Voluntary Assisted Dying Legislation Should Respect Human Rights
By David Swanton
Published 21 May on The Good Death Society Blog, A Project of Final Exit Network.
Most voluntary assisted dying (VAD, voluntary euthanasia) regulatory systems in the world are unsatisfactory. They require that people at the end of their lives jump unwanted regulatory hurdles to access VAD. Reaching the right balance is not hard, but only the Swiss regulatory system comes near to what people want. The best regulatory systems must be justifiable ethically: they should respect human rights, allow people to optimise their well-being and avoid suffering, and protect volunerable people from accessing lethal drugs.
That is one conclusion we could draw from a survey I conducted in 2021. With the assistance of the World Federation of Right to Die Societies and Exit International, I surveyed VAD advocates and supporters around the world to inject some much-needed data and objectivity into the VAD debate. The aim was to understand their priorities and obtain their views on eligibility and other criteria for VAD (summary report, results and supplementary material are available at https://www.ethicalrights.com). There was no intention to survey all people to gauge whether VAD is popular, that outcome is clear. Depending on what is surveyed, usually 75–85% of people support VAD.
Respondents to the Ethical Rights Survey were mostly over 50 (84% of respondents), 72% had at least one university degree, 61% were female and 75% were not religious. Their most supported VAD eligibility criteria included that a person be well informed, have decision-making capacity, and make a voluntary decision to end their life. These might be the only eligibility conditions required if governments legislate a human rights VAD model.
However, many governments worldwide have legislated a medical model for VAD. That usually requires that multiple doctors certify that a person is terminally ill or suffering unbearably, has limited life expectancy, and is otherwise a suitable candidate for VAD. Additionally, some systems require that a person be a resident or citizen. All these criteria had less than 26% support.
We can consider why these medical model criteria have been, and should be, rejected.
We accept that doctors should not reject a person’s decision to have an abortion. Ethically, a woman has a right to make decisions about her own body. We should similarly oppose VAD medical models that permit doctors to reject a competent person’s request for VAD, as it would infringe on their individual liberty. Individuals are responsible for their own lives, not doctors. Doctors might have a role in administering drugs—only if the person requests and is unable to do so themselves—but no more.
Significantly, survey respondents did not support being terminally ill or having limited life expectancy as eligibility criteria. Only 22% of respondents considered that terminal illness should be a VAD eligibility criterion, although 100% said that being terminally ill was sufficient to access VAD. For unbearable suffering, these figures were 34% and 80% respectively. That is, it should be unnecessary for a person to be terminally ill or even suffering unbearably to access VAD, but if they are, that should be sufficient for them to access VAD. That majority view is consistent with a human rights VAD model. It would be wrong to discriminate against people because they are not terminally ill or not suffering unbearably.
Additionally, 65% of respondents thought that a child suffering unbearably could access VAD. It is unjust discrimination if only adults can access VAD legislation, while children in similar dire circumstances must suffer as they cannot. Civilised societies can do better. While young children suffering unbearably might not be able or sufficiently well informed to make a voluntary decision, their parents, guardians, and doctors could, as in other medical matters, act in the child’s best interests. The child’s well-being is paramount; no child (or person) should ever be forced to suffer.
There were many interesting survey responses. Respondents supported a request for VAD in an advance directive, which stipulates the conditions under which a person could access VAD if they were incapable of deciding at a later stage, including after the onset of dementia. This occurs in some countries already. Most supported immediate access to VAD if a person is in palliative care or is of advanced years. If the latter were legislated, it would mean that people like 104-year-old Dr David Goodall, who was not terminally ill but in 2018 travelled from Australia to Switzerland to die, would not need to do so. Indeed, most respondents did not want to leave their country to die. In the absence of VAD legislation, Goodall was not permitted to die on his own terms in his own country.
Unfortunately, the VAD debate has been less than mature in many places. We need a policy objective—perhaps ‘to ensure that all people have the right to access VAD so that their quality of life is not reduced below what they consider to be an acceptable threshold’—to guide regulatory action. Only VAD legislation designed to achieve the policy objective should be developed.
The survey challenged respondents with some unusual scenarios. Although palliative care can be important for many people at the end of life, 45% of respondents did not want to die in hospital with palliative care. Should being pregnant, having a mental illness or having dementia make a person ineligible for VAD? Most respondents did not think so.
Should a murderous criminal be ineligible to access VAD? Only 16% of respondents thought so. But that increased to 33% if the criminal was still subject to police investigations, for example, if they were refusing to divulge to police where all their murdered victims had been buried.
Although 26% or respondents thought a newborn infant should be ineligible for VAD, 74% considered that there may be circumstances under which an infant might need VAD (with guardian/doctor consent). One such circumstance is an infant being born with a disease that will result, for example, in the infant’s certain, traumatic, and painful death within 40 days. Any decision in this tragic situation will be difficult, but the straightforward choice cannot be avoided: the infant either suffers until they die, or they are assisted to die to avoid suffering.
Some people may have other reasons to die. For example, there have been people suffering from locked in syndrome, in which they are fully aware but cannot move and can only communicate by blinking, who have wanted to access VAD. If their human rights are to be respected, on what basis could governments deny their requests?
It is important that the actions in these scenarios are justifiable when assessed against the VAD policy objective. There would be different regulatory actions if the policy objective were instead to ‘allow terminally ill adults the right to die, subject to doctor approval.’ This latter objective does nothing to ease suffering for many people nor respect human rights.
All governments should be developing best practice VAD legislation that meets the needs of people who are suffering. It should be consistent with human rights principles and legislation and reflect the views of people who might make use of VAD, including those expressed in the Ethical Rights Survey. Such VAD legislation, similar to a Swiss human rights model, would allow all people the option of avoiding suffering at the end of life.