John Kelly Examines Legislators’ Arguments Leading to Victory in Maine

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Not Dead Yet testimony featured in defeat of Maine assisted suicide bill

The situation was tense. The Maine State Senate had pulled off a stunner by passing assisted suicide bill LD 347 by a vote of 16-15. We were nervous because two years ago, it was the Senate that saved the day by stopping a bill passed by the House. Now we had to place our hopes in the House to prevent a huge win for assisted suicide proponents. Even though Gov. LePage promised to veto any bill coming out of the legislature, assisted suicide proponents would be able to confidently claim victory in the wait for a supportive governor.

The entire House took the bill up on May 23, and after a short debate, defeated LD 347 by a vote of 85-61. Relief! It was especially gratifying because a number of legislators used arguments from Not Dead Yet and Second Thoughts testimonies against assisted suicide to oppose the bill.

Rep Deborah Sanderson of Chelsea, Maine, used Not Dead Yet and Second Thoughts Massachusetts’ testimony in two separate short speeches, which we have now captioned and put up on YouTube. She stressed two things, the inevitability of misdiagnosis cutting short people’s lives (captioned video here) and the impossibility of knowing whether someone actually self-administered the drugs because no witness is required at the death (captioned video here).

Rep Sanderson referred to one of our best examples of how legalized assisted suicide puts people at risk who are not dying. Sanderson did not mention Jeanette Hall by name, but described the letter she wrote to the Boston Globe. Jeanette wrote that she voted for assisted suicide, and when she received her own terminal diagnosis, she asked her doctor for the lethal drugs. But her doctor persuaded her to try more treatment, and Jeanette learned that she wasn’t dying after all! Now more than a decade later, Jeanette urges people to reject assisted suicide.

Rep Stacey Guerin of Glenburn, Maine, made two strong arguments against the legalization of assisted suicide. First, it increases opportunities for and the likelihood of elder abuse. She refers directly to Not Dead Yet President and CEO Diane Coleman on the ease with which an abusive caregiver could engineer a suicide. She brought up the inevitability of suicide contagion, as adolescents compare their own troubles to the accepted suicides of older people. Her captioned video is here.

Rep Beth Turner of Burlington, Maine, rejected proponents’ arguments that it is all about individual choice. She followed Not Dead Yet in declaring the obvious: “We don’t live in pure isolation. One person’s decision to end their​ life and one legislator’s decision to sanction it would surely impact all of us. It would also send a message that some people are less valued, less worthy. That some lives deserve suicide assistance rather than suicide prevention.” Her captioned video is here.

It’s now been 21 years since Not Dead Yet formed to fight Jack Kevorkian and the death machine he used on distraught disabled people, more than half of whom were not terminal in any way. We swarmed the trial that finally put him behind bars. We have gone from being ignored to being quoted during legislative debates. So please keep writing letters, op-ed’s, and testimony – our hard work is paying off!

Four Years After His Death, Disabled 8-Year-Old’s Death in Organ Donation is Under Investigation

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The LA Times is reporting that the  death of a disabled 8-year-old boy in 2013 is currently under investigation by Los Angeles police and the DA office.

Back in 2013, Cole Hartman’s father found his son with his head submerged in their washing machine. Cole went into cardiac arrest, but paramedics were able to resuscitate him.

From the story:

Physicians at UCLA’s pediatric intensive care unit told Cole’s family that the child was not brain-dead but “would never recover normal neuro function and … could never awaken,” according to an entry in his medical chart.

The Hartmans decided to take Cole off life support and donate his organs. He was removed from the ventilator and, 23 minutes later with his family at his bedside, pronounced dead by an anesthesiologist.

Before getting into why there’s an investigation into Cole’s death – and why it’s happening four years after his death – here’s some info on Donation after Cardiac Death (DCD),  and what we call “rush to judgment.”

First, there are long established protocols regarding waiting times for recovery in brain injury cases, as were shared in this blog post:

I recently attended a medical ethics seminar held at the Rehabilitation Institute of Chicago that reaffirmed medical practice guidelines about brain injury. Doctors continue to agree that it is necessary to wait before they can predict brain injury outcomes with reasonable, though they also admit not total, certainty. For traumatic brain injury (e.g. car accidents), the waiting period is one year. For anoxic brain injury (e.g. stroke or heart attack), it’s three months.

And, experts say that children are more likely to recover from brain injury than adults, as discussed by doctors regarding the “end of life” case of Haleigh Poutre. Here are excerpts from a story by Joe Shapiro after 11-year-old Haleigh Poutre’s brush with an “end of life” judgment:

Dr. JANE O’BRIEN (Chief Medical Director, Franciscan Hospital for Children): Children’s brains are amazing. They are very plastic. There is often a lot of potential to reach levels that nobody expects.

SHAPIRO: There are 39 children living on the inpatient unit. They’re kids but with a difference. Most depend upon some piece of technology.

Dr. O’BRIEN: Many of them would have tracheostomy tubes or tubes that they need in order to breath. They might be attached to ventilators. Many of them rely on feeding tubes into their stomachs in order to get the nutrition that they need.

SHAPIRO: Typically, a child stays at the hospital for about three months.

Dr. O’BRIEN: People hear about children when they have accidents at the time because that’s often the newsworthy story. But most of the children who come into our hospital, go back out into the community and most of them, they’re able to go to school. They have much more recovery, I think, than most people realize is possible.

Also this:

SHAPIRO: Bernat’s a neurologist at Dartmouth Hitchcock Medical Center. He’s not the girl’s doctor. But he says its unusual to give up so quickly on a child.

Dr. BERNAT: In this case this girl has been in a vegetative state for somewhat under five months from trumatic brain injury. And we know that those can recover in up to a year. Or sometimes too, people will spontaneously recover awareness.

(note: the state actually sued for treatment removal ten days after Poutre’s injuries – the court fight over the removal of treatment took five months.)

Two factors that may exacerbate any early judgments to remove life-supporting treatments are the demand for organs for transplant and the increased adoption of “Donation after Cardiac Death (DCD).”

DCD is a protocol in which someone who is ventilator-dependent is taken off breathing support and usually given some sort of pain killer. In order for organs to be usable for donation, breathing and heartbeat have to cease within 30-60 minutes. It’s most often used with newly brain injured people. Not Dead Yet has been involved in stemming attempts to expand the protocol. This is all set against a very real context in which even a leading bioethicist and expert on consciousness was sounding an alarm regarding the aggressiveness of organ procurement reps in approaching families of patients recently brain-injured.

So much – for now – on organ procurement protocols – which have changed from the “brain dead” protocol most people are somewhat familiar with – although there are significant problems with “brain death” and how it’s determined.

What’s the basis for a criminal investigation into this child’s death? And why did it take four years?

From the LA Times again:

Detectives opened the case earlier this year. Denise Bertone, a veteran coroner’s investigator who specializes in child deaths, first flagged the use of fentanyl at the time of Cole’s 2013 autopsy and campaigned for years to persuade supervisors to reexamine the case. Her efforts resulted in the coroner’s office amending Cole’s death certificate in December to add fentanyl toxicity as a “significant cause” of his death.

But back in 2013, her Supervisor refused to add “fentanyl toxicity” as a cause of death or even to test fentanyl toxicity.  Recently, a new Supervisor took over for the previous one and everything changed, according to the Times:

After Fajardo left office last year, Bertone approached the then-interim chief medical examiner, Dr. Lakshmanan Sathyavagiswaran, who agreed to reopen the case. A pediatric toxicologist brought in as an expert by the coroner’s office found that the fentanyl “was responsible for the death of this patient” and that the dose was “not consistent with a therapeutic dose for the management of pain and discomfort,” according to excerpts of his findings quoted in a coroner’s report.

As a result, Sathyavagiswaran changed Cole’s death certificate in December to add fentanyl toxicity to the list of causes of death and asked for a law enforcement investigation. The manner of death — whether it was an accident or a homicide — remains listed as “undetermined” pending the outcome of the investigation.

There was another criminal investigation of a similar organ procurement in Californian. Ruben Navarro, like Cole Hartman, had developmental disabilities. One has to wonder – were their potentials for recovery written off early because they were already – as some medical professionals see disabled people – “damaged goods”?

Delaware NDY’s Daniese McMullin-Powell: Testimony Against Assisted Suicide Bill

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Photo: Red-haired woman sitting in wheelchair with legs crossed, holding leash with service dog sitting next to her.

House Health and Human Development Committee  
June 7, 2017
Daniese McMullin-Powell, Delaware Not Dead Yet
OPPOSE HB 160, End of Life Options

Doctors will be prescribing barbiturates with instructions to ingest 100 pills on an empty stomach to cause your death by overdose, and then, falsify your death certificate.

Diagnoses of terminal illness is too often wrong, leading some to give up on treatment and lose good months or years of their lives.  A pro suicide group will become your best friend to help you Doctor shop for a second opinion or even a first one if you want. Less than 5% will receive counseling.

A woman I helped get out of a facility came to live with me. She had less than 6 months to live, so had hospice services. She moved to her own apartment 7 months later. She still lives in Wilmington 15 years later. Cheap physician assisted suicide wasn’t available.

My Mom and Dad were both on hospice.  My Father exceeded his expiration date by a few months. He had good meds to control pain. When he passed, my Mom moved in with me.  She remained on hospice for another year or so. She even went on vacation twice to Florida. She passed away in my home 8 days after baking cookies and having a wonderful Xmas with all the great grand kids. If this poison was available in 2011 she may not have had those last good times. She always thought she was a burden… she was not.

Pain seems to be overrated as a reason to die sooner than later. In a 2015 report from Oregon, the top reasons for PAS are loss of ability to do things you enjoy, loss of autonomy and dignity, loss of control of body functions and dependence on others and… feeling to be a burden, all disability issues like some of us face every day. Down the line, pain or fear of pain is listed as a reason.

Society underrates quality of life for people with disabilities. Will we have suicide prevention or suicide assistance?

Calling this a choice or a right is false. It is the state and doctors that will determine who is eligible to die.  Besides we have always had choice, suicide is not illegal in the United States and there are many methods.

Insurance companies, including Medicaid in Oregon, have indeed denied expensive treatments for some, yet offer to cover cheaper assisted suicide.

There is a potential for abuse or coercion. Not all relatives, friends and caregivers have loving concern, and who would know?  All the so called safe guards are hollow and not enforceable.

There are no resources or authority to investigate assisted suicide cases in Oregon.  Hence, “there are no problems in Oregon.”

Vote NO to HB 160, so we can sleep at night and have a peaceful summer

Note: The Delaware house will vote as early as this week on HB 160. Delaware residents can find their legislators here.

Anita Cameron: 5 Mistaken Reasons Why People Want Doctor Prescribed Suicide

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I sometimes hear these thoughts and feelings expressed, so I want to share my responses.

1.  I want the freedom, choice and the right to end my life when I want to.

That freedom and choice already exists. When the pain of an illness gets to be too much, you can decide using a number of methods to end your life. Suicide is not illegal in the United States.

What you want is the freedom to doctor shop until you find a doctor who will give you suicide pills, even if it means that the choice to live will be taken away from some elders and people with disabilities who do not want to die.

It’s especially incomprehensible to argue for a right to assisted suicide as an accepted medical treatment option when we don’t yet have a right to health care, and the threat to such health care access as we do have is growing. For Blacks and People of Color, the racial disparities in health care are too great for us to be fooled into believing that we should have the “option” of assisted suicide as a medical procedure. As the cheapest procedure, it’s not a benefit but a threat.

2. The doctor told me that I have six months or less to live.

Doctors make mistakes about terminal diagnoses. It happens far more often than you think. Doctors should be helping people to live, not helping them to die. It is normal to become depressed after being told this. Doctors should be getting their patients into therapy at this point.

3. I want to just go to sleep and die with dignity.

People can already choose to die in their sleep by using hospice services. That’s what hospice medications, up to and including palliative sedation, do.

In contrast, there is no guarantee that the suicide pills the doctor will prescribe will simply put you to sleep in a few minutes. Sometimes it takes hours, even days, to die. Sometimes, because of the type of medicine or chemical used, you may experience pain, the very thing you were trying to avoid.

4. I want to end my life under the care and guidance of a doctor.

Contrary to popular belief, the only thing that the doctor does is prescribe the medication. The doctor is usually not with you when you take the medication, when you (or your spouse, parent or caregiver) open each of the 100 capsules and pour them into water or food and take them. With no independent witness required to be there, you might have a family member or caregiver who will give you the pills, but you’d better hope that they are not more anxious to have it be over than you are.

5. I will lose the ability to do the things that I used to be able to do.

This is a disability concern, not an end of life issue. It shouldn’t be a reason to want to die, but for the all too common societal view that its better to be dead than disabled. That very view is why doctor assisted suicide is so dangerous for people with disabilities. Our lives and quality of life are devalued by many doctors. Instead of prescribing home based care, attendant services, and possibly some counseling, some doctors see death as the only viable option for some of us.

NY Court of Appeals Rally – Two Photos and Coverage

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NDY activists from across the state rallied Tuesday, May 30th on a cold and rainy afternoon outside the New York Court of Appeals. The friend-of-the-court brief filed by NDY and joined by ten other national and state Disability Rights Amici was mentioned twice during oral argument in the case, favorably, by counsel for the Attorney General and by one of the Justices. The recorded webcast of the argument is scheduled to be posted online on the Court’s website next week. Two photos are below, followed by some links to news coverage. Two additional photos appeared in the Albany Times Union story, though the disability advocates were not mentioned in the text.

Eight disability advocates lined up on sidewalk at Court building, in rain gear, all behind two hot pink parade banners with the words “Not Dead Yet, We want to live!”
Eight disability advocates lined up in front of Court building, two in wheelchairs, all in rain gear, with a hot pink NDY banner and signs saying “Help to Live, Not to Die”, “Lethal Drugs Are Not Healthcare,” and “Stop Assisted Suicide.”

N.Y.’s highest court hears case on ‘aid in dying’ (Times Union, 5/30/17) [2 photos]

Attorney’s argue for terminally ill patients’ right to die (WNYT, 5/30/17) [Anita Cameron, NDY Director of Minority Outreach, interviewed & protest footage]

Advocates push for right to die legislation (Albany News 10 ABC, 5/30/17) [Adam Prizio, NDY attorney, interviewed & protest footage]

New York’s high court hears physician-assisted suicide case (Rochester News 10 NBC, 5/30/17)

Defense arguments in Myers v. Schneiderman – public radio interview of disability attorney Adam Prizio by Alyssa Plock (Capitol Pressroom, 5/30/17) [Transcript in process]

NY’s highest court to weigh physician-assisted suicide lawsuit (Newsday, 5/28/17)

New York Appeals Court To Hear Case on Doctor Aid in Dying (Wall Street Journal, 5/22/17) [WSJ subscribers version, NY Alliance Against Assisted Suicide version, Diane Coleman, NDY President/CEO, interviewed]

A decision is expected sometime this summer.