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

Our News & Commentary Blog

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.

R U Ready? Portlight Strategies, Emergency Preparedness and Media Awareness, April 1 – 7. Share Your Stories!

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I’m getting this out a little later than I’d planned due to getting hit hard with a nasty cold late last week.   What follows is an important effort regarding the safety and welfare of people with disabilities (and other underserved folks) in areas where disaster strikes.  I’m cutting and pasting the alert from Portlight Strategies directly below, with additional info about the organization below the alert.  (Taken from this link)

R U READY?

Attention Blogger and Social Media Users,

Portlight Strategies, Inc wants to invade the internet with the importance of emergency preparedness and people with disabilities with the “R U Ready” media blitz. April 1st to April 7th. Portlight will use social media to spread awareness through blogs and status updates. Portlight is asking bloggers to blog about emergency preparedness and people with disabilities and then share your blog on Facebook and Twitter using the hashtag #ruready. Some examples of topics are:

– Families with children with disabilities

– Service animals and shelters

– How to shelter in place

– How to prepare for a disaster if you are dependent on equipment (vent, powerchair, etc..)

– Transportation during a disaster

– Alternative formats (braille, large print, ASL interpreter, etc..) in a disaster

During the week of the RUReady media blitz, we will all change our Facebook profile picture to the below graphic. We encourage everyone to do the same.

RUReady (5)

Contact us and let us know if you are interested in participating at holly@portlight.org or shari@portlight.org

Not Dead Yet is concerned with the life and death issues that affect disabled people of all ages.  The dangers that disasters present were brought into sharp focus (and then deliberately obscured) during Hurricane Katrina.  Some disabled people were abandoned to drown and die in a nursing home that was flooding – and never evacuated.  During that same time, patients at Memorial Hospital in New Orleans were allegedly murdered so that medical staff could honestly leave no one alive behind (threw them off the lifeboat to save themselves).

While few stories are as stark and as outright dehumanizingly deadly as those, there’s still a clear pattern of neglect and abandonment of disabled people in disasters.

That’s one of the main reasons that Portlight Strategies exists.  If you want to know more about the organization – and you should – read “about us” on their site and make sure to read through the “our story” section.  You can also read this 2011 guest post by Paul Timmons (CEO of Portlight Strategies).

Watch this blog this week – we’ll be publishing a blog post by a member of our Board of Directors on the topic.  And if you have stories to share – please share them with the good folks at Portlight and share the word!

 

Press Release: Disability Opposition to Assisted Suicide Bills Helped Secure Third Defeat In New England States This Session

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[Editor’s note:  For the PRWeb online version of this release in pdf format, go here.]

On Friday, it became official: for the second consecutive year, the Connecticut legislature rejected assisted suicide legislation. Disability advocates celebrated as the state’s Public Health Committee, like the Massachusetts Joint Committee On Public Health a week earlier, let its assisted suicide bill die in committee. Earlier this spring, New Hampshire overwhelmingly rejected an assisted suicide bill by a vote of 219-66.

“It’s a clean sweep,” said John Kelly, New England regional director for Not Dead Yet and director of Second Thoughts Massachusetts. “Throughout New England, assisted suicide proponents simply had no answers to the arguments raised by disability rights advocates. When public health committee members heard from us how discriminatory and dangerous assisted suicide is, they had ‘second thoughts.’”

With victory assured, Second Thoughts Connecticut leader Stephen Mendelsohn issued a statement that was picked up by the Associated Press, appearing in media from Boston to San Francisco. “The collateral damage from legalizing assisted suicide—including massive elder abuse, the deadly mix with a cost-cutting healthcare system steering people to suicide, misdiagnosis and incorrect prognosis, suicide contagion, and disability discrimination in suicide prevention—is simply not fixable.”

“In all three states, it’s clear that the disability community was heard and had an impact,” said Not Dead Yet President and CEO Diane Coleman. “People who are terminally ill are almost always disabled. This is one of many reasons that our perspective sheds some light on this complex issue.”

CT News Junkie stated, “Both this year and last year, people with disabilities and their advocates have been among the bill’s most outspoken opponents.”

Disability rights opposition was also a focus in US News and World Report. Alongside quotes from Not Dead Yet’s Coleman and Kelly, Marilyn Golden of the California-based Disability Rights Education and Defense Fund was quoted regarding the Connecticut bill, saying “This does not promote patient choice. It invites coercion.”

As Second Thoughts Connecticut leader Cathy Ludlum told the Yale Daily News, the bill “would basically redefine what suicide is. It would mean some people are going to get suicide prevention, and other people are going to get suicide assistance.”

“If someone at Yale feels like they want to kill themselves because their life has no dignity and worth, somebody would try to give them help to get better,” Kelly told the Yale Daily News. “But if it’s a disabled or terminally ill person, people say, ‘Of course you want to die.’”

CT News Junkie quoted Elaine Kolb’s testimony before the Public Health Committee, that “they are saying that ‘I’d rather be dead than be you,’” Kolb said. “This is something that people are saying to people with disabilities and there is contempt in it and there is contempt in this bill.”

Kolb, a long time Not Dead Yet activist and singer/songwriter, played guitar while leading Second Thoughts Connecticut’s press conferences in her song, “Not Dead Yet.”

Advocates are ready for the legislative fights that are sure to begin again in 2015, Mendelsohn said. “We’re not taking anything for granted and we know they’re going to be back in 2015.”

Second Thoughts Connecticut, the sister group to Second Thoughts Massachusetts organized last year to stop assisted suicide legislation, was recognized for its impact on the legislation’s defeat.

Diane Coleman, John Kelly and Marilyn Golden Quoted in U.S. News & World Report Article on “Right to Die”

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Today, March 24th, the U.S. News & World Report site published an article titled “Is There a Right to Die?”

The article focuses mainly on the current battle around assisted suicide legislation in Connecticut.

The most remarkable aspect of this article is that about half of it is devoted to quotes from disability activists, who are the only opponents to legalized assisted suicide quoted in the article.  Marilyn Golden from DREDF is quoted as are Diane Coleman and John Kelly from Not Dead Yet.  I (Stephen Drake) was also interviewed but not quoted.

We celebrate and appreciate that.  Still, there are aspects regarding the framing of the story that may make readers wonder why disability activists were relevant to it.

First, the graphic used under the headline is a picture of a latex-gloved hand pulling a plug, which conflates the right to refuse unwanted treatment with assisted suicide.  The public is already confused, and Compassion & Choices capitalizes on that in its lobbying.  (Connecticut and New Jersey have bills pending; bills in New Hampshire and Massachusetts were recently defeated.)

Second, the reporter focuses on Compassion & Choices’ (C&C) claim that assisted suicide is only for terminally ill and imminently dying people.  She heard from us about the New Hampshire bill, which made people eligible for assisted suicide if they have an irreversible condition which will shorten their life span, thus making many people with disabilities eligible, as it is not tied to a prognosis of death in six months.  We also told the reporter about C&C’s campaign to promote voluntarily stopping eating and drinking (VSED) as a means of suicide for those who don’t have or qualify for an assisted suicide law in their state, including people who are not terminal.  But the article doesn’t bring up these facts that show how broad C&C’s agenda is.

That might have been too hard to put up against the C & C claim that their legal objectives are narrow – and would have required a longer article than the reporter’s editors wanted.

Bottom line – I suspect that Barbara Coombs Lee is far less happy with this article than we are.  I’m sure she would much rather have not had us included and been able to pretend that religious conservatives are her group’s only legislative opponents.

Please go check out the article here.