By Guest Contributor, Alex Penk.
I interviewed an expert, Professor Rod MacLeod, to make sense of the stats and untangle the advocates' claims.
The first official report from the Assisted Dying Service came out last week and advocates are already pushing to expand the law. To help make sense of the numbers and the activism, I interviewed Professor Rod MacLeod, one of New Zealand’s leading experts on end-of-life care and palliative medicine.
Professor MacLeod pointed out gaps in the data which mean we don’t have all the information we need to assess and regulate assisted death. He’s also alarmed at the promotion of telehealth in this field, and by the calls for expansion which overseas experience shows would create risks for vulnerable people, especially those with dementia and mental illness. He points out that the Ministry of Health has zero FTEs dedicated to palliative care but 6 FTEs dedicated to assisted dying, and finishes by urging proper funding and training for palliative care if we’re to truly say that people have choice in how their lives end.
Here are my questions and Professor MacLeod’s answers.
Q. How many New Zealanders have died by euthanasia or assisted suicide since those practices became legal in November last year?
Latest statistics from the Ministry of Health tell us that 143 people have had an assisted death in New Zealand between 7 November 2021 – 30 June 2022.
There are two forms of assisted death available. First, euthanasia, which is killing on request and is defined as a doctor intentionally killing a person by the administration of drugs at that person’s voluntary and competent request, usually by lethal injection. So, for euthanasia, the doctor ends the patient’s life.
Second, physician-assisted suicide, where a doctor intentionally helps a person to commit suicide by providing drugs for the patient to self-administer at that person’s voluntary and competent request. The patient takes the medication themselves to end their life rather than getting the doctor to deliver it for them.
We don’t yet have a breakdown for the latest figures, but we know that for the first 66 assisted deaths, 56 of those people chose to die by an injection administered by a doctor or nursing practitioner and just 10 chose assisted suicide (by ingestion or injection). So the vast majority seem to want a health professional to end their life for them.
Of note though is that 153 applications were ended in that period (68 assessed as not eligible, 23 withdrew and 62 died in the process). This suggests that many people may not understand the eligibility criteria and that some apply too late, which also suggests that prognosis is not the exact science many would have us believe.
Q. What stands out to you from the stats and the commentary in the report?
One of the most striking things is that of all those who asked for assisted dying services only three were referred to a psychiatrist. It is well recognised that patients with, for example, cancer and depression experience more physical symptoms, have poorer quality of life, and are more likely to have suicidal thoughts or a desire for hastened death than cancer patients who are not depressed.
Surely this would indicate that a much greater proportion of people asking for their lives to be ended prematurely would need at least a psychiatric opinion to check for conditions like depression.
I find it alarming that the Registrar of Assisted Dying suggests “supporting the use of telehealth”. How on earth can such a life-altering decision be made on the basis of a telehealth consultation?
The Registrar also says assisted dying should be “person-centred,” but I would have thought the practitioner would need to know the person over a period of time for a truly person-centred approach. We are not given any indication if this is, in fact, the case. We also know that there is no obligation to involve loved ones unless the patient specifically gives permission to do so.
Another striking thing is that a number of people requesting this service do not seem to fully understand what is required to access it. Of those who were declined, 40% were not experiencing unbearable suffering unable to be relieved in a tolerable manner; 42.5% were not in an advanced state of irreversible decline in physical capability; and 65% did not suffer from a terminal illness that is likely to end their life within six months. [1]
Q. What is missing from the report and the statistics?
What we don’t know from any data released is why people are choosing assisted dying in New Zealand. In Oregon for example we know that the top five reasons given last year were:
Losing autonomy (93.3%);
Less able to engage activities making life enjoyable (92%);
Loss of dignity (68.1%);
Burden on family, friends/caregivers (54.2%); and
Losing control of bodily functions (47.1%).
These have consistently been the top reasons that people ask for death. Notably, pain – or even fear of it – does not make the top five.
We also don’t know how long an attending practitioner has had a relationship with the person requesting the service. If, as we would hope, the attending practitioner is a general practitioner with intimate knowledge of the person requesting the service then we might imagine that they would know how that person deals with ill health, how their family might respond and what their social supports might be, but we aren’t given any of that information.
We need to know who was present for the death. The law says that practitioners must be available to the patient (meaning at least in “close proximity”) until they die. But there is no evidence on whether this happens. We know that doctors aren’t always present in other jurisdictions. In Oregon, for example, doctors were only present at time of death for 36 (15%) of the patients who ingested medications (and 41 patients (17%) had other health care providers present, and volunteers were present for 43 deaths (18%)). There’s also no guidance on how bereavement support should be provided to the families and who should do this.
We also need performance information on the medical practitioners involved. Many of these will be largely operating independently, a risk in situations when critical life decisions are made. Of the practitioners willing to undertake this role, how many deaths do each oversee? All we know is the number of opinions about patient eligibility given under the law (363 attending medical practitioner opinions and 270 independent medical practitioner opinions, compared to a possible 29,910 active medical practitioners in New Zealand). We don’t know how many doctors are giving these opinions or, for example, if a small number of doctors are each making a large number of judgments about whether a patient is eligible for euthanasia or assisted suicide. As is the case with so many other high-stakes medical and legal situations, layers of accountability and transparency are necessary to promote practice in accordance with the law. Again, this highlights that if assisted dying is to be facilitated according to the safeguards, information needs to be collected on the contexts in which people are requesting assisted dying and in which attending medical and nursing practitioners are providing this service.
Finally, we need to know the details about the process of dying, including how long it takes from the ingestion of medication to death as well as information about any observed side effects such as vomiting and convulsions. One can only imagine how crucial it will be to identify and eliminate any such experiences, which we know happen in other countries. There is no current indication that any such details will be recorded, which is, oddly, in direct contrast to the approach taken with many other significant medical procedures.
Aside from all the usual personal indicators of age, gender, ethnicity, etc, we want to see the following anonymised patient details included: education; diagnosis; length of relationship to medical practitioner; reasons for request; availability of palliative care; means by which prognosis was determined; nature of intolerable suffering; and the existence of mental health issues, disability, recent bereavement, loneliness, or financial concerns.
The fact that people are terminally ill doesn’t mean they are less deserving of protections around the circumstances of their deaths. If anything, they need more protections given their vulnerability. Anything less is negligence and will only breed a culture of secrecy around an area that needs to be kept fully in the light.
Q. Some of the media coverage implied that the law is “too strict” and that “Doctors seem to be applying the criteria for an assisted death rigorously.” What do you make of that?
Goodness me! I would certainly hope that doctors and nurse practitioners are applying the criteria for an assisted death rigorously. This is a decision that has enormous impact, not just on the person seeking assisted death but also on those who love them. If ever we reach a stage where the criteria are not adhered to strictly then all will be lost and we will be the poorer for it.
Q. Other places that have legalised euthanasia and assisted suicide also seem to start out with low numbers, but then the numbers increase. Could we expect the same thing to happen here?
Sadly, the indicators are that numbers will increase. Assisted death will become more ‘normal’. We have seen this in just about every other jurisdiction in the world where this service is available.
Source: “Oregon Death with Dignity Act 2021 Data Summary”
Source: “Second Annual Report on Medical Assistance in Dying in Canada 2020”
Whether it is assisted suicide or euthanasia, this truly is a slippery slope as the graphs above demonstrate.
Q. Advocates like End of Life Choice Society President Ann David have said there’s “definitely an appetite” for a broader law, and the report itself says “the legislation is not as enabling as some people were hoping for”. Is this what you were expecting?
To be honest, this is exactly what I was expecting and fearing. We know from other jurisdictions that euthanasia and assisted suicide place vulnerable people at greater risk.
Based on the experience in jurisdictions where euthanasia and assisted suicide have been legalised, I believe that these changes place vulnerable people – particularly those with dementia or mental illness – at greater risk of being killed without their consent.
For example, in the Netherlands, euthanasia was legalised in 2002 for adults experiencing “intolerable suffering at the end of life”. In more recent years, the criteria have been expanded to include people with mental illness, dementia and children. In 2019 there were 162 people with dementia who died by euthanasia (up from 42 people in 2012), 68 people died by euthanasia because they had psychiatric disorders (up from 14 people for “mental illness” in 2012) and a further 172 people died by euthanasia because they had “multiple geriatric syndromes”.
Q. Why does this issue matter to you and, given that you’re opposed to euthanasia and assisted suicide, how would you like to see us approach end-of-life treatment?
What we now know (from the US for example) is that:
“legalizing assisted dying has been associated with an increased rate of total suicides relative to other states and no decrease in non-assisted suicides. This suggests either that assisted dying does not inhibit (nor acts as an alternative to) non-assisted suicide, or that it acts in this way in some individuals but is associated with an increased inclination to suicide in other individuals.”
This was brought up repeatedly by me and others in the debates before the referendum that legalised euthanasia but we were rubbished by David Seymour and others for saying so. Given that suicide rates in New Zealand are heartbreakingly high we should be doing everything we can to ensure that nothing will increase this terrible number of unnecessary deaths.
One of the most striking facts about assisted dying in New Zealand is that the Ministry of Health has no specific full-time equivalent staff currently dedicated to palliative care and yet there are six fixed term full-time equivalent staff dedicated to assisted dying. What message does that send to those who have dedicated their careers to helping those most vulnerable New Zealanders at the end of life about how they are regarded by the Ministry? We have tried for years to get successive governments to fund palliative care properly but hospices, in particular, have to rely on charitable donations year after year to keep their services going. This has become increasingly difficult during the Covid pandemic and many hospices are facing a very bleak prospect of inadequate funding for their services. Rather than pouring money and other resources into assisted dying surely what we should be doing is ensuring that all New Zealanders have access to high quality specialist palliative care by funding it properly.
The Medical Council of New Zealand has only 107 doctors registered as practising specialist palliative care (and not all of those are ‘active’ – I am included in that list, and I stopped clinical practice three years ago). Compare that for example to 1,031 psychiatrists, 1,800 in internal medicine and 4,900 general practitioners. What we must do is to ensure that all healthcare students have a good understanding of the principles and practice of end-of-life care. We need to be actively encouraging doctors and nurses to train in specialist palliative care so that all New Zealanders, no matter where they live and no matter what is wrong with them, have access to the highest quality end-of-life and palliative care. Only when this is available can we say that people have a real choice in how their lives will end.
[1] People could be declined for more than one reason, so the percentages do not add to 100.
This interview has been republished with permission from Alex Penk and A Place to Stand.
Professor Roderick MacLeod is an honoured member of the New Zealand Order of Merit for services to hospice and palliative care. He has spent 45 years of his life caring for thousands of dying people, and he says the answer to terminal illness is not found in the End of Life Choice Act. Euthanasia and assisted suicide fail to address the real problem which is not physical pain, but psychosocial suffering. Overseas people are regularly ending their lives because they feel they are a burden, they are scared of losing dignity, or they don’t want to be alone. Roderick’s career is in one of the professions most directly impacted by this legislation and he is standing with us out of great concern for what it will do to end of life carers and the people they care for. Roderick is also a #DefendNZ Ambassador.
Alex Penk is an experienced leader and strategist, skills he honed during his six years as CEO of the independent public policy think tank, Maxim Institute. He led Maxim through a period of significant change to generate real results—new and effective strategy, an increased budget, a cohesive team, and a larger public presence. He’s appeared on radio, TV, and in print, spoken to Parliamentary Select Committees, and briefed Ministers and MPs. He’s been a corporate lawyer, a researcher, a university lecturer, and a Visiting Fellow at the University of Oxford where he studied public leadership. Alex is passionate about the importance of effective strategy, courageous leadership, strong culture, and great communications, because he’s lived out their power to help people thrive and organisations succeed.