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Source: The Spinoff
Since the End of Life Choice Act became law, Dr Kees Lodder has been involved in assisted dying requests. Here, he explains what the process entails, and what he has learned along the way.
All week long The Spinoff is opening up about the end. Click here to read more of our Death Week content.
People always assume it must be depressing to work in death and dying, but I’ve found it to be the most rewarding aspect of medicine to work in. You can alleviate so much suffering for someone, not just physically but also emotionally and spiritually.
I worked for over two decades as a GP before moving into palliative care in both hospitals and hospices. More recently, I’ve been assessing assisted dying requests. I’m very interested in helping people have a good death, and find it fascinating that it remains one of the biggest taboos out there.
When the End of Life Choice Act became law in 2021, I immediately went through the training programme to assess requests. Between 1 April 2022 and 31 March 2023, 328 people completed the process to have an assisted death.
Very few people know what the process actually entails. To begin, any patient can ring the Ministry of Health number (0800 223 852) and speak to one of three excellent and friendly nurses. They will collect all the information, and send it on for a first opinion assessment. The first doctor is called an attending medical practitioner (AMP), who will then contact the patient and write an extensive report on whether they’re eligible or not eligible.
The eligibility criteria is very strict. You need to be 18 or older in New Zealand. You need to be a New Zealand citizen, or a permanent resident. You need to be in an advanced state of irreversible decline in your physical capacity, with less than six months to live. You need to be experiencing unbearable suffering that cannot be released in a tolerable manner, and you need to express your wishes to die free of pressure from anybody else. It’s also crucial that you are able to process all the information and be of sound mind to make the decision.
If the first doctor has decided that you are eligible to continue through the process, you will then see the second doctor. They are referred to as an IMP, or independent medical practitioner, which is what I do. We will talk to your specialists, your GP and hospice staff, and look through all your files to ascertain that you have less than six months to live. It is a very thorough and rigorous process – of those who have applied so far, 16% were deemed ineligible with the first opinion, and a further 3.5% by the second opinion.
I always meet with patients face-to-face, ideally with as much of their whānau present as possible. After I introduce myself and tell them a bit about my background, I always ask them the same, simple, open question: “How are you coping right now?”
From there, it becomes really easy to have an open conversation. I’m always fascinated by what people think will happen when they die. People who say they are not religious at all will come back with the most detailed images of what they think the afterlife looks like. A number of people have told about their vivid and reassuring near-death experiences. We talk about who they want to be there when they die, who they want to remove their body and after how long, and what they want for their funeral. There’s often even room for a few jokes.
After the two assessments are done, your case goes to the registrar to be signed off, at which point you set up an appointment for your assisted death within the next six months. We tell the patients that the whole assessment process could take up to six weeks but it can be done faster depending on the availability of the AMP and IMP. The specific medication can only be dispensed from two pharmacies in the country, and consists of three steps. The first drug is to make you go to sleep, the second is a body relaxant, and then the third stops your heart. I always emphasise that it is a very peaceful process that only takes a few minutes.
What I really find interesting is that those who are seeking out an assisted death often have very little fear of dying. The difference in attitude between people that have come to terms with the fact that they’re dying, compared to people who haven’t ever thought about their own death before, is huge. Research also shows that those who have supported their loved one in the decision to have an assisted death experience a less complex grief process, which makes sense given how much conversation, planning and support there is.
There is definitely a cultural change happening when it comes to death, but there is still a lot more educating to be done. A lot of people don’t know what the process entails, or that they can start it without their GP or specialist. There are still many conscientious objectors in medicine that are opposed to assisted dying, including Hospice New Zealand, certain aged care facilities and individual GPs. My hope is that, one day, all our residential care facilities will accept assisted dying to take place in their premises, since this is the place that so many people call their home.
Even if assisted dying isn’t for you, there is a huge advantage in preparing better for our own deaths and the deaths of our nearest and dearest. We will all lose loved ones, friends and whānau. So by being able to talk about it and having an increased awareness about it, we can be much more accepting of it. I’ve always said that having a plan around your death is the best gift you can give to your family. It’s something we’re all going to face, so why keep your head in the sand until it’s too late?
With thanks to the Auckland Medical Research Foundation for permission to share their newsletter. Cover photo taken by Stuff Limited.
Click here to download the article »
Source: NZ Herald
Doctors say the current wording of the act is leaving many Kiwis out. Photo / 123rf
A group of doctors who perform assisted dying in New Zealand have written an open letter calling on the government to change the current wording of the End of Life Choice Act which, they say, excludes Kiwis due to an arbitrary deadline.
The medical experts say the current law is failing the Kiwis it is meant to be serving and point out inequities in the access to the service.
According to the signatories of the letter, the issues are caused by the wording of the End of the Life Choice Act 2019. “In order to get the legislation through parliament, politicians were allowed to damage and weaken the text, removing the originally proposed “grievous and irremediable medical condition” clause thereby leaving only a ‘terminal illness likely to end the person’s life within six months’,” the letter authors state.
A third of the ineligible patients who were declined assisted dying in the law’s first year were declined because they didn’t meet the criteria of having a terminal illness likely to end their lives within six months.
The doctors who signed and endorsed the letter call on the Government to broaden the law to remove the requirement that a patient has only six months to live in order to qualify for assisted dying.
The same criticism was previously raised by the law’s architect, Act Party leader David Seymour who maintains that the law needs to change.
Seymour, who introduced the law to parliament in 2017, says what the doctors are calling for in the letter is “consistent” with what he originally expected the law to deliver.
Act Party leader David Seymour. Photo / Marty Melville
“The six-month limit was put in place purely as a political compromise because there were some people unwilling to vote for it in the original form,” Seymour told the Herald.
“I never resiled from the original position, which is the right one,” he added.
Seymour also agreed that there are a range of illnesses that, despite not causing death in the short-term, “condemn people to long periods of suffering” and should be included in the law. He gives the examples of motor neurone disease and Huntington’s disease.
In their letter, the doctors also call on the Government to change the act to allow dementia and Parkinson’s sufferers, among others, the right to access assisted dying in New Zealand.
The End-of-Life Choice Society NZ says the current wording of the law means too many people are being left out.
They state that “a growing number of assisted dying practitioners, patients and families who would like to see the option of assisted dying extended more equitably to grievously and irremediably suffering patients”.
You can read the open letter in full below:
Legislation creates inequity, entrenches unnecessary suffering.
The first-year report on assisted dying in Aotearoa New Zealand has been released by the Ministry of Health. It shows that 257 people accessed assisted dying between November 2021 and November 2022. There were 661 applicants, with 74 applications still open at the closing date. A total of 129 were found ineligible and 140 died during the process of application. Cancer accounted for 68% of underlying causes and 77% were receiving palliative care at the time of making their application.
No medical practitioner reading the report can fail to notice the enormous discrepancy between cancer as the leading cause of assisted deaths (68%) versus cancer as a cause of death in the general population (around 25%). On the other hand, cardiovascular disease which we have known for years to be the commonest cause of death in New Zealand features as the cause of only 5% of assisted deaths.
The distortion of reality is caused simply by the wording of the End of Life Choice Act 2019. In order to get the legislation through parliament, politicians were allowed to damage and weaken the text, removing the originally proposed “grievous and irremediable medical condition” clause thereby leaving only a “terminal illness likely to end the person’s life within 6 months”.
This immediately created access difficulties for patients with a host of diseases. Among others these include neuro-degenerative disease such as Parkinson’s, Huntington’s, multiple sclerosis, advanced congenital disease, post infectious conditions such as post-polio syndrome, severe cardiovascular disease and advanced, irreversible lung disease.
If the objective of legalising assisted dying as an end-of-life option was to relieve unbearable suffering that cannot otherwise be relieved, it has utterly failed these patients.
So what needs to happen? Here are some thoughts based on the observation of well-regulated assisted dying medical practice in overseas jurisdictions. They include the Netherlands, Belgium, Canada, Queensland and Tasmania.
Firstly, we need to remove the gag on doctors’ initiating discussion about assisted dying as one in a range of options for care with their end-of-life patients.
Rationale: The current requirement for the patient to raise the topic forces inequity into the assisted dying service. Only well-informed patients know this, and only self-assertive patients feel comfortable to do so.
Denying patients equal access to medical advice is indefensible.
Secondly, an eligibility clause that covers the “grievous and irremediable medical condition” category explained needs to be re-instated. The additional qualifiers of being “in an advanced state of irreversible decline in physical capability” and of “experiencing unbearable suffering that cannot be relieved in any manner tolerable to the patient” can remain as part of the essential safeguards.
Rationale: “Unbearable suffering that cannot be relieved” should be the overriding reason for access to assisted dying. Limiting access to those with a 6-month prognosis inevitably leads to exclusion for some patients who are experiencing unbearable and unrelenting suffering, but who don’t meet this arbitrary cut-off.
Thirdly, we have observed the tragic repercussions of requiring a patient to remain mentally competent until the last minute. To address this, Canada has introduced a “Waiver of Final Consent” for patients deemed by their attending medical practitioner to be at risk of losing competency after being found eligible at both assessments, but before administration of the medication. We should do the same.
Rationale: Some patients choose to forego pain-relief medication as it may compromise their cognitive abilities on the appointed date. It is unacceptable to require this already acutely suffering group to suffer more in order to qualify for assisted dying.
Finally, we need to tackle the fraught issue of assisted dying for dementia patients by way of an advance directive. This is possible with a documented pathway that commences at the patient’s request while they still have medical decision-making capacity. An advance directive form would clearly spell out the conditions under which the patient wishes assisted dying. Regular reviews would be required during the period of competency to ensure the enduring nature of the patient’s wishes.
Rationale: Many patients are concerned about a diagnosis of dementia, especially if they have personally witnessed its ravages on a loved one. Although it is possible for those living with dementia to experience a good quality of life in care, it should be the patient who decides whether a life of dependency and a loss of mental competence is acceptable to them or not.
We confirm our unequivocal support for palliative care and for increased government funding to it. But we cannot overlook the fact that 77% of applicants for assisted dying were already receiving palliative care at the time of applying and yet were assessed by two consecutive and independent medical practitioners as “experiencing unbearable suffering that cannot be relieved in any manner tolerable to the patient”. There is much suffering at the end of life that palliative care cannot relieve or remove. This may be because:
As the End of Life Choice Act currently stands, it is good for the fraction of patients who can jump though all the hurdles to access it. But too many who need it are left out. The authors of this article speak for a growing number of assisted dying practitioners, patients and families who would like to see the option of assisted dying extended more equitably to grievously and irremediably suffering patients.
A review of the legislation will commence in November 2024. This is the public’s chance to see law modified to help those deserving but ineligible patients – to grant them the option of turning their end-of-life suffering into a “good death”. The law can, and must, do better.
Dr Gary Payinda MD MA FACEM
Dr Miles Williams MB ChB FRACP
Dr Stanley Koshy MB BS FRNZCGP FRNZCUC
Dr Navin Rajan MB BS FRNZCGP
Dr John Duncan FRNZCGP FAMPA
The End-of-Life Choice Society NZ wholeheartedly supports these recommendations from the assisted dying doctors. Specific endorsing members include:
Source: Gisborne Herald
The Shortland Street episode of June 21 portrays a scenario where an unconscious man on life support has written an advance directive rejecting precisely such support in that situation. His loving wife, believing she is doing the right thing, argues with the doctor against his advance directive: she’s going to stand by her man and fight for life preservation. She wants treatment, treatment, treatment — all in contravention of his wishes. An ever-tearful niece changes her mind from respecting her uncle’s wishes to supporting her aunt’s polemic. The doctor initially argues that the advance directive is paramount, then admits that he also doesn’t want to lose his dear friend, the patient, and appears to teeter between duty and self-indulgence. Tears all round.
Then comes the phone call from the lawyer. The advance directive is indeed legally paramount. Why? Because it is the person speaking for himself: in “advance” of the situation, he is giving his “directive” (instructions). He does not want efforts to prolong his life in such a situation.
Promos indicate that the June 22 episode will be the final farewells to the patient as the doctor switches off life support and the patient gets what he wanted: an end to torture. More tears, surely.
If you think this drama could only happen in a soapie, think again. Intensive care doctors tell us over and over again that families are the primary cause of suffering imposed on loved ones in situations where there is no prospect of a return to any kind of quality of life. It’s the families who demand that doctors do everything to “save” them, even against medical explanation that further treatment is likely to cause great suffering and nevertheless end in the kind of death no one would want.
How to avoid? Make an advance directive.
I have a vested interest in telling you this story. I’m a member of the End-of-Life Choice Society NZ. The society has excellent information about advance directives. Download a free copy of their “Guide to Dying Your Way” booklet with the form at the end of the 20-page document. Read the booklet’s advice, print out the form, complete it in the way that’s right for you, follow the recommendations for ultimate protection. The form describes the terms and conditions under which the advance directive would come into effect.
To ensure your wishes are respected, sign the form in front of an independent witness, preferably your doctor. Get your doctor to sign in the witness panel and apply their provider stamp to the document. This tells any other doctor treating you in an emergency situation that your advance directive has been sighted by a medical professional. Ask your doctor to scan a copy of your advance directive to your primary health care file and also to send a copy to your local hospital network. An alternative is to get your advance directive witnessed by a nurse practitioner or JP.
If Shortland Street is the best way to inform people of their options and self-protections under medical health law, then I’m quite suddenly a fan of Shortland Street.
■ Ann David is president of the End-of-Life Choice Society NZ. She lives in Waikanae.
The Royal College of Surgeons is no longer opposed to assisted dying and are now 'neutral', it has been announced.
The organisation's council members voted after discussing survey results, which showed an appetite for change, a move which has been welcomed by campaigners.
In the organisation's independent assisted dying survey, which was carried out over four week in February and March this year, found that more than half of respondents would support a change in the law to allow assisted dying.
A fifth of the 19 per cent of membership that responded said the organisation should take a neutral stance, which just three per cent were undecided.
Just over a quarter said they were opposed to a change.
It comes after a decision was taken to review its position on the controversial subject in 2021, having previously held a firm stance of opposition to assisted dying since the subject was last discussed in 2014.
In a statement, the college said: 'Following discussion of the survey results at our council meetings, council members voted to move the RCS England to a position of neutrality.'
Former president of the Royal College of Surgeons of Edinburgh, Professor Sir John Graham Temple praised the organisation for 'listening to its members and adopting a fair, representative position on assisted dying'.
'I personally believe, as do a growing number of medics, that a safeguarded assisted dying law would improve the relationship between doctors and patients, allowing for more open conversations and greater transparency at the end of life', he said.
'This debate is not going away and the law will inevitably change. As momentum for reform grows, our profession must seize the opportunity and play our part in determining what law change looks like.'
Sarah Wootton, chief executive of Dignity in Dying, said: 'The RCS should be praised for its constructive engagement in the assisted dying debate; a conversation that is becoming impossible for medics and parliament to ignore.
'Neutrality is the only stance that enables medical bodies to contribute fully and fairly to this debate, representing the range of views among their members and ensuring the voices of terminally ill people are at the forefront.'
The Health and Social Care Committee is currently holding an inquiry into assisted dying.
Trevor Moore, Chair of campaign group My Death, My Decision, said: 'Medical professionals are increasingly coming to the conclusion that assisted dying should be legalised in the UK.
Source: NZ Doctor
Having previously been against assisted dying, specialist GP Jo Scott-Jones describes the immense privilege of helping someone die in the way they want, and offers insight into the personal and professional considerations involved
Families might share photos and flowers, but always love and support on the day of the assisted death [Image: Ron Lach on Pexels]
I examined my moral compass, talked to trusted people, and came to understand that my conscience would allow me to do this
I examined my moral compass, talked to trusted people, and came to understand that my conscience would allow me to do this
Most of us GPs voted against the assisted dying legislation in 2020. I did.
I believed that palliative care services provided all that people needed, that having this option would undermine public confidence in the system, and that it would reinforce the fear that people have of the end of life.
As a lapsed Catholic, within a limescale of residual beliefs, I still hold onto the idea of the sanctity of life and have faith that the challenging confusion and suffering that surround us is part of a bigger picture which we do not understand. (Maybe semi-lapsed.)
Once the legislation was passed, none of us could ignore the process. At the very least, we had to understand what it involved, and in my clinical leader role, I had to pass this on to colleagues and develop policy and procedure guidance for various teams.
As I watched the system develop, took part in the planning, and thought more about what was being made available to patients, a stronger feeling developed. I wanted to ensure that this was done properly and for the right reasons. I recognised that my training, clinical experience and expertise enabled me to do the work.
I could assess whether someone was in a state of irreversible decline in their physical capacity; if they had a terminal illness likely to end their life within six months; and if they were competent to decide, I could provide the medication.
I examined my moral compass, talked to trusted people, and came to understand that my conscience would allow me to do this. It met my values to relieve someone’s unbearable suffering, especially if it could not be relieved in a manner that the person considered tolerable.
As a specialist GP with a strong belief in generalism and the importance of “being there” for people at every life stage, from cradle to grave, not only could I do this, but if it was not going to be people like me, then who would do this?
I took the LearnOnline courses (learnonline.health.nz), attended the training sessions with the Ministry of Health team, and was soon referred my first patient.
First, the statistics
Cases are confidential and the story I tell is an amalgamation of experiences, but the statistics paint a picture. During the quarter from 1 October to 31 December 2022, the ministry received 218 new applications for assisted dying. Of these:1
Most people who are assessed as eligible have an assisted death; however, again, the ministry’s statistics tell a tale. This is not the outcome for everyone.
“Attending medical practitioners completed 222 assessments; independent medical practitioners completed 156 assessments. During this quarter, 140 applications were confirmed as eligible and 102 assisted deaths occurred. During this period, 95 applications did not proceed due to the applicant either withdrawing their application; being found ineligible; or dying as a result of underlying conditions. Note that not all assessments or outcomes may relate to applications started in this reporting period.”1
Preparations and conversations
Our first consultation was in the patient’s home – most are home visits. I had allowed for a 90-minute conversation, and family and friends were present, although sometimes since it has been just the patient at the first visit. I spent time with them as a group and with the person on their own.
I indicated that I would not be making a decision on that day but was there to answer questions and to find out more about them and the situation.
This was someone I had never met before, so sharing with them some of my background, and gathering information about them, their life, their family and their work, all made it easier to progress the consultation.
I asked open questions. “What has led us to meet today?” “What are your expectations of this meeting?” “Tell me about your illness.” I asked if they wanted to know more about assisted dying and answered their questions.
With family there, I took the opportunity to explore their expectations and fears with them independently, and more particularly for the process, if there was any suggestion that a decision was being made under any coercion.
I explained I would be gathering more information, and we completed the consent form to allow me to do this. I told them there would be a second opinion, and possibly a third, and that the registrar (assisted dying) would also have to agree. This process often takes several weeks – it is not an urgent service. I told them I would be in touch.
I spoke to the person’s GP and again ascertained this was the person’s own decision, made with no external pressure. We agreed the prognosis was short and the suffering great. Although these decisions are not the GP’s responsibility, it was helpful to have my opinion confirmed by a colleague. We arranged for me to have a copy of relevant notes, and I explained that a fee could be claimed from me for these.
I did not need to talk to any specialists for my first case but have done so subsequently, usually to obtain further evidence to help with confirming prognosis.
The second opinion took a few weeks to come through. Then, I arranged a further visit to the person’s home to explain they were eligible. This news was greeted with joy from the patient and supportive comments from the family, but it was clear they carried a lot more anxiety and fear than the person planning to die.
It has often been the case that the family have been the most apprehensive. After all, they do not want their relative to die, ever, and the idea of this happening on a specific date, at a defined time, is difficult to process. They need a lot of support and reassurance, but usually focus on supporting what their whānau member wants.
The individual now has another tool in their toolbox to deal with their unbearable suffering. The fact of simply having this option can bring great relief. They can always defer or bring forward the date once they are found to be eligible, and they can withdraw from the decision at any time. They have control over something that was otherwise out of their hands, unknown and unknowable. For them, there is light at the end of the tunnel.
We confirmed a date and discussed whether they wanted to have oral or injected medications. Did they want me to administer them, or did they want to do this themselves? They made their choice.
My patient set a date a few weeks ahead, planned with whānau a series of events over the coming month to say farewell, and developed a detailed timetable for the day itself.
I completed the final set of forms and received the medication kit a few days before the date that had been set. I phoned again, to let them know everything was in place and to confirm we were still on track for the agreed date and time.
The first time
On the day, I got to the home an hour before the agreed time of death. I knew what to expect on my arrival from the planning discussions. Sometimes, there is a houseful of people, balloons and a party in progress. For others, it’s a more muted gathering of family and friends. For each case, they have made the day and setting as they wanted. There have been karakia, there have been prayers, there have been tales of past glory, family photos and flowers, and there has always been love and support.
I have not yet had to help someone who does not want family to know or be involved with their care, but this may happen. This is an individual’s choice.
I spent some time alone with the person, confirmed their intent to continue and prepared to deliver the medication. At the agreed time, the family gathered around the bedside, lay with them and held hands.
I started administering the series of medications, then took a seat in the corner of the room, allowing the family to be where they needed to be. After the first medication, the patient was asleep; after the second, deeply asleep; and after the third, their breathing had stopped. Some family wept quietly, while others just sighed.
I made myself absent for 30 minutes. On return to the room, I confirmed death and began removing the equipment that had been used, tidying up and getting ready to leave.
The family asked me to stay for a cup of tea. They wanted to tell me they were grateful, amazed at how peaceful and straightforward this had all been, and how their fears of mess and struggle were not realised.
They kept saying how this was exactly what their relative had wanted; they were now at peace.
As they called the funeral director, I left the home, drove to a quiet place and reflected on what had just happened. I had been nervous about the technicalities – mostly about the delivery of medication. As this was my first time providing this service, I had been anxious about how it would look and feel. For me, it felt like it was simply the right thing to do for that person. This was another way of caring for someone with unbearable suffering.
I completed the death certificate online and informed their GP that they had died.
An immense privilege
I want to encourage GPs and nurse practitioners to get involved in this service. It can be something to have in your armoury to help just your own patients, or you may feel able to become a provider for people more widely in your region. I respect those with a conscientious objection to this service but note that if a patient asks about assisted dying, they have the right to more information.
It is an immense privilege to support someone and their whānau through the decisions around assisted dying. While administering the medication itself is challenging, by the time this is happening, you have got to know the person well, the rationale is clear, their choices made and the alternative of unbearable suffering that cannot be relieved in a manner acceptable to that person, untenable.
Jo Scott-Jones is medical director for Pinnacle Midlands Health Network, has a general practice in Ōpōtiki and works as a specialist GP across the Midlands region
More information about training and the service can be found on the ministry’s website: tinyurl.com/MOH-AssistedDying
"Sign and share - petition closes this Sunday, 30th April. Meet Barbie - she loved family, being a grandmother, travel and the outdoors. She was clear that being able to enjoy life was what was important to her, not living as long as possible.
When her advance care plan - saying to let her pass if a medical event took away the quality of life she wanted - was not followed by the hospital after a severe stroke, she chose to refuse food and fluids. She died 58 days later.
Sign now to ensure your right to control your own medical decisions for health care. https://barbiesbill.nz/"
MADRID, March 22 (Reuters) - Spain's Constitutional Court has dismissed a challenge by far-right party Vox against a euthanasia law approved in 2021, dealing a second blow to Vox on Wednesday as its no-confidence motion against the government failed in parliament.
By a wide margin of nine votes in favour and two against, the court's justices upheld the bill that legalised euthanasia and assisted suicide for people with incurable or debilitating diseases who want to end their life.
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Spain is the fourth country in the European Union to have such a law.
The ruling came right after Vox's attempt to oust Prime Minister Pedro Sanchez with a no-confidence vote failed to garner the 176 votes it needed to succeed, obtaining just the backing of Vox's 52 lawmakers and one independent deputy.
The court said it based its ruling on two constitutional articles guaranteeing the fundamental right to physical and moral integrity and the principles of human dignity and free development of personality, respectively.
"The Constitution protects a right of self-determination that allows individuals to make a free, informed and conscious decision on how and when to die in medically proven situations of terminal or seriously incapacitating illness," Judge Ramon Saez wrote.
Both Vox and the conservative People's Party (PP) had voted against the bill. Euthanasia is strongly opposed by the Catholic Church, whose doctrine views life as a divine gift that should not be prematurely shortened.
The PP also challenged the constitutionality of part of the law before the top court, but Wednesday's ruling effectively means it is set to be dismissed with the same arguments the court used to throw out Vox's appeal.
In this edition:
Assisted Dying – Mate Whakaahuru Forum: One Year of Service 2022
Yearly Reporting Update
Manatū Haoura (Ministry of Health) successfully hosted a workforce forum on 26 and 27 November 2022 in Wellington to mark the first year of the Assisted Dying Service.
The forum provided an opportunity for people from the health and disability sector to come together to share their experiences of the assisted dying service and look ahead to the ongoing development of the service. The setting provided a safe space for practitioners to have open discussions, network with their peers and meet the Assisted Dying Secretariat kanohi ki te kanohi. It also provided attendees with an opportunity to give feedback on the service to date.
The forum included presentations, panel discussions and practical breakout sessions presented by both Manatū Hauora and guest speakers. These included the Human Rights Commission, Te Apārangi: Māori Partnership Alliance, assisted dying service providers and practitioners from other end of life care services such as palliative care. The post event survey feedback was very positive and supportive of the event.
The Ministry is preparing its first annual yearly assisted dying service report. The Ministry is aiming to publish the report by the end of March 2023 on their website.
Aotearoa New Zealand’s health and disability system is being transformed to create a more equitable system and achieve better health and wellbeing outcomes for all New Zealanders.
What does this mean?
As part of these reforms, some functions have been transferred from Manatū Hauora to Te Whatu Ora, particularly those with an operational focus.
Some clinical advisory and operational functions from the Regulatory Assurance Functions (Assisted Dying and Abortion Services) transferred to Te Whatu Ora on 6 March 2023.
This transfer will not impact service delivery, and key contacts will remain the same.
Functions will be shared across the two organisations in line with the broader health transformation to improve service delivery for all who reside in New Zealand.
Over the coming months, websites will start to look a little different. You may be redirected to a new look website managed by either Te Whatu Ora | Health New Zealand or Manatū Hauora (Ministry of Health).
PHOTO: GETTY IMAGES
It is now more than a year since assisted dying became legal, and the End of Life Choice Act has allowed physician-assisted dying according to certain criteria.
These criteria restrict this choice to those who (a) are of sound mind, and whose choice is therefore fully informed, and (b) have less than six months of predicted survival.
Thus, of the 214 people accessing the service up to September last year, the considerable majority suffered from advanced cancer, and a smaller number were diagnosed with the muscle-wasting condition, motor neuron disease.
One group who are, by these criteria, excluded from the choice of an assisted death are those in an advanced state of dementia, the commonest being Alzheimer’s disease.
But they cannot, on current criteria, make the cut. Obviously enough, a demented person would not, at the time, "be competent to make an informed decision about dying" — and survival can extend unpredictably well beyond six months.
Back in 2012, in an earlier iteration of Parliament gearing itself up for a debate apropos, Maryan Street drew attention to public demand, saying "The thing I clearly had in my mind, and from what I’ve been told time and time again, is that prominent fear of Alzheimer’s, people’s fear of ending their days with a lack of dignity, and not even knowing. So I had to put it in [the planned legislation]".
But her Bill died aborning; and when David Seymour reignited the question some years on, whether or not he might have preferred to include dementia as a grounds, he needed to compromise in order to bring others in Parliament on side.
The difference with respect to dementia is the need for an advance directive, to be written when the person is of sound mind — and this is not allowed under the current law.
We can look to jurisdictions overseas for precedents where people can write an advance directive in the specific case of a subsequent dementia.
It was most recently proposed in Quebec and Canadians are broadly in favour.
In a recent survey for The Globe and Mail (Toronto’s morning paper), "80% of respondents agreed, or somewhat agreed, that Canadians should be able to make advance requests outlining their conditions for assisted death, for when they can no longer legally give consent".
New Zealanders might be fairly similar in their views.
The broad principle is straightforward, and the End of Life Choice Society of New Zealand has free downloadable Advance Directives on their website.
How might our law respond to this? On the specific question of dementia, I have proposed that the following paragraph be inserted in the present legislation, allowing access to physician-assisted dying, for a person who "has made, while in full possession of the person’s mental faculties, and being above the age of 65 years, an advance directive that assisted dying should be administered in the event that the person would, in the future, have entered into an advanced state (stage five or above of the Alzheimer scale) of irreversible dementia, notwithstanding a mental inability at that time to revisit or to confirm the decision, and notwithstanding a likelihood that survival otherwise could extend beyond six months".
By stage five, memory loss is severe, agitation and confusion is common, and the person requires assistance with daily living; and they would no longer be competent to give informed consent.
Stage six is worse; stage seven is nearing a natural death.
The current Act was introduced to enable people who "experience unbearable suffering that cannot be relieved in a manner that the person considers tolerable" to cease their pain and end their lives. Quoting Shakespeare (who well understood humanity), "Though death be poor, it ends a mortal woe".
It is true that advanced dementia does not bring with it physical pain.
But we may here consider the anticipatory existential suffering that would be one’s fate — the thought that one might end up in a nursing home unaware of surroundings, not recognising family, doubly incontinent, daily dressed and undressed by a kind attendant, shunted unknowing from bed to chair and back to bed, and becoming little more than a human husk, the essential spark of humanity all but extinguished.
There’s a cliche that can describe this, at least as many would see it: a fate worse than death.
My proposal as above is, I understand, to be included among the material to be considered for when the Act comes up for review.
It will not go amiss if those who find themselves in agreement raise their voices in support.
— Mac Gardner is a retired medical geneticist.
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