National Council on Disability Will Consider Proposal to Address Health Care Decisions Policies that Threaten the Lives of People With Disabilities

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The National Council on Disability met on May 6th at the Ed Roberts Campus in San Francisco.  This is a presidentially appointed Council that advises the Administration on disability policy.  The Council always offers opportunities for public comment, and NDY has been asking NCD to help lead efforts to address abuses in health care decisions that end the lives of people with disabilities, such as futility policies and unlawful surrogate decisions to deny life-sustaining care.  NDY’s previous comments to NCD on this subject are here, here (video) and here.

After I provided the following public comment Tuesday evening, one of the Council members, Ari Ne’eman of the Autistic Self Advocacy Network, articulated his concerns about these issues as well.  NCD’s Chair, Jeff Rosen, then directed staff to work with interested Council members to develop a proposal for addressing these concerns that the Council could consider.  This is a very important step, and reason for hope that there is more to come. 

Public Comments to the National Council on Disability

May 6, 2014 

“End the UNEthics Committees”

or “Nothing About Us Without Us!”

I’m speaking on behalf of Not Dead Yet, and requesting NCD’s leadership to help us address civil rights violations that people with disabilities encounter when third parties make decisions without our consent to withhold medical treatment that we need to survive.  These decisions are often made with the involvement and approval of hospital ethics consultants and ethics committees.

In fact, this week, Not Dead Yet is joining the Autistic Self Advocacy Network in a friend of the court brief in a Wisconsin case in which a 13-year-old boy with intellectual disabilities was denied routine care for treatable pneumonia and died when his parents followed the recommendations of Dr. Norman Fost after he provided an ethics consultation, recommendations that, according to the Wisconsin protection and advocacy agency, violated state law.

In 1992, the Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) mandated the establishment of ethics committees.  By the year 2000, over 95 percent of community hospitals had established a clinical ethics committee.

Ethics committees are a prevalent means of giving the illusion of due process in health care decision-making by hospitals and other facilities.  Yet there are virtually no accepted standards for ethics committee composition, procedures or decision-making guidelines.  In some states, these committees have the authority to determine whether life-sustaining treatment can be withdrawn against the will of the person or their surrogate decision maker, often making determinations based on the degree of disability and perceived quality of life.

Only a few states have ethics committee statutes, but they typically require physicians, nurses, social workers and hospital administrators to be members, while community representatives or patient representatives are optional.

Not Dead Yet advocates in Texas have proposed that at least one quarter of ethics committee members not be staff of the hospital, and that ethics committees must include members of both disability and aging advocacy organizations.  While additional procedural protections are needed as well, the principle of “nothing about us without us” provides an excellent first step.

We urge NCD to assist in developing model legislation and policies regarding ethics committees, and to assist us in establishing a dialogue with appropriate federal agencies and associations of state level policy makers to address these issues further.

ADAPT Wins Meeting with Leadership Conference on Civil Rights to Address Disconnect Between Disability Rights and Broader Civil Rights Movement

ADAPT, Our News & Commentary Blog

ADAPT took hundreds of disability rights advocates in Washington, D.C. this week to a surprising advocacy destination today:  the offices of the Leadership Conference on Civil Rights.  ADAPT asked their help to address the “disconnect” between the disability rights community and the broader civil rights movement.  We’re still awaiting the results and next steps, but among the examples of the disconnect given in ADAPT’s press release is legalization of assisted suicide:

“Progressives promote assisted suicide without recognizing a discriminatory, double standard where non-disabled people get suicide prevention and people with disabilities are provided suicide assistance.”

The full release is not yet posted online, but came to ADAPT advocates via email.  It’s public, so I’m sharing it with you below.  ADAPT has long opposed legalization of assisted suicide.  Pew researchers also found that people of color tend to oppose it, so there’s every reason to think that we can find common ground on this.  But it probably came as a surprise to the Leadership Conference to see it brought up today.  Thanks to ADAPT for putting it on their radar!

05/06/2014 PRESS ALERT:

WHO:     ADAPT
WHAT:    ADAPT DEMANDS THAT THE LEADERSHIP CONFERENCE ON CIVIL AND HUMAN RIGHTS FACILITATE A PROCESS FOR THE
INTEGRATION OF DISABILITY ISSUES INTO THE BROADER CIVIL RIGHTS MOVEMENT
WHERE: 1629 K Street NW 10th Floor Washington, DC 20006
WHEN:    Tuesday, May 6, 2014

 

200 DISABILITY RIGHTS ACTIVISTS ARE DEMANDING THAT THE LEADERSHIP CONFERENCE INITIATE A PROCESS TO BRING ADAPT’S LEADERS TOGETHER WITH OTHER CIVIL RIGHTS ORGANIZATIONS TO ADDRESS ISSUES WHERE THESE ORGANIZATIONS HAVE ACTED AT CROSS PURPOSES WITH THE RIGHTS AND NEEDS OF PERSONS WITH DISABILITIES.

 

ADAPT has become increasingly concerned about a growing disconnect between the disability rights movement and the broader civil rights communities.

“People and groups that should be our natural allies have in fact taken positions that undercut the basic civil and human rights of persons with disabilities,” said Bruce Darling.

 

Examples of such disregard for our rights include:

  • Progressive and civil rights organizations strongly promoted changes in federal labor rules that undercut the right of and opportunities for people with disabilities to live in the community;

 

  • Unions have fought against community integration efforts by the disability community in order to preserve union jobs in the institutions, even using fear tactics promoting the idea that integrating people with disabilities into the community is dangerous.

 

  • Progressives promote assisted suicide without recognizing a discriminatory, double standard where non-disabled people get suicide prevention and people with disabilities are provided suicide assistance.

 

  • In New York at the behest of the nurse’s union, Deborah Glick – a prominent LGBT member of the NYS Assembly – opposed and derailed changes to the state’s Nurse Practice Act that would have given people with disabilities needed assistance with health related tasks from attendants in the community.

 

  • In Texas, the disconnect between the disability rights movement and other civil rights movements was emphasized by the recent failure to include disability rights advocates or issues in the civil rights conference organized by the LBJ Library.

 

Accordingly, ADAPT demands that the Leadership Conference work with us to initiate a process to bring ADAPT’s leaders together with other civil rights organizations to find a way to address this critical problem.

 

This was the third of four days of directed action by ADAPT in Washington DC.

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Disability Rights Leadership Institute on Bioethics: Advancing the Disability Rights Perspective on Bioethics Issues

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Months of work came to fruition on April 25 – 26, 2014 at the Crystal City Marriott in Arlington, VA.  Conference planning experts told us to expect a 10% no show rate, but out of our final count of 68 who signed up to attend (we had initially expected about 50), only 3 missed it.  That’s a clue about the amazing level of participation we had for the first ever Disability Rights Leadership Institute on Bioethics (DRLIB).

Before talking about the program, I first want to thank our sponsors:  National Disability Leadership Alliance, Autistic Self Advocacy Network, Disability Rights Education and Defense Fund, Euthanasia Prevention Coalition, National Council on Independent Living and, of course, Not Dead Yet.

All of DRLIB’s sponsors and participants also want to thank our generous supporters:  Aging With Dignity, Association of Programs for Rural Independent Living, Yoshiko Dart, Gail Ludwig and Clarissa Kripke, Michigan Disability Rights Coalition, Montanans Against Assisted Suicide, Patients’ Rights Action Fund and United Spinal.

I also want to thank the Center for Disability Rights for designing and printing our conference programs and sending their extraordinary executive administrative assistant Linda Taylor to manage our check in desk, and TRIPIL’s Kathleen Kleinmann, DREDF’s Rhonda Neuhaus and disability bioethicist Joe Stramondo for volunteering there too.

Friday was the focus for NDY and DREDF, addressing issues around assisted suicide and withholding and withdrawal of life-sustaining treatment.  I was the first presenter, on the latter subject, starting out with a dilemma:

I really feel that we need a lively opening and those of you who know me realize, as I do, that I’m a bit too wonky for that.  Throughout the Institute I’ll be turning to so many of you for help, so I want to start off with a brilliant piece by Norm Kunc.

Norm was there, and his “Euthanasia Blues” provided a rollicking start.

My wonky part was described this way in the program:  Medical discrimination against people with disabilities, sometimes resulting in death through the nonconsensual withholding of life sustaining treatment, has been a longstanding and increasing concern among disability advocates, especially under the threat of healthcare budget cuts and rationing. Over the last two decades, health care decisions laws have been amended to increase the likelihood that people will sign advance directives and POLST forms refusing life sustaining treatment, and that surrogate decision makers will refuse treatment on behalf of relatives without advance directives. There are also concerns about organ transplant professionals denying transplant eligibility based on disability, as well as pushing for withdrawal of life support from disabled people in order to harvest their organs for others. Most states have “futile care” laws and policies allowing physicians to withhold life-sustaining treatment over the expressed objection of the individual or their surrogate. Evidence of passive euthanasia in violation of the civil rights of people with disabilities, such as that described in the National Disability Rights Network report, “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights” (May 2012), will be explored, as well as potential avenues for addressing these violations.

I showed a video of a bad POLST conversation between a doctor and patient.  The DRLIB audience readily discerned the doctor’s bias against life-sustaining treatment, but sadly he’s getting an award from the California POLST group for the quality of his work.  But my favorite part was passing on a community organizing idea from ADAPT’s Bob Kafka:  We should all try to get people with disabilities from our local advocacy groups appointed to hospital ethics committees.  It’s a “Nothing About Us Without Us” campaign, aka End the UNEthics Committees!

DREDF’s Marilyn Golden came next, talking about the disability rights opposition to legalization of assisted suicide.  She noted the disability community history with assisted suicide and the inherent disability discrimination found in assisted suicide proposals. Next, she discussed many public policy concerns with the legalization of assisted suicide, including how assisted suicide laws are a deadly mix with the broken, profit-driven US health care system; the significant risks of abuse; the inadequacy of safeguards; the lack of oversight; and how legal alternatives exist for people who are dying in pain.  Marilyn was also very astute in exploring the political landscape for assisted suicide laws in the US today, the importance of working in coalitions to defeat assisted suicide proposals, and the diverse nature of those coalitions.

What we learned during a later discussion is that she changed at least one attendee’s mind who now opposes legalization of assisted suicide.

Marilyn’s remarks were actually delivered in two parts, broken up by a delightful lunch and a wonderful keynote by Liz Carr, a disabled comedian, actor in a BBC drama series, and NDY activist from the United Kingdom.

Liz described her ‘hobby’ as “working with Not Dead Yet UK to fight against the further legalisation of assisted suicide.”  It would be impossible to capture how entertaining Liz was in the text of a blog, but just to give you an idea from her remarks:

I’m currently writing ‘Assisted Suicide – The Musical’.  This show is my response to the mainstream media onslaught of semi naked disabled people who are having their teeth brushed, their hair washed whilst usually hanging pitifully in a hoist as classical music plays in the background and a sombre voiced narrator tells the audience how awful their life is.  What’s the new term for this?  Expiration porn? Objectifying us for the titillation of the observer?   Making the viewer feel better about their life?  Perpetuating the already engrained view that people like that, people like me, people like us, would be better off dead.  I wrote Assisted Suicide The Musical in the belief that a witty showtune will do as much to counter that view as any op-ed. 

When we get the Power Points posted on the DRLIB website, you’ll be able to see some very funny slides with the dancing nurses and disabled person dangling awkwardly in a “hoist.”  But Liz had a lot more to discuss from her Euthanasia Road Trip, a BBC broadcast project that took her from the Netherlands to Oregon and beyond to explore the issues with people on both sides of the debate.  Her insights and passion were a tremendous contribution to DRLIB.

Later, we heard about International Perspectives in Europe and Canada on Assisted Suicide and Euthanasia.  Well traveled Canadian Nic Steenhout of Vivre dans la Dignité (Living with Dignity) discussed the situation in Europe, including developments in the Netherlands and Belgium where active euthanasia is legal.  Amy Hasbrouck of Toujours Vivant / Not Dead Yet Canada talked about disability advocacy to defeat proposals that would legalize assisted suicide and active euthanasia in Canada.  People with disabilities, including those whose conditions are no where near terminal, are openly targeted in these proposals.

After a long first day, we were then treated to a fascinating movie called “Fixed – The Science Fiction of Human Enhancement” by Regan Brashear.

Saturday’s presentations were led by the Autistic Self Advocacy Network.  The day opened with a tribute to renowned bioethicist Adrienne Asch, who recently passed away after an illustrious career, given by ASAN’s Ari Ne’eman, John Pare of the National Federation of the Blind and Marcy Darnovsky of the Center for Genetics and Society.

The day’s presentations focused on “beginning of life” issues.  Marcy Darnovsky and DREDF’s Sylvia Yee enlightened the group about Key Issues in Reproductive Technologies.  ASAN’s Director of Public Policy insightfully addressed the problems with “Wrongful Birth/Wrongful Life” lawsuits.

Both days included two concurrent discussion groups (four in total) led by experts who could have readily presented fully on the topics, but gave their time to facilitate valuable dialogue that elicited experiences, insights, ideas and strategies from all DRLIB participants.

  • Advocacy & Media – Marilyn Golden, Ari Ne’eman and Diane Coleman
  • Fighting the Bioethics War – William Peace (Syracuse University Jeannette Watson Distinguished Visiting Professor), Joseph Stramondo (PhD Candidate, Michigan State University), Marcy Darnovsky  (Center for Genetics and Society – CGS)
  • Addressing Ethical Dilemmas Posed by Genetic Technologies – Ari Ne’eman and Samantha Crane
  • Media and Violence Against People With Disabilities – Lawrence Carter-Long (National Council on Disability), Zoe Gross (Autistic Self-Advocacy Network – ASAN)

This led to more feedback and exchange, and ASAN’s Julia Bascom facilitated an excellent wrap up and next steps discussion.

We’ll be putting the Power Points and more on the DRLIB conference website in the near future.  Perhaps most importantly, everyone committed to further communication, expanded networking, and more DRLIB.

Second Thoughts Connecticut Negotiates POLST/MOLST Legislation With Consumer Protections We Can Live With

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National Healthcare Decisions Day is April 16th.  I hadn’t really expected the Centers for Disease Control to be one of the leading resources for my intro on this topic, but they had quite a bit to say:

April 16th is recognized each year as National Healthcare Decisions Day to inspire, educate, and empower the public and providers about the importance of advance care planning.

This was followed by some positive bullet points about why you should “Create Your Advance Care Plan,” e.g. “Gives you and your loved ones peace of mind.”  Then the CDC says:

A Lack of Planning Has Economic Consequences

Unnecessary medical expenses for treatment, hospital stays, and nursing homes.

So advance care planning avoids “unnecessary medical expenses.”  Presumably, that would be because your advance care plan would tell medical providers not to provide some treatments.

All too often, people with disabilities and our surrogates are encouraged to decide against medical treatment.  In some cases, we’re being singled out, but the evidence suggests that most people are pushed in this direction.  The typical advance care planning presentation draws upon commonly accepted fears and prejudices about disability to steer people toward declining life-sustaining treatment.  The CDC uses a video to set the stage, beginning with the word “Imagine.”

Imagine

You’re in a hospital and you can’t speak

And soon you won’t be able to swallow or breathe.

The video goes on to paint a grim picture of illness and disability, then urges advance care planning.  I’ve summarized disability concerns about the bias in advance care planning as a problem of imbalance.  In May 2012, I gave a plenary presentation on the subject to an international advance care planning conference held in Chicago, summarizing at one point as follows:

I call the Disability Perspective a Quest for Balance because advance care planning has developed under the false premise that the primary or only problem is overtreatment of dying people. A balanced approach would also address the problem of undertreatment of people who may or may not be terminally ill. I want to emphasize that while the disability community may be most sensitive to this problem, it affects everyone who may find themselves on the patient end of the health care system.

The risk is that the bias and imbalance may produce an advance care plan that results in a denial of life-sustaining treatment that the person would have wanted if they had better information, resulting in their unnecessary and unintended death.  That risk is magnified by recent campaigns to enact legislation and programs to get people to have a Physicians Order on Life-Sustaining Treatment (POLST) or Medical Order on Life-Sustaining Treatment (MOLST).  While the typical advance directive requires some time and thought to apply it to a given situation, POLST/MOLST orders are immediately effective medical directives.  We’ve elaborated on our POLST concerns in public comments submitted to the Institute of Medicine’s Committee on Approaching Death.

Fortunately, there is now a role model for disability activism on POLST.  Second Thoughts Connecticut successfully resisted a 2013 POLST bill in their state, which got them to the table to negotiate a 2014 POLST bill with meaningful consumer protections.  The disability advocates, led by Stephen Mendelsohn and Cathy Ludlum, used materials developed by an attorney who’s been analyzing and blogging about POLST, Jason Manne.  Here is Manne’s summary description of model POLST legislation:

The following suggested POLST statute is intended to allow individuals to use the form to effectuate their end of life treatment preferences while including protections against abuse and the possibility of death under unintended circumstances.  It contains protections not found in most POLST laws.  The protections for patients are the following:

  • Limiting use of the POLST to individuals who have qualifying medical conditions
  • Setting standards for the POLST “conversation” to ensure that people using the form have stable treatment preferences and are not steered to reject treatment.
  • Requiring a patient or surrogate signature on the POLST for it to be effective.
  • Requiring that the patient or surrogate promptly receive a copy of the POLST, so he or she can discuss it with family members and reconsider, if appropriate.
  • Requiring mandatory reviews to update the form periodically.
  • Requiring ongoing quality control reviews in facilities that use the POLST and mandating a review of compliance with the POLST law as part of licensing inspections. 

Second Thoughts Connecticut drew from Manne’s analysis and brought other research and materials to bear to negotiate and reach a consensus with Connecticut POLST advocates for a POLST bill that is as close to a model for the nation as we have seen.

A news article about POLST and the Connecticut bill highlighted their success in reaching a balanced proposal to pilot their approach.  We hope to see positive updates in the near future.

Dialogue Begins About Feeding Tubes and Breathing Devices With Respecting Choices Program

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Last December, a significant number of national and local disability rights organizations as well as individuals with disabilities and supporters signed onto a letter addressed to the Respecting Choices advance care planning program at Gundersen Health Systems in LaCrosse, Wisconsin.  The letter criticized two documents for inaccuracy and bias in their discussions of feeding tubes, bipaps and ventilators.  The documents were first discovered by Second Thoughts Connecticut activist Stephen Mendelsohn.

In response to our letter, Respecting Choices notified me that Dr. Hammes was out of the country until early January, but would be in contact upon his return.  Before preparing a formal reply, Dr. Hammes requested a telephone conference, which took place on February 5th, involving Dr. Hammes and his Associate Director Linda Briggs, as well as Cathy Ludlum of Second Thoughts Connecticut and myself.  This was followed by a letter from Dr. Hammes to the Disabilities Community which I’ve posted here at his request.  A disability advocate in Wisconsin also brought to our attention a “Dear Colleague” letter from Respecting Choices to colleagues engaged in advanced care planning.  On March 7, we had a second phone conference with Dr. Hammes to discuss the letter and determine our next steps.

As you can see in the letter below that Cathy Ludlum and I sent April 1st, Respecting Choices has discontinued sales of the two documents and we have agreed to form a committee to discuss potential revisions, with five members selected by Respecting Choices and five members by the disability community.

We believe that your support was essential to the progress that we have made thus far.   Below is our letter reflecting that progress and our next steps:

April 1, 2014

Dear Dr. Hammes:

Thank you for your letter responding to our letter of December 20, 2013 and for the two phone calls that Cathy Ludlum of Second Thoughts Connecticut and I have had with you to begin addressing the concerns we raised about the Respecting Choices informational documents on feeding tubes and breathing devices.  As you requested, I’ve posted your letter on our website.

We are gratified that you have suspended online sales of these two documents, pending the results of our efforts, but we’re disappointed that you haven’t issued a “recall” of the documents.  We understand that you consider the documents to be fine if used as intended, but we consider some of the information to be factually incorrect no matter how the documents are used.

We have also been made aware of a “Dear Colleague” letter in which you offered to replace existing materials with new materials when they are ready.  We appreciate that offer, but were initially concerned that this letter included an explicit statement that even after the new materials are ready, “You are not required to replace your current inventory.”  Since then, you have stated that you will send replacement inventory to your colleagues, and we thank you for that.

To proceed with our discussion, we’ve agreed to convene a working group of ten people, five identified by you and your team and five by ours, to consider how the documents can be revised to address the concerns we raise in a manner acceptable to both Respecting Choices and the disability community, particularly the organizations and individuals who signed onto our letter.

As we move forward with our dialogue, we would like to acknowledge the statement in your letter:

As we discussed, Respecting Choices is in complete agreement with you that both feeding tubes and breathing support provide great value to many persons with disabilities, and can improve and prolong life. For these patients, these medical interventions clearly should be encouraged.

This is an important principle and goal that we endorse.  Your letter also began a key discussion about the appropriate audience for these documents.

The fact sheets you referenced in your open letter are not intended to assist healthy adults, individuals with minor medical problems or individuals with disabilities with advance care planning. They are designed to be used by trained facilitators during conversations with competent patients who have serious, progressive, life-limiting conditions and who may face these treatment decisions and die in the near future.

As we have stated in our preliminary telephone conversations, some people who would seem to fit this description may have many years of productive and happy life ahead if they choose to use one of these medical devices.  It’s essential that the information they receive is accurate and unbiased.  If there is any bias, it should be toward encouraging patients to try these devices before ruling them out.

Thank you for your willingness to engage in this dialogue.  We look forward to a constructive effort.

Sincerely,

Diane Coleman & Cathy Ludlum

***

If you would like to be considered for the committee, please email me at dcoleman@notdeadyet.org.