NDY UK Relieved By High Court Ruling in Assisted Suicide Case

"death with dignity", aid in dying, assisted suicide, court decisions, Not Dead Yet UK, Our News & Commentary Blog, United Kingdom, , ,

In a case brought in the U.K. by Noel Conway, a man with motor neuron disease, the High Court ruled against overturning legal protections against assisted suicide. Not Dead Yet U.K., which made a submission in the case, issued the following press release when the ruling came out.

PRESS RELEASE: Disabled campaigners pleased that High Court rejects legal challenge to suicide law

by NotDeadYetUK

PRESS RELEASE – FOR IMMEDIATE RELEASE

Disabled campaigners pleased that High Court rejects legal challenge to suicide law

Disabled campaigners from Not Dead Yet UK are relieved that the High Court has ruled against removing protections afforded disabled and terminally ill people by the current law prohibiting assisted suicide.

Not Dead Yet UK interviewed in the case and was be represented in court on a pro-bono basis by barrister Catherine Casserley of Cloisters chambers together with Chris Fry and Millie Broadbent.

This issue was last considered by Parliament in September 2015 when Rob Marris MP’s assisted suicide Bill was decisively defeated by 330 to 118 votes in the House of Commons. Mr Conway and Dignity in Dying (formerly the Voluntary Euthanasia Society) were attempting to override Parliament’s decision by seeking a change in the law through the courts.

Not Dead Yet UK notes that not one organisation run by or for disabled and terminally ill people supports the legalisation of assisted suicide. The medical profession, including the BMA, Royal College of GPs and Association for Palliative Medicine are also against changing the law, believing it would destroy trust in relationships between patients and those providing their medical care.

Disability campaigner and spokesperson for Not Dead Yet UK, Juliet Marow, said:

“We welcome the decision by the High Court to reject this attempt to treat terminally ill and disabled people differently by removing vital legal protections. We are looking forward to the national conversation now focussing on the real issue here, which is a lack of adequate social care being provided to people with disabilities. Similarly we need a proper discussion on ensuring adequate palliative care is provided for the terminally ill.”

Speaking for Not Dead Yet UK, co-founder Phil Friend, said:

“A change in the law is a terrifying prospect to the vast majority of disabled and terminally ill people who work hard towards achieving equality for all. Until we have reached that objective assisted suicide will remain a dangerous and prejudiced option, likely to increase suffering and distress”.

Disability campaigner Baroness Campbell of Surbiton, one of the founders of Not Dead Yet UK, said:

“We have successfully seen off attempts to change the law on assisted suicide in Parliament. The law must not be weakened via the back door.”

Liz Carr, star of BBC1 drama ‘Silent Witness’ said:

“Disabled and terminally ill people want support to live – not to die. As a long standing supporter of Not Dead Yet UK I am keen to take an active role in making that happen”.

ENDS

For media enquiries and interviews: Please contact Not Dead Yet UK spokesperson:  Juliet Marlow – 01420 477646  / emailnotdeadyet@gmail.com

Feel free to use any images from our Flickr account for articles – these are available in high res here: https://www.flickr.com/photos/136198439@N08

About Not Dead Yet UK:

Not Dead Yet UK is a campaigning network of disabled people founded in 2006 to oppose attempts to legalise assisted suicide for disabled and terminally ill people. Not Dead Yet UK promotes equality for disabled people in a secular context; it is not faith centred or allied to any organised religion. Its supporters come from all sections of the community. Its guiding principles are to value the lives of terminally ill and disabled people and oppose assisted suicide.

NDY Submits Public Comment on Proposal on Living Organ Donation By “Persons With Certain Fatal Diseases”

Lisa Blumberg, organ donation, Organ Procurement and Transplantation Network, organ transplants, Our News & Commentary Blog,

This is a complicated subject. It impacts people with disabilities in multiple ways, both as organ donors and recipients. But the tone and recommendations of the proposal by the Ethics Committee of the Organ Procurement and Transplantation Network needed a response. Some excerpts follow.

The organ transplant program saves lives, including some of our organization’s grassroots advocates. Its goals are of unquestionable significance. In order to function effectively though, it needs to have strong public trust and support. The safety of potential donors should be of utmost concern. All lives of living donors must be equally valued. The OPTN must never pursue any policies that expose some donors to more risk than other donors. . .

We agree that there are some underlying health conditions that would not preclude a willing person from being a living donor. Decisions must be made on a case-by-case basis with the preservation of the person’s normal health as a paramount value. We are therefore disturbed and disappointed by the tone and tenor of the proposal as well as the recommendations that would create a two-tiered system of assessment, reporting and scrutiny.

The Committee’s focus as it seeks to expand the donor pool is not on donor protection but on transplant hospital protection. Although the details of implementation will be left to other committees, the thrust of the proposal is on reducing scrutiny for certain donor deaths. The Committee feels that in some cases, harm to donor can be traded off against other factors. The Committee gets to where it wants to be by conflating conditions which can be chronic and disabling with fatal conditions, and then blurring everything into terminal. This brings to mind what James McGaughey, former executive director of Connecticut’s Office of Protection and Advocacy, has written in a somewhat different context, “physicians…did not understand the prospects of people with disabilities to live good… lives…and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability…people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers…respond to them. ”. . .

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) Given the recent studies that many people who request assisted suicide are motivated by feelings of being a burden and other existential issues, the Committee seems to have joined those who see no reason to ensure that such issues are addressed by adequate home care, palliative care, counseling, peer contact and other supports. . . .

Along these same lines, the Committee references feelings of uselessness and insecurity as motivations for the subclass of living donors. (pg. 8) It lists as psychological benefits to the donor improved self-esteem and enhanced meaning in life. (pg. 12) . . .

All this has everything to do with medical/societal prejudices towards disability. Several of the conditions discussed in the proposal are deceptively depicted as fatal. They should more accurately be seen as chronic conditions which people must manage effectively and which are accompanied by some level of disability. People can live for decades with multiple sclerosis, cystic fibrosis (which is present from birth) or COPD and, indeed, remissions are possible with multiple sclerosis. Even with advanced neuromuscular conditions like ALS, the course of the disease and life expectancy are quite variable. Indeed, Duke University’s ALS Clinic is studying cases in which symptoms have partially reversed. . . .

However, good values can be perverted by bias or ignorance of the social context. The Committee is applying these values without any understanding of the disability medical experience  – an experience that includes struggling for access to unbiased health care, being defined solely by one’s disability and fighting against “better dead than disabled” attitudes, an experience that wears on an individual.

It should be no wonder that some people diagnosed with ALS, who are too often given excessively grim prognoses and too rarely exposed to people who lead successful and fulfilling lives with respiratory support, feel that they cannot adapt. Yet the main difference between them and people with lifelong neuromuscular disabilities who have advanced to the same level of support needs is that they had less time to adjust and prepare.

Fortunately, OPTN’s Living Donor Committee seems to recognize that the proposal raises valid concerns. Our recommendation is that they go back and start over. To read the full NDY comment, go here. To read the full OPTN proposal and all posted public comments, go here.

Thank you to Lisa Blumberg, JD for her invaluable assistance in the preparation of NDY’s public comment.

NDY Joins National Alliance to Support Proposed Federal Resolution Opposing Legalization of Assisted Suicide

"death with dignity", ADAPT, aid in dying, assisted suicide, dredf, National Alliance Against Legalizing Assisted Suicide, national council on independent living, Our News & Commentary Blog, Patients Rights Action Fund, , ,

[Editor’s note: Today, NDY’s Anita Cameron is among the speaker’s at a press conference announcing the introduction of a bipartisan Sense of Congress Resolution detailing the dangers of a public policy of assisted suicide. NDY’s disability community allies, including ADAPT, DREDF and NCIL, support this Resolution. The National Alliance press release is below.]

For Immediate Release: September 27th, 2017

Contact: Kate Bryan: kbryan@CRCPublicRelations.com or Matille Thebolt mthebolt@CRCPublicRelations.com, 703-683-5004

Patients Rights Action Fund Along With The National Alliance Against Legalizing Assisted Suicide Praise Introduction of Federal Legislation Opposing Legalization of Assisted Suicide

“Many do not realize that people battling terminal illness, people with disabilities and others are inadvertently targeted by the legalization of assisted suicide…This bill takes a big step toward protecting me and so many others from a death-too-soon.”

  • J. Hanson, terminal brain cancer patient and president of Patients Rights Action Fund

Washington, D.C. – Today Patients Rights Action Fund (PRAF), together with a broad-based alliance including Physicians for Compassionate Care, National Council on Independent Living, ADAPT, Not Dead Yet, the Disability Rights Education and Defense Fund and more, AllianceAgainstAssistedSuicide.org, praised United States Congressmen Brad Wenstrup (R-OH), Luis Correa (D-CA), and a group of bipartisan cosponsors for introducing Sense of Congress legislation who reject assisted suicide as public policy.

The resolution details a multitude of reasons why it is a grave mistake to legalize assisted suicide. Ultimately, assisted suicide puts everyone, especially the most vulnerable, at risk for a death-too-soon and undermines the entire purpose of the health care system.

J.J. Hanson, terminal brain cancer patient and president of Patients Rights Action Fund said, “Many do not realize that people battling terminal illness, people with disabilities and others are inadvertently targeted by the legalization of assisted suicide. I am grateful to Congressmen Correa, Vargas, Wenstrup and all of the other cosponsors for introducing a Sense of Congress resolution. This bill brings attention to this important issue and takes a big step toward protecting me and so many others from a death-too-soon.”

This Alliance has brought many people together from across the political and social spectrum including medical professionals, groups that advocate for persons with disabilities, people who experience depression, and the elderly, as well as advocates for people with terminal illness, and others.

Statements from Coalition Partners on Federal Legislation:

Diane Coleman, President/CEO of Not Dead Yet: “As a national, secular, social justice organization, Not Dead Yet strongly supports this bipartisan effort to speak truth to the many myths about legalized assisted suicide. As Americans with disabilities, we are on the front lines of the nation’s health care system that often devalues old, ill, and disabled people. So we are grateful for this Sense of Congress that explains the dangers of mistake, coercion, and abuse under a public policy of assisted suicide.”

Disability Rights Education & Defense Fund (DREDF): “Where assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or even proposed that can prevent this outcome, which can never be undone. The so-called safeguards are very weak, and the lack of oversight hides these dangers from public view. Moreover, assisted suicide laws are a prescription for elder abuse and abuse of people with disabilities. Supporters of assisted suicide say such laws won’t affect disabled people—but they will, whether or not they realize it. But there is a legal alternative: anyone dying in discomfort may legally receive palliative sedation. Under these circumstances, assisted suicide is not real choice, but a phony form of freedom.“

ADAPT: “Disabled people and seniors who need assistance with everyday tasks like dressing and bathing want the choice to get those services at home and to have control over how they’re delivered. We do not want to be forced into a nursing facility, nor forced to live in poverty to qualify. Unfortunately, that choice is not a reality for most of us. In states that have legalized assisted suicide, Oregon data shows, over a third of those who request assistance to die do so because of “feelings of being a burden” and over 90% cite “loss of autonomy” as a factor. If the only alternative to death is poverty and segregation in nursing facilities, assisted suicide is not a “choice.” Society is failing to ensure access to consumer controlled long-term services. The last thing we need in this time of draconian budget cuts in Medicaid is the legalization of assisted suicide laws, because the untimely deaths of disabled Americans can easily be seen as a cost saving answer.”

Kelly Buckland of National Council on Independent Living: “Our society places a high value on physical appearance and ability, and stigmatizes significant disability. It’s no surprise that those of us who grew up able-bodied and then became disabled might initially see disability as a huge loss of one’s former dreams and physical abilities. When someone is first hit with this, they may feel they’d be better off dead. As one struggles to get basic needs met, some people feel worn down. If assisted suicide had been legal in the past, even if it were supposedly only for those with “terminal” conditions, I might not be here today. I’m grateful that assisted suicide was not legal back then, and I’m committed to keeping it that way. This is an important reason why the National Council on Independent Living opposes assisted suicide laws. NCIL is a leader in the disability rights movement, our political struggle for equal rights. And, among other things, equal rights include equal suicide prevention.”

William F. Toffler, National Director of Physicians for Compassionate Care Education Fund: “Empowering doctors to assist patients in killing themselves has led to an inevitable erosion of trust in the motives of doctors, health care institutions, and insurers.  This has been detrimental to patients, degraded the quality of medical care, and compromised the integrity of medical profession wherever assisted suicide has been legalized. The solution to suffering is not to end the life of the sufferer; rather society’s focus at the end of life should be to alleviate suffering by improving access to hospice and palliative care whenever it is needed.”

Joseph E. Marine, M.D.: “As a physician in practice for over 16 years, I appreciate the great trust that patients and the public place in the medical profession and in American health care institutions. It is one of the reasons that many health care professionals have been working in state capitals across the country to oppose legislation which would legalize assisted suicide. I applaud the efforts of Congressmen Wenstrup, Correa, Abraham, Harris, Vargas and the other cosponsors to increase awareness of the dangers of this practice. Their bipartisan Sense of Congress Resolution clearly states many of the risks and lack of enforceable safeguards in assisted suicide legislation, including lack of witnesses, absence of impartial oversight and routine audits, falsification of death certificates, inadequate psychiatric screening, and poor regulation of the dangerous controlled substances prescribed for purpose of suicide. Assisted suicide laws represent a danger to the integrity of the medical profession and the trust that the public places in health care institutions. I hope that this important House Resolution will attract many co-sponsors and enjoy swift passage through the Congress.”

Laws legalizing assisted suicide have been passed in five states and the District of Columbia. In Montana, because of a court ruling, if doctors are prosecuted, they can use the patient’s request as a potentially viable defense in court. Twenty-three other states have rejected bills attempting to legalize assisted suicide since the beginning of 2017.

***

The mission of the Patients Rights Action Fund (PRAF) is to protect the rights of patients, people with disabilities, and others inadvertently targeted by legalizing assisted suicide. PRAF is the national coordinated movement to promote measures that protect patients’ civil rights, to weaken the breadth and effectiveness of pro-assisted suicide laws and rulings, to work toward repeal of the same, and to oppose efforts to make suicide a legal medical treatment option.

The National Alliance Against Assisted Suicide shares this mission in general and collectively supports this specific legislation and no other at this time.

National ADAPT Saves Our Lives and Liberty AGAIN!

ADAPT, HHS, Medicaid, Our News & Commentary Blog, ,

Deja Vu. The last time Congress proposed to decimate Medicaid and insurance protections, National ADAPT came to the rescue. We linked to some of the impressive coverage in this blog.

Now they’ve done it again, saved the lives and liberty of millions – again! One tweet said, “In 2017, the cavalry doesn’t ride on horses. It rides on wheelchairs.”

Here are a few links to coverage of yesterday’s efforts.

Hundreds Protest GOP Health Bill Outside Hearing

Chaos erupted at a Senate hearing on the GOP healthcare bill as protesters were dragged out and arrested

Nearly 200 Protesters Arrested Demonstrating Against GOP Health Care Bill

Trumpcare Is Dead. Long Live the Trumpcare Opposition.

Today, ADAPT is at the U.S. Department of Health and Human Services, protesting the torture of people with disabilities at the infamous Judge Rotenberg Center in Massachusetts, and demanding that HHS make our Supreme Court affirmed civil right to in-home long term care services more than words on a page, but a reality of liberty and justice for all.

For more, go to National ADAPT and #ADAPTandRESIST.

DREDF Statement on Hollywood Hills Tragedy: In Emergency Planning, Disabled People Are Too Often Left Behind

dredf, emergency management, Our News & Commentary Blog, ,

As the southern half of the United States begins repairing the damage caused by Hurricane Irma, news reports surfaced that residents of a Hollywood Hills assisted living facility called The Rehabilitation Center were inside the center without air conditioning. Eight people died even though there was a hospital across the street, just mere yards from the nursing home.

“Most of the patients have been treated for respiratory distress, dehydration and heat-related issues,” Dr. Randy Katz, the medical director of Memorial Regional’s emergency department, said at a press conference. At this time, the exact cause of death of the six individuals are not yet known.

What do we know?

  • All eight deaths are under “criminal investigation.”
  • The owner of Hollywood nursing home where the individuals died has a history of fraud charges.
  • The manager of the facility was accused in 2004 of federal and state health care fraud, according to the Department of Justice. He and three others settled the case.
  • The Hollywoods Hills Rehab facility is directly across the street from Memorial Regional Hospital. 115 people were transferred to the hospital. Not all of their conditions were known but a number of the evacuated patients were reportedly in respiratory distress.
  • Three people died while still at the nursing home. Five others were in such bad shape that they died even after being moved across the street to Memorial hospital.

As of September 13, at least 15 people have died in Florida including the residents of Hollywood Hills in Irma-related circumstances, many of them after the storm had passed. Elsewhere, Irma was responsible for four deaths in South Carolina and two in Georgia. At least 37 individuals died because of the storm in the Caribbean.

And yet, to paraphrase the New York Times, three days after Hurricane Irma howled through South Florida, eight of the residents of Hollywood Hills were dead, not because of heavy winds, or the result of a flood, but because they lacked air–conditioning.

The Disability Rights Education and Defense Fund mourns the deaths of everyone who has suffered and died because of Hurricane’s Harvey and Irma, and this sorrow is deepened by any instance where negligence was clearly a factor.

Following Hurricane Katrina in 2005—where we know at least 215 corpses of senior citizens, hospital patients, and disabled individuals were found in nursing homes and hospitals throughout New Orleans—the disproportionate impact of disasters on people with disabilities was, for a moment, big news.

Have we not learned anything in 12 years?

If officials knew that the generators would not power the air conditioners, why weren’t the residents of Hollywood Hills moved to the hospital sooner? The possibility that officials may not have known the limits or capacity of back–up power sources is even more disturbing. Either possibility suggests neglect. Both situations could have almost certainly been planned for and prevented.

Individuals with physical disabilities are at increased risk if mobility assistance is not provided, or planned for, during disasters. Individuals with cognitive impairments may struggle with public safety instructions when disaster occurs. People who are blind, Deaf, etc. may have difficulty communicating during the emergency – especially when sign language interpretation is lacking or inadequate. All of these factors persist and they compound and increase the degree of risk in disaster situations for people with disabilities.

Despite the necessary work of groups like Portlight Inclusive Disaster Strategies, and the Trach Mommas of Louisiana who remain on the front lines of disaster relief, evidence suggests that the continued lack of disability-related training provided to and offered by emergency planners and disaster relief personnel remains a disturbing, ever-pressing concern.

Hurricane Irma, the most powerful storm ever recorded in the Atlantic, ranked at the maximum Category 5. And experts predict we haven’t seen the last of it. Forecasts suggest that the 2017 Atlantic hurricane season will be “above–normal,” with 14 to 19 named storms occuring before peak season. For now, Hurricane Jose has spared the Caribbean, but this could change as something as simple and unpredictable as a change in direction.

Warmer temperatures, which exacerbate both the incidence and severity of forest fires, deeper and more dangerous floodwaters, and hurricanes like Irma ratcheting up unprecidented wind speeds of 185MPH, have competed for headlines at the same time policymakers debate budget cuts making disability a political issue outside of traditional access and civil rights concerns. Mother Nature may not discriminate but when it comes to emergency planning, public policy certainly does. This is, by any objective measure—you guessed it—a recipe for disaster.

Disability rights organizations must remain diligent in pressing local, state, and federal authorities to include, and provide for, the needs of disabled people in disaster planning and implementation. As the tragedy of Hollywood Hills illustrates, when the needs of disabled people are ignored, or worse yet – blatantly denied, everyone loses. These concerns are even more pressing when one considers that the Trump administration is seeking to strip nursing home residents and their families of the right to take facilities to court over alleged abuse, neglect or sexual assault.

Policymakers and elected officials should be learning the lessons that disasters like Hurricanes Harvey and Irma provide. Let’s make sure that in addition to the usual lip service we hear from decision-makers in the aftermath of disaster-related tragedies, that the policies they enact, enforce and fund center the needs of disabled constituents – so that we do not get left behind yet again.

[The above Statement was issued by DREDF here.]