Allowing hospices to set their own rules on assisted dying is an unfair and messy system that will lead to people dying the harrowing deaths they desperately sought to avoid, argues Frankie Bennett.
Last Monday, a hospice in Timaru announced it would not permit assisted dying on their premises. They hardly needed to say it. Before the referendum even passed, Hospice NZ went to the High Court to confirm its facilities could remain “euthanasia-free”. Tōtara Hospice in South Auckland is a lone voice in openly allowing and respecting assisted dying. But can a publicly funded hospice justify denying its patients a legal medical treatment that 65% of the public voted for?
At present, hospices, aged care homes and hospitals are free to decide their own rules when it comes to assisted dying. The End of Life Choice Act is silent on the matter. Hospice South Canterbury told the Timaru Herald it will allow a doctor on-site to discuss assisted dying with a patient, after which the person will be, as the article rather clinically put it, “discharged to their place of death”.
So far, so good. But Hospice South Canterbury’s approach assumes a person can be discharged. What if someone can’t be safely moved, or there is nowhere to move them to?
A person in the late stages of terminal illness may be too unwell to travel even a few kilometres down the road. There may be no alternative hospice nearby (pretty likely, given the few participating facilities). They may not want to leave a familiar environment where they have made friends and know the staff. Home may not be an option. What will happen then? Will the hospice really turf them out to seek an assisted death elsewhere?
My work in Australia, where five states have passed assisted dying legislation and two laws are already effective, suggests yes. We have received numerous reports of non-participating facilities blocking a person’s access to assisted dying, with little regard to what happens next.
Take Colin from Victoria, a 79-year-old former champion swimmer and philosophy professor who was dying of metastatic bowel cancer and found eligible for assisted dying in 2020. Colin’s aged care home, after nine days of deliberation, said they could not accommodate his assisted death. He was forced to move to a nearby hospital, where he knew no one, without saying goodbye to any friends or staff. Within two hours of arrival, Colin took the life-ending medication. The hospital doctor described Colin as feeling “abandoned”.
Or Tony from Western Australia, a 75-year-old gardener and opera fanatic dying of brain cancer. The first hospital he approached refused his assisted death. Tony’s daughters found an alternative aged care home that agreed, but at the 11th hour they too changed their mind. Dying at home was not possible for Tony. Instead, his daughters had to frantically search for a safe place for their dad to die during what should have been their final, peaceful days together as a family.
In Tony’s case, the aged care home claimed it needed to prepare its staff for an assisted death. But can that be true? In aged care, death is rarely a shock. Surely, the greater harm would have been staff having to watch Tony suffer, knowing they could not help? In fact, Tony’s daughter said all the staff respected his decision.
So why do most organisations offering end-of-life care really oppose assisted dying, and can their stance be justified?
Palliative care’s philosophy, pioneered in Aotearoa in the 70s, is to neither “hasten nor postpone” death. In other words, see it out to its natural end. But palliative care already makes use of modern medicine to manage symptoms and pain, as well as quietly enabling death with palliative sedation. Medication to end suffering is hardly a great leap – it’s just that now, the person rather than their doctor gets to choose when it happens.
Palliative care also proudly claims a “whole person” approach, placing equal importance on physical, spiritual, cultural, emotional and social needs. This all sounds great, but the hospices’ response to assisted dying is more akin to supporting the “whole person, minus the parts we disagree with”. What about a person’s need to die peacefully? The hypocrisy is deafening.
Less publicly acknowledged, but perhaps the root of opposition to assisted dying, is that much of Aotearoa’s hospice network was established by the Catholic church and retains strong links today. Catholicism’s pro-life beliefs oppose assisted dying on the grounds that life is sacred, to be given and taken by God alone. Although most of us are mightily glad the Catholic church did step in to establish hospice care, a loyalty to the sanctity of life is out of step with what most New Zealanders – and indeed most Catholics – believe today.
Whether the paternalism is coming from God or a doctor, the message from hospice care is clear: we know what’s best for you. No need to trouble yourself with notions of choice, control or bodily autonomy.
Given the hostile policies will be driven by management, I really feel for the staff working in these institutions – many of whom will have voted yes in the referendum and will now be complicit in the farce that the forensically safeguarded assisted dying scheme is somehow a threat.
The End of Life Choice Act already protects the rights of health workers to conscientiously object. Individuals can opt out, no questions asked. Yet to allow entire organisations to do the same disproportionately favours institutions over patients. After all, people suffer in ways that institutions cannot.
Institutions do not have consciences to offend. Institutions do not suffer bodily and emotional harm. And institutions don’t have loved ones left traumatised at bedsides. How about putting people first?
I understand why hospices feel defensive. They perceive assisted dying as a criticism of their care. Unfortunately, no matter how well funded and excellent the care they offer, a small number of people will still suffer terribly as they die. This is not down to hospice or aged care inadequacy, but evidence of how profound the suffering caused by illnesses such as cancer and motor neurone disease can be.
During the referendum campaign, equity in healthcare was a hot topic. Assisted dying, we were warned, should not become a substitute for palliative care. On that we all agree. But those same voices are now building a new inequity into the system: whether or not your aged care home, hospice or hospital decides to block you from accessing assisted dying.
For all the conversations about people being coerced into using the law, should we now be more worried about hospices coercing eligible patients out of it?
Hospices should not be left to make up their own rules. This unfair and messy system lacks clarity and will lead to conflict, not to mention some people dying the harrowing deaths they desperately sought to avoid. We deserve to know hospice, hospital and aged care facilities’ policies on assisted dying in advance. That’s why the Ministry of Health must urgently establish enforceable guidelines to protect terminally ill people and ensure equity of access.
The End of Life Choice Act hands power back to the dying person. The onus is on hospices to show why their needs should be more important than their patients’. Dying people are not the enemy and their choices deserve respect too.