Not Dead Yet Submits Written Comments to IOM Transforming End-of-Life Care Committee

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As folks who read this blog already know, the Institute of Medicine’s Transforming End-of-Life Care Committee sets aside a portion of its meeting agenda to receive public comments.  At the Committee’s second public meeting, held at Stanford on May 29, DREDF’s Marilyn Golden attended to provide public comments.

Not Dead Yet previously submitted written input concerning the composition of the Committee, particularly the lack of disability representation.  We didn’t receive a response to that submission, nor did the composition of the Committee change.

Since I was not able to attend in person, the Thursday before the second meeting, I wrote a letter requesting the opportunity to comment by telephone or Skype.  That was admittedly short notice for such a request, but I hoped I’d get lucky and prepared comments anyway, scrunching them into the three minutes provided for each speaker.

My hoped for accommodation didn’t work out (yet), but I adapted my planned remarks slightly for written format, added a few references, and submitted them this week.  There’s plenty more to say, but here’s a start.

Public Comment for the Institute of Medicine’s Transforming End-of-Life CareCommittee – By Diane Coleman, President/CEO, Not Dead Yet

Submitted June 4, 2013

My name is Diane Coleman and I’m the President and CEO of Not Dead Yet[i], a national disability rights organization focused on public policy related to many of the issues that this Committee will address.

Last Friday in upstate New York, the Democrat and Chronicle newspaper reported, “An appellate court has ruled that a feeding tube must be inserted for a severely disabled man … whose parents and attending physician did not want the use of the life-sustaining treatment.”[ii]  The New York Office for People with Developmental Disabilities sued on behalf of a 55-year-old man with cerebral palsy who faced increasing problems with aspiration pneumonia.  One of his nurses said that he is “alert, awake and communicative, and that he enjoys social interaction and activities.”  Because the state challenged the hospital and parents in court, and then appealed a negative lower court ruling, the man will live.

On May 24, 2012, National Disability Rights Network, or “NDRN”, the national association of protection and advocacy agencies federally charged to protect the civil rights of people with disabilities, issued a report entitled “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights.”[iii]  After recounting several case stories, the report condemned decisions to withhold medical treatment from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of the basic constitutional rights of individuals with disabilities.

The report stated that reliance on ethics committees and consultations are insufficient protections of a patient’s legal rights and that hospitals and other providers must “establish and implement due process protections….”

I’ve communicated with protection and advocacy attorneys in several states who had to go to court to try to save a disabled person’s life from a decision made by a surrogate or unilaterally by a doctor or hospital.  Against the odds and because of their intervention, lives have been saved in Illinois, Connecticut, Kansas, Montana, Pennsylvania and New York.  That’s just from my limited knowledge.

The recommendations contained in the NDRN Report constitute nothing less than a call to conscience for health care providers who are withholding life-sustaining treatment from people with disabilities who are not otherwise dying. Sometimes this is done at the request of family members or other surrogates, who are often persuaded or even pressured by the health care providers themselves.  Sometimes treatment is withheld based on the unilateral decision of the health care provider under what are often termed “futile care policies.”

A central problem is physicians’ “quality of life” judgments.  Research shows that physicians devalue the quality of life of people with disabilities compared to our own assessments.[iv] Doctors are not immune from the bias against disability that prevails in society overall.

From our perspective, there is an imbalance in end-of-life policy-making because it has ignored the problem of under-treatment of people who, but for the under-treatment, would not die.  In other words, sometimes “end-of-life” really means ending lives.  The first step in addressing this problem is admitting that it exists, and I would urge this Committee not to shy away from a serious examination of this problem despite the discomfort and other challenges that would accompany such an effort.

What the NDRN report emphasizes is that people with disabilities are entitled to constitutional protections when third parties are seeking to withhold life-sustaining treatment.  Anything less is unacceptable.

Like I said, it’s just a start.  To be continued. – Diane Coleman

Attorney Anne Studholme on New Jersey “Dom Time” Show Opposite NY C&C Director David Leven

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On May 14, NDY’s attorney in New Jersey, Anne Studholme, squared off against New York Compassion & Choices Director David Leven on New Jersey’s “Dom Time” show, a news and call-in show hosted and moderated by Dom Giordano.

We first got to know Studholme when she represented NDY, ADAPT, NCIL, AAPD, NSCIA, Center for Self-Determination and Disability Rights New Jersey (the NJ protection and advocacy agency) in filing a friend-of-the-court brief in a major medical futility case.

This year a bill to legalize assisted suicide has been introduced in the New Jersey legislature.  When the Assembly Health and Senior Services Committee held a hearing on the bill on February 7, Studholme testified on NDY’s behalf.  The bill passed that committee, but has still not been addressed by the full Assembly.

When Giordano proposed to devote a segment of his program to the assisted suicide issue, Studholme stepped up again.  The show was posted to YouTube in three segments:

Dom Giordano’s Dom Time Show 031 Seg #1

Dom Giordano’s Dom Time Show 031 Seg #2

Dom Giordano’s Dom Time Show 031 Seg #3/4 Close

In the first portion, Studholme challenged the assumption many people have that pain is the problem addressed by legalizing assisted suicide.  She pointed out that even in the rare cases in which palliative care is insufficient to relieve pain, palliative sedation is an available alternative.

The short sound bite format let the Compassion and Choices speaker make his simplistic point about “shouldn’t everyone have this right?” over and over.  However, the bill does not create a new patient right, since suicide is not illegal in any state.  The actual bill language is to legally immunize physicians and other participants who assist suicide.  It carves out an exception to existing laws regulating doctors and other third parties.

The second segment included the best back-and-forth debate of the three parts.  Giordano, the host, said he agreed that palliative care has come a long way, also noting the potential for pressures due to health care costs.  Leven admitted that pain is not the issue.  Giordano also acknowledged the concern, particularly among disabled people, that the message in assisted suicide is that some life has less worth.  Studholme responded about the high level of elder suicide in Oregon (apart from the assisted suicide law there).  She pointed out that people may fear loss of autonomy, being a burden, and fear being disabled because of how people are treated.  She noted that people who choose assisted suicide tend to be male, educated and well off.  Both guests admitted that the six-month prediction of terminality is not reliable.

In the third and shortest segment, Giordano alluded to the uncertainties of medical information and expressed concern about the risk of a snap decision. Leven replied that there is a two-week process, as though that is a sufficient time to consider such an irreversible decision.  (These days, how many of us can get an appointment with a specialist for a second opinion in two weeks?)  Giordano asked why not allow this?  Leven said that a small number of people use the law, while Studholme tried to point out the problems with carving out an exception to current law for this small group.  Studholme noted that the two witnesses (who attest that the request for assisted suicide is voluntary and not coerced) don’t even need to know the person.  Then the clock ran out on the show.

New Jersey advocates who oppose the assisted suicide measure say that the legislative process could well extend into the fall and winter.  If so, the discussion on “Dom Time” was just the beginning.  Regardless, the disability community is in it for the long haul. – Diane Coleman

 

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

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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

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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

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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”