DREDF’s Marilyn Golden Provides High Powered Public Comments to IOM Transforming End-of-Life Care Committee

The second of six expected meetings of the Institute of Medicine Transforming End-of-Life Care Committee was held on May 29 at the Stanford University School of Medicine in Stanford, California.  The topics addressed by the Committee include health care and long term services and supports issues facing people with chronic conditions and disabilities who may have years or, as one presenter said today, “decades” of life remaining.

The meetings are webcast, and an hour is set aside for public comment by people who register in advance and attend the meeting in person.  Last week, Not Dead Yet submitted a written request for the opportunity to provide public comment during Committee meetings via teleconference or Skype.  We hope that such an opportunity will be available by the next meeting, scheduled in July.

Meanwhile, the Committee accepts written comments.  NDY previously submitted comments on the membership composition of the Committee, and plans to submit written comments on a variety of substantive issues in the near future.  We’ll keep you posted on those efforts.

Fortunately for the disability community, Marilyn Golden, Senior Policy Analyst at the Disability Rights Education and Defense Fund (DREDF), attended the second meeting and provided the following powerful public comments on behalf of the disability community:

Public Comment by Marilyn Golden, Policy Analyst, Disability Rights Education and Defense Fund (DREDF) Before the Institute of Medicine Transforming End-of-Life Care Committee 

May 29, 2013

I’m Marilyn Golden, Senior Policy Analyst at the Disability Rights Education and Defense Fund. We’re a leading national law and policy center on disability civil rights.

We have many concerns – –the common thread is the many stories we hear from people with disabilities, again and again, illustrating that our lives are seen as less worth living than others——so much less that health care providers too often think death is the correct course.  They press this viewpoint on us, our families and sometimes even overrule us when we disagree.

Let me tell you a true story about a young disabled woman who worked for the Center for Disability Rights in upstate New York. At the age of 19, she’d had a car accident . . . . While lying in a hospital bed on a ventilator . . . doctors would ask her mother if she was ready to “pull the plug”.  “Why would I want to do that?” she would ask. The doctors answered, “What kind of life will she have—she won’t be able to dance, walk, work, have a social life, or be independent.” Over and over.

Terrie had a rough time medically, but eventually, she was spending hours a day off the ventilator and the doctors were still asking if she wanted to live with this condition. If she chose no, they would keep her off the ventilator and she would die, with morphine for comfort.

When she returned a year later, with a power wheelchair and no ventilator, the doctors’ jaws dropped to the floor and their eyes began to fill with tears. They always meant well and thought they had been doing the right thing.

Today Terrie is still working for disability rights and has a darling young daughter. We’re so glad she had the wisdom to go against her doctors. 

A related problem we see in the end-of-life field is a deep misunderstanding that the only problem to be addressed is over-treatment at the end-of-life. A balanced approach would address something rarely acknowledged: that there is another problem, under-treatment at the end-of-life, and pressure against life saving treatment, resulting from health care disparities, discrimination, including discrimination against people with disabilities, and economic considerations.  

These issues come up in many ways:

  • discriminatory “futile care” policies allowing healthcare providers to use quality of life judgments to overrule our decisions to receive treatment;
  • discrimination in organ procurement and transplant practices; and          
  • discriminatory rushing to judgment and denial of life sustaining treatment of newly injured persons based on hasty and unsupportable diagnoses of “persistent vegetative state” (PVS).  

Lastly, on another point, we and many disability organizations oppose the legalization of assisted suicide, which is just too dangerous.  It’s a prescription for elder abuse, and when legal,  it’s the cheapest treatment available, a frightening thing in our profit-driven healthcare system. Terminal diagnoses are too often wrong, the so-called “death with dignity” safeguards are hollow. Because the dangers so outweigh any benefit, the legalization of assisted suicide should be opposed.

Sincere thanks to Marilyn and DREDF for delivering this important message to the Committee.  Let’s hope the members and staff listen carefully. – Diane Coleman

 

Vermont: Anti-Assisted Suicide Groups Announce New Resources/Governor to Sign Assisted Suicide Bill Into Law Monday, May 20

From True Dignity Vermont:

Watchdog Group Launches Hotline

True Dignity Vermont   has launched an abuse hotline in response to the recently-passed bill that will allow Vermont physicians to prescribe lethal drugs  to terminally ill patients.

Individuals  who  suspect patients of being unduly influenced to request or ingest lethal drugs, or of being given such drugs against their will, can report such concerns by calling 1-855-787-5455 (1-855-STP-KILL) or emailing True Dignity Vermont at ReportAbuse@TrueDignityVt.org.

A citizen-led, grassroots initiative, True Dignity Vermont worked alongside other organizations to vigorously oppose  the legalization of prescription death in Vermont .  That effort  failed with the passage of an amended bill on May 13, but leaders say they will press forward to work to protect vulnerable Vermonters who will be at risk as a result of what they call “dangerous, poorly conceived legislation.”

“We believe our role must now expand to that of watchdog, as well as providing education and a resource clearinghouse for Vermonters who want to be sure they will be protected from coercion to end their lives,” according to True Dignity spokesperson Carolyn McMurray of Bennington.

“The bill that Governor Shumlin is signing into law is fraught with problems that will leave vulnerable patients open to abuse, and will damage patient-doctor trust,” she said,  adding that True Dignity Vermont plans to develop a registry of “safe” doctors, nursing homes and other health care providers who will not participate in assisted suicide.  “Vermonters need to be reassured that the end of life need not be frightening and painful, and that they will be supported properly with the very best palliative care and pain control.   Enabling suicide is not a compassionate response to suffering.”

More information about True Dignity Vermont is available at http://truedignityvt.org/

***

Vermont Alliance for Ethical Healthcare

Monday, May 20, 2013

The Vermont Alliance for Ethical Healthcare announced today that the organization will expand their efforts to include offering help to those who are feeling coerced or pressured into requesting lethal drugs underVermont’s new physician-assisted suicide law.

Governor Peter Shumlin is scheduled to sign S.77 on Monday, May 20, 2013. Once signed, the law is effective immediately.

“This poorly-crafted bill has even fewer safeguards than the Oregon law,” stated Edward Mahoney, President of VAEH. “We fear that vulnerable Vermonters will feel pressured or coerced into making a request for a lethal dose of medication. Several problematic Oregon cases have been well-publicized, and those interested can find more information on our web site.” (www.vaeh.org)

For the past decade, VAEH has promoted the provision of excellent health care at the end of life, including the best of hospice and palliative medicine; and the organization has consistently warned of the dangers of legalized physician-assisted suicide. With the passage and enactment of S.77 VAEH saw the need to expand their efforts.

“When patients are feeling coerced or pressured into requesting lethal drugs to end their life, they need a place to turn for help.” added Mahoney. “With our broad network of concerned health care providers throughout Vermont, VAEH will seek to address the concerns of patients and try to help alleviate the pressures that are causing them to feel they have no other choice.”

Given that the Department of Disabilities, Aging and Independent Living has a history of being unable to respond to complaints of abuse in a timely manner, as well as the fact that the Governor, Attorney General and the Commissioner of Health all strongly advocated for physician-assisted suicide despite the known risks it poses, Mahoney thinks it is important for Vermonters to have a place to turn for help. “We now have state-sanctioned suicide in Vermont. If the State won’t protect Vermonters, we will try.”

Canada: Toujours Vivant-Not Dead Yet to Highlight Between Euthanasia and Discrimination at May 18 Anti-Euthanasia March in Quebec

From the press release:

MONTREAL, May 16, 2013 /CNW Telbec/ – Toujours Vivant-Not Dead Yet will join Québécers who oppose euthanasia on Saturday, May 18, 2013 at noon on the Plains of Abraham.

TVNDY is a progressive, non-religious project to unite and give voice to the disability opposition to euthanasia, assisted suicide, and other discriminatory end-of-life practices.

According to Hasbrouck, Toujours Vivant-Not Dead Yet will highlight several points

  • People with disabilities are the population most directly affected by assisted suicide and euthanasia.
  • Disability discrimination is a major factor behind the push for such laws, and the causes of suicidal feelings among people with disabilities.
  • Such laws create a double standard, where non-disabled people who express suicidal feelings are given services to prevent a suicide, while people with disabilities with similar feelings are allowed, even helped to kill themselves.
  • Financial and social pressures, including abuse, can drive elders and people with disabilities to suicide.
  • Québecers have rejected capital punishment because of the possibility that even one person might be wrongfully convicted and killed.
  • Lack of access to palliative care and home-based personal care services controlled by the individual can drive people toward suicide.  People with disabilities should not be sacrificed to poor policy choices.
  • People already have the right to refuse treatment, make advance directives and appoint a substitute decision maker.
  • Until people with disabilities enjoy full safety and equality in all facets of community life, no amount of safeguards can prevent misapplication of euthanasia and assisted suicide.

The event is co-sponsored by Vivre dans la dignité, the Rassemblement Québecois contre l’euthanasie and Toujours Vivant-Not Dead Yet.

SOURCE: Toujours Vivant – Not Dead Yet

For further information:Amy E. Hasbrouck (450-921-3057)

Link to Speech to be delivered by Amy E. Hasbrouck, and an excerpt:

Hello, my name is Amy Hasbrouck.  I am the director of Toujours Vivant-Not Dead Yet.  I have been a disability rights advocate for more than 30 years, and I’ve been involved in the disability rights opposition to euthanasia and assisted suicide for 15 years.

Toujours Vivant-Not Dead Yet is an progressive, non-religious group of people with disabilities who oppose euthanasia, assisted suicide, and other discriminatory end-of-life practices.

There are many reasons people with disabilities should be worried about euthanasia.  First, nearly everyone who asks for euthanasia has a disability, meaning a physical, mental or sensory impairment that limits their daily activities.  This is true whether or not the person has a terminal illness.  As such, people with disabilities are the population most directly affected by the current proposal to legalize euthanasia and assisted suicide.

Reports from the state of Oregon where assisted suicide is legal, show that people ask for assisted suicide not because of pain, but for reasons relating to the onset of disability.  They talk about losing control and independence, feeling like a burden, no longer being able to do things they enjoyed, or losing dignity.

These problems aren’t caused by disability, but by discrimination.  It is discrimination that disables a person who has an impairment.  And there are many kinds of discrimination.  It begins with beliefs.

Every one of us with a disability has heard someone say: “I’d rather be dead than be like you.”  Disability is seen as a tragedy, and euthanasia is seen as a gentle way to end a tragic story.  This belief is so common that when someone becomes disabled, she herself may believe her life is a tragedy whose only escape is death.

Read the rest of  the remarks here.

Amy E. Hasbrouck “has been a disability rights activist for more than 30 years.  Ms. Hasbrouck’s activism combines her personal experience with congenital and acquired disability with a cross-oppression analysis gained through involvement in the women’s rights, anti-war, LGBT, and other social justice movements.  She worked in architectural access and the independent living before graduating from Northeastern University School of Law in 1997.  Her subsequent legal work focused on health and mental health law and implementation of the Americans with Disabilities Act.  Ms. Hasbrouck has focused her writing and research skills on abuse of children and adults with disabilities, producing a groundbreaking report on prosecution and sentencing of parents who kill their disabled children in 1997.  This study led to her involvement with Not Dead Yet, the disability rights-based opposition to assisted suicide, euthanasia, and other end-of-life practices that discriminate against people with disabilities which continues to this day.   Ms. Hasbrouck has been a board member of Not Dead Yet in the U.S. since 2000.  She has had several articles and op-eds published in newspapers in Canada and elsewhere.  She is currently Director of Toujours Vivant-Not Dead Yet, a project of the Council of Canadians with Disabilities to expand the reach of CCD’s ending of life ethics committee.  She lives with her husband, dog and two cats in Québec, Canada.  You can reach Amy at amy.hasbrouck@tv-ndy.ca”

 

Guest Blog: “On Trees and Travel and the Value of Life” by Audrey Cole

(Editor's note: I meant to post this article last week, but offline business have kept me away from much that I planned on doing on the blog.  My apologies to Audrey Cole for the delay.  This is not the usual type of essay one sees on this blog - that makes it all the more welcome.)

On Trees and Travel and the Value of Life

Two pieces of writing, appearing on the world wide web on two consecutive days in April, described two disturbingly different views of the respective values, hopes and human obligations of two very fragile Canadian lives!

In the first piece, I read a thoughtful, wise and beautiful story ostensibly about making and carrying out a decision to lop off a significant upper portion of a magnificent white spruce, the age of which is estimated by the person on whose coastal property it sits, to be about 85.
(http://fragileandwild.com/2013/04/11/slow-death-and-the-felling-of-trees/#more-293)

Although the tree might have fallen at any time, that surgical “lopping” will inevitably cause its death albeit much more slowly than would a “fell-swoop”.

It wasn’t the similarity in our ages (mine and that of the tree) that grabbed my attention nor was it the fact that I actually know the tree, have sat under its shade at times and have watched its resident and visiting wild life with fascination.

No, in addition to the ever captivating beauty of the prose, what grabbed my attention in the article was the subtle but courageous way in which the story of the tree was, in effect, a metaphor for the story of the storyteller’s own life and, inevitably to some degree, of all of our lives.

The second piece, which I read the following day, was a story written by a journalist about a woman about to travel from her home in Canada to Europe to her chosen date with death (Killing her softly: Susan Griffith's last days. Lindor Reynolds, Winnipeg Free Press, Posted: 04/12/2013). Below the headline, the description of the story informed us that, “Instead of enduring months of pain and an inexorable decline into helplessness, Susan Griffiths will ease into a peaceful, painless death. Why, she wonders, are Canadians denied that choice?”
(http://www.winnipegfreepress.com/opinion/fyi/Killing-her-softly-202733931.html)

My immediate reaction was, Oh! If only she had read the story of the tree! Surely, then, she could not have asked that question! But probably, she could! Many people do!

It is not my intent to retell either story! Rather, I want only to refer to a few images from each article that glued themselves onto my consciousness – images that, to me, pointed to vastly different understandings of life, its value and its purposes!

From the first article comes the clear message that the tree, although dying and diminished in stature and strength, still stands. It stands to the end, alive, to give, to provide and to serve – as will its steward and author of the article, Catherine Frazee.

In the second article many images are evoked by the reasons given for the decision to seek doctor assisted suicide in Switzerland. Due to family circumstances, I have spent many years involved in the lives of people who have disabilities, some disabilities lifelong, some of later onset. Yet I have difficulty in understanding the messages conveyed by the images in the article, never having met people with disabilities who talk about themselves or see themselves in the way the subject of the article appears to have seen herself. In her own words, for example, Susan Griffiths had “... led a hedonistic life ever since (retirement),” “... travelled to South Africa, Botswana and Australia and returned repeatedly to Europe.” She had read “that you become emaciated” and said, “I didn’t want to think of myself as emaciated. I’m so vain;” and she also told the reporter that she had a “gorgeous wardrobe” that because of her increasing disability, she could not wear. Elaborating on her daughter’s comment that it would be “awful” to watch her mother “endure a slow decline and a lot of suffering,” Susan Griffiths is reported to have agreed that it would be awful, but that “the end result is awful too, so you have to go through this process of considering a list of disgusting things in order to come up with the least disgusting thing."

Two stories, two women! Two vastly different points of view! But a great irony, nevertheless, for the two women have much in common! Both have been diagnosed with not entirely dissimilar, degenerative medical conditions. The rate of degeneration is the primary difference.

The writer of the first article, the eloquent story of the tree and the recognition that “even to be dying is to live still” and thus, still, to be free to serve, Catherine Frazee, has lived with that condition since birth. It is a condition that has progressed steadily to her physical detriment throughout her life. Yet, despite the unrelenting diminishment of her physical capacities, she remains one of the most inspiring examples of selfless service that I have ever encountered (and I have been involved in disability action for almost fifty years).

The subject of the second article, Susan Griffiths, received her diagnosis in late 2011. Now, in mid 2013 with great fanfare, she has travelled to Switzerland, where such action is legal, to indulge her wish to die with medical assistance. Not privately, as I imagine most people who wish to commit suicide would prefer but publicly and, it would appear from the various interviews, perhaps even selfishly.

This is not intended to make judgements about the conditions of either woman. Deterioration happens more quickly in one diagnosis but equally inevitably, in both. But this isn’t even about inevitability. Death is inevitable for all of us. It is about the damage that is done to the images and well being of people who live their day-to-day, often long and productive lives with such conditions, when people who acquire such conditions later in life cannot contemplate that reality and decide they would rather be dead. I continue to be disturbed by the lack of consideration for others in these decisions.

I have never thought of suicide as “disgusting”; tragic, yes, and devastating for loved ones, always, yet, so often, a stark and sad reminder that we do not do enough in our society to help each other in times of distress. I cannot conceive of suicide as the “least disgusting thing” that we might face in day to day life, no matter the extent to which we might need help at some point in our lives – or at all points in our lives – with those fundamental day to day realities of breathing, eating, drinking, bathing and defecating. And, yes, we do need more palliative care and, collectively, we must shoulder the responsibility for ensuring its provision.

But I cannot believe that any of us should expect society to sanction our self indulgent wishes to be professionally assisted to deliberately depart from the life that we have been given. It is essential to our well being that our doctors be the champions of life and to continue to do their utmost to protect it as best they can. I do not believe that the rest of us can be allowed to assume a right to force doctors to destroy life. Audrey Cole May 1, 2013

“Audrey Cole is an activist, educator and lecturer with deep roots in the Community Living movement.Upon joining her local “Community Living”Association after her son Ian was born, she became intrigued by human rights issues She is known for her expertise on guardianship legislation and her work on supported decision making and on genetic discrimination and has written and lectured on these matters nationally and internationally. She is a Past President of the Brockville and District Association for Community Involvement, an Honourary Life Member of
Community Living Ontario and a Distinguished Associate and Honourary Life member of the Canadian Association for Community Living (CACL) She is an Associate of the Institute for Research on Inclusion and Society (IRIS) and currently serves on CACL’s Values and Ethics Task Force. In 1997, she was awarded the Order of Ontario in recognition of her tireless activism on behalf of people with disabilities.”

 

Vermont Assisted Suicide Bill Allows a Third Party to Speak for an Elder or Disabled Person

 

Vermont Assisted Suicide Bill Allows a Third Party to Speak for an Elder or Disabled Person

S. 77, the assisted suicide bill passed by the Vermont State Senate on Wednesday, endangers disabled people, elderly people and ill people.  The Vermont House should reconsider its earlier support of the legislation and work to protect the vulnerable citizens of Vermont.

Like the laws in Oregon and Washington, S.  77 provides no protection from an heir or other interested person misrepresenting an applicant’s wishes.

“Capable” means that a patient has the ability to make and communicate health care decisions to a physician, including communication through persons familiar with the patient’s manner of communication if those persons are available.**[§5281 (a)(2)]

And yet a person “familiar with the patient’s manner of communication” could be an heir or other interested person.  And that person could be pressuring the person to choose assisted suicide.

Washington elder law attorney Margaret Dore details how the bill, like the Oregon and Washington laws it is modeled on, invites fraud and abuse. Because no witness is required at the death, “the opportunity is created for the patient’s heir, or for another person who will benefit financially from the death, to administer the lethal dose to the patient without his consent.”    No matter what happened, charges of homicide would be difficult or impossible to bring in the face of the statute’s ironclad immunity.

Senator Peter Galbraith, whose vote switch got the bill through the Senate, said, “I understand and sympathize with the desire for people to have a say, to have some control, at the end of their lives.”  Unfortunately, neither he nor many other legislators have sympathy for people who are already threatened with loss of control.

Bill Peace writes at the Bad Cripple Blog that while he has much respect for Vermonters’ sense of strong community, “I would speculate Vermonters have embraced a type of individualism that does not permit them to think about vulnerable populations and the risks they can encounter.”

He recounts the story of Vermonter Amanda Baggs, a leading disability rights activist who is autistic.  But when she recently needed the insertion of a feeding tube to save her life, she was barraged by hostile hospital staff with urgings to consider “the alternative” – which could only be interpreted as doing nothing and dying.  Peace also links to his own harrowing story of being encouraged to give up and die during a hospitalization.

This is the discrimination at the heart of assisted suicide legislation.  When disabled people come into contact with medical professionals, they judge our quality of life to be so poor that death may be preferable.  When some members of society consider the possibility of acquiring disabling conditions, they believe that it might be better to “choose” death.  Amy Hasbrouck of Not Dead Yet Canada expressed this perfectly in her recent piece, Suicide Celebration Instead of Suicide Prevention.

Peter Galbraith based his initial opposition to legalized assisted suicide on the problem of involving the state in the practice.  In February, he said on the Senate floor that he wanted to “leave it to the doctor and the patient.”  He said that “opponents were concerned about a state-prescribed process for suicide.  The medical profession is concerned about a profession that is about prolonging life being involved in a process to end life.  The disabled community expressed concern to me that having a state-sponsored process would in some way diminish them in society.  These are sincerely held convictions.”

In my own conversation with Galbraith, I emphasized that any state run program would discriminate against people with disabilities by commending certain disability-related reasons as sufficient for suicide.  As demonstrated out in Oregon, these include losing certain physical abilities, “feeling like a burden”, and “loss of control of bodily functions.”

Vermont doctors, whose organization strongly opposed the legislation, will be made into gatekeepers of death, judging some reasons (e.g., embarrassment over incontinence) as rational reasons for suicide, but (presumably) rejecting others (e.g., being told by Martians to commit suicide) as not rational.  Disabled people’s concern is that these disability related reasons are the products of a complex array of social conditioning, stigma and failings in public policy, and should never be used to justify providing suicide assistance rather than suicide prevention. — John Kelly, Second Thoughts Massachusetts