I depend on life-support to stay alive. Why I oppose assisted suicide laws

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[Ed. Note: This guest column by Diane Coleman appeared in nj.com on October 26, 2018, and in the New Jersey Star Ledger print edition on October 29.]

I have an advanced neuromuscular condition and must use breathing support with a mask 18 hours a day. As a severely disabled person who depends on life-sustaining treatment, I would be able to qualify for assisted suicide at any time where it is legal.

If I became despondent, for example if I lost my husband or my job, and decided that I wanted to die, I would not be treated the same as a nondisabled, healthy person who despaired over divorce or job loss.

If anyone doubted that someone like me would qualify for assisted suicide in a state like Oregon, those doubts were laid to rest in December 2017 when an Oregon Public Health Department official clarified in writing:

“Patients suffering from any disease (not just those that typically qualify one for the DWDA [Death With Dignity Act]) may not be able to afford some treatments or medication, and may choose not to pursue some treatments or take some medication for personal reasons. . . . If the patient does not receive treatment or medication (for whatever reason) and is left with a terminal illness, then s/he would qualify for the DWDA.”

In the decade leading up to the passage of Oregon’s assisted suicide referendum in 1997, proponents often revealed their view that people with disabilities should be eligible. Two thirds of “Dr. Death” Jack Kevorkian’s body count were people with non-terminal conditions like multiple sclerosis.

The Hemlock Society contributed to his legal defense fund.

When the Hemlock Society morphed into “Compassion and Choices,” the messaging shifted, partly in an effort to exclude disability rights organizations from the public debate. Assisted suicide is only for people expected to die within six months, they said. The person must self-administer the lethal drugs, so no one else could kill them, they said.

Any reasonably trained lawyer should be able to see the absence of meaningful patient protections in assisted suicide bills. It took a decade to pass the Washington State statute that came next.

All along, disability groups have pointed out the inherent discrimination and empty pretense of safeguards in these bills. Why does everyone else get suicide prevention, while old, ill and disabled people get suicide assistance? How could a doctor who’s known a person for an average of 13 weeks know if they are being pressured to ask for assisted suicide?

Reported reasons for requesting assisted suicide pertain to disability, chronic or acquired due to illness.

Three of these reasons (feeling a loss of autonomy, loss of dignity, feelings of being a burden) could be addressed by consumer-directed in-home care services. However no disclosure or provision of such services is required. Basically, the law operates as though the reasons don’t matter, and nothing need be done to address them.

People who need home care shouldn’t be treated as disposable.

Assisted suicide proponents are fond of saying that many people don’t go through with it, but the lethal drugs give them peace of mind. What if some of the many who change their mind have family members who are not happy about it?

If the only other person present at the end is a greedy heir or tired caregiver, there are no safeguards to determine whether they self-administered the lethal drug or were cajoled, tricked or forced.

Although these and other obvious weaknesses persist in New Jersey’s assisted suicide bill (AB1504), the New Jersey Law Journal not only endorses it, but openly advocates expanding it to include active euthanasia and eligibility for people who are not expected to die in six months. No more incremental strategy, no need to hide the broader agenda.

Throughout last summer, people in wheelchairs with the group ADAPT were dragged out of Congressional hearings and arrested, leading successful efforts to save healthcare for millions of Americans. This same group asserts that “Assisted suicide is not about relieving the suffering of the dying: it is an expression of the most toxic and deadly form of ableism.”

We urge New Jersey lawmakers to reject ableism, to look behind the public relations images of assisted suicide and consider the dangers to the many elders, ill and disabled people who are not safe from mistake, coercion and abuse.

Diane Coleman is the president and CEO of Not Dead Yet, a national disability rights group which she founded in 1996 to give voice to disability rights opposition to legalization of assisted suicide and euthanasia.

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.