managed well, except ironically those who no longer can. Was his dignity intact? No. The carers did a kind and empathetic job of the things he never wanted done. But his dignity was never going to remain intact because dignity is a matter of personal interpretation, others don’t get to decide how dignified you feel, and he never felt it, he endured. If all this were different would that have changed his desire? Probably not, he was clear before his diagnosis and after that he wanted to hasten his death if he had cancer. His fundamental belief never shifted not for a moment. It was who he was.
While being there with Seb when he died was an act of love and human faith, and a privilege for me, I would have felt that way if he had died in a way that reflected his values too. It is the person who is dying’s privilege to determine what a good death is for them. Given the lack of evidence for the arguments against legalising PAD, perhaps it is time for the law to recognise that?
The latest select committee to “investigate fully public attitudes towards the introduction of legislation which would permit medically-assisted dying in the event of a terminal illness or an irreversible condition which makes life unbearable” is soon to start discussions with public submissions on the bill closing on February 1st.
The Select Committee will investigate: 1. The factors that contribute to the desire to end one’s life. 2. The effectiveness of services and support available to those who desire to end their own lives. 3. The attitudes of New Zealanders towards the ending of one’s life and the current legal situation. 4. International experiences.
We encourage you to make a submission to the select committee, which you can doonline , by email, or by post. Alternatively, you can complete this form and it will be submitted on your behalf via email.
Please note submissions are public.