ACHLR Oration on assisted dying and palliative care

Professor Luc Deliens recently joined the QUT (Queensland University of Technology) Faculty of Law's Australian Centre for Health Law Research (ACHLR) to deliver a public lecture on assisted dying and palliative care.

Professor Deliens explored the complex relationship between assisted dying and palliative care services within the context of legalised euthanasia in Belgium. In the international debate about assisted dying, it is often suggested that assisted dying is incompatible with palliative care. However, Professor Deliens shed light on 15 years of voluntary assisted dying in Belgium and concluded that in the context of legalised euthanasia, euthanasia and palliative care do not seem to be contradictory practices.

If you are a doctor and support Voluntary Assisted Dying legislation with strong safeguards, join us here: bit.ly/2xu5byP

 


Newsletter October 2018

Late September, the Victorian Government released the Voluntary Assisted Dying Regulations 2018 to support the Voluntary Assisted Dying Act 2017. While the ACT speaks to the legislation of Voluntary Assisted Dying, the REGULATIONS set out how the legislation will operateThe regulations also include prescribed forms for voluntary assisted dying permits and permit applications, as well as for labelling statements for a voluntary assisted dying substance.

This is an important step as it makes the law that much harder to repeal, should the Labor government not be returned at the upcoming November elections. 

The Better Health Channel of the Victorian Government has now published its website for Voluntary Assisted Dying, which outlines the most frequently asked questions.

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Channel 9 program 60 Minutes interviewed Dr Alida Lancee, a GP from Perth, about her admission she had helped a suffering patient die. The story also features WA Dr Frank Kotai and Dr Rodney Syme. Her story was first published in The Damage Done, a collection of 72 testimonies that describe with horrifying clarity the damage being done across Australia in the absence of a law for voluntary assisted dying. Watch the story online.

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The WA Government is still considering its response to the report of the Western Australian Joint Select Committee on End of Life Choices. Unnecessary suffering at end of life, and broad community agreement regarding individual autonomy, form the basis for the Committee’s recommendation that the Western Australian Government draft and introduce a Bill for Voluntary Assisted
Dying. The Committee also recommended a Bill be drafted in consultation with a panel of experts. 

If you live in WA please contact your local MP today to strongly encourage the Government to put forward this legislation.

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We received the heartbreaking story of Sian Briggs' father, whose violent death of cancer was far more terrible than anything she could have imagined. Read the story on our website.

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Personal testimonies are a powerful way to make legislators understand the need for such laws. If you live in Western Australia and have a story, we invite you to share it with us via our secure website. If you prefer to chat with someone, contact us via stories@gogentleaustralia.org.au and we will reach out. 

Thank you for your ongoing support.


Euthanasia advocate Andrew Denton urges WA doctors to back laws

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This story was first published in The West Australian on Tuesday 18 September. Photo: Simon Santi

Broadcaster Andrew Denton has urged WA doctors to stand up in support of proposed euthanasia laws.

In Perth to lobby for proposed laws, Denton said support from the medical community had been crucial in getting Victorian laws passed and he hoped to see the same in WA.

“A key voice in Victoria that helped politicians decide in favour of these laws were a number of principled doctors and nurses who stepped forward and said, ‘You know what, there are patients we can’t help and we would like a law to be able to help them’,” he said.

“Many doctors hesitate to do that because it’s a conservative profession, they’re conservative by nature.

“The opportunity to genuinely pass a law like this comes along very rarely.

“Western Australia is about to have that opportunity and there will be doctors reading this who know exactly why these laws should exist.

“I hope that they step forward, I hope that they make themselves heard to their local members because their voice is important.”

Denton is a high-profile euthanasia advocate through his directorship with Go Gentle and his podcast series, Better Off Dead.

He has spoken of the experience of watching his father Kit die as a motivation to dedicate his time advocating for euthanasia laws.

Last month, a landmark parliamentary report, which was the result of a yearlong parliamentary cross-party inquiry, recommended State Parliament approve laws for voluntary assisted dying for WA adults who experience suffering related to terminal, chronic or neurodegenerative conditions.

Denton said Go Gentle hoped to be a source of evidence-based research to counteract anti-euthanasia arguments, as it was when the Victoria Government was wrestling with the same issue.

He said he would be disappointed if the WA Government did not put forward legislation.

“My sense is that they’re going to be politically pragmatic,” Denton said.

He said he was frequently stopped in the street by people who wanted to share their stories. Denton said that while he had at times “emotionally struggled”, he also regarded it as “an honour” as well as an indication of how passionate many in the community felt about the issue.

“I was at a service station the other day and two truckies grabbed me and started telling me about what happened in their family,” he said. “The death of someone you love is a very intimate thing to share and it’s a very difficult thing to talk about, so if someone wishes to share those stories I have incredible respect because I know how hard it is to do.”

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If you are a doctor and support Voluntary assisted Dying legislation, we'd love to hear from you.

Share your story via our secure page or contact us and one of our team will reach out to you.


Newsletter September 2018

As you may have heard, Senator David Leyonhjelm's Restoring Territory Rights (Assisted Suicide Legislation) Bill Bill was defeated 36 to 34 on August 16 meaning that, once again, citizens of our Territories have been denied the same right as every other Australian to debate, and pass, laws for voluntary assisted dying. There were multiple reasons for the narrow defeat, none more so than the late reversal of support from Senators Georgiou (One Nation), Burston (Clive Palmer), Martin (Nationals) and Gallacher (ALP).  The matter isn't entirely over yet: MPs Luke Gosling and Andrew Leigh have tabled the Restoring Territory Rights Bill 2018 which may be debated in the House of Representatives in September.

We would again like to thank everyone who contacted their Senators, whether through our site or one of the sites of the Dying With Dignity organisations around the country. Your efforts have been noticed and contributed to the debate.

We also drew your attention to an ePetition in Queensland of Voices for Change. This petition attracted well over 3,000 signatures and has certainly sent a message to the legislators in Queensland that an inquiry into End of Life Choices and Voluntary Assisted Dying is important to their constituents. It added to the voices of the Clem Jones Group, DWD Queensland and many others.

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Over the weekend, Queensland Premier Palaszczuk announced an inquiry. "The parliamentary health committee will begin examining all issues to do with what's known as end-of-life care," she said. "I have personally listened to those who have watched their loved ones suffer … and I too have watched my own family suffer." This will be the 4th inquiry, following in the footsteps of Victoria, Western Australia and the Australian Capital Territory. We will keep you up to date of key dates and let you know when you can lodge a submission to the inquiry in due course.

 

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Another positive piece of news happened on 23 August, when the report of the Western Australian Joint Select Committee on End of Life Choices was tabled in both House of Parliament. A copy can be downloaded here.

Unnecessary suffering at end of life, and broad community agreement regarding individual autonomy, form the basis for the Committee’s recommendation that the Western Australian Government draft and introduce a Bill for Voluntary Assisted
Dying. The Committee also recommended a Bill be drafted in consultation with a panel of experts. 

The Committee, which was made up of Labor, Liberal, National and Greens MPs, voted 7-1 in favour of these recommendations.

The Government now has 3 months to respond to the report. 

The narrow defeat in Canberra was a reminder of how challenging it is to pass these laws in the face of concerted disinformation-and-fear campaigns mounted by our powerful and well-resourced opponents, particularly those from within the medical profession. If you live in WA please contact your local MP today to strongly encourage the Government to put forward this legislation.

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As things develop in Western Australia we will keep you informed. Once the campaign gets underway we will be counting on your support as we seek to represent the voice of those who are suffering needlessly at the end of life.

 

 

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Last year we released Lawrie's Last Letter. This powerful video tells the story of Lawrie Daniel's last letter to his wife, Rebecca, which she found after he took matters into his own hands, unable to continue to bear the suffering caused by his Multiple Sclerosis. We know there are many stories, some of which are on our Story Wall and in our book The Damage Done.  Personal testimonies can be a powerful way to legislators understand the need for such laws. If you live in Western Australia and have a story, we invite you to share it with us via our secure website. If you prefer to chat with someone, contact us via stories@gogentleaustralia.org.au and we will reach out. 

Last but not least, Go Gentle Australia is growing! We're looking for a digital content manager. If you, or anyone you know, would be interested, please look up the job description and apply.

Thank you for your ongoing support.


Ask your WA MP to support a Government bill

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On 23 August, the report of the Western Australian Joint Select Committee on End of Life Choices was tabled in both House of Parliament. A copy can be downloaded here.

Unnecessary suffering at end of life, and broad community agreement regarding individual autonomy, form the basis for the Committee’s recommendation that the Western Australian Government draft and introduce a Bill for Voluntary Assisted Dying. The Committee also recommended a Bill be drafted in consultation with a panel of experts. 

The Committee, which was made up of Labor, Liberal, National and Greens MPs, voted 7-1 in favour of these recommendations.

History has taught us how challenging it is to pass these laws in the face of concerted disinformation-and-fear campaigns mounted by our powerful and well-resourced opponents, particularly those from within the medical profession.

If you live in WA please contact your local MP today to strongly encourage the Government to put forward this legislation

"Form emails" are generally not read - so we won't write the email for you - but we do give you some tips to help you find your own words. 

We need as many voices as possible to speak up and be the loud majority!

Please share this campaign with your friends and networks and ask them to take action. Together we can right this wrong and help write these laws.

Thank you for your support!


Victoria’s voluntary assisted dying law isn’t on a slippery slope

This article was first published on Monash University LENS on  14 August 2018.

This week the Australian Senate will debate a private members’ bill that will consider whether to overturn the 21-year-old Euthanasia Laws Act that nullified the ability of Australian self-governing territories to pass legislation in relation to euthanasia and assisted suicide.

The deliberation on whether to continue the arbitrary over-riding of the territories’ legislative autonomy in this domain will inevitably also turn a spotlight on the judiciousness of Victoria’s recent voluntary assisted dying legislation that empowers terminally ill people who are residents of our state and who are experiencing unrelievable suffering, to end their lives on their own terms.

Standing firmly and resolutely against such legislation is Professor Margaret Somerville, from the University of Notre Dame, who was interestingly described in an article in the Sydney Morning Herald two days ago as having “spent decades observing euthanasia in Canada”, even though medically assisted dying only became legal in that country in 2016.

One of the concerns she has raised is the “slippery slope” to unethical assistance in dying. Currently, this might well be on people's minds because of the reports of the deaths of three minors during 2016-2017 as the result of euthanasia in Belgium, out of 4337 deaths during that period. The deaths of the under-18-year-olds occurred as a result of the removal of age limits on access to euthanasia in Belgium that took place as a result of legislation introduced in 2014, 12 years after the introduction of euthanasia for adults.

In contrast to Belgium (which is the only jurisdiction that places no age restrictions on euthanasia or assisted dying), the Victorian Parliament passed the Voluntary Assisted Dying Act in November last year, which limits voluntary assisted dying (VAD) to terminally ill people 18 years and older, who fulfil very strict criteria in relation to experiencing unrelievable suffering and possessing sufficient decision-making capabilities. They must be in the last six months of life, unless they're suffering from a neurodegenerative disease, in which case they must be in the last 12 months of life.

There are many reasons that both the Victorian Legislative Council’s Inquiry into end of life choices and the Ministerial Advisory Panel on Voluntary Assisted Dying recommended limiting VAD to adults, including the fact that the extensive consultations with the Victorian public led to the firm conclusion that, as stated in the inquiry’s final report: “Victorian values do not support allowing assisted dying to be provided to those who are yet to reach adulthood.”

The ministerial advisory panel also highlighted the need for people to have abstract reasoning abilities and other elements of complex decision-making capabilities that take time to mature. To those reasons, we could add the fact that children and younger teenagers may be predisposed to comply in their decision-making about medical matters with wishes expressed by doctors, parents and other authority figures.

When that decision-making involves irreversible and fatal consequences, it's entirely appropriate to take a conservative view, with the use of 18 being well-established as an upper boundary of childhood, as in Article 1 in the Convention of the Rights of the Child and as preferential to undertaking individualised testing for decision-making capabilities.

In this way, the minimum age requirement for voluntary assisted dying of 18 is the same proxy for determining capability as the minimum legal age requirements for driving, voting and purchasing alcohol.

It’s extremely unlikely that the minimum age requirement will be changed in relation to VAD in the foreseeable future.

First, the Victorian act is very closely aligned to the principles and practice associated with the Dying With Dignity Law that was introduced in Oregon 20 years ago – and very different to the euthanasia laws in Belgium and the Netherlands. Oregon’s medical aid in dying law has been rock-solid and hasn’t been liberalised. This is one of several pieces of evidence that led the RMIT ABC Fact Checkto refute the claim by former prime minister Paul Keating that "the experience of overseas jurisdictions suggests the pressures for further liberalisation are irresistible", after closely examining physician-assisted suicide or euthanasia in 10 jurisdictions.

Strong foundations

There are several other reasons to believe that the road ahead will not be a slippery slope for the Voluntary Assisted Dying Act.

The foundations upon which the legislation is based are extremely strong, solidly grounded on understanding public sentiment and accessing wide-ranging expertise.

The committee responsible for the parliamentary inquiry into end of life choices deliberated over the 10 months, undertook 17 days of public hearings, and was informed by the opinions of 154 witnesses and the viewpoints expressed in 1037 submissions.

The Ministerial Advisory Panel on Voluntary Assisted Dying deliberated over nine months, held 14 consultation forums, including five in regional Victoria, received 176 submissions and recommended 68 safeguards – many being unique to Victoria.

Parliamentarians in the Legislative Assembly (Lower House) and the Legislative Council (Upper House) debated the legislation for a total of more than 100 hours and accepted all the recommendations of the Ministerial Advisory Panel with nine amendments that provided an even higher level of safeguard. We're now nine months into a 20-month pre-implementation period since the passing of the legislation, during which an Implementation Taskforce has been established to ensure that VAD will be introduced – in June 2019 – in a safe and compassionate way, that community information is provided, that professional training programs and clinical, substance and dosage guidelines are established, and that protocols are developed.

Given these detailed and unprecedented endeavours over three years, the likelihood of liberalising the legislation by means of a similar and repeated process would be next to zero.

Differing values

When comparing countries with practices at the end of life (such as Belgium and Australia), it's important to recognise that different countries have different values. In Germany, there's no speed limit on nearly 50 per cent of all autobahns. In the US, there are liberal gun ownership laws. Australia has speed limits – lower than most European countries on our major roads – and strict gun ownership laws. In these instances, Australia has resolutely prioritised safety over freedom or shortened travel times. These values are enforced by law.

Over many years, Australian states and territories have formulated their own laws on assisted reproduction – for example, banning reproductive cloning and commercial surrogacy. There has been no creep in these laws, and they've been effectively enforced. Other countries may have more liberal laws on cloning and commercial surrogacy, but Australian jurisdictions have continued to enforce their own values.

The foundations upon which the legislation is based are extremely strong, solidly grounded on understanding public sentiment and accessing wide-ranging expertise.

With these international comparisons in mind, the fact that euthanasia and assisted dying laws in Belgium, the Netherlands and Switzerland are considerably more liberal than those in Victoria should cause no concern in the minds of those who will be determining the fate of assisted dying legislation elsewhere in Australia.

Opinion polls show a considerable majority of Australians want assistance in dying to be legal for people suffering from terminal illnesses. Victoria’s Voluntary Assisted Dying Act is the safest in the world. It will be enforced by the rule of law. Any liberalisation of that law would have to go through a protracted parliamentary process. There's no reason to believe that our politicians will wish to compromise their concern for the protection and safety of our state’s citizens by undertaking such a liberalisation.

There's no slippery slope in sight for VAD legislation in Victoria. Scaremongering claims about it being a likely prospect could potentially close the door to much-needed access to VAD in other states and territories. Victoria’s parliamentary representatives have, after intense scrutiny and consideration of a vast array of information and opinion, brought to fruition a new law of profound ethical significance. We should be proud of them and of the democratic processes that led to the new legislation. For now and for the decades to follow it should be “steady as she goes”.

Read more

Assisted dying is not suicide

This article was first published in The Kansas City Star on 4 August 2018 as "Medical aid in dying is not the same thing as suicide".

 

Dr David R Grube of Compassion & Choices Oregon
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The untimely deaths of Anthony Bourdain and Kate Spade have shone a spotlight on the suicide crisis our country faces. However, it is important to differentiate the act of committing suicide from medical aid in dying.

Suicide is a tragic result of untreated, reversible diseases such as depression or addiction. Suicidal patients want to end their lives as a result of impaired cognition and deficiencies of impulse control. They are most often alone and may use violent means.

By contrast, patients seeking medical aid in dying do not want to die, but they are dying of an irreversible and untreatable disease or condition. Their goal is to end, rather than prolong, their suffering. They are rational and their cognition is intact. They are connected to family and hospice.

Medical aid in dying is a medical practice that gives mentally capable, terminally ill individuals with a prognosis of six months or less to live the option to request, obtain and self-ingest medication to die peacefully in their sleep if their suffering becomes unbearable. It is a well-established, palliative end-of-life care option with clinical criteria and guidelines that meet the highest standard of care.

I am a retired family physician in Oregon with more than 35 years of experience caring for patients in all stages of life through death, including those who have requested and utilized medical aid in dying. When patients are dying from terminal illness and there is no alternative but suffering in their final days, it is crucial that they are presented with options that will enable them the freedom to face their passage from this life in a manner of their own choosing.

There is absolutely no evidence that in states where medical aid in dying is authorized suicide rates have gone up. National and state level data from the Centers for Disease Control and Prevention’s National Vital Statistics System suggest that suicide rates have varied slightly, but overall have gone down in Oregon since its Death with Dignity Act went into effect in 1997. And in the year and a half since California’s End of Life Option Act has been in effect, the state’s suicide rates have also gone down.

Oregon has 20 years of experience with medical aid in dying, with a tremendous amount of data that assures us of the safety and value of this option. We have seen this same trend in five other states with 40 years of combined experience with medical aid in dying: Washington, Montana, Vermont, California and Colorado.

As the data shows, many terminally ill patients get tremendous solace from knowing they have the option of a peaceful death. With the best possible end-of-life care, most patients will not find the need to use medical aid in dying. Yet we all benefit from the option to end terminal suffering should the need arise because these laws spur conversations between patients, their doctor and their loved ones about all end-of-life care options. As a result, we see better use of hospice, palliative care and pain control.

The debate over whether state legislatures should allow people to manage their passages from this life in the face of terminal illness is an important one. It deserves an honest dialogue that doesn’t falsely equate a violent, disruptive act like suicide with a proven medical practice that allows people in the final days of their lives to die a peaceful death.In Oregon, since our medical aid-in-dying law was passed, more people have not died. But fewer people have suffered.

David R. Grube is national medical director for the nonprofit Compassion & Choices Oregon.


E-Petition for Queensland

 VoicesforChangeVAD.JPGA passionate group of Queenslanders, united under the name Voices for Change Voluntary Assisted Dying, recently launched a Parliamentary E-Petition on End of life choices and voluntary assisted dying.

The minister must respond to a petition within 30 days. The more signatures, the more powerful the message. The goal is to collect 10,000 signatures.

The aim of the petition is "to ask the House to start in inquiry by the Health Committee into better end of life choices and voluntary assisted dying, no later than October 2018 to allow debate and submissions and tabling of a bill within this term of government. 80-85% of Queenslanders want greater choice when it comes to managing their end of life choices which include better palliative care and voluntary assisted dying. "

Please note:

  • you must be a Queensland resident to be able to sign the petition;

  • closing date is 20 August 2018.

Note: this is an E-Petition which is signed electronically only (no paper involved).

 

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August 2018 Newsletter

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The big news of the month is Senator David Leyonhjelm's deal with the government to put the Restoring Territory Rights (Assisted Suicide Legislation) Bill on the agenda. It will be debated in the Senate from the 14th to 16th of August. If you'd like to follow the debate, you can do so online via the website of the Parliament of Australia.

If passed, this bill will allow the parliaments of the ACT and the NT to consider legislation for Voluntary Assisted Dying, a right they currently do not have. As you may be aware, the NT was the first area in Australia to implement legislation in 1997, which was subsequently revoked by the Commonwealth. If you haven't done so already, please contact your Federal Senator to let them you you want them to support this bill. 

It's easy to do: All you need is your address to look up your Senators, write your message and press SEND. It will only take a minute and it's really important as they have already been bombarded with letters from the opposition. We need your voice!

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Several State Dying with Dignity groups have also mounted campaigns, click on your relevant state name to be taken to that page:

DWD NSW DWD Victoria   DWD Tasmania  DWD WA

If the bill passes the Senate, it may go to the House straight away. In that case, we will call on you to contact your local State MPs as well, so please stand by!

Marshall PerronOn the eve of the debate, former Chief Minister of the NT Marshall Perron will address the National Press Club in Canberra on Wednesday 8 August at 12.00 pm. 

A keen advocate of individual rights, Marshall created world history when his private member’s bill, The Rights of the Terminally Ill Act, passed through the Territory Parliament in May 1995. Although the legislation was subsequently overturned by the Federal Parliament, four terminally ill Australians chose to end their suffering using the provisions in the Act while it was in force.

If you are in the area, please join us on the day. Tickets include lunch and are available directly from the NPC website

VoicesforChangeVAD.JPGIn Queensland support for Voluntary Assisted Dying continues to grow. On the 25th of June a public forum was held by the Clem Jones Trust and Dying with Dignity QLD which was well attended.

Soon after a passionate group of Queenslanders, united under the name Voices for Change Voluntary Assisted Dying, launched a Parliamentary E-Petition on End of life choices and voluntary assisted dying. The minister must respond to a petition within 30 days.The goal is to collect 10,000 signatures. Please note that you must be a Queensland resident to be able to sign the petition, which lives here.

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Last but not least, we would like to say a big THANK YOU everyone who supported our End of Financial Year appeal which came to $28,400! These funds will be put to good use. Behind the scenes, a lot of work has been done on several projects. We are close to publishing a new e-book - watch this space. 

We need your support to continue our work. There are two ways to help:

1. Consider a monthly donation. Our opponents are fully resourced and staffed. We cannot hope to match them by volunteers alone. 

Sign Up
2. Encourage one new person to join our campaign. Then ask them to do the same.

Donate Now

 

The law only changed in Victoria because many thousands of people stepped forward. But compassionate end of life choices shouldn’t stop at the Victorian border. We need you now more than ever.

Thank you for your support!

Kiki Paul
CEO

 


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Go Gentle Australia is a registered charity. All donations over $2 are tax deductible.


Restoring Territory Rights (Assisted Suicide Legislation) Bill 2015

In just a few weeks the Senate will debate a bill to restore the rights of the Northern Territory and the ACT to make their own laws on assisted dying.

Starting 14 August 2018, the Restoring Territory Rights (Assisted Suicide Legislation) Bill 2015 will be debated in the Senate.

If passed, this bill will allow the parliaments of the ACT and the NT to consider legislation for Voluntary Assisted Dying, a right they currently do not have. As you may be aware, the NT was the first area in Australia to implement legislation in 1997, which was subsequently revoked by the Commonwealth.

 

We NEED your support! Please let ALL the Federal Senators in your State know that you would like them to support this legislation.

We want Senators to know that

  • Their voters feel strongly about voluntary assisted dying laws;
  • They feel just as strongly that Territory citizens should have the democratic right to decide these laws and not be second class citizens in their own country; 
  • They should be able to make their own decisions about health care at the end of life. 
  • We want them to support the Bill restoring Territories Rights.

It's easy to do: All you need is your address to look up your Senators, write your message and press SEND. It will only take a minute.

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Please share this campaign with your friends and networks and ask them to take action. Together we can right this wrong and help write these laws.

Thank you for your support!


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