End of Life Choice … facts not FUDS

As published in July/August BayBuzz magazine

Thinking about where and how we might die is important for all of us.

On September 19^th, 2020 we are expecting an election and a very important moment in NZ history, a binding referendum asking all Kiwis to vote on whether MP David Seymour’s End of Life Choice (EOLC) Act, should become law. Something, repeated polls tell us that 70% of us regard as necessary.

“What you see and hear is influenced by where you stand: it also depends on what sort of a person you are” (C.S. Lewis, The Magician’s Nephew)

Our decisions are influenced by our own experiences; the experiences, opinions and decisions of those we respect and trust; by the emotional impact of relevant stories; by relating the issues to our own lives … and by facts and figures.

‘FUD’

A ‘fact’ is a thing certainly known to be true, datum of experience, something whose existence cannot be ignored.

And then there’s a ‘FUD’, a term coined by Andrew Denton in his submission to the Justice Select Committee in  March 2018. Fear, Uncertainty, Doubt, sow a seed of FUD and reap a whole harvest of hesitation. I prefer to spell it FUDD adding Distortion to the list.

In NZ, as in many other countries, these tactics have been used by some of those who oppose law change, particularly the Care Alliance (CA). This umbrella group includes the very well-funded Catholic Church (approximately 10% of Kiwis are registered as Catholic, about ¼ of these go to church) and several other small faith-based organisations.

If your faith precludes you contemplating ending your own suffering by legally ending your life, that is your choice, nothing need change for you when this legislation is passed.

Sadly, for the dying, the CA also includes Hospice New Zealand, who have surprised many of us by aligning themselves in this way. The EOLC bill and hospice/palliative Care (H/PC) share the same aim, to reduce the suffering of the dying and enable us to live until we die.

Data from USA, Canada, Europe tells us that not only have funding and standards of H/PC improved where EOLC is legal, it has been successfully integrated into End of Life Care, working with H/PC services. (Submission Australian Medical Association (WA) to the Ministerial Expert Panel on Voluntary Assisted Dying. Strategy Outline.)

What I want to do is to remind you of the FACTS, which will help dismiss the FUDDS, so that anyone who reads this can make sure they are standing in a well-informed  place to make their best decision.

Our own experience

Between 500,000 and 1,000,000 of us in NZ already know or have known someone who has suffered a truly horrible death (Horizon Polls). Many of us also know someone who ended their life to end their suffering, approximately one Kiwi per week, 50 per year. I know three people, all under the care of H/PC who did so.

Those with that firsthand experience need no convincing that this law is long overdue, our job is to vote YES and to encourage others to study the facts and vote YES too.

Experience of others

In NZ we have access to decades of recorded data from other jurisdictions who have already changed their law. I have spent many hours reading, checking and double checking, looking for failings in the laws and breaches of them. I have found no evidence to support the FUDDS list, below.

What I have found is a very large collection of well referenced, competent, independent  research demonstrating that, as Dr David Leaf has pointed out, ‘Such laws are working well, worldwide … Numerous independent audits of existing laws from several jurisdictions have shown them to be safe.”( Primary Care Lecturer at the University of NSW)

I have listened to and read true stories of terrible deaths and lonely ‘self-euthanasia’, a term introduced by historian John Weaver, to distinguish between this group of dying people ending their lives to end unbearable suffering, and those who suicide for other reasons. John spent a decade researching a century of suicide in NZ. (John Weaver, Sorrows of a Century, Interpreting Suicide in NZ)

Thankfully, I have also heard and read stories of the immense relief of knowing you are able to end unbearable suffering when necessary, freeing up dying patients and their families to make the very best of the time they have left, of deep and precious conversations, of calm, peaceful deaths supported by the people who matter.

The following collections of stories are valuable: Andrew Denton, The Damage Done, published by Go Gentle Australia. Jack Havill and David Barber, Dying Badly.                                                 Rodney Syme, A Good Death published by Melbourne University Press. The Inescapable Truth, published by Dignity in Dying, UK. This collection of stories details the suffering that even excellent hospice/palliative care cannot address.

Warning: these are true, harrowing testimonies from real people about real deaths.

In the meantime, laws are working well ten states in the US, in Switzerland, Belgium, The Netherlands, Luxembourg, Canada, Colombia, and Victoria in Australia. Western Australia has passed a law which will be implemented this year.

NZ’s proposed law is one of the most conservative in the world, with strict criteria and multiple safeguards (see eligibility chart). Similar to the Australian and Canadian laws, it should not be compared with the different, more liberal legislation of the Netherlands.

Figures

The number of deaths, 33,000 annually in NZ, will be unchanged by this law. But for the dying, suffering unbearably, howwe die, can be profoundly changed – no more will die, fewer will suffer.

Approximately one-third of deaths are under hospice/palliative care, though most do not die in hospice. Research tells us 2-5% H/PC patients still suffer unbearably as they die: ‘Pain and other symptoms can be helped, complete relief of suffering is not always possible, even with optimal Palliative Care’ (Palliative Care Australia). And that 20% of us experience moderate to severe pain during our last 24 hours (Wollongong University Health Services Unit, collected data from 160 hospices across Australia).

Where do we die? Most of us would like to die peacefully at home in our own beds. Most of us do not. Some of us die in Acute Hospitals, but already more of us die in Rest Homes than anywhere else.

Rest Home staff do an amazing job; however, they are often poorly trained in H/PC, poorly paid, poorly supported, poorly supervised, and overworked.

The patient:staff ratios:

Hospice:          3:1
Hospital:         6:1
Rest Home:     10-20

How many of us in NZ need this law each year? We do not have direct figures; we have to work them out. Overseas, the numbers who access the legislation are small: 0.4% of deaths in Oregon, 2% in Belgium. Somewhere between 30-40% of patients who access the legislation/medication do not actually use it.

So, in NZ with 33,000 deaths/year and 11,000 of those under H/PC, approximately 2-5% of these suffering unbearably – 200-550 suffer unbearably as they die.

(We do not have figures for suffering in other circumstances.)

Between 0.4% of deaths in Oregon, 2% in Belgium, are EOLC. Using 1%, approximately 330 Kiwis would access this law.

I do not view these numbers as small.

They demonstrate that things are not fine as they are.

And the clinical reality is that better funding for H/PC cannot remove the suffering that is inevitable in too many cases.

At the same time, the overseas experience cited above establishes that access to choice has not been abused.

“In the end, I was left to reflect on what I would want in the face of my own death. I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain however, that it would be a comfort to be able to consider the options afforded by this Bill, and I wouldn’t deny that right to others.”
Governor Gerry Brown, in supporting California’s End of Life law enactment.

I too wonder what I would do then.

What I do know now, is I choose Choice.

Dr Libby Smales

END OF LIFE CHOICE ACT

Who is eligible for assisted dying?

1. Is the person 18 years of age or over?
   YES    NO  Not Eligible
2. Is the person a NZ citizen or permanent resident?
   YES    NO  Not Eligible
3. Does the person suffer from a terminal illness likely to end their life within 6 months?
   YES    NO  Not Eligible
4. Is the person in an advanced state of irreversible decline in physical capability?
   YES   NO  Not Eligible
5. Does the person experience unbearable suffering that cannot be relieved in a manner considered tolerable to them? This means that the person’s pain or suffering cannot be adequately alleviated through treatment that is available.
   YES NO  Not Eligible
6. Is the person competent to make an informed decision about assisted dying?
   YES    NO  Not Eligible

If YES at every step – this person would be eligible to make a request.

What are the safeguards under the End of Life Choice Act?

Patient-initiated discussion

Doctors and other health professionals are not permitted to raise the issue of Assisted Dying with their terminally ill patients.

Fully Informed Consent

The End of Life Choice Act requires that the person’s doctor fully informs the person requesting an assisted death of the details of their condition, their prognosis, and their other options for care at the end of their life. The doctor must ensure that the person has had the chance to speak to family, friends and counsellors about their decision. The doctor must also check, to the best of their ability, that the person is making their decision to request an assisted death freely, without any pressure from any other person. If at any time the attending medical practitioner suspects pressure, they must take no further action.

Assessment by Two Doctors

The End of Life Choice Act requires that a person’s eligibility (meeting every criterion outlined overleaf) is assessed by two doctors. The first doctor must be the person’s attending medical practitioner. The second must be an independent doctor appointed by the SCENZ Group (a public body that will be created to oversee assisted dying). Both doctors must agree that the person meets all of the eligibility requirements.

Assessment by a Psychiatrist

If either one of the doctors is unsure that the person is competent (able to understand the nature and consequences of assisted dying), then a psychiatrist must assess the person’s competence. This psychiatrist will also be appointed by the SCENZ Group to conduct this assessment.

Change of Mind

The End of Life Choice Act requires that the person is able to change their mind at any time from the time of the first request for assisted dying. This is up to and including the time that the medication is provided to the person.

Accountability & Reporting

The End of Life Choice Act requires the Director-General of Health to create a body called the SCENZ Group (Support and Consultation for End-of-life in New Zealand). The group’s functions are: to make and maintain lists of medical practitioners, specialists, and pharmacists who are willing to act in relation to assisted dying (and provide these where necessary); to prepare standards of care; to advise on medical and legal procedures; to provide practical assistance if it is requested.

The SCENZ Group will appoint a Review Committee consisting a medical ethicist, and two medical practitioners, one of whom practises in the area of end of life care. The Review Committee must consider reports of every procedure carried out. The Review Committee will report its satisfaction or otherwise to the Registrar.

A registrar will be appointed to make and maintain a register of all prescribed forms held, all reports, and all recommendations made by the Review Committee. The Registrar must make annual reports to the Minister of Health. They must also establish a procedure to deal with any complaints about breaches of assisted dying law.

The Prescribed Forms

The End of Life Choice Act requires forms to be completed at every step of the process. These will be in standard form and require comprehensive information on actions taken. They will be kept on record by the Registrar so that accurate reports can be made on requests for assisted dying, and assisted deaths carried out.