Many people think of the hospice as a place where people with cancer go to die. Back in 2014, when I frequently walked past the Otago Community Hospice building in Dunedin’s North East Valley on my way home, that was my impression. What a sad place that must be to work, I thought. Although I practically lived on its doorstep, I had only ventured into this daunting place once. My partner had asked me to drop off a gift to a friend who was a hospice inpatient. I agreed, but only to leave it at reception. I didn’t want to go any further, in case I encountered dying people.
Like most people, despite ‘bearing witness’ to thousands upon thousands of deaths (both real and imagined) through images in the news and in film and television, my exposure to the reality of death and the dying process was minimal. When I went to the funeral home to view my father’s body in 2003, I was so uncomfortable about real death that I could only manage to look at him for a matter of seconds. When my mother had a serious stroke a few years later, I spent time with her as she slowly deteriorated, surrounded by her children, grandchildren and extended family. I was not present when she died, but when asked if I wanted to see her body, I declined, remembering how traumatic I had found trying to view my father’s body years earlier.
Shortly after my fleeting visit to the hospice to drop off the gift, I noticed they were advertising for an Operations Manager. The position appeared to be a perfect match for my skills and experience. Despite my anxieties about death, I successfully applied for the job and joined the organisation in early 2015.
My impression of the hospice as primarily a place where people with terminal cancer were sent to die was quickly dispelled. In fact, hospice provides specialist palliative care for many conditions other than cancer – more than a quarter of people receiving hospice services have a non-cancer diagnosis. Four hundred and sixty people who died in 2019/2020 were provided with care and support by the Otago Community Hospice. Only 20% of those deaths occurred in the hospice’s inpatient unit. Of those who were admitted to the inpatient unit, 43% returned to their own residence after brief stays to manage their symptoms. Most people prefer to end their days surrounded by the people and things they love.
For more than 25 years, hospice staff have born witness to the end-of-life journeys of thousands of people in Otago (43% of patients under the care of the Otago Community Hospice live outside of Dunedin). On a daily basis, the clinical team of Doctors, Nurses, Community Care Coordinators, Counsellors, Social Workers, Spiritual Coordinators and a Kaitakawaenga provide amazing support to patients and their whānau. That support is available 24/7 every day of the year, as dying and death have no regard for the clock or the calendar. Upon referral to the hospice service, patients and families – many of whom are unfamiliar with the reality of the process of dying – can benefit from the team’s knowledge and expertise about this normal stage of life. Hospice looks after the whole person: physically, emotionally, socially, culturally and spiritually. It is not affiliated with, or restricted to, any particular religious (or non-religious) group. The organisation is a registered charity and although it receives a little over half of its budget from the DHB, it relies heavily on the Otago community to provide an additional $2.5M each year so that it can continue to provide its services at no cost to patients.
Most of the organisation’s support for patients and whānau is undertaken in the community. In 2019/2020, despite the restrictions of Covid-19, hospice staff made around 2,500 home visits to the 469 people referred to the service that year. This was supplemented by around 10,000 phone calls, and nearly 2,000 instances of support for family members (before and after the death of the patient). The organisation also invests heavily in the education of other health providers (particularly in aged residential care), and of family members providing day to day care for the terminally ill patient.
Let’s talk about death and dying
Death is not easy for most people to talk about. It can be hard to even say the ‘d word’, with many of us more comfortable with a euphemism like ‘passed away’. Yet if there is one certainty that unites every person on this planet, it is that we will all die.
Most of us have very limited knowledge about what the range of ‘normal’ dying looks like. I believe that uncertainty, fear and anxiety about death and the dying process is the core problem that many who support this legislation want to see addressed. No one wants to suffer, or see their loved ones suffer, while dying. This leads many to the conclusion that putting people ‘out of their misery’ is the humane and compassionate thing to do. You wouldn’t let an animal suffer like that! They shoot horses don’t they? I was once very sympathetic to this point of view. However, people are not animals. For people, suffering is a complex notion, involving body, mind and spirit, and including memories, feelings and relationships. Hospice care attends to all these aspects of pain and suffering. I find it difficult to reconcile an argument that says we should put people with a terminal illness out of their suffering by killing them, while simultaneously being aghast that too many of our young people choose suicide to end their very real pain and suffering.
The overseas experience, in places where systems of euthanasia have been available for some years, is that many people opt for euthanasia not because of physical pain but because of concerns about loss of dignity and lack of control. The thought of having others tend to our bodily needs is extremely challenging. Yet people with severe disabilities whose intimate bodily needs are attended to by carers still lead dignified lives. As a compassionate society we care for our fellow human beings, and this is a dignified response. We also care for our babies and children until they are able to care for themselves. We care for our elderly as they become less able to care for themselves. Similarly, through the provision of specialist palliative care, we can ease the journey of people facing death as a result of a terminal illness. It is often not an easy journey and can be filled with pain and anguish and deep sadness for the patient and their whānau. But it is also frequently accompanied by joy, celebration, greater appreciation of life and reconciliation.
‘Compassion’ is a main slogan for some supporters of the legislation. But those opposing it are also motivated by compassion. Religious, cultural and/or personal values underpin compassion-centred arguments for both sides of the debate. But for the doctors and nurse practitioners who would be tasked with proactively ending the life of their patients, the proposed End of Life Choice Act presents a fundamental ethical problem. It is important to remember that the End of Life Choice Act is not about the general concept of euthanasia; it is specifically about legalising physician-assisted suicide.
The principle of patient autonomy is critical and must be respected, but it is not absolute and must be balanced with other ethical duties and principles. Physician-assisted suicide asks physicians to breach both the general duties of ‘first, do no harm’ (non-maleficence) and to act in the patient’s best interests (beneficence), and also the specific prohibition on physician-assisted suicide that has been a tenet of medical ethics since Hippocrates.”
Jack Ende, MD, President of the American College of Physicians
If this legislation comes into effect, doctors and nurse practitioners may be asked to administer lethal medications to end the life of patients whose care they have been entrusted with. A significant number of these doctors and nurse practitioners, however, will exercise their own choice to conscientiously object to performing this task. To my mind, this situation (which will be common), and the lack of detail about how this will be managed in practice, exposes one of the significant deficiencies with the legislation.
Those strongly advocating for this new law say it has very tight boundaries and protections. They argue that in any subsequent revisions Parliament would maintain or even strengthen these current protections. Even if one accepts that the Act does have tight protections (a claim that I think is highly debatable), the overseas experience, in places where various models of euthanasia have been introduced, is that subsequent amendments to the legislation have always loosened – not tightened – whatever boundaries and protections were originally enshrined in law. In New Zealand, we only need to look at the current High Court case where arguments are being run about lowering the voting age. A similar case could be launched about the End of Life Choice Act, based on an argument that the new law is discriminatory against young cancer sufferers and that those under 18 should have access to euthanasia. In 2002 Belgium legalised euthanasia for those 18 and over. In 2014 their law was amended to permit minors, regardless of age, to pursue euthanasia and children as young as 9 and 11 have since been euthanised.
While it is good that New Zealand is having this discussion, in my opinion this Act is ill-thought-out.
Nevertheless, I think it is more than likely that a majority of people will support the referendum, many ticking ‘yes’ more from a position of anxiety about losing control over how they die than from a deeply considered response on the details of this particular Act.
So where will this leave organisations such as the hospice?
Hospice will not add euthanasia to its services
In the lead-up to the October referendum, the Otago Community Hospice decided it was important to let its community know that if the legislation comes into effect, the hospice will continue to fully support its patients, but will not add euthanasia to its range of services.
Following the release of this position last month, there was a lot of feedback in the press and social media. Much of it was very supportive of the hospice for clearly stating its position. Some of the feedback, however, was concerning. Some thought that the organisation lacked compassion in not being willing to extend its services to include euthanasia.
Even if the organisation did decide to add euthanasia to its services, it could not guarantee its delivery. This is because euthanasia under this particular NZ model would have to be administered by an individual doctor or nurse practitioner. The hospice employs a small team of these professionals, and each of them has the right to conscientiously object to performing this task. As an employer, the hospice could neither include nor enforce such a task in the duties of its staff.
Already, patient consent and choice is central to patient care within the hospice service. As a person’s journey progresses, the patient’s ongoing choices (which may include making a do-not resuscitate request, or declining further treatment) are closely monitored and recorded. Should the End of Life Choice Act come into effect in November 2021, patients who meet certain criteria would be able to request that their life be ended at a time of their choosing. Should any hospice patient make that choice, the hospice will of course respect the patient’s decision.
A fundamental principle of hospice and palliative care though is to neither hasten nor postpone the natural progression of death. Consistent with this principle, the hospice believes that euthanasia or assisted dying has no place in hospice or palliative care.
Hospice will continue to support all its patients and families using the principles of excellent palliative care. However, its staff will not assess eligibility for assisted dying, nor deliver or be present during the administration of lethal doses of medication. These medications won’t be administered by anyone on any hospice premises.
To date the Government have not provided much detail on how physician-assisted suicide would be delivered in practice.
However the Otago Community Hospice has made it clear that they will not participate in the delivery of such a service.
Doug Lilly has been the Operations Manager (a non-clinical position) at the Otago Community Hospice for the past 6 years.
They Shoot Horses, Don’t They? is a novel written by Horace McCoy and first published in 1935. The story mainly concerns a dance marathon during the Great Depression. It was adapted into Sydney Pollack’s 1969 film of the same name.