Editorial by Selwyn Manning.
Be Aware and Beware of What You Demand – A Case Against State-Backed Euthanasia
Proposition: Do Governments legislate in our interest?
In my editorial titled: Be Aware and Beware of What You Demand – A Case Against State-Backed Euthanasia, I reflect back to the mid-1990s to an investigation I wrote that exposed how the government was to enforce exclusion criteria designed to prevent people from accessing life-saving but expensive treatments. If you were blind, intellectually disabled, had a history of mental illness, anti-social behaviour, a criminal conviction – you would be excluded from having renal dialysis. The experience of reporting this confirmed my resolve against state-backed-euthanasia. Here’s why…
Back in the mid 1990s Jenny Shipley (then Minister of Health in the Bolger National Government) established a governmental body called the Core Health Services Committee (CHSC) which was chaired by former broadcaster Sharon Crosbie.
The CHSC was known to exist, but no one paid much attention to it, and also getting information out of it was problematic as it would cite commercial confidentiality as a reason for withholding information. So a lot of its work went under the radar.
Back then, National had created a commercial model that replaced health boards with Regional Funding Authorities (RHAs) and hospitals became Crown Health Enterprises. It wasn’t until 2000, that the new Helen Clark-led Labour-Alliance Government disestablished the RHAs and CHEs and reestablished publicly elected health boards, and, hospitals became public hospitals once again.
But back in the early to mid-1990s the Core Health Services Committee was accountable directly to the Minister of Health, Jenny Shipley, and was tasked with creating health funding frameworks, protocols, criteria that the then RHAs would rely upon when deciding what health services the government would pay Crown Health Enterprises (CHEs) for – when providing health ‘services’ to ‘clients’ (patients).
The Core Health Services Committee was tasked to evaluate a way of reducing the cost-burden on the Government for health services and come up with a set of criteria that CHEs and doctors would have to abide by when deciding which ‘clients’ (patients) would get treatment and, importantly, who would not.
In August 1994, I became aware that the Core Health Services Committee had been evaluating the most costly procedures, including renal dialysis treatment for people with end-stage renal failure. I was told by sources that the CHSC had drafted a document that included a framework for how expensive treatments would be handled, and that the Minister of Health had approved the plan.
Generally, there are two types of criteria:
inclusion – (meaning patients that met certain criteria would be eligible for treatment)
exclusion – (meaning those that could be labeled as possessing or exhibiting specific criteria would exclude then from being offered treatment.
In August 1994, I was leaked documents that displayed how the Minister had approved the CHSC protocols that used exclusion criteria and that the protocols had been presented to doctors and the exclusion criteria enforced.
What this meant was people who presented with end stage renal failure, and who required dialysis to stay alive, would be excluded from getting this life-saving treatment if they were deemed:
* to be blind
* to have an intellectual disability
* had a history of mental illness
* exhibited or expressed anti-social behaviour
* had a history of imprisonment
* had an unrelated health condition that may cause complications
* were over the age of 65-years…
The set of exclusion criteria continued on.
Without a public debate having ensured, CHE doctors were required to administer the changes and CHEs were required to report back to the RHAs with details on how the exclusion criteria was being applied.
Up until then, doctors and clinicians had decided on whether a patient would get dialysis treatment – the assessment was based on what health benefits a patient could expect, and were not required to consider exclusion criteria that were determined by the State.
The doctors silently rebelled and, as a journalist, as I mentioned above, I was leaked the CHSC protocols and exclusion criteria documents.
I sought a legal view from the Human Rights Commission, whose legal team suggested the criteria would be illegal under the act should it be brought into force by any other body excluding a government entity.
At that time, the Government had passed a human rights act but had excluded government entities (at that time) from having to act within that law.
The day the investigation was published, a political furore ensued. The article was tabled in Parliament (in those days a news article could be tabled before The House) and Labour’s then health spokesperson, Lianne Dalziel, raised it during Parliament’s question time (Question number 7 if I remember right). And, once question time concluded, the issue was the focus of an urgent debate.
During the debate, former prime minister David Lange delivered a stinging and passionate attack on the National Government’s ethics and morals. Lange said (ref. http://www.vdig.net/hansard/archive.jsp?y=1994&m=09&d=01&o=44&p=56):
“Look at this thing in south Auckland. There was an extraordinary defence by the Minister—the determining factor is one’s condition. I have to tell members that those key ethical principles are not determined by one’s condition, and they are not determined by one’s state; they are determined by one’s status.”
David Lange continued: insisting that the criterial that the Minister of Health had approved and defended was akin to the State standing on the dialysis pipe to prevent the flow of this life-saving treatment from reaching the patient.
He continued: “If one is intellectually handicapped, the drip goes off. If one is intellectually handicapped, one does not get what is called end-stage renal treatment, and that means one dies. They (the Government) are very good at euphemisms—“modernisation”. The word “euthanasia” does not come into it; it is “determination of end-stage renal treatment”.”
And Lange summarised: “Let us come back to the crude reality of it. Value judgments are being made about people’s lives, and those value judgments will be affected by whether they are people of influence, standing, or status. If they are psychiatrically disturbed or if they are intellectually disabled, the tap is turned off; they stand on the air pipe, and they talk about it in terms of core ethical commitments. I absolutely repudiate that.”
The Minister Jenny Shipley replied: “The core health services committee has made some valuable recommendations about the areas on which attention should be focused. The core services committee has actually begun to assist this country to grapple with some of the most difficult ethical issues that are before us.”
She continued: “I am fascinated that some members of the Opposition are dismissive of our actually having the courage to address ethical questions in the field of medicine. It is true that every country in the world is in a similar position to us. There are issues that we know have to be spoken about, and what happens?
“In Parliament today Opposition members could not resist the temptation of picking up a piece of information, which they know is a gerrymandered interpretation of the core services committee discussion document, and politicising it. People in need of renal failure treatment actually do need to be able to be assessed and treated on a clinical basis. The core services committee raises some extremely important questions that allow clinical judgments to be made,” Jenny Shipley said.
Through the next month I followed up with articles revealing how the Core Health Services Committee and the Minister had agreed upon exclusion criteria for other life-saving treatments including coronary care and oncology care health services. The impact, should it have been fully rolled out, would have been considerable.
Within a month or two, the Core Health Services Committee criteria had been withdrawn from use, and the CHSC itself was later disestablished – doctors were again able to decide who should and should not get treatment based on a patient’s benefit and outcome.
From then on, when I would contact the Minister of Health’s office for comment on issues, I would be referred to as Goebbels (which I ignored apart from noting the irony).
Shortly after around March 1995, the Minister of Health Shipley stood staunch arguing that a south Auckland man who became the human face of her policy called James McKeown ought not receive dialysis treatment.
Shipley went on TVNZ’s Holmes Show arguing why the man ought to be left to die from his condition.
She identified clinical reasons for her argument. South Auckland Health’s then CEO, Dr Lester Levy, returned from holiday to stand between the minister and his hospital’s patient – Levy ordered that James receive dialysis.
In Parliament (ref. http://www.vdig.net/hansard/content.jsp?id=45370) , Lianne Dalziel asked: “Has the Minister received any advice on whether the statements made on television were a breach of patient confidentiality, and does she intend to resign should they be a breach of the Privacy Act?”
The Minister Jenny Shipley replied: “As I have said, this matter is before the Privacy Commissioner now. The issue of whether Mr McKeown, by disclosing a significant amount of his personal circumstance but not the complete story, forwent his right to privilege in the first place is an important matter that the Privacy Commissioner will rule on during the consideration of the three complaints that are before him.”
It was a clear case of the State’s Minister insisting and commanding her view over an ill and humble man from Otara.
The Privacy Commissioner did indeed issue a ruling. Shipley was found to have breached James McKeown’ privacy and was forced to make an apology. She did so.
A year later I revisited James and asked how his extended life had been: “It’s great he said, I enjoy my days, I have a flutter on the races, I’m happy.” A year and a half after Shipley had argued that his treatment ought to stop, James slipped away feeling that his doctors at least valued his life.
Prologue: The whole experience confirmed my resolve that we as a country’s peoples should never allow the State (irrespective of what party is in power) to interfere, nor legislate, against a born human being’s moral right to life and ethical right to access life-saving treatments.
Be Aware and Beware of What You Demand.