Rhode Island Medical Reporter Quotes Second Thoughts CT Concerns About MOLST

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Felice J. Freyer, medical reporter for the Providence Journal, reached out to Second Thoughts Connecticut when covering implementation of Rhode Island’s new MOLST law (Medical Orders on Life-Sustaining Treatment, in some states called POLST for Physician Orders on Life-Sustaining Treatment).  Second Thoughts CT testified against a MOLST bill in Connecticut and was successful in blocking its passage.

Ms. Freyer opened her article, entitled Health Insight: New R.I. law aims to ease final days of terminally ill, with a story of someone in the late stages of a terminal condition who did not want to return to the hospital.  Nonetheless, his nursing home sent him back when a medical crisis arose.  His advance directive wasn’t effective in preventing that scenario.  In contrast, a medical order signed by a qualified professional is expected to be more effective.

The Rhode Island bill did not face opposition, despite the concerns that have arisen in a number of states about abuses of this new type of medical directive.  A lot of my personal education about these issues has come from research and advocacy done by two of Second Thoughts Connecticut’s leaders, Stephen Mendelsohn and Cathy Ludlum, as well as from attorney Jason Manne’s blog.  (Some of the information they’ve provided is included in comments I submitted to the Institute of Medicine’s Committee on Approaching Death.)

Ms. Freyer demonstrated some responsible and balanced journalism by reaching out to Second Thoughts Connecticut and interviewing both Stephen and Cathy via e-mail.  The resulting article included the following discussion and quotes:

[Maureen] Glynn [described as “the lawyer who co-chairs the coalition that pushed for the law”] said there was no major opposition to the MOLST law when it came up in Rhode Island. But in Connecticut, a similar proposal failed after a disability-rights group objected. Two members of that group, Second Thoughts Connecticut, shared their concerns with me via email.

Some people with disabilities fear that MOLST laws, already in place in several states, could result in denial of life-saving treatment to those who want it. Although MOLST is supposed to be voluntary, these activists say some nursing homes have presented it as mandatory. And when emergency personnel see that pink sheet tacked to the wall, will they read all its details or will they assume it means “do not resuscitate”?

Cathy Ludlum, of Second Thoughts Connecticut, says that “many people with severe disabilities feel personally threatened” by the law’s definition of “terminal illness” as “an incurable or irreversible condition that, without the administration of life-sustaining procedures, will, in the opinion of the attending physician, result in death.”

“By definition,” Ludlum said, “we have incurable and irreversible conditions, and many of us use life sustaining procedures every day of our (hopefully long) lives.”

These worries show that MOLST, like any medical intervention, has benefits but also hazards. …

To read the full article, go here.

Though Freyer says that MOLST is “only for people whose illness is terminal,” she also reports that, “starting Jan. 1, hospitals and nursing homes have been required to offer the form to patients upon admission — although, importantly, there is no requirement to fill it out.”

This makes me wonder, what do facility staff say when they provide the form to newly admitted patients?  “I have to provide you this form but, if you’re not terminal, then don’t fill it out?”  Or if you fill it out, but are not terminal, what will happen?  Since the form has to be signed by a “physician, nurse practitioner, advanced practice registered nurse, or physician assistant,” can any one of them advise you whether you are “terminal” enough to fill out and sign the form?  Do they have to examine you or read your medical chart to figure out what to say to you?  Will they tell you to “void” the form if you filled it out but are not terminal?

None of this gives me any confidence that the abuses that concern people with disabilities will be avoided in Rhode Island. – Diane Coleman 

DREDF Senior Policy Analyst Weighs In On New Mexico Assisted Suicide Case

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There’s been no shortage of reactions to the New Mexico lower court ruling enjoining prosecutions of physician assisted suicide in that state, but we rarely see the disability perspective hit the mainstream press so quickly as Marilyn Golden’s op ed in the Albuquerque Journal.

In Assisted suicide full of dangers, which appeared in the Journal’s January 17th edition, Golden provided a thorough and solid explanation of the risks that legalization of assisted suicide poses to people “facing serious illness or disability.”

This ruling tears away at the fabric of what those of us in the disability rights movement have been working to improve: a health care system free to deal with each individual uniquely rather than as a line-item on an accounting ledger, the elimination of abuse and coercion by those seeking to profit or take advantage of someone during a difficult time, and the illusion that individuals with a severe illness or disability should be measured by a flawed societal definition of quality of life.

The New Mexico lower court apparently bought into superficial government reports of a problem free practice of assisted suicide in Oregon and Washington where it is legal, but ignored extensive anecdotal accounts of problems.  As Golden noted:

Oregon’s assisted suicide law passed in 1999 and has been widely scrutinized by those in the medical community, disability rights advocates and ethicists who have noted many examples of unreported problems and complications with the law, generally only brought to light through investigative reporting or personal testimonies.

On the subject of the so-called “choice” of assisted suicide, Golden described the infamous case of Barbara Wagner in Oregon.

Wagner was an Oregon retiree diagnosed with lung cancer. During the course of her treatment, her physician recommended particular chemotherapy, but within weeks, she received a notice from her insurer that they would not cover the life-saving treatment. However, they would pay for assisted suicide.

To read the rest if Golden’s excellent op ed, I encourage our readers to go here. – Diane Coleman

 

New Mexico Lower Court Parrots the Language and Platitudes of Assisted Suicide Advocacy Groups

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As many of our readers have heard by now, a New Mexico Second Judicial District Judge has ruled that the state constitution establishes a fundamental right of people who are diagnosed as terminally ill to receive a lethal prescription from a doctor, with a corresponding right of the doctor not to be prosecuted under the state law that prohibits assisted suicide.

The judge admitted that the conduct involved would fall within the prohibition on assisted suicide enacted by the state legislature, and that the legislature was aware of the public debate on the issue and wrote the law in a way that clearly included physician assisted suicide.  She even admitted that calling it “aid in dying”, as assisted suicide proponents advocate, doesn’t change the fact that it is prohibited by the statute.  But she ruled that the state constitution makes “aid in dying” a fundamental right.  On that basis, she carved it out of the statute, asserting that no state interest justified limiting the fundamental right, thus declaring the statute unconstitutional as to “aid in dying.”

Stephen Drake has been talking about the proponents’ word game in promoting the term “aid in dying” for years.  I’ll refer readers to his entertaining piece entitled Using and Promoting Change of Language to Make the Objectionable Acceptable.

The effort to sell this language as a way of avoiding substantive concerns did not get anywhere in Connecticut.  As I pointed out in my blog on a 2012 interview about the New Mexico case with Health Policy Solutions (Doctors, patient challenge New Mexico assisted suicide ban), the Connecticut court viewed this as more appropriate for legislative than judicial action, stating:

Legislative determination is particularly important given the significant medical legal and ethical concerns about legalized physician assisted suicide that have been raised across the country. Among the other difficult and important public policy concerns that the legislature would have to evaluate – and is uniquely positioned in our system of government to evaluate – are the following:

–           Whether physician-assisted suicide threatens the most vulnerable in society, including the poor, the elderly, and the disabled, who are at risk of being threatened, coerced, or influenced to end their lives to spare their families the financial costs and emotional strain of caring for them; …

–           Whether physician-assisted suicide shifts the focus of physicians and insurers away from vitally important measures such as identifying and treating depression and providing end-of-life pain control and palliative care; . . .
–           Whether physician-assisted suicide undermines the physician-patient relationship and the integrity of the medical profession by eroding patient trust in the doctor’s role as healer;…

–           Whether physician-assisted suicide opens the door to the possibility of involuntary euthanasia, as has occurred in the Netherlands, because “what is couched as a limited right to ‘physician-assisted suicide’ is likely, in effect, a much broader license which could prove extremely difficult to police and contain,” Washington v. Glucksberg, 521 U.S. 702, 733 (1997). (Blick Decision on Motion to Dismiss.)

The New Mexico judge didn’t seem to feel the need to get into all that.  In fact, the “Findings of Fact” read like C&C platitudes and propaganda rather than objective statements of fact.  Just to highlight two of them:

[Finding of Fact] 31. Where it is permitted, the application for an aid in dying prescription must be made by the mentally competent, terminally ill patient and cannot be made by a surrogate decision maker.

But the Oregon, Washington and Vermont statutes all say that your request for a lethal prescription can be made by someone else familiar with your manner of communicating, which would include the typical surrogate.  The disability experience is that doctors all too often prefer to talk to a relative or other companion rather than the person with a disability.

[Finding of Fact] 32. Where it is permitted, an aid in dying prescription must be self-administered by the mentally competent, terminally ill patient and cannot be administered by a surrogate decision maker.

As elder law attorney Margaret Dore has pointed out, assisted suicide statutes provide that the person must be competent at the time of the request for a lethal prescription, but say nothing about the time the dose is administered.  More importantly, no independent witness is required at the death, and without such witness, there’s no way to know whether the fatal drugs were administered by the person or their surrogate.

It all comes back to the conclusion I reached about the New Mexico case when I last wrote about it:

The New Mexico plaintiffs are all people who seem privileged enough to be justified in their confidence that the patient in this case will not be coerced into assisted suicide, will not be denied care that she wants, will not be treated like an unwanted burden on those around her, and is not at risk of being administered the lethal drugs without her consent.

It would be nice if everyone with a difficult illness could have the same confidence.  But in the real world, where elder abuse is on the rise, C&C’s platitudes should not distract us from our collective obligation to consider the impact on everyone, not just the privileged few.

What needs to happen next is an appeal by the New Mexico Attorney General.  Please contact AG Gary King through his Director of Communications Phil Sisneros at psisneros@nmag.gov to urge that essential next step. – Diane Coleman

Press Release: Anita Cameron and Samantha Crane Join Not Dead Yet Board

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[Editor’s note:  For a pdf formatted version of this press release, including photos of Anita and “Sam”, go here.]

As the 2014 new year begins, Anita Cameron and Samantha Crane join the Not Dead Yet Board of Directors.  The Board consists of ten members from across the United States and two from Canada.

Cameron is a long time disability rights activist who serves in the leadership of the direct action group ADAPT.  She was invited to the White House on two occasions, has met three sitting U.S. Presidents and two Vice-Presidents, helped to organize a national disability rights march to Washington, D.C.  Cameron became the first visually impaired instructor with the Community Emergency Response Team (CERT) for the State of Colorado in 2012, and in 2013, became a CERT Program Manager for the State.

Recently, Cameron commented on a public education initiative involving both ADAPT and Not Dead Yet.  “I love the fact that ADAPT and NDY have collaborated on an ad on the CBS Super Screen in New York City’s Times Square,” Cameron said. “This ad could have a crucial part in changing the way people with severe disabilities are seen by the public. I’m excited that through it, millions of people will begin to learn that life with disabilities is wonderful, that we are better off and more productive and engaged when we are in our own homes rather than institutional settings, and that our community is fighting for liberty and justice for all and invites the broader public to join us in this fight.”

Crane is a 2009 graduate of Harvard Law School and currently works as Director of Public Policy at the Autistic Self Advocacy Network’s national office.  She previously served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. L.C., and as an associate at the litigation firm Quinn Emanuel Urquhart, & Sullivan, L.L.P., where she focused on patent and securities litigation. From 2009 to 2010, Samantha served as law clerk to the Honorable Judge William H. Yohn at the U.S. District Court for the Eastern District of Virginia.

During law school Crane also interned at the Civil Rights Division of the U.S. Department of Justice, where she worked in the Disability Rights Section. She also interned at the American Bar Association’s Commission on Mental and Physical Disability, the Disability Law Center of Massachusetts and Harvard Law School’s clinical programs in special education and in disability and estate planning.

“Not Dead Yet and ASAN have, in the past, partnered together to fight the deadly perception that the lives of people with developmental disabilities are not worth living,” said Crane. “In many cases, this has led to denial of lifesaving medical care and even murder by caregivers. By joining the Not Dead Yet Board, I hope to continue and strengthen Not Dead Yet’s partnership with the developmental disability community to ensure that disabled people’s lives are valued.”

“Sam and Anita bring tremendous strengths as well as diverse backgrounds and skills to the NDY Board,” said Diane Coleman, founder and CEO of the organization.  “I’m very excited about working with them more closely in the years ahead, and know that their fellow Board members share my enthusiasm as we pursue our goals in 2014.”

Let’s Have a REAL Discussion: Bioethicists Preach, Fail to Teach on Brain Death

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By now, most readers of this blog are probably familiar with the story of Jahi McMath, a 13-year-old girl who underwent surgery on December 9, 2013 at Oakland Children’s Hospital.  During post-op recovery, she started bleeding.  Eventually, she went into cardiac arrest. She was then put on a ventilator. Two days later doctors made a determination that she was brain dead.  Between now and then, the family has been involved in legal battles to keep their daughter on the ventilator, and followed that with demands to be able to move her to a long-term care facility.  As of yesterday, the family reports that their daughter has been transported to a long-term care facility that was willing to take her.

During this time, there has been a huge amount of angry, condescending commentary from bioethicists. Art Caplan, Division of Medical Ethics at NYU Langone Medical Center, has been the most prominent bioethics pundit and writer on the situation.  (Note: several articles combine commentaries on Jahi McMath’s situation and the Texas case of a family fighting to have life-sustaining technology removed from a young woman – she carries a fetus and Texas law mandates that life-support be maintained until the fetus can be delivered, even in the case of brain death of the mother. It’s received less attention and we’re not addressing the issues in the case, which fall outside of NDY’s policy range.)

Here is some of what is being said about Jahi McMath, her family, and brain death in general:
  • From an Editorial in the Oakland Tribune: “There is no recovery from brain death. Ever. It is a uniform standard for being legally dead in California and nearly every other state.”
  • From a CNN story: “In Caplan’s view, it doesn’t do any families any good if hospitals ask them about mechanically continuing biological function in a brain dead patient. He says doctors should be more transparent about the finality of brain death.

    “It just creates the possibility of a terrible scenario like the one that’s unfolded (in Jahi’s case), where the parents don’t really understand and then start to resist any removal of machines because they just want to hope that the worst possible thing did not happen,” he said. “I don’t think it’s kind to not be clear when death happens.”

  • Art Caplan and David Magnus in Times Ideas: “Jahi and Marlese are not injured or comatose or vegetative. They are deceased. They have been pronounced dead by multiple physicians who have conducted standard tests and diagnostic procedures. When a person is dead there is no longer any possibility of ‘life support’ by any technology or machine. When a person is dead there is nowhere to transfer them to recover. When a person is dead, life support has to end since regardless of what parents, judges or legislators might want to believe, no physician can do anything to treat death.  When doctors say ‘brain dead’ instead of dead they confuse family members, the media, judges and the public. Calling someone brain dead makes it sound like they are almost dead, sort of dead, kind of dead but not really dead—which they are.”

Finally, in what he referred to in an email as a “screed,” Caplan cited the events and coverage involving the battles over Jahi McMath as one more example of growing ignorance about science in the American population.

I don’t really want to unfairly dump on Caplan here.  There have been plenty of other bioethicists commenting in the media.  And Thaddeus Pope has been covering developments regularly, sometimes with titles that refer to Jahi McMath as a “corpse.”

With all due respect, I’d like to suggest that almost every bioethicist weighing in on this story has added to the ignorance and confusion surrounding brain death.

There’s a lot the public should know in order for us all to have an informed and rational discussion about brain death and how to talk about it.  In 2012, I wrote an op-ed with NDY President and CEO Diane Coleman that was published in the Wall Street Journal.  We described one major problem with the statutes regulating brain death:

What most people are unaware of is that, under the Uniform Determination of Death Act (UDDA), hospitals get to set their own standards and specific protocols to use in making that determination. A study published in 2008 in the journal Neurology found widespread variation in protocols used in top neurology centers.

Imagine allowing individual housing contractors to decide what parts of the plumbing code they choose to implement. That’s what the UDDA has done with hospitals and determination of brain death—and it leads to the possibility that someone could be determined “brain dead” and eligible for organ procurement in Hospital A, and diagnosed as a severely injured person needing evaluation and treatment in Hospital B.

(FWIW, I know that Caplan has a copy of this op-ed and presumably read it.)

For those interested, the abstract of the study cited can be accessed here.  The article paraphrases a key part of the ironically named “Uniform” Determination of Death Act regarding who gets to set the standards for determining brain death: “In accordance with the Uniform Determination of Death Act, guidelines for brain death determination are developed at an institutional level, potentially leading to variability of practice.”  To a layman like myself, it would seem that problems in “quality control” would be an inevitable result of this deference to individual institutions.

A lot of the rhetoric being spun conflates science and law.  Editorials and bioethicists have both proclaimed that saying Jahi McMath is alive is absurd because legally she became a corpse in the eyes of the law the minute the determination of brain death was made.  I guess we’re not supposed to notice that this logic is circular.  The law says that when a determination of death is made, the person is deceased in the state’s eyes.  But the state lets individual hospitals set their own varying standards in regard to making those determinations, which means that no matter how sloppily, unprofessionally, or minimal the standards used to make the determination – a person becomes a corpse even if another facility would determine that the same person is alive.  Who would have thought that individual hospitals held – or deserved – such a high degree of autonomy?

There have also been repeated claims that there is “no recovery from brain death,” which evades the reality of those individuals who have been determined to be brain dead and “miraculously” recovered.

In 2008, there was the “miraculous” story of Zack Dunlap, who showed signs of movement shortly after being declared brain dead and being readied for organ harvesting.  His recovery at the time was hailed as a miracle – and the hospital staff that made the declaration didn’t seem to inclined to argue.  Here was my take at the time:

Me, I’m a little bothered by that particular leap of faith. Does this use of the word “miracle” simply give us permission to avoid asking bothersome questions about diagnostic procedures at the hospital – or maybe even about the “certainty” attached to the diagnosis of “brain death?”

Because calling it a “miracle” lets medical people off the hook. Calling it a “miracle” prevents us from asking if others who have been declared “brain dead” might have been like Zack Dunlap – only not as lucky as Zack, because they had no one looking to see if maybe they might be alive after all.

There have been others, too.  A 2011 article by Carol Bengle Gilbert on Yahoo.com is one of the best mainstream articles I’ve read on the complexities surrounding brain death.  She mentions Dunlap’s case – and 3 others from 2011, although not from the U.S.  Here is an excerpt from the article citing some research I was unfamiliar with:

Doctors are not consistent in declaring brain deaths. “Determining Brain Death,” published by the American Association of Critical-Care Nurses in 1999, cited a study demonstrating that only 35% of 165 doctors likely to have to assess brain death could accurately describe the legal standard. Only 42% were consistent in applying their concept of death.

I guess that those people who claim no one who was truly brain dead has ever recovered would say that Dunlap and others were misdiagnosed and don’t count.  That evades the fact that any determination of brain death – misdiagnosis or not – means that the individual becomes a corpse in the eyes of the law.  Zack Dunlap was a corpse until his “diagnosis” was revised. When making sanctimonious statements about what brain death means, we should remember that.

Another feature of the coverage of the Jahi McMath story has gone largely unmentioned.  That may be understandable since most of the commentators have been white professional males.  The vast majority of the articles, columns, blogs, etc. carry a picture of Ms. McMath – with or without her family – a young Black teenager.  You’d think that might give white professionals pause for thought about the history, mistrust, discrimination, etc. between people of color in the U.S. and the field of medicine.  It hasn’t.

So I want to share parts of  “Jahi’s Family Reflects Deep Mistrust of End-of-Life Decisions” written by Janell Ross and published on The Root:

But where Moreno sees evidence that hospitals are doing a better job communicating with black patients and their families, University of Pennsylvania legal scholar and sociologist Dorothy Roberts does not.

Hospital officials have publicly referred to Jahi as a “dead body,” insisting that treating her would be unethical, Roberts said. Stories about Jahi’s situation have implied that the family’s position is connected to scientific ignorance, irrational combativeness and superstition.

The reality is that African Americans are aware of the often limited value of black life in America, Roberts said. In early America, the value of African-American life was typically defined by what sort of loss their death or injury would cause a slave owner, said Roberts, who studies race and bioethics.

Some of the country’s earliest human experiments were conducted on enslaved black women. Beginning in the 1930s, government-funded researchers withheld treatment from patients suffering from syphilis to study the disease’s effects. And until the 1970s, several states maintained programs that forced poor, disabled and African-American women to undergo sterilizations.

In 2002 the Institute of Medicine found that African-American patients are more likely to receive undesirable medical treatments, such as lower-limb amputations, and less likely to receive lifesaving cardiac bypass treatment, dialysis and other treatments than white patients with the same health challenges, insurance status, income and age.

(This really is an excellent article – and a sadly missing part of the discussion until now. Please go read it.)

Meanwhile, all that the leading bioethicists think is necessary for the public to know is that “brain death is death” and that once you’re brain dead you’re a corpse – because the law says so.  Any of the messy debates, embarrassing misdiagnoses, professional conflicts, etc. are unnecessary for us to know, apparently.  This seems less to me like education than preaching a gospel to large audience of potential converts whose souls you want to save.

To be fair, the American Academy of Neurology issued new guidelines regarding determination of brain death in 2010.  Somehow, the Academy believes this will reduce the alarming variability that was found among institutions in the 2008 study.  The rest of us – we’re supposed to take the efficacy of the “fix” on – pardon the expression – “faith.”