NDY Files Public Comment on CMS Proposal on Advance Care Planning

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NDY’s comment letter can be summarized as follows:  We do not oppose payment to physicians for advance care planning discussions with their patients, but we want the payment regulation delayed until the disability community and others can, with CMS support, develop new advance care planning informational materials that do not rely on “better dead than disabled” messages to convince people to decline life saving and life sustaining medical treatment.  The complete NDY comment letter is copied below and a link to it is posted on our NDY Activities/Public Policy page.

September 8, 2015

Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-1631-P
7500 Security Boulevard
Baltimore, MD 21244-1850

To All Concerned Persons:

Not Dead Yet is a national disability rights group, which advocates for non-discrimination against people with disabilities in the context of what is often referred to as “end-of-life” care. The following comments are submitted with respect to the advance care planning proposal discussed at pages 246 and 247 of the Notice of Proposed Rule Making pertaining to “Medicare Program; Revisions to Payment Policies under the Physician Fee Schedule and Other Revisions to Part B for CY 2016.” We specifically address the CMS request for “comment on this proposal, including whether payment is needed and what type of incentives this proposal creates.”

First, Not Dead Yet does not, in general, oppose the concept of payment for appropriate physician-patient communications about health care decisions and advance care planning. We stated this in a 2013 press release entitled Not Dead Yet Provides Video and Written Comments on POLST to Institute of Medicine’s Committee on Approaching Death. More importantly, as noted in the recent U.S. News and World Report article, Is the ‘Death Panel’ Debate Dead?, our concerns about advance care planning discussions are that “A lot of the messaging focuses on telling people they would be better off dead than disabled, and that therefore they should decline treatment.”

Unfortunately, major early efforts in forming advance care planning policies in the U.S. excluded the voices of disability advocates. As leading palliative care physician Dr. Ira Byock said of the disability exclusion by Partnership for Caring (initially named “Last Acts”), “It was a deliberate decision — and it was irresponsible.” (See A Deliberate Decision?)

Our concerns about these issues are long standing and have been conveyed in a number of venues, including the following, which we urge CMS to review closely:

The third and fourth items in this list have produced some favorable results.

Following the National Disability Letter on Living With Feeding Tubes and Breathing Support, the advance care planning organization Respecting Choices agreed to convene a committee with equal representation from Respecting Choices and a disability caucus led by Not Dead Yet to work on revising informational materials. The disability caucus includes people with disabilities who depend on life sustaining medical technology as well as a rehabilitation physician. Our goal was to remove anti-disability bias in the materials and to balance information related to the potential risks and benefits of treatment choices. Thus far, we have achieved full agreement on important revisions to the feeding tube document, and are close to agreement on the materials pertaining to breathing devices.

The initial outcome of the NDY and Center for Disability Rights Comment Letter to New York Medicaid Opposing “Conversation Ready” Project As a Way to Save Money was a meeting convened by CMS and the Administration on Community Living, which included Not Dead Yet, the Center for Disability Rights and the Conversation Project. It was agreed that advance care planning should not be promoted as a means of saving Medicaid funds, and New York state withdrew the “Conversation Ready” project as an option for state grant proposals in connection with a larger project to reduce hospitalizations.

These successes, while meaningful, are a proverbial “drop in the bucket” in view of the decades of massively well funded advance care planning policy work and initiatives already dominating the field, which are permeated by inaccuracies and an overwhelming, misleading and deadly bias against living with significant disability.

It is difficult to know how to undo the crushing, life ending damage already done and to prevent the proposed payment regulations from magnifying the negative impact of the horrendously anti-disability materials that already exist. But that should be a task that we can all agree on: the discrimination incorporated in existing materials must be eliminated and new materials must be developed, disseminated and promoted.  Moreover, the implementation of any regulation for payment for advance care planning must be delayed until accurate and unbiased materials are available.

A serious and committed national effort, fully supported by CMS, is needed to accomplish this. It should begin with an expert committee and dedicated staff, a majority of whom are people with disabilities with first hand knowledge and experience of living with significant disabilities and depending on medical treatment, as well as consumer directed long term services and supports, to live fulfilling lives. Among these should be people who successfully made the transition from being nondisabled to being significantly disabled. Advance care planning and rehabilitation experts should also be involved. Convening such a diverse team of staff and advisory experts is essential to breaking down the old and rebuilding new policies and implementation approaches for advance care planning.

Correcting a history of discrimination can be difficult, but it can be done and must be done. So many lives depend on getting it right. Not Dead Yet and our partners in the disability community are ready to help lead that effort.
Diane Coleman, JD
President/CEO
Not Dead Yet

Coleman Letter to CA Assembly Members Opposing Assisted Suicide Bill; Action Alert

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Versions of the letter below have gone to various California legislative committees and key members.  We are down to the wire, with an Assembly vote possible today, but more likely tomorrow (Wed., Sept. 9th).  California is one of the most influential states in the country and it’s unconscionable, after assisted suicide bills were defeated on a bipartisan basis in the general session, that pro-assisted suicide organizations have ramrodded such a dangerous bill through a special session that was convened to address Medicaid budget issues.  Why would it bother us that legislators are considering assisted suicide laws at the same time they consider – let’s face it – *cutting* the Medicaid budget?  Let’s call it what it is – a Deadly Mix!

Everyone, especially our California advocates in the disability community, but also everywhere in the country, are needed.  For more information on what you can do to help NOW, please go to Second Thoughts.  John Kelly has posted some very useful material there.  In addition, follow Not Dead Yet and Second Thoughts on Twitter.

Here’s the letter I sent to twelve CA legislators on Labor Day:

AB2X 15 (Eggman): Doctor-Prescribed Suicide – OPPOSE

Dear Assembly Member:

I’m writing to urge you not to pass on AB2X 15, the CA assisted suicide bill.

I am a severely disabled woman, and head up the national disability group, Not Dead Yet, which has members in California.  I’ve spent a lifetime advocating for the rights of disabled people, young and old, to control our own lives and not have our choices dictated by doctors and other professionals.  So you might wonder why I oppose a bill that is widely portrayed as giving people choice and control over their own death.

But who actually has choice and control under assisted suicide laws?  Anyone could ask their doctor for assisted suicide, but the law gives the authority to doctors to determine who is eligible.  Doctors make the determination that a person is terminally ill and likely to die in six months, and that the request for assisted suicide is voluntary and informed.  The advertised “safeguards” in assisted suicide bills are entirely in the hands of doctors, from the diagnosis, prognosis, disclosures, request form, decision whether to refer for psychological assessment, prescription and report after death.

Who are the doctors who are giving lethal prescriptions?  The public image is that one’s own doctor, someone who knows you and has taken care of you throughout your illness, will be the one who assists your suicide.  But in Oregon, the majority of assisted suicides involve a doctor referred by Compassion and Choices (C&C).  [See references under “Doctor Shopping” section of article entitled Why Assisted Suicide Must Not Be Legalized.]   The state does not interview doctors who said “no” to the person’s request, so we don’t know why so many people had to go shopping at C&C.

The prescribing doctor’s also fill out a final report after the death, among other things stating the reasons for the request for assisted suicide.  Among the top five reasons given are feelings of being a “burden on others” (49% in 2013) or feel a “loss of autonomy” (93%) or “loss of dignity” (73%).  These are not about pain from a terminal disease, but are psychological and social issues that cry out for meaningful supports and genuine care.  Yet the assisted suicide law does not even require disclosures about consumer controlled home care options to address feelings of loss of autonomy or being a burden, much less require that those services be provided.

The bill specifically provides that depression is not a barrier to getting a lethal prescription. All that is required is that the depression is viewed as not impairing the person’s judgment, a subjective and speculative assessment at best. Psychiatrists and psychologists are not immune from prevailing social biases against people whose illnesses make them dependent on others for basic physical care. In some cases, they are just as likely as anyone to say, “If I were in your shoes, I might want to die,” and render an opinion that treatment for depression is not necessary, paving the way for a lethal solution.

Still, you might say, didn’t the person initiate the request for assisted suicide?  Didn’t they have to self-administer the lethal dose?

I understand that the media has been flooded with images of Brittany Maynard, who held the lethal drugs in her hand, and appeared to be in full control with a loving family supporting her choice to die in the bedroom we saw on TV that she shared with her husband.

But most people who have been reported to use assisted suicide in Oregon do not resemble Ms. Maynard.  Most are age 65-84, in a society where one in ten elders are abused according to federal figures.  The abusers are usually family members.  About half the people reported to use assisted suicide in Oregon did not have a health provider present at the time of death.  With no independent witness required, there is no evidence that they self-administered the lethal drugs, or even that they consented at the time of death.  These bills have to be considered in light of the sad reality that not all seriously ill people have loving family.  Assisted suicide laws grant blanket immunity and effectively foreclose investigation of wrongdoing.  As one elder law attorney, Margaret Dore, put it, they are a “recipe for abuse.”

Moreover, as a person who has been disabled all of my life, I’ve learned that some of the health care that I’ve needed will not be covered by the available forms of insurance, because it won’t cure me and it “costs too much”, things that would have helped me maintain more physical function longer or reduced the help I needed from family.  The idea of mixing a cost-cutting “treatment” such as assisted suicide into a broken, cost-conscious health care system that’s poorly designed to meet a seriously ill patient’s needs is dangerous to the thousands of people whose health care costs the most — mainly people living with a disability, the elderly and chronically ill. 

Finally, it doesn’t increase my comfort to know that the CA medical group has gone neutral.  When push comes to shove over the health care needs of a disabled Californian, whose corner will the doctor be in?  The CMA amendments to the bill were more designed to protect doctors than patients.

When you look at assisted suicide based on one individual, someone with good healthcare and a loving family, it often looks acceptable. But when you examine how legalization affects the vast majority of us — especially those most vulnerable — the dangers to the many far outweigh any alleged benefits to a few. Please vote NO on AB2X 15.

Sincerely,

Diane Coleman, JD
President/CEO
Not Dead Yet

John Kelly: A social policy of assisted suicide is just as dangerous as the death penalty

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John B. Kelly 
Testimony in strong opposition to AB2x 15 
September 3, 2015

Members of the Finance Committee:

If you are opposed to the death penalty, I hope you will have second thoughts about legalized assisted suicide. Yes, there is a committed group of proponents who believe that assisted suicide would benefit them, and many people have stories of difficult and traumatic deaths. But compelling personal stories notwithstanding, a social policy of assisted suicide is just as dangerous as the death penalty.

We now know that many completely innocent people have been sentenced to death either through mistakes (witness misidentification, circumstantial evidence,) or abuse of the system (prosecutorial and police misconduct). Strong majorities are forming against the death penalty.

Mistakes and abuse in the medical system also sentence innocent people to death. People who are misdiagnosed (see John Norton), people who would respond to more treatment (Jeanette Hall), people who wouldn’t die for years (Oregon’s statistics), will be led to tragically “choose” death.  And because not all families are loving or financially secure, innocent people will be bullied (Kate Cheney) or worse by abusive families and caregivers (Wendy Melcher). With thousands or even millions of dollars at stake, beneficiaries will be motivated to ensure a premature death (Thomas Middleton).

Just like the death penalty, assisted suicide exacerbates existing inequalities across race and class. People who are mentally ill,  people of color, and poor people are much more likely to be sentenced to death. Assisted suicide programs have offered lethal drugs to patients with severe depression (Michael Freeland) and to people denied treatment (Barbara Wagner). Patients of color receive substandard, often deadly lack of medical care, and are the targets of educational campaigns to prepare advanced directives, give up on treatment, and enter hospice.

Assisted suicide is unique in that the leading proponents are more well-to-do, better educated and whiter than the general population. People of color oppose legalized assisted suicide (Pew Research Center on End-Of-Life), and do not participate in the legalized programs (Oregon statistics). And yet the great cost-savings potential of early death already drives much of of end-of-life policy. We poorer people are already under increasing pressure to refuse life-saving treatment (even antibiotics or temporary ventilation). For people who are already viewed as “better off dead,” assisted suicide will become a recommended option.

Please think about the profound social implications of enshrining in policy the belief that sometimes it is more dignified, more respectable, to die early. Rather than aid in dying, please focus on aid in living and ending the vast inequalities that are distorting our society.

John B. Kelly

References are all searchable at the California-based Disability Rights & Education Defense Fund (DREDF) page on assisted suicide: http://dredf.org/public-policy/assisted-suicide/ .

John B. Kelly
New England Regional Director
Not Dead Yet
Boston, MA

[Editor’s Note:  For another interesting comparison of assisted suicide laws and the death penalty, see John Witman’s 11/29/14 op-ed in the Times of Trenton, Assisted suicide will not work in New Jersey.]

DREDF and ASAN Oppose “End Run” Assisted Suicide Bill in California Assembly

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Having failed to get any traction in the California Assembly Health and Judiciary Committees during the regular legislative session, proponents of assisted suicide legislation did an end run around the appropriate process and brought another bill up in a special session convened to address state budget issues.  As Marilyn Golden, senior policy analyst for the Disability Rights Education & Defense Fund, told the San Jose Mercury News, “This is a heavy-handed attempt to force through a bill that could not get any traction at all in committee,” said Marilyn Golden, co-chair of the Californians Against Assisted Suicide Coalition. “It’s one thing to run roughshod over the normal committee and legislative process to jam through a district bill, but to do that on what is literally a life-and-death issue is clearly abusive, and should concern all Californians.”  (See California legislators revive right-to-die bill, August 18, 2015.)

On September 1, 2015, a committee hearing was held on the bill, ABx2 15, and Marilyn Golden was among the witnesses testifying against the bill.  Her testimony began with a compelling summary of the issues:

We, in opposition, present our concerns under the banner of social justice: disability justice; racial justice; economic justice.

Choice is a myth in the context of our unjust health care reality. End-of-life treatment options are already limited for millions of people—constrained by poverty, disability discrimination, and other obstacles. Adding this so-called “choice” into our dysfunctional healthcare system will push people into cheaper lethal options. There is no assurance everyone will be able to choose treatment over suicide; no material assistance for families of limited means who are struggling to care for loved ones; no meaningful protection from abusive family members or caregivers.

This bill protects doctors and hospitals, not patients. It presumes that all families are happy, and that everyone is financially secure and has no one around them working against their interests.

The bill assumes a fantasy world where government will effectively address abuse, under a bill with no provision for it.

Don’t be seduced by rhetoric of choice for a few, into a dangerous policy change that will bring social injustice to many.

To read Marilyn Golden’s complete testimony, go here.

A number of individuals and disability organizations also sent powerful letters to the Assembly committee, including the Autistic Self Advocacy Network, a strong ally of Not Dead Yet in the fight against legalization of assisted suicide and related health care justice issues.  The following from Julia Bascom, deputy executive director, is a crucial passage in the ASAN letter:

We realize that many regard “aid in dying” as a social justice issue, and we agree; except that the proponents are on the wrong side of it. Most social justice advocates realize that government statistics do not reflect reality. Oregon’s statistics are reported by doctors who participate in assisted suicide. Most people are reluctant to admit that they broke the law; much less that they facilitated the death of an unwilling person; hence, most injustice occurs in private.  Hence, the proponents interpretation of the Oregon’s statistics reflects a privileged experience of the justice system. Given the legislature’s knowledge of such systemic oppression, it is unjust for it to institute yet another means of normalized, invisible violence; no matter what its intentions are. Mainstream social justice activists are working to prevent laws the precipitate systemic coercion, mistakes and abuse.  As social justice activists for the disabled community, we demand that the experiences of people with disabilities and terminal illnesses be afforded the same insight, nuance, and respect.

To read the complete ASAN letter, go here.

Despite these and other well documented messages to the committee, in the absence of many of the Health and Judiciary Committees’ bipartisan opponents, ABx2 15 was passed out of the “special” committee.  Disability rights activists have long hated the word “special” as a euphemism for discrimination, segregation and second class treatment, and now we have another reason to view it that way.

But the fight is not over.

NDY Colorado Issues Media Advisory Opposing Proposed CO Constitutional Amendment on Assisted Suicide

Our News & Commentary Blog

FOR IMMEDIATE RELEASE

August 24, 2015

Contact: Carrie Ann Lucas (970) 460-4035

Assisted suicide proponents have recently submitted an initiative to amend the Colorado constitution to allow not only assisted suicide, but non-voluntary euthanasia as well. This first in the nation proposal to allow both assisted suicide and euthanasia will allow some people’s lives to be ended without their consent.  There will be mistakes and abuse, and as a result, people will die needlessly — preventable deaths that can never be undone. The proposed constitutional amendment does not propose any safeguards to prevent this outcome.

Elder abuse, and abuse of people with disabilities, are a continuing problem in Colorado.   Though called a free choice, for these patients, assisted suicide and euthanasia would have been a phony form of freedom. Assisted suicide is legal, an heir (someone who stands to inherit from the patient) or abusive caregiver may steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug — no witnesses are required at the death, so who would know?  Each year, more than 11,000 reports of abuse against people with disabilities and seniors are reported in Colorado. Far more go unreported.

“Not Dead Yet is among a long list of disability rights organizations opposing the legalization of physician-assisted suicide. This amendment is a deadly mix in a profit-driven healthcare system where a lethal prescription may become the cheapest treatment. The bill poses a direct threat to the lives of persons with disabilities and the elderly,” said Carrie Ann Lucas of Not Dead Yet Colorado.

Anita Cameron, also of Not Dead Yet Colorado added, “This amendment is unnecessary, as every patient already has the right to refuse treatment. This proposal has no safeguards to protect against abuse and coercion. Legalizing physician-assisted suicide and euthanasia is like putting fire into a paper bag: There’s no way to control it.”

Importantly, there is an alternative: anyone dying in discomfort that is not otherwise relievable, may legally today, receive palliative sedation, wherein the patient is sedated to the point where the discomfort is relieved while the dying process takes place. A legal solution to any uncomfortable deaths that does not endanger others the way an assisted suicide law does exists currently.

“Sadly, many, including the amendment’s primary proponent, fear disability more than death itself,” said Lucas.  “This fear already causes so-called ‘mercy killings’, and should not drive public policy.”

“Studies on severely disabled people have demonstrated that disabled people rank their quality of life similar to non-disabled people,” said Robin Stephens, also of Not Dead Yet Colorado. “Some people rank their quality of life as very high, some very low, most inbetween — just like non-disabled people.”

Not Dead Yet Colorado is the Colorado chapter of Not Dead Yet, a a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Not Dead Yet helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.

[Readers can view the Media Advisory and visit the NDY CO website here.]