October 20, 2024
An Exitorial on the UK’s End of Life Debate
There is only story in town this week and it is about the movements within the UK legislative system for an end of life law.
Labour backbench MP, Kim Leadbeater, is the latest flag-bearer.
Over the years Exit has reported on this possibility many times.
Each time we have been critical: some might say overly so.
The Short-Comings of the Medical Model
- It is certainly better to have an end of life law for the terminally ill than no law at all.
- But a law whose qualification criteria is degree of illness and likely time to death gives little relief to the masses.
- This is because a law that says that you must be terminally ill with < 6 months to live (12 months if neurological) will only ever help a very small group within society.
- A law of this nature makes doctors the gate-keepers, not only in terms of diagnosis but in the actual assistance that can be provided.
- While patients can ask their doctors to help them, it is the doctors (2 or 3 or more) who will decide who is eligible.
- In reality, this means it is the doctor, not the patient who has control over the dying process.
- The patient can ask, the doctor (or rather panel of doctors) can agree or not …
- And with the gate-keeping role in these ‘medical model’ laws comes control over the method of death (normally pentobarbital).
- Only doctors can prescribe such an important drug. This requirement enshrines the control of the medical profession over the dying process.
- If you are seriously, but not terminally, ill? This law is not for you. If you have dementia? This law is not for you. If you want to die with your spouse? This law is not for you. If you don’t want to use drugs as your means of death? This law is not for you. And so it goes …
The Split in the Movement
At the current time, the right to die movement is split down the middle.
The Medical Model
On the one hand, is the medical model (described above). This model has been in the ascendancy although as the end of life choices experiences in countries such as the Netherlands and Canada has shown, for a law to reflect the needs of a modern society, the medical restraints can and must be rolled back.
Mental illness must be a consideration (including dementia) and young age.
The Human Rights Model
On the other hand are the distinct rulings in 2020 of the Constitutional Courts of both Austria and Germany.
Four years ago, these courts confirmed the constitutional ‘right of personality’ (human right) in regards to assisted suicide.
The Courts ruled that an expression of personal autonomy, includes a right to self-determined death.
And that the associated freedom to take one’s own life in a self-determined way, also includes the freedom to seek help from third parties.
These rulings took a stance that predicated assisted dying on the rights of personality. This meant that the right to ask for help to die was embedded in a rights discourse: a human rights discourse.
Despite the ruling, and in an act of irony, Austria would go on to regulate in a way that only the seriously ill ‘benefit’ from the fundamental human right that is ‘a good death’.
As if there is no other model to consider.
Switzerland
Switzerland is the other jurisdiction which, through a quirk of history, allows almost universal access to a good death.
In this country, qualification criteria is based on age, mental capacity and the ability to do the action that brings about the death oneself.
The Nay-Sayers
This week it was reported by the BBC that the Archbishop of Canterbury, Justin Welby, thinks that the idea of assisted dying is ‘dangerous’. He thinks that it would lead to a “slippery slope” where people would feel ‘compelled to have their life ended medically’.
This argument is not new. The opposition of the church was one of the main forces that led to the loss of the world’s first right to die law: The Rights of the Terminally Ill Act of the Northern Territory of Australia back in 1997.
This is the type of scare-mongering that proponents of assisted dying continue to face, despite the utter lack of fact-based research which attests to such a runaway ‘slippery slope’.
In reality, the risk is that the terminally ill will be begged to ‘keep fighting’, to keep trying ‘to stay alive’: not for their own sake but because that is what those around them are asking.
This forced existence is rarely referred to by those who say ‘no’.
The issue of choice becomes a side issue for those who think they know what is best for the rest of us!
A Word about Palliative Care
The one clear winner in many jurisdictions which have legislated on end of life choice is the palliative care sector/ industry.
In their efforts to appease those on the other side, advocates of assisted dying tend to agree fully that much more funding is needed for end of life care before any end of life choices law can be contemplated.
While there may/ may not be a rationale for increase in funding and better services (depending on the country concerned), there is the ongoing criticism that palliative care has its limits.
While palliative care may be good at alleviating pain and making the person more ‘comfortable’, it is no magic panacea.
Some people want palliative care, others do not. Some take the good bits of home care but skip the drawn-out, terminal sedation of the hospice.
Some even say that they would rather save the State money.
With its roots in religious pastoral care, palliative care is hard to criticise.
Watch this space is it gets the ‘quiet achiever’ award, regardless of what happens to the Leadbeater bill.
Summary
Medical model advocates often argue that a medical law is the first step in a long road to end of life laws being introduced.
And they may be right.
But the downside is that, and as history has shown, once the medical profession colonises an area of human existence (eg. child birth), it can be very hard for the real stakeholders to reclaim their voice.
Yes, it is important to introduce a law with the least moral panic possible.
However, at what cost to the majority who may believe that a good death is everybody’s right.