Death is inevitable. But for many it remains the last taboo. Modern medicine means we can prolong life like never before. Assisted dying legislation currently before Parliament may mean – in special circumstances – we can control death like never before.
Health Central’s Death series will explore the health aspects of death & dying in New Zealand. This is the seventh of eight in-depth feature and opinion articles.
“Passed away suddenly but peacefully at hospital surrounded by her family.” “At hospital after a lengthy illness…” “Passed away suddenly at home with his dog beside him…” “Unexpectedly but peacefully…” “Suddenly at hospital…” “Passed away peacefully with family by his side…” “Died peacefully in her sleep…”
Scan the death notices in your local newspaper any Saturday and you will probably find ‘peacefully’ mentioned many times. Followed by “surrounded by family”.
There is a clear cultural convention that a good death is one where a person ‘slips away’ gently with family at their bedside.
Not all of us will have that – we may die suddenly in a car accident or suddenly of a heart attack or stroke at home or a hospital ward. We may die noisily as people try to resuscitate us or with terminal ‘restlessness’ or in pain. We may die quietly, but alone.
New Zealanders’ ideas of a ‘good’ or ‘bad’ death have been voiced more frequently in recent years as discussions of medically assisted dying step up. Now for the first time, a bill allowing the terminally ill – or those suffering a ‘grievous and irremediable medical condition’ – to legally request medically assisted dying has passed its first reading in parliament.
In this article in Health Central’s Death Series we look at the views of some Kiwi doctors and nurses on what is ‘good’ or ‘bad’ death, including – with New Zealand being closer than it has ever been before to the possibility of legalising euthanasia – some who have taken a public position for or against medically assisted dying.
If international experience is anything to go by, very few of us would actually seek, or follow through with assisted dying. Many want to know the option is there though, with recent surveys indicating that about 75 per cent of Kiwis now support legalising assisted dying.
But it is a more polarising ethical issue for the health professionals who would be expected to deliver it. Several surveys have consistently found only 37 per cent of New Zealand doctors in favour and one survey finding 67 per cent of New Zealand nurses in favour. (See more on David Seymour’s End of Life Choice bill, and trends in surveys on legalising assisted dying in a special section at the end of this article).
‘Surrounded by family’
Not dying alone is high on the list for many Kiwi families of what makes a good death.
That puts a lot of pressure on already stretched health workers in the most common place for New Zealanders to die – residential aged care, says Dr Michal Boyd, an aged care nurse practitioner (NP) and researcher. (See also: Are rest homes becoming de facto hospices)
“Believe me, older people can just die in their sleep. And you call the family the next day. And you say ‘I’m sorry, your mum passed away last night’. And then they say ‘Was she alone?’ and you think ‘…it was in the middle of the night, there was a 1:60 staff ratio’…”
Boyd says her recent research found that the widely held social construct or belief that “people don’t die alone” is a cause of moral distress or tension for nurses working in residential aged care. She says it raises issues for nurses doing their best to provide compassionate end-of-life care as, firstly, with 1:30 nurse ratios during the day – and much lower at night – it is hard to always be there when a resident dies. And secondly, the resident may die just after their visiting family arrives back home or when their spouse pops out for a cup of tea.
“On a metaphysical, not scientific, level, people can choose to die at very strange times, and I would say ‘choose’ to die myself.”
As someone whose everyday work is with elderly people who are frail and often with dementia, Boyd worries about the vulnerable and the tricky moral dilemmas health professionals can face over perceptions of quality of life.
“I often have family members say to me, ‘Can you just increase that morphine a little bit and move her on…’ It happens all the time for us who are doing end-of-life care,” says Boyd. “They are distressed about their loved one dying, but they are also distressed about their loved one living.
“They are not trying to be bad… they are just saying that she hasn’t smiled for five years as she has end-stage dementia. And if it looks like she is dying, please don’t extend it…”
Boyd, a former longstanding chair of Nurse Practitioners New Zealand, says like other health professional organisations NPNZ members has a range of diverse opinions on medically assisted dying and, like herself, has decided not to take a public position for or against the current bill. But personally, she does believe that if assisted dying is to become legal then it is appropriate that, as in Canada, nurse practitioners as well as medical practitioners have the legal option of being involved.
“We’re becoming more and more the primary care providers in residential aged care, so it wouldn’t make sense not to have that ability.”
An anaethetised or sedated death
How people perceive a good death is a long and complicated discussion, says palliative care specialist Dr Brian Ensor, who comes from the place that palliative care cannot relieve all suffering or meet everybody’s expectations.
Ensor, a clinical advisor to Hospice New Zealand, which, along with the Australian & New Zealand Society of Palliative Medicine and Palliative Care Nurses New Zealand, has come out strongly against the bill, says much of the euthanasia debate is about “autonomy, control and existential stuff that we cannot fix”.
“There’s not a medical answer for all forms of suffering, I think would be fair comment. Dying can be hard work and it can be too long for some people.”
For some families an anaethetised or sedated death – where the person may die unconscious and sedated with pain relief and sedatives – is what they see as a good death. “Which is no movement, no response, no noise. And so anything different from that is perceived as possible pain or distress,” says Ensor.
But some families feel that while the person is responding in any way, that is good, says Ensor. “They are still alive and they are still with them.”
Palliative sedation is not uncommon in New Zealand in the last days of life to alleviate or control the symptoms of dying.
For many who support medically assisted dying, the line between palliative sedation and euthanasia is a fuzzy one. One of those supporters is Dr Jack Havill, who retired about eight years ago after being head of Waikato Hospital’s Intensive Care department for 27 years.
“We used to, of course, withdraw life support from patients [in ICU] on a regular basis when treatment became futile and when we knew were doing harm,” said Havill. The practice has been called ‘passive euthanasia’ and Havill agrees when you look at withdrawing life support “coldly and ethically” it is no different.
Some have also described palliative sedation as ‘slow euthanasia’ and for Havill a good death does not include being “sedated to the hilt” for your last days or weeks of life.
“What is a good death? Most people will have some suffering – don’t get me wrong,” says Havill. “But you die with controllable suffering. And you can choose your time.” And, he adds, a person with a terminal illness with just weeks to live may choose to have just one life-ending drug rather than an escalating cocktail of drugs.
Jack Kueppers, a urologist who specialises in treating prostate and bladder cancers and has seen some patients die ‘quite miserably’, is another doctor who supports assisted dying. He respects the ‘fantastic work’ of palliative care team he works with, but believes an option other than painkillers and sedation should be available when the suffering in a terminal illness steps up.
“If you are on very strong painkillers, you are pretty much like a zombie and you get side effects.”
To him, autonomy is an important component of a good death. “If I’m facing a disease that will kill me, then I want to be able to say goodbye to my loved ones and then I will determine myself when it is time for me to go.”
Thick or thin, it is a clear line
Dr Sinéad Donnelly is an internal medicine consultant and palliative care specialist in Wellington Hospital who trained in palliative care in Ireland, the United States and Scotland. She is a member of the New Zealand Health Professionals Alliance that advocates for freedom of conscience in health care.
Donnelly is a passionate believer that people can die well or die at peace with the support of good palliative care. She also sees a clear line between using her palliative expertise and medication to provide pain relief and intentionally giving medication to end a person’s life.
“To me there is a very clear line – whether it is fine or thick doesn’t matter in my view as long as it’s clear,” she says.
“The idea of a doctor killing another person is an anathema to every part of me. Also, having worked in palliative care for so many years with such good multidisciplinary teams, I can’t see in any way that it would add to the quality of the care that we provide.”
Donnelly also initiated an open letter on the Doctorssayno.nz website – with 650-plus doctor signatories – that endorses the New Zealand Medical Association view that even if euthanasia is made legal it would still be unethical, and in addition argues that doctors are only included in assisted dying legislation to provide an unnecessary ‘cloak of medical legitimacy’.
“Leave doctors to focus on saving lives and providing real care to the dying,” concludes the open letter.
Donnelly says palliative care has made “great strides” in the past 30 years in not only its expertise in subtly using medication and interventions to relieve pain and other symptoms, but also expertise in supporting people with emotional, psychological and existential distress.
“It is said that people kind of die as they live, which is a challenge to us all if we think about it. Because all the stuff we deal with in our life – or haven’t dealt with – we bring into our dying.
“People who are anguished or appear to be very stressed… frequently it is not physical pain, it is the emotional, existential, social issues that are causing them anguish.”
She says everybody’s experience of dying is unique and as carers the palliative care team’s main duty is to listen and use their expertise to respond to the person’s needs.
“I have seen so many people – when they are wrapped around in care in a very holistic and an intensive way – then their anguish and their suffering can be relieved. And that’s where we should be working harder, on our ability to provide that.”
Wayne Naylor, director of nursing at Hospice Waikato and another clinical advisor for Hospice New Zealand, is also against assisted dying and believes that palliative care can, in most cases, help people have a good death – though what a good death is, is a very individual thing.
“I think from my experience a good death would be when somebody is comfortable, not distressed by uncontrolled symptoms, in a place where they feel safe (ideally a place of their choosing, but that’s not always possible), when they have people around them who are important to them and when they are at peace with their life and don’t have unfinished business,” he says.
But death can be unpredictable, and coming sooner or later than expected can cause distress.
“The deaths I experienced in general surgery as a nurse were not nice deaths as we were trying to resuscitate people that we shouldn’t have been. Trying to do chest compressions on someone who had just died of natural causes because there was no ‘do not resuscitate’ order – they were traumatic.”
Nurses are most often the health professionals that dying people and their families have most contact with. Unlike the New Zealand Medical Association, the two main nursing professional organisations – the New Zealand Nurses Organisation (NZNO) and the College of Nurses Aotearoa – do not take a position on the End of Life Choice bill in their submissions because of the polarised views both for and against assisted dying across the profession.
Both submissions do call for recognition of nurses’ role in end-of-life care and for nursing to be significantly involved in developing any regulations, safeguards and guidelines; and for the Government to be committed to ensuring that better resourcing and equitable support is available to care for people who are dying. NZNO also believes the bill should talk about health practitioners, not medical practitioners, so as not to exclude nurse practitioners if assisted dying becomes legal.
Nurses views shared in the NZNO submission include reflections on a good or bad death with a number of nurses endorsing their patients’ right to choice:
“All people should have the ‘right’ to be allowed to die and should never have their life prolonged by medical intervention or procedure against their wish.”
And their patients’ right to be protected:
“A change to the law to allow legally assisted suicide impacts on some of the most vulnerable in our society and their human ‘right to life’.”
One nurse also comments, “Patients enduring physical and emotional pain is the hardest part of my work.”
No health professional wants their patient to die suffering through the lack of good physical and emotional end-of-life care.
Some would agree or disagree with one NZNO member’s view that “euthanasia comes at a disproportionately high cost, compared to the few it will truly benefit” but all would agree that whatever happens with the bill, the Government needs to improve and strengthen palliative care and end-of-life care services for all New Zealanders.
In Jack Havill’s experience, even with the best of intentions the lack of well-resourced end-of-life care options can lead to people having bad deaths. He shares the story of a friend of his – also into end-of-life choice – who had good oncology care for her terminal blood disease and when her pain increased had good hospice palliative care to stabilise her pain before returning home.
“Then the pain got so bad she had to go to back. The hospice settled her again but couldn’t keep her any longer so she was sent to a new rest home with newly arrived, inexperienced staff – and not enough of them. She fell out of bed three times over two weeks, got fractures in her limbs and was eventually admitted to hospital and she died there. That’s a bad death. During that time she was half-zonked out of her brain with a tormented look in her eye.”
Cardiologist and general physician Dr Miles Williams is another doctor who supports assisted dying as part of an inevitable evolution in human rights. He believes that not giving a dying patient the chance to consider all options would in any other area of medicine be considered unacceptable or unethical.
For him, a bad death includes deaths when a person’s illness is known to be fatal but health services and specialists continue to offer the patient interventions that may leave patients’ quality of life worse than if they had never embarked on therapy.
He believes plenty of people would make a different choice about the level of chemotherapy or the need for major surgery if they could have end-of-life conversations that many carers and medical advisors back away from as they feel hampered by taboos.
For him, legalising euthanasia would open up those conversations. For others, it opens up major ethical concerns about the role of health professionals and the protection of the vulnerable.
Whatever their professional, ethical or personal feelings may be over assisted dying, we can be assured that our health professionals are united in caring deeply that as many of us as possible can have a ‘good death’.
End of Life Choice Bill: a brief background
International experience is that, in countries with similar laws, few people actually seek, or follow through with assisted dying: a year after assisted dying was legalised in Canada, medically assisted dying made up only 0.9 per cent of all deaths.
But many people want the option and this is being increasingly reflected in New Zealand public opinion polls and how our politicians vote.
Public discussion of medically assisted dying stepped up with the 2015-17 Health Select Committee investigation in response to Maryan Street’s petition and the 2015 Bill of Rights legal test by terminally ill lawyer Lucretia Seales.
Then late last year for the first time – after unsuccessful attempts in 1995 and 2003 – Parliament passed the first reading of an assisted dying bill and the Justice Select Committee is now hearing some of the 35,000 submissions into David Seymour’s End of Life Choice Bill.
That bill – if passed in its current form – would give competent adults “with a terminal illness or a grievous and irremediable medical condition” the option of requesting assisted dying.
A 2012 Horizon Research survey of nearly 3000 people found that 63 per cent of people supported medically assisted dying in specific circumstances, about 25 per cent were neutral or unsure and 12 per cent were opposed or strongly opposed.
A follow-up Horizon survey in May 2017 of 1300 people found that 75 per cent supported legalising assisted dying as an option for people with a terminal illness or ‘irreversible unbearable suffering’ and 11 per cent were opposed.
But the issue is more polarising for New Zealand doctors.
The proposed bill, which gives health practitioners a right to object to being involved in any aspect of assisted dying (AD) on the grounds of conscience, requires two medical practitioners to assess a person’s request and eligibility for AD and for a medical practitioner to administer the AD medication.
Recent surveys of New Zealand doctors – a University of Auckland survey in late 2015 with nearly 300 doctor respondents and a survey this year of New Zealand Doctor subscribers with 545 respondents –found 37 per cent of doctors were ready to support legalising medically assisted dying in certain circumstances. But both surveys also found the majority of respondents were against a law change – 58 per cent in the 2015 survey and 52 per cent in this year’s survey.
The New Zealand Medical Association has come out against the bill, saying that, even if legalised, medical assisted dying or suicide would be unethical, but the Royal College of General Practitioners submission stepped short of commenting whether or not assisted dying was ethically or morally right, leaving it to members’ own consciences.
On the other hand, the nearly 500 nurses who responded to the University of Auckland survey had almost an opposite response, with more than two-thirds (67 per cent) coming out in favour of legalising assisted dying and 29 per cent against.
The NZNO submission on the bill doesn’t take a position for or against assisted dying, but does say it is extremely disappointed at the bill’s lack of recognition of the roles and responsibilities of nursing in end-of-life care. It also calls for the bill to refer to health practitioners, not medical practitioners, so as not to exclude nurse practitioners from being able to discuss and deliver assisted dying.
The NZNO submission also includes a call from one of its subsidiaries, the Neonatal Nurses College Aotearoa, for the bill’s scope to be widened to include those who have a terminal illness and are under 18 years of age.
The Pharmaceutical Society of New Zealand submission says for most pharmacists the proposed bill is contrary to the practice of keeping patients well and may conflict with the Pharmacy Council Code of Ethics. But it too stops short of stating a position for and against and says if the bill is passed pharmacists must be integral to planning the implementation of any new law and no pharmacist should be compelled to provide the medicine for medically assisted dying.
A common theme across many health professional organisation bill submissions is not only the right to conscientious objection but also the need for greater government investment and support to improve people’s access to good palliative and end-of-life care. Some also note the bill’s lack of recognition of a Māori world view on death and the need for culturally appropriate end of life care.
The End of Life Choice Bill made it through its first reading (76 votes to 44) with the support of a block vote from NZ First after bill sponsor David Seymour agreed to support a binding public referendum on the issue.
Justice Minister Andrew Little has indicated that the Government, which has already agreed to hold a referendum on legalising personal cannabis use at or before the 2020 election, is considering holding a joint public, but not binding, referendum on both issues, possibly as early as next year so as not to coincide with the election campaign.