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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]
Key points
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/"
Reuters
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
Function Transfer
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.
Functions Transfer
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).
Source: ODT
Opinion
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.
The Voluntary Assisted Dying Act will take effect from Tuesday 31 January 2023, allowing people who are terminally ill and suffering intolerably to ask their doctor for medical assistance to hasten their death.
If you want to access voluntary assisted dying (VAD), your first port of call is the VAD Care Navigator Service in SA. Phone them to speak to a Care Coordinator, trained to provide information about VAD. They can support you through the application process, which can be complicated. They also provide support for regional, remote and rural areas.
The SA government has also released this helpful booklet.
Go Gentle's CEO Dr Linda Swan welcomed the new law:
We are pleased South Australia has become the fifth state to allow voluntary assisted dying for its citizens suffering with terminal illness. This is a much-needed choice that will bring relief, comfort and reassurance to people at the end of life.
Who can apply for VAD?To use South Australia's law, a person must be:
To find out more, visit the SA Health VAD page.
Why have we had to wait? The law passed the South Australian Parliament in June 2021. However, there has been an 'implementation period' before the law takes effect so medical staff could be trained and systems set up.
What happens now? If you or someone you love has been diagnosed with a terminal illness and are considering VAD, it is important to speak to your doctor about your wishes and contact the VAD Care Navigator Service if you need support.
Remember - to avoid stress and delays, start the process early. VAD is not an emergency procedure. Experience from other states shows it can take several weeks, on average, to complete the application.
Finally, thank you! This law would never have passed without the impressive community advocacy from individuals, families and doctors who fought for this reform.
Our deepest gratitude also goes to the members of the SA Parliament who took such care to place decisions back in the hands of dying people.
Last but not least, thank you to each and every one of you who took the time to write to your MPs, bravely share your stories, sign petitions and attend vigils up and down SA. It made all the difference.
If you have any questions, please do get in touch.
The team at Go Gentle Australia
Source: Go Gentle Australia
Yesterday the Australian Senate passed the Restoring Territory Rights Bill, overturning a 25-year ban on the Northern Territory and ACT debating their own Voluntary Assisted Dying (VAD) laws.
The bill passed on the voices. Finally, the NT and ACT can make up their own minds on VAD - rather than federal powers deciding for them.
This rights a historic wrong. Back in 1995, the NT bravely passed the world’s first compassionate euthanasia law. However, when the Commonwealth heard, a small group of well-organised, anti-choice politicians set about overruling the NT’s law and gagging both territories on the issue.
The 25-year fight to restore Territory Rights has been one of the most vexing for end-of-life choice in Australia, but also one of the most rewarding. Politicians from across the political divide - not all of whom support VAD - have come together to respect the democratic rights of 700,000 Territorians.
Every Australian state has now passed a VAD law; it is only right that the NT and ACT have the choice to do the same.
Our heartfelt thanks to
Supporters like you, for sharing testimonies, contacting MPs, signing petitions and making your voices heard;
Marshall Perron, former NT chief minister and architect of the NT’s original euthanasia law, for his continued fight for Territorians’ self-determination long after he left politics;
Judy Dent, whose husband Bob was one of just four people to use the NT’s law before it was overturned, for never wavering in her pursuit of justice;
Northern Territory Voluntary Euthanasia Society and Dying With Dignity ACT, led by Judy Dent and Jeanne Arthur respectively, for leading Territory Rights campaigns for decades;
Tara Cheyne and the ACT Legislative Assembly, for keeping the spotlight on this issue;
The Australian Greens for their steadfast support for Territory Rights and voluntary assisted dying over many decades;
Federal Labor MPs Alicia Payne (ACT) and Luke Gosling (NT) for drafting and introducing this bill in the House of Representatives;
Long-time proponent ACT Senator Katy Gallagher and her colleague Senator David Pocock, for using every avenue to ensure a final vote happened this year;
And all MPs and Senators for supporting the rights of Territorians to decide for themselves about their own lives and deaths.
Together, we have shown our federal parliament their overreach would no longer be tolerated by the Australian people.
What's next?
Since the Lower House already backed the Restoring Territory Rights Bill 99 votes to 37, it now becomes law.
However, VAD is not yet legal in the NT and ACT. Their Legislative Assemblies must now debate whether to pass their own laws, as every state has had the opportunity to do.
This is a long-overdue but significant step towards compassionate, end-of-life choice for all Australians.
The right to “assisted dying” is bringing a sense of relief to many New Zealanders. But one year on from its introduction, there is frustration over the law’s tight confines.
by RUTH NICHOL ● photograph by HAGEN HOPKINS (NZ Listener November 2022)
Click here to read more »
There are many forces that differentiate us in the world: politics, religion, beliefs to name only a few. One thing that unites us is the desire to die with dignity. Asunción Alvarez, president of the World Federation of Right to Die Societies said, “Around the globe, many people fight to make a death with dignity possible for themselves and those they love. It is these people that we would like to put in the spotlight for World Right to Die Day 2022; the Champions, who through their support, activism, fighting, writing, willpower, vision and strength, are advocating to make right to die legislation possible all over the world.”
Champions such as New Zealand’s Dr Libby Smales from the Hawkes Bay and the late Esther Richards from Tauranga.
As a retired palliative care consultant and former hospice director, Libby allowed herself to be co-opted by TV programmes on national and regional channels during the 2020 referendum year, staring down official palliative care spokespersons and an Opus Dei lawyer with that most uncomfortable weapon: the truth. “Wonderful as it is”, she said, “palliative care is neither infallible nor sufficient in all circumstances.”
During the last increasingly difficult months of her life, Esther Richards permitted a documentary film crew to follow her assisted death so that the resulting current affairs programme could inform others. On TV she said, “I don’t want to die as someone other than me”. She remained Esther to her last breath.
At 18.30 local time on November 2nd, the End-of-Life Choice Society NZ will post the World of Champions map on www.eolc.org.nz as will all 58 World Federation of Right to Die Societies spread through 30 countries across six continents. Rob Jonquière, Executive Director said, “The World of Champions tells the stories of the parents, siblings, activists, doctors, supporters and volunteers who are working to make dying with dignity possible from all the corners of the earth. It is a testimony of their struggle and the complexities they face in championing the right to die with dignity. In some areas, the map is empty, and while there are certainly Champions in each of these countries, their efforts are shrouded in silence without right to die societies to support their cause and tell their story. We hope that they will join us in time.”
At the biannual World Federation Conference of Right to Die Societies in Toronto, Canada, WFRtDS president Asunción Alvarez will unveil the World of Champions map at a special presentation at 18.30 (EDT)and discuss the achievements of our Champions thus far in 2022 and the challenges we face in 2023.
Join us in celebrating the unity and commitment of Champions worldwide on November 2nd, World Right to Die Day, by reading and sharing their stories as well as joining us in supporting their advocacy.
See the End-of-Life Choice Society NZ www.eolc.org.nz Our organization has been fighting since 1979 to obtain and defend the right to die with dignity for New Zealanders whose incurable medical conditions cause them intolerable suffering that cannot be alleviated.
The World Federation of Right to Die Societies’ goal is to ensure that everyone has the right to die with dignity, peacefully and without suffering. Founded in 1980, the federation comprises 58 right to die organizations from 30 countries and facilitates the cooperation between member societies to utilize the experience and expertise of professionals already lawfully assisting people to die. For more information, please visit www.wfrtds.org ENDS
ENDS
In NZ, contact Ann David, President End-of-Life Choice Society. +64 27 573 8085 ann.david@outlook.co.nz
Internationally, contact World Federation of Right to Die Societies janebarrett@worldrtd.net +31.6.47594091
Opinion by Ann DavidEnd-of-Life Choice Society president
Source: Gisborne Herald
Ahead of the release today of the Assisted Dying Registrar’s first report to Parliament, the End-of-Life Choice Society highlights information that has come to it from members of the public using the service.
Praise flows for the clinical advisers at the coalface of the Assisted Dying Service, for their efficiency and sensitivity. They handle all the necessary communications with and between doctors, specialists, psychiatrists and patients. In two instances known to us, applicants who were bitterly disappointed to be found ineligible say they were nevertheless counselled with warmth and compassion by their clinical advisers.
As expected, even more generous praise flows for the assisted dying doctors. The parent of an assisted dying patient described the death as “surreal and sort of beautiful”. She was living in an urban rest home but “didn’t want to die in a room”. Family and friends arranged to transport her to a chosen outdoor setting. Facing a beautiful bush view, she embraced loved ones for the last time. When she signalled readiness, the assisted dying doctor stepped forward. The patient had chosen to take the medication orally. Within minutes she fell into a sleep from which she never awoke. She had avoided a prolonged and gruelling death, remaining instead in personal control to the end.
While most assisted dying patients choose to die in their own bed at home, a North Island patient wanted to farewell the animals on his land one last time. Then when he was ready, he took the life-ending medication from his doctor waiting close by. His hospital death would have been harrowing for him and his family; his suffering unable to be relieved in spite of excellent care. Instead, his assisted dying doctor went above and beyond to make death peaceful and personally meaningful for him.
An End-of-Life Choice Society member shared with us a comprehensive, user-friendly booklet given to assisted dying applicants like herself outlining next steps and recommending actions for finishing unfinished business. “My assisted dying doctor couldn’t be nicer,” she said.
But it’s not all roses. There are obstructions, whether deliberate or unintentional. When a patient’s own doctor declines to help, the law requires that doctor to tell the patient they can seek assistance from “SCENZ”, the newly-created statutory body within which the Assisted Dying Service operates. But the law does not actively require declining doctors to provide the relevant contact details of SCENZ, so some choose not to.
Their frantic patients may or may not find their way to the End-of-Life Choice Society’s “Contact Us” page. To those who have, the society provides the 0800 Assisted Dying number that features on our website and then follows up a few days later to make sure the patient has been attended to. They always have been and they are always enormously relieved. Clearly, just knowing help is at hand is palliative to a dying sufferer.
Of the 33 hospices that fall under the Hospice NZ umbrella, only two allow assisted dying onsite. The End-of-Life Choice Society thanks Totara Hospice in Auckland and Cranford Hospice in the Hawke’s Bay for their enlightened leadership and for upholding the hospice philosophy of respecting patient autonomy and of caring for patients non-judgmentally. We are gratified to know that 80 percent of assisted dying patients are in palliative care at the time of requesting assisted dying.
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