Death Without Dignity: The Inevitable Consequences of Maryland's End-of-Life Option Act

"Life, although it may be only an accumulation of anguish, is dear to me; 

and I will defend it."

MARY SHELLEY

Nearly one year ago, I gave written testimony before the Maryland House and Senate regarding opposing the Richard E. Israel and Roger "Pip" Moyer End-of-Life Option Act. You can read that here:

 Intersected: On Maryland's Death With Dignity Act

Readers should also see the disturbing new study on exactly what has happened to the now perverted euthanasia laws in Europe here:

Where The Prescription For Autism Can Be Death

I am going to bring up my points of opposition to the annual reintroduction of this bill, adding this very critical point first. In the wake of the passage of or the Affordable Care Act (ACA), the rush to embrace euthanasia protocols is already having serious punitive consequences for terminally ill patients and this harm should disturb everyone. The myth of rebranding legalized assisted suicide as dignified and rolling out a new, hip lexicon of language to hide assisted suicide legislation under the guise of "empowerment" and "choice" does not change these laws opening the door to abuse, denial of insurance coverage for patients who wish to live and continue medical treatment to do so, and the expansion of the law beyond its intended scope.  With insurers going as far as flatly stating in their rejection letters to patients that they refuse coverage of life-sustaining care but will pay for euthanasia drugs, cases like those of Barbara Wagner and Randy Stroup make it quite clear that mandated assisted suicide places those with limited means in an inhumane and unacceptable ethical position that contradicts all vaunted "beautiful death"  or "choice of death empowering terminally ill patients" stories.

I oppose this revised bill.
My primary concerns:

1. Patients can request physician-assisted suicide if a doctor has diagnosed them with a terminal illness and six months or less to live. Such a prognosis is nearly impossible to accurately predict.  Please see my own story in the link above.

2. Historical evidence both here and in countries where such laws have been enforced for years show that regardless of the limitations or narrow verbiage of the legislation, said laws foster abuse, and expand to a scope beyond their original intent. Those impacted are vulnerable populations including those with disabilities the elderly, and those with a psychiatric disability.

3. The bill places medical professionals in an untenable position complicit in hastening the death of patients rather than fighting for their lives and dismisses the role of an entire branch of medicine dedicated to palliative care.

4. There is clear evidence that similar laws have already been  interpreted by insurers as a way of denying services for terminally ill patients who fit the diagnostic criteria for assisted suicide but wish to fight to continue to extend their lives, placing vulnerable patients in unethical positions while allowing insurers to push the end of life option to reduce costs.

No medical professional can accurately estimate the lifespan of any patient. Thus the inherent risk in basing a law on the idea of a medical declaration of a limited lifespan.

As I stated in my testimony last year:

" I am a resident of Montgomery County, and mother to a wonderful 13-year-old boy with multiple intellectual disabilities and nonspeaking autism.  Our son has many health challenges. I have a deep concern that if this bill becomes law, it will expand away from its intended purpose and become a danger to patients like my son.

The example of the Netherlands is a clear indicator of what happens when assisted suicide laws exist to be expanded upon. Quoting the Disability Rights Education and Defense Fund’s research into this matter:

“Herbert Hendin documented how assisted suicide and lethal injections have become not the rare exception, but the rule for people with terminal illness in the Netherlands."

"Hendin stated in Congressional testimony, “Over the past two decades, the Netherlands has moved from assisted suicide to euthanasia, from euthanasia for the terminally ill to euthanasia for the chronically ill, from euthanasia for physical illness to euthanasia for psychological distress and from voluntary euthanasia to nonvoluntary and involuntary euthanasia. Once the Dutch accepted assisted suicide it was not possible legally or morally to deny more active medical [assistance to die], i.e. euthanasia, to those who could not effect their own deaths. Nor could they deny assisted suicide or euthanasia to the chronically ill who have longer to suffer than the terminally ill or to those who have psychological pain not associated with physical disease. To do so would be a form of discrimination. Involuntary euthanasia has been justified as necessitated by the need to make decisions for patients not [medically] competent to choose for themselves.”[106]”

“Hendin has also described how the government-sanctioned studies suggest an erosion of medical standards in the care of terminally ill patients in the Netherlands: 50 percent of Dutch cases of assisted suicide and euthanasia are not reported, more than 50 percent of Dutch doctors feel free to suggest euthanasia to their patients, and 25 percent of these doctors admit to ending patients’ lives without their consent.[107] Further, he reported that, for a thousand people each year in the Netherlands, physicians have ended their patients’ lives without consulting the patients.[108]”

Our State legislature voted to make physician-assisted suicide a felony in 1999, and rightfully so. This bill is very open to the abuses and decline of palliative care happening in the Netherlands. It makes me fear for our son’s well-being and for the future of our great State. Our General Assembly is ahead of its time in many decisions it makes and laws it passes, but this bill is not a step forward. I fear it is a step off a cliff."

References and Resources:

Where The Prescription For Autism Can Be Death
http://tinyurl.com/hjleqwk

House Bill HB0404

http://mgaleg.maryland.gov/2016RS/bills/hb/hb0404f.pdf

The Furor Over Death Drugs and the Cases of Barbara Wagner and Randy Stroup

http://abcnews.go.com/Health/story?id=5517492&page=1

Disability Rights Education and Defense Fund Policy on Assisted Suicide

http://dredf.org/public-policy/assisted-suicide/

My Terminal Illness Survival Story as testimony before Maryland Congress

http://intersecteddisability.blogspot.com/2015/03/on-marylands-death-with-dignity-act.html

Flowers v Gopal: Ugly Laws, Amistad, Blind Tom Wiggins, & The Legal View of Autistic People

"From the late 1860s until the 1970s, several American cities had ugly laws making it illegal for persons with "unsightly or disgusting" disabilities to appear in public. Some of these laws were called unsightly beggar ordinances."

Ugly Laws, Wikipedia

Political cartoon stereotyping poor disabled in New York City © Library
of Congress

Today a hearing on discovery motions was scheduled to take place at  9am, in San Jose in the case of R. Flowers, Et Al v V. Gopal, Et Al.  The plaintiffs are continuing to demand a permanent injunction against the Gopal family's autistic son, despite the fact that the Gopal family no longer lives in the neighborhood and neither do the Flowers. The plaintiffs claimed that the presence of the Gopal family's child in their neighborhood dropped property values. Actually, the fact that the Flowers' were renters dropped the property value. The Gopal family owned their home. I am trying to grasp how saying a 9 year old child appearing in public can drop property values is not invoking the ancient "Ugly Laws", and how people can feel comfortable putting this on legal documents and presenting it in court in this day and age. 

The Autism Society views the potential for harm against families who have autistic loved ones as great if lawsuits of this ilk become a pattern. Sadly they never mention the harm that is being incurred by the child himself or those who share his neurology.

Some experts wonder how this case progressed at all. Quoting the San Jose Mercury News:

"Stephen Rosenbaum, a lecturer at the UC Berkeley Law School, who specializes in disability rights and is familiar with the lawsuit, said he is surprised the case has continued as long as it has."

""This is something that should never have gone to court, in my view," said Rosenbaum, who is also an associate professor at Golden Gate University School of Law. Instead, he said, it should have been resolved through an informal dispute resolution process or mediation; sources, however, say that route failed."

I do agree with professor Rosenbaum's professional opinion that an informal dispute process or mediation is the route through which this dispute between three former neighbors should have been resolved. I also believe autism advocate, parent, and attorney James Gallini is quite accurate in his observation of this case:

"This is a very dangerous lawsuit in California and, because of the legal definitions of 'nuisance' and 'public nuisance', dehumanizes our autistic citizens by defining them as something other than human to be controlled or removed and as chattel (an item of property other than real estate). The Judge in this case did enter a temporary injunction against this family and their child. In short, a restraining order to prevent "irreparable harm" to the community and property while the legal issues are being heard."

My fear is that the preponderance of recent court cases are by adjudication placing a de facto label of human chattel on people with invisible disability in general and autism in particular. One could almost define recent legal cases in disability rights case law in California, and I am thinking of cases like San Francisco v Sheehan, as echoing  structural ableism remaining from the infamous  "Ugly Laws," the first of which appeared in 1867 in, by sad coincidence, San Francisco, California. 

This is a typical example of ugly public comments left
under local news articles about R. Flowers v V. Gopal. As you can see
Ms. Schroeder takes the opportunity to vent her resentment
 of what she terms "3rd world immigrants" says "How about India footing the bill?"
and other hateful comments referring to keeping children on a leash
and  the idiotic idea that autistic children have,
and this is in all caps "NO DESIRE to play with other children.;
IT IS A FACT." She is a perfect example of the taint of ableism & ethnic biases
this case is bringing to the surface. 

By finding legal ways to strip neurodivergent people of their competence in court, our legal system erases them from their own trials, and this opens the door to a terrifying future of reverting intersected disabled members (please note the Gopal family is an ethnic minority) to the distancing and dehumanizing status of "human chattel"  at a time when a visible resurgence in  a polarized public's affection with eugenics and euthanasia is resulting in the passage of laws that threaten disabled people and their families outright. The rights of disabled people to community access and self determination guaranteed by the American's with Disabilities Act and the Olmstead decision can potentially be legally whittled away by these types of legal cases. All under the gateway guise of public nuisance litigation; all the while plaintiffs like the Flowers miseducate the public that somehow the threat is the disabled person rather than the bias at the intersection of ethnic hatred and ableism that drives the negative way intersected disabled people are treated in their own communities.

Proctors answering document in U.S.
v Amistad © National Archives

I am a Black woman, and therefore am painfully aware of what the status of "human chattel" means within American caselaw. The primary challenge to abolitionists during the attempt to defend the free African men and women captured in Sierra Leone and sold into slavery illegally, was the concept that in the United States, anyone who fit the definition of a Black slave was considered "human chattel". Despite the fact that all parties in the case of United States v. Libellants and Claimants of the Schooner Amistad agreed that these men and women were born free and were sold into slavery in violation of international laws, in our court system they were considered property. They had no voice in the series of trials on which their freedom hinged.  The case was escalated through the court system and was eventually won because "attorney Roger S. Baldwin successfully argued this case to the Supreme Court by the use of narrow, property-law based arguments rather than moralistic, broad-based attacks on slavery itself" knowing that any argument of their humanity would not sway the court to free them. In the end only 35 men survived the ordeal of years of unjust imprisonment in horrid conditions and bitter litigation to be freed and returned their homeland.This is what it means to be legally labelled "human chattel." So the successful injunction against this young child should disturb our entire community, as should the inherent violation of the child's right to privacy in the plaintiffs' demand for this child's entire school and medical records. It is a clear indication that the plaintiffs cannot otherwise meet their burden of proof and seek instead to use evidence directly related to this child's disability against him to make their case. Think about the implications of that. It implies that a person who has any invisible or psychiatric disability has no expectation of protection if someone wants to cash in on behavior related to said disability. Should treatments and supports delivered to assist a child in the classroom and at home be used against then in a case where there is insufficient event based evidence to collaborate the plaintiff's claims of public nuisance in court?

In our country, those who are different lose the legal right to any expectation of privacy for themselves and their children.

Poster for Tom Wiggins ©Word Stage

I should also discuss the case of Blind Tom Wiggins briefly because the fact that he was both born a slave and an autistic savant made the tragedy of his life that much more relevant to the case of Flowers v Gopal. The litigation for possession of Tom, whose earnings as a world renown pianist were estimated at the equivalent of $5 million dollars today, was bitter and lengthy and continued as long has he was earning money touring. Meanwhile Tom was locked up in a series of hotel rooms while a series of owners squandered his earnings. After the Emancipation Proclamation  and the end of the Civil War, Tom remained a slave. He was in fact called "The Last Slave in America" at one point. The ex wife of one of his owners finally won ownership of him by tricking his mother into suing her ex-husband's kin for her son's emancipation. Once freed, the woman convinced Tom's mother to sign guardianship of him to her. In order for anyone suing for ownership of him to keep complete control of Tom regardless of the Emancipation of all slaves, he had been declared insane and thereby legally within the category of "human chattel". Abuse of intersected autistic people through legal means is just that old and just that simple.

In fact one of the foundational issues with the way that autism as a disability is dealt with in our society is this attitude that autistic people are de facto chattel unless they continually prove their competence. This frightening attitude is at the heart of deadly results like the infamous case of Kade Hanegraaf, an autistic teen who at 14, was the victim of "debarking" surgery  because his parents saw him as "human chattel" and therefore consented to this monstrous procedure.  Please see Lydia Brown's moving essay on literal silencing for detailed information here.

I hope you can all see how critical the presumption of competence is to the entire autism community.  It continues to confound me that other parents fail to see how critical this is, and how damaging the presumption of the incompetence of our own offspring has been to our community.

In this entire litigation, we do not know:

1. Why Robert and Marci Flowers and their former neighbors insist on continuing this legal action when the Gopal family moved away from the neighborhood months ago, and the Flowers have since moved from it as well, and how this pursuit of monetary gain through legal action despite the fact that the Gopal family has done everything to accommodate the plaintiffs, including leaving their home of seven years, is not discrimination based on the child's disability;

2. What the autistic child in question's ability to communicate is, and whether he can communicate and therefore give testimony in his own defense;

3. Why there has been no mention of the child's rights under the Olmstead decision and the ABA to community access  with supports, and whether or not, once behavioral supports were put in place for this young man whenever he entered the local community, the continuance of this case actually violates of the child's right to community access.

4. Whether the court's injunction was made after the child left the community in question, which would make no sense and whether further permanent injunctions in light of the fact that both one of the plaintiff families and the defendant family no longer reside in that community, are violating their rights as well.

5. What has been done on the part of the defense team to insure the Gopal family is not being targeted  based on their ethnicity and insure no bias is present in the court proceedings against them? How much of what is going on here is simply a lack of understanding of cultural differences that have led to this escalation?

Most of what has driven this case, and what drives this type of lawsuit is the goal of monetary gain against defendants who appear wealthy. It seems past time for privileged autism families to take notice. This case is dangerous because it can give bad people the idea that they can trump up charges against autistic people who may be unable to respond or defend themselves and sue wealthy autism families for damages. It is also a dangerous byproduct of the way autism is presented by  organizations who insist on displaying autistic children and adults as helpless, raging, human chattel, thus stripping them of human rights, destroying their access to their communities and causing great harm to those who they claim to advocate for. Our community needs to urgently work to change how the public and the legal system view autistic children and adults. If we don't, our loved ones will pay the consequences.

Resources and References:
-------------------------------
R. Flowers, Et Al Vs V. Gopal, Et Al
http://tinyurl.com/njfoezw
http://www.sfautismsociety.org/blog/neighbor-lawsuit-seeks-to-declare-autistic-boy-a-public-nuisance
http://www.contracostatimes.com/breaking-news/ci_28832427/sunnyvale-neighbors-sue-banish-autistic-boys-family-claiming

San Francisco v Sheehan
http://thinkprogress.org/justice/2015/05/18/3659969/supreme-court-justices-wont-let-mentally-ill-woman-sue-police-shot/
http://www.scotusblog.com/case-files/cases/city-and-county-of-san-francisco-california-v-sheehan/

Harm from the "Human Chattel" attitude embedded in Structural Ableism
The Literal Silencing of Kade Hanegraaf
http://www.autistichoya.com/2013/09/literal-silencing.html
http://www.salon.com/2013/09/27/is_surgically_altering_an_autistic_boys_voice_cruel_or_kind/

Violation of Disabled Bodies for Caregiver convenience - The Case of Ashley X
http://content.time.com/time/nation/article/0,8599,1574851,00.html

Lifelong Violation of Human Rights: The Case of Autistic Savant Blind Tom Wiggins
http://www.blindtom.org/who_was_blind_tom.html

Kidnapped Africans as "Human Chattel" In American Caselaw:
https://www.archives.gov/education/lessons/amistad/proctors-answer.html
http://law2.umkc.edu/faculty/projects/ftrials/amistad/Ami_trialrep.html
http://law2.umkc.edu/faculty/projects/ftrials/amistad/AMI_BBAL.HTM

The Ugly Laws
https://en.wikipedia.org/wiki/Ugly_law
https://madeinamericathebook.wordpress.com/2011/01/19/ugly-or-needy/
http://www.loc.gov/pictures/item/2006681441/

On Maryland's "Death With Dignity" Act Bill SB 676/HB 1021

This is my testimony to the Maryland House of Delegates. It was personal and very difficult for me to write. No one should assume they know what it is like to be in palliative care, in a terminal ward, or be diagnosed with a terminal illness. Whatever your opinion is now, it may change should a moment like this come. In order to deal with this topic we need to change our own prejudices on the perceived limitations of human beings, their wish to live, and educate citizens throughly on living with terminal illness and not conflate disability with terminal illness before mandating any form of assisted suicide. We should also look carefully at history and data in countries who have implemented this for years. Anyway here is my statement:

Statement to the House Health and Government Operations and Judiciary Committees

Re: House Bill 1021 – “Death with Dignity”

Friday, March 6, 2015

OPPOSE

Main Concerns:

1. The legislation does not require doctors to give patients a screening for depression before providing physician assisted suicide.  

2.  Patients can request physician-assisted suicide if a doctor has diagnosed them with a terminal illness and six months or less to live. Such a prognosis is nearly impossible to accurately predict. 

3.  No doctor, nurse, or independent witness is present when the lethal dose is taken.

4.  People will pick up their lethal prescription at their local pharmacy.

5.  There is no requirement to notify family members that the patient plans on taking a lethal medication.

Thank you, Chairman Hammen and Esteemed Members of the Committee, for allowing me to share my own experiences with terminal illness, disability, and my grave concerns about the proposed legislation with you.

Pain-Free, Not Dead, Ward C, Landstuhl Army Medical Center,
December 1981

My name is Kerima Cevik.  At age 20, I found myself in ward C of Landstuhl Army Medical Center, blind, emaciated, in horrific pain, and waiting to die. Ward C was the terminal ward, and the plan was to administer palliative care while the entire medical team tried to discern what was causing my eyes to hemorrhage and my vital signs to fail before I died completely. My family in the U.S. had been told that even if my parents rushed to Germany from the U.S., I’d be dead by the time they arrived. The last sound I remembered was the sound of running footsteps and someone shouting, “I know what it is!" "Hurry!”

When I woke again I was both alive and free of pain for the first time in a year. I was told I was lucky to survive, but I would be permanently visually impaired and would probably need to wear prosthetics in one eye. A year later, my eyes recovered such that no prosthetic or assistive technology was necessary for me to manage.

At 27, on Incirlik Air Base, a specialist reviewing my latest tests and x-rays informed me I was in the final stages of Crohn’s disease and had less than six months to live. He recommended I ensure my affairs were in order and say goodbye to my loved ones, as they could do nothing to stop the progress of the disease. I did. Then I obtained a referral to Walter Reed Hospital for a biopsy and a second medical opinion from another specialist. It turns out that I was not terminally ill after all. I had been misdiagnosed.

When I was 38, a specialist treating my asthma decided to have x-rays taken of my sinuses because I was complaining of severe headaches. He discovered a large tumor under my forebrain. He referred me to other specialists and they did extensive tests on the tumor. The results of the tests were that the tumor was benign, a variety of fluid-filled growth that mimics a malignant tumor.  It was decided to monitor the tumor to see if it would expand and impair me further.

Three years later my husband and I learned that after 19 years I had entered a second, high-risk pregnancy. In the third trimester of my pregnancy, cerebral imaging showed that somehow the pregnancy had shrunk the tumor in my brain and it was completely gone. My son and I survived his birth.

I imagine that, after any of those moments when I was deemed terminally ill, had a piece of legislation such as this one been the law where I was receiving medical care, I would have met the criteria for assisted suicide. If my family had believed the initial diagnoses and pressured me, or had I entered a depression regarding any of these diagnoses, I would have been dead at 20, or 27, or 38 years of age. I am very much alive at age 53.

Medicine is not an exact science. Those who initially diagnosed me were not incompetent. They had simply never encountered a patient with my combination of symptoms who did not fit their diagnoses. No medical professional can accurately estimate the lifespan of any patient. Thus the inherent risk in basing a law on the idea of a medical declaration of a limited lifespan.

I am a resident of Montgomery County, and mother to Mustafa Cevik, a wonderful 12-year-old boy with multiple intellectual disabilities and nonspeaking autism. Our son is nonspeaking, but over time he developed his own gestural language in order to communicate his needs.  My son has many health challenges. I have a deep concern that if this bill becomes law, it will expand away from its intended purpose and become a danger to patients like my son.

The example of the Netherlands is a clear indicator of what happens when assisted suicide laws exist to be expanded upon. Quoting the Disability Rights Education and Defense Fund’s research into this matter:

“Herbert Hendin documented how assisted suicide and lethal injections have become not the rare exception, but the rule for people with terminal illness in the Netherlands."

"Hendin stated in Congressional testimony, “Over the past two decades, the Netherlands has moved from assisted suicide to euthanasia, from euthanasia for the terminally ill to euthanasia for the chronically ill, from euthanasia for physical illness to euthanasia for psychological distress and from voluntary euthanasia to nonvoluntary and involuntary euthanasia. Once the Dutch accepted assisted suicide it was not possible legally or morally to deny more active medical [assistance to die], i.e. euthanasia, to those who could not effect their own deaths. Nor could they deny assisted suicide or euthanasia to the chronically ill who have longer to suffer than the terminally ill or to those who have psychological pain not associated with physical disease. To do so would be a form of discrimination. Involuntary euthanasia has been justified as necessitated by the need to make decisions for patients not [medically] competent to choose for themselves.”[106]”

“Hendin has also described how the government-sanctioned studies suggest an erosion of medical standards in the care of terminally ill patients in the Netherlands: 50 percent of Dutch cases of assisted suicide and euthanasia are not reported, more than 50 percent of Dutch doctors feel free to suggest euthanasia to their patients, and 25 percent of these doctors admit to ending patients’ lives without their consent.[107] Further, he reported that, for a thousand people each year in the Netherlands, physicians have ended their patients’ lives without consulting the patients.[108]”

Our State legislature voted to make physician-assisted suicide a felony in 1999, and rightfully so. This bill, as it has been introduced, is very open to the abuses and decline of palliative care happening in the Netherlands. It makes me fear for our son’s well-being and for the future of our great State. Our General Assembly is ahead of its time in many decisions it makes and laws it passes, but this bill is not a step forward. I fear it is a step off a cliff.

Thank you for your time and consideration.

Mrs. Kerima Cevik