NDY & ADAPT Submit Public Comments To Virginia Commission Opposing Potential Assisted Suicide Legislation

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The Virginia Joint Commission on Health Care has requested public comments by close of business on October 15 concerning several policy issues, including one option that would recommend the introduction of assisted suicide legislation. It’s called  Policy Option 2, worded as follows:

Introduce legislation to amend the Code of Virginia to include a Medical Aid-in-Dying statute that mirrors California’s EOLOA statute, with the following additions: a. when informing patient of alternative to MAID, attending physician must include information about any possible treatments for the underlying disease, b. attending physician must attest that patient enrolled in hospice or was informed of EOL services, c. if patient is in nursing facility, one witness may be person designated by facility, d. adopt rules to facilitate collection of information regarding compliance, e. provide an online guidebook and establish training opportunities for medical community to learn about the MAID process and medications that may be used (NOTE: Language will be provided to members and placed on the JCHC website 5 business days prior to the November Decision Matrix meeting)

On October 11, NDY President Diane Coleman submitted a comment (to jchcpubliccomments@jchc.virginia.gov) which began:

I am submitting this comment as a person with an advanced neuromuscular condition who uses breathing support 18-19 hours a day. I have personal experience with misdiagnosis and the uncertainty of terminal predictions by doctors. I am also the founder and President of Not Dead Yet, a national disability rights group, with members in Virginia, that opposes legalization of assisted suicide because it is discriminatory and poses unacceptable dangers to elders and people with disabilities with or without terminal diagnoses.

This comment uses the term “assisted suicide” for several reasons. Merriam Webster defines suicide as “The act or an instance of taking one’s own life voluntarily and intentionally.” As the AMA Council on Ethical and Judicial Affairs stated in its report on the issue this year, “The terms ‘aid in dying’ or ‘death with dignity’ could be used to describe euthanasia or palliative/hospice care at the end of life and this degree of ambiguity is unacceptable for providing ethical guidance.”[i] Assisted suicide proponents understandably prefer to call it “aid in dying” because it polls better. They attempt to justify the name change by asserting that the person is already dying. While some may be dying, others are not. More importantly, with assisted suicide, the cause of death is not a disease, but a lethal overdose.

My Personal Story of Mistaken Prognosis . . .

To continue reading the NDY comment, go here.

On October 12, Bruce Darling submitted a comment on behalf of ADAPT which stated:

As an organization working to ensure disabled people’s right to build our lives in the community, legislation making it legal for physicians to help end our lives is deeply troubling to ADAPT. While the proponents of this legislation will tell you that it is not about disabled people, only people with terminal illness, let me assure you that every single person who qualifies under that definition is a disabled person. Not every person with a disability is terminally ill, but every person who is terminally ill is or will eventually become a person with a disability. There is no person with a terminal prognosis who does not also have, or acquire, an impairment which significantly affects their ability to perform a major life function (such as eating, sleeping, toileting, or walking).

Accordingly, physician assisted suicide is only provided to people with disabilities, by definition. This is discrimination. People with disabilities have fought hard for the right to live as equals, to live and receive services in the community, to have equal access to housing and transportation and employment opportunities. In an ableist society, these rights are continually denied to us. Yet this same society wishes to extend to us the “right” to end our lives. Equal rights, means equal access to suicide prevention, not the false “compassion” of suicide assistance.

… Assisted suicide is not about relieving the suffering of the dying: it is an expression of the most toxic and deadly form of ableism, which holds that life with a disability is not worth living. The lives of people with disabilities, whether terminal or non-terminal, do matter, and are worth living. (Emphasis added.)

To continue reading the ADAPT comment, go here.

If you would like to submit your own comment by October 15 at close of business (even just saying that you oppose Option 2), and/or support NDY’s and ADAPT’s comments, please email  jchcpubliccomments@jchc.virginia.gov.

[i] REPORT OF THE COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS 5-A-18, Page 2, https://www.ama-assn.org/sites/default/files/media-browser/public/hod/a18-ceja5.pdf

Neurology Guidelines Push Back Against “Rush To Judgment” In Brain Injury Cases

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On September 16, ABC News in Oakland, California reported on a hospital’s threat to remove breathing support from six-month-old Kingston Holmes. The infant needed a ventilator due to a brain injury following a cardiac arrest at home.

The first thing I ask when I read a story like that is when did the cardiac arrest occur? According to the news report:

Kingston Holmes, just 6 months old, has been at UCSF Benioff Children’s Hospital in Oakland, on a breathing machine since last month. The infant suffered a severe brain injury from cardiac arrest while at home on Aug. 5.

His parents said the child was perfectly healthy right before the incident. (Emphasis added.)

So, slightly less than six weeks after the brain injury, the hospital gave a letter to Kingston Holmes’ parents, “stating ‘his breathing machines will be turned off on Monday, September 17 at 1pm’ due to irreversible brain injury.”

Six weeks is too early to render a prognosis on an “anoxic” brain injury, the type that occurs when something like a cardiac arrest deprives the brain of oxygen.

Recently, the American Academy of Neurology (AAN) issued new clinical practice guidelines for assessing disorders of consciousness. Here are some relevant excerpts from recommendation 7 concerning “vegetative state” (VS) [BTW – We strongly object to that term, which seems designed to influence people to think of the individual as a plant rather than a human.]:

The 1994 AAN Multi-Society Task Force defined VS as “permanent” three months after a nontraumatic insult leading to VS and 12 months following a traumatic injury, acknowledging that unexpected recoveries will occur after these times but that these cases will be rare and typically associated with severe disability.

So the old guidelines set the minimum at three months, not six weeks. But the new guidelines go much further:

A reanalysis of the Task Force data completed by nonaffiliated authors concluded the estimated rates of late recovery for traumatic and nontraumatic VS were unreliable. . .

When considering patients with nontraumatic VS/UWS for at least one month, recent studies suggest that some patients may experience ongoing recovery after three months. Meta-analyses performed in this systematic review found it is possible that 17 percent … will recover consciousness (emerge from VS/UWS) at six months, and that after six months, it is possible that an estimated 7.5 percent …may recover consciousness from nontraumatic VS/UWS. . . .

Although the majority of patients who remain in VS/UWS across the first three (after non-TBI) and 12 months (after TBI) post injury will remain in this condition permanently, a substantial minority will recover consciousness beyond this time frame. While most of these patients will be left with severe disability, functional outcome ratings indicate that some will regain the ability to communicate reliably, perform self-care activities, and interact socially.


To read more from the guidelines, go here.

So the “irreversible” prognosis given to Kingston Holmes’ parents six weeks post anoxic brain injury was not remotely consistent with the American Academy of Neurology guidelines. Perhaps that is one reason why UCSF Benioff Children’s Hospital capitulated to the parents’ objections to the early removal of life support and transferred him to Stanford Children’s Health, as reported by local ABC News on the Monday his breathing support had been scheduled to be stopped.

I haven’t been able to find out what happened since then. But I wanted to share the information from the American Academy of Neurology, because we read other stories and even receive calls from families in similar situations. All too often, doctors and hospitals make pronouncements that someone is permanently unconsciousness that are not at all consistent with AAN guidelines. This has been true under the previous guidelines which called for waiting periods of “three months after a nontraumatic insult leading to VS and 12 months following a traumatic injury,” and will be even worse going forward unless doctors and hospitals stop rushing to judgment. It’s bad enough when they ignore the disability rights perspective, but no one should ever defend doctors who ignore the experts in their own field.

I have two more things to share for those who are interested in this subject. First, one of the leading neurologists on this topic, Dr. Joseph Fins, wrote a book called “Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness”. Dr. Fins brings up the Americans with Disabilities Act in this context.

And here is a 5-minute video explaining in very understandable terms how brain imaging technology can be used to establish communication with people previously thought to be in a “vegetative state”. According to the video, out of 200 people tested, 20 percent were reportedly found to be conscious and able to communicate.

—Diane Coleman

 

Anita Cameron: The Criminalization of Pain

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Our country is in the midst of an opioid crisis which has resulted in what I call the criminalization of pain.

Many people who depend on opioids and similar medications to manage pain are now finding that their access to them has been limited and they are being subjected by doctors to drug testing and pill counting. They feel as if they are being treated like criminals, charged with the crime of having chronic pain.

It is common for those living with painful conditions to be treated as addicts and drug seekers when they have to go to the emergency room. Some who live with chronic pain, myself included, resist going to avoid this treatment.

As more and more people experience poor pain management, it is easy to see that in states where doctor assisted suicide is legal, there will be an increase in requests for lethal drugs. How ironic that it may become easier in some places to get a prescription to die than one to relieve pain.

Unfortunately, as some states have no requirement to keep records of why assisted suicide is sought, that information will be difficult to obtain. In other states, like Oregon, pain, or the fear of it, was listed as a reason for requesting assisted suicide, but it’s impossible to know whether those cases involve actual current pain or fear of future pain.

While assisted suicide laws are only supposed to affect people determined to be terminally ill, with six months or less to live, loopholes in the law allow people whose chronic conditions would become terminal with no treatment, to be eligible for assisted suicide. As people lose access to healthcare, medications, and pain management, assisted suicide requests are likely to increase.

The opioid crisis and the resulting criminalization of pain, and assisted suicide are a deadly combination. Disabled people and seniors from communities of color and poor people will be especially vulnerable to assisted suicide due to disparities in healthcare delivery and the tendency of the medical profession to devalue their lives and undertreat their pain.

Policymakers should be working to increase access to pain management and palliative care, not enacting laws that allow doctors to kill us. Having pain shouldn’t be a crime whose penalty is death.

Berkshire Eagle Published John Kelly’s Excellent Letter!

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Letter: Case for ‘death with dignity’ collapses under scrutiny

Posted 

To the editor:

I write to respond to the oped by John Berkowitz and three Western Massachusetts legislators in support of assisted suicide bill H.1994 (Eagle, Sept. 11).

Unsolvable problems with assisted suicide include the fact that terminal diagnoses are often wrong. Studies show that between 13 percent and 20 percent of people so diagnosed are not dying, and may live years or even decades longer. As examples, the late Sen. Ted Kennedy lived a full year longer than his terminal diagnosis of two to four months, while Florence resident John Norton credits the unavailability of assisted suicide for decades of good life after a mistaken prognosis.

Assisted suicide is a boon to insurance companies, as it instantly becomes the cheapest “treatment.” (Search for stories of Californian Stephanie Parker and Nevada doctor Brian Callister.)

Against the writers’ claim that there hasn’t been one documented case of abuse, I encourage readers to search for Oregonians Thomas Middleton (financial abuse), Wendy Melcher (a trans woman), and Kathryn Judson (physician pressure).

The bill requires no independent witness at the death, so the supposed safeguard of “self-administration” is toothless. Especially vulnerable will be the 10 percent of Massachusetts seniors estimated to be abused every year, almost always by family members. A caregiver or heir to an estate can witness a person’s request, pick up the prescription and then administer the lethal dose without worry of investigation — the bill immunizes everyone involved.

The writers say the bill is necessary to prevent “great pain and unrelieved suffering” at the end of life, but official reports from Oregon and Washington show that the top five reasons to request assisted suicide do not include pain, but rather “existential distress” (New England Journal of Medicine) over such issues as dependence on others, loss of abilities and feeling like a burden.

We disabled people reject the prejudice that physical dependence makes our lives undignified. Assisted suicide exacerbates social class distinctions. Support is concentrated in wealthier white communities such as the Pioneer Valley, while opposition is centered in communities of color and the working class. In 2012, black and Latino voters opposed assisted suicide by more than 2 to 1, effectively defeating assisted-suicide ballot Question 2. People historically disrespected and neglected by our health care system are rightly suspicious of the power to prescribe death.

The Legislature should continue rejecting a bill that would push vulnerable people toward early deaths.

John B. Kelly,
Boston

The author is director of Second Thoughts Massachusetts: Disability Rights Activists Against Assisted Suicide.

Lisa Blumberg: The Anonymous Three: Child Euthanasia in Belgium and Elsewhere

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The Belgium Federal Commission on the Control and Evaluation of Euthanasia in its most recent report of Belgium euthanasia statistics stated that between January 1, 2016 and December 31, 2017, three children died by lethal injection under the country’s euthanasia law. They were a nine year old with a brain tumor, an eleven year old with cystic fibrosis and a seventeen year old (probably a boy) with Duchenne muscular dystrophy. (1) We know nothing else about these persons. We don’t even know whether each of them had involved parents or if one or more had guardians. In both life and untimely death, they are reduced to age and general diagnosis. As individuals, they are given no backstory. They are profoundly anonymous.

It calls to mind that in 1980s America, infants who were denied basic medical care and nourishment due to disability were called “Baby Does”. (2)

Belgium’s euthanasia law, as amended in 2014, allows children of any age to opt for a lethal injection provided certain criteria are met. A doctor must state that the child is “in a hopeless medical situation of constant and unbearable suffering that cannot be eased and which will cause death in the short term.” Another doctor who is a psychiatrist must opine that the child understands what euthanasia is and is not “influenced by a third party”. Parental consent must be obtained.

These rules have been characterized as very strict (3) but they implicitly allow the two doctors and the parents to drive the process. A child can be killed if his doctor judges that he is embroiled in hopeless suffering and will die soon, the parents agree that the child would now be better off dead, and the child buys into this enough that the second doctor – who knows the judgment of the first doctor – can attest the child is acting of his own free will. (I call this the domino theory). Did something like this happen to any of the anonymous three? We just don’t know.

All the criteria are subjective. For example, what is the dividing line between a child being influenced in her decision and not being influenced? The Conversation Project in the U.S. suggests that one way to elicit a “seriously ill” child’s views on end-of-life care is to discuss heaven. (4) Will bringing up heaven when speaking about options influence a nine year old who may view heaven as Disneyworld? Might an eleven year old be influenced if she reads an article about how much it costs to treat kids like her? Would knowing that your parents would consent to euthanasia if you wanted it influence a seventeen year old? It is enough to make a psychiatrist’s head spin. What underlines a finding of constant suffering? Would a doctor ever equate the disability associated with a condition with suffering? Would suffering associated with a lack of pain management or with treatment delivered in a needlessly invasive way ever be erroneously attributed to the child’s condition rather than to a deficiency in medical practice? Until quite recently, babies were operated on without anesthesia in the United States.

Luc Proot, a member of the Belgian Commission, said in regard to each of the anonymous three, “I saw mental and physical suffering so overwhelming that I thought we did a good thing.” (5)

Some things are strange about this statement. It suggests that Proot met each of the kids. Instead, as part of his official role, he read the case file on each child after they died – case files written by the doctors involved in the euthanasias and whose identities like the identities of the children were withheld. (6)

Proot said “we did a good thing.” This seems like an acknowledgment that the children, rather than being beneficiaries of children’s rights and in charge of their destinies, were acted upon.

Lastly, there is no mention of the kids being close to death.

In Belgium, euthanasia is available to a wide swath of the adult population. To be sure, those with terminal illness can request the needle but so can people with two or more incurable conditions, neither of which is life threatening, as well as people with dementia or psychiatric disorders. In 2017 there were 375 cases of reported euthanasia of people whose deaths were not expected in the near future or 16.2% of all cases of reported euthanasia. (7)

With children though, euthanasia is supposed to be restricted to cases where death is near. There is no way to speculate on how far along the 9-year-old’s brain tumor was but there is a good chance that the 11-year-old and 17-year-old were not inevitably dying. Today, cystic fibrosis and Duchenne muscular dystrophy are chronic, disabling diseases but with proper medical management, they don’t tend to be fatal in childhood. The median life expectancy of a child born in the United States with cystic fibrosis is now 43 years and that doesn’t factor in the scientific advances that are likely to occur. (8) Guys with Duchenne often live through their 30s and sometimes into their 40s and 50s. (9) To put this into context, the average life expectancy for men and women in the United States in 1917 was 48 and 54 years respectively and this was before the great influenza epidemic where average life expectancy really plummeted. (10)

Were their special circumstances leading the doctors of the eleven-year-old and the seventeen-year-old to conclude they were both close to death? We just don’t know. Had the children had access to reasonable and empathetic care for their condition? We just don’t know. Were these instances where the doctors conflated ongoing disability with a terminal state? We just don’t know.

Parents usually want the best for their offspring but it is naïve to assume that the need for parental consent is a foolproof safeguard. Doctors are authority figures. They steer parents just as parents steer their children. When Stephen Drake was born, the doctor who injured him through improper use of forceps told his parents that the odds were 100 to 1 against him living through the night, and the odds were a million to one against him not being a “vegetable” if he did survive. Stephen has written, “The odds the doctor cited for my survival and recovery were almost certainly made up on the spot and were aimed at getting my parents to ‘accept’ my death as a good, if not clearly inevitable, thing”. (11) Fortunately for us all, his parents rejected the suggestion but there may well have been other cases where this doctor succeeded in using a speculative prognosis to convince the parents to “let nature take its course.”

In the 1980’s, the groups who opposed any legal protections for disabled infants in hospitals -mainly medical groups – argued that parental autonomy was paramount. Nevertheless, one pediatrician told me that as long as she evidenced enough concern for child and family, she could generally get parents to agree to almost anything. She felt that parental autonomy was quite often a sham.

Of course, there have been cases like the Charlie Gard case in Britain where parents have indeed wanted life sustaining care for their child and have been opposed by doctors and hospitals.

Why was parental or guardian consent given for the euthanasia of the anonymous three? We just don’t know.

In the last analysis, all that can be said about the fate of the anonymous three is what Charles Lane said in his opinion piece in the Washington Post, “the Belgian public’s support for euthanasia remains undiminished. The precedent for euthanizing children has been established, and more will almost certainly receive lethal injections this year, next year and the year after that.”(12)

As for the Baby Doe controversy, it was never resolved, just submerged. Food, water and antibiotics in hospitals have been redefined as life support and extraordinary care, depending on the circumstances.

As a young professional woman in the 1980s, I had the wind knocked out of me when I learned there was no social consensus about the right of people with disabilities to survive early childhood. I would like to say to the young people with disabilities of today, there is a resistance. Older people with disabilities are working hard to make you safe in medical settings. We will be passing the torch to you.

FOOTNOTES

  1. http://alexschadenberg.blogspot.com/2018/08/euthanasia-in-belgium-social-experiment.html?utm_source=Euthanasia+Prevention+Coalition+Contacts&utm_campaign=bc1ff5964a-EMAIL_CAMPAIGN_2018_08_31_02_01_COPY_03&utm_medium=email&utm_term=0_105a5cdd2d-bc1ff5964a-198574557

https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?utm_term=.0310c1b7da8d

  1. http://www.raggededgemagazine.com/0700/0700ft1.html
  2. https://www.cbsnews.com/news/child-dies-by-euthanasia-in-belgium-where-assistance-in-dying-is-legal/
  3. https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-StarterKit-Pediatric-English.pdf
  4. https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?utm_term=.0310c1b7da8d
  5. Ibid.
  6. http://alexschadenberg.blogspot.com/2018/08/euthanasia-in-belgium-social-experiment.html?utm_source=Euthanasia+Prevention+Coalition+Contacts&utm_campaign=bc1ff5964a-EMAIL_CAMPAIGN_2018_08_31_02_01_COPY_03&utm_medium=email&utm_term=0_105a5cdd2d-bc1ff5964a-198574557
  7. https://www.cff.org/CF-Community-Blog/Posts/2017/Survival-Trending-Upward-but-What-Does-This-Really-Mean/
  8. https://www.mda.org/disease/duchenne-muscular-dystrophy
  9. https://www.google.com/search?ei=aH2aW-S0Os-izwKWjrrYBw&q=life+expectancy+1918&oq=life+expectancy+1918&gs_l=psy-ab.3..0l2j0i22i30l8.85101.91288..96229…0.0..0.99.366.4……0….1..gws-wiz…….0i71.HU__69ZKIfI
  10. http://notdeadyet.org/2012/03/stephens_story.html
  11. https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?utm_term=.0310c1b7da8d