Media Coverage and Links to testimony of ‘Second Thoughts’ members before MA legislative hearing on Assisted Suicide

assisted suicide, disability activists, disability rights advocates, legislation, Massachusetts, Our News & Commentary Blog, Second Thoughts

Sorry for the lag, but I’ve been working on offline issues for awhile.

The first thing I want to share with NDY readers is some of the media coverage, testimony, and more info from the really strong group of Massachusetts disability activists who have joined together in a coalition named Second Thoughts. As mentioned in the last blog entry, members of  Second Thoughts testified on March 6 before the Massachusetts legislature’s joint Judiciary Committee in opposition to a ballot question legalizing assisted suicide.

WWLP, which covers Western Massachusetts, ran a story that focused on the testimony and opposition to assisted suicide at the hearing, click on video below to view:

The good news is that this news story focused on disability activists; the bad news is that comments from disability activists are short and not even the most truly representative of the arguments they made before the legislature that day.

Full testimony of Second Thoughts members John Kelly, Michael Muehe, Eileen Feldman and Denise Karuth can be accessed via their Testimony Page (there are links to text and pdf versions of testimony).

I recommend bookmarking Second Thoughts for the most up-to-date information on the Massachusetts battle on assisted suicide.  We’ll share what the group is doing here, but most of the time it will appear at the Second Thoughts site first – and there’s a lot to check out on the site that I haven’t mentioned here.  –Stephen Drake

RELEASE: Massachusetts Disability Rights Activists to Testify Against Assisted Suicide Initiative

assisted suicide, disability activists, disability rights, john kelly, karen schneiderman, legislation, Massachusetts, Our News & Commentary Blog, Second Thoughts

People with Disabilities Opposing the Legalization of Assisted Suicide
FOR IMMEDIATE RELEASE 
March 6, 2012
CONTACTS
John Kelly 617- 250-8918
Karen Schneiderman 617-338-6665, ext. 204
 
Disability Rights Group Second Thoughts to Testify against Assisted Suicide Initiative
Disability rights activists from across Massachusetts will be speaking today before the Massachusetts legislature’s joint Judiciary Committee in opposition to a ballot question legalizing assisted suicide. The activists are members of the recently formed group, Second Thoughts: People with Disabilities Opposing the Legalization of Assisted Suicide. The hearing will be at 1 p.m. in room A-2 at the State House.
“Second Thoughts believes that legalized assisted suicide would make for a dangerous mix with our broken down, profit-driven health care system,” said John Kelly, the group’s director.
“Economic and family pressures can make elderly and disabled people feel like they’re a burden,” said member Karen Schneiderman. “Under those conditions, how can a choice to commit suicide be considered a free choice?”
Schneiderman said that “I don’t believe that Massachusetts voters want to pass a law that discriminates against old, ill and disabled people by singling them out for assisted suicide, while young, healthy people get suicide prevention services.”
Kelly stresses that the proposed law lacks safeguards to protect elders and other vulnerable populations from abuse. “An heir can help make the request, sign as a witness and pick up the prescription. Once the lethal drugs are in the home, no one will know if they are taken voluntarily. If the person changed their mind, if they struggled, who would know?”
Kelly emphasized that, under current law, people have the right to refuse or stop medical treatment, including food and water. People also have the right to adequate pain relief, even to the point of sedation.
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Maryland: Using a “PVS” Diagnosis to justify Organ Harvesting Without Consent

Maryland, Maryland Disability Law Center, national catholic partnership on disability, National Catholics Bioethics Center, organ donation, organ transplants, Our News & Commentary Blog, Stephen Mikochik, vegetative state

Today ( Feb. 21, 2012) in the Maryland legislature, the House Health and Government Operations Committee held a hearing on HB 449, a bill to grant health care surrogates the power to donate “non-vital” organs (a kidney or lobe of a liver) of a person diagnosed to be in a persistent vegetative state (PVS).

I know of four organizations that provided testimony, none of which is available online, though I have copies.

The Maryland Disability Law Center, the MD protection and advocacy agency, registered concern about the potential for misuse.

The bill allows surrogates, including a “friend,” to make decisions to donate a part of another person’s body based on that person’s religious, moral or personal values.  That is too vague and subject to misuse. There are significant risks to donating a kidney or lobe of a liver.   It is not generally within the role of a surrogate to make health care decisions that cannot benefit the person on whose behalf they are acting. Proceeding with an advance directive, wherein the individual has clearly expressed preferences, seems the clearer path.

Marie Hilliard, JCL, PhD, RN, Director of Bioethics and Public Policy, submitted testimony on behalf of the National Catholic Bioethics Center.  She cites evidence from the American Hospice Association that people in PVS have “a predisposition to develop recurrent urinary tract infections” which can become more generalized.  Specifically arguing against presumed consent by the person diagnosed in PVS, she says, “House Bill 449 violates the right to informed consent of the most vulnerable of persons, subjecting them to a procedure that could be lethal to them.”  She then addresses a proposed amendment to the bill which would limit the organ donation authority to people diagnosed in PVS from whom life support is to be withdrawn.

Most egregiously, there have been some reports of consideration of declaring the PVS patient terminally ill, withdrawing life-sustaining care, and placing them on a donor list. This is to be done with the consent of a surrogate, who may be exhausted and financially challenged because of the condition of the PVS patient, but hoping to secure some perceived “good” by donating the PVS patients organs as they are caused to die. Existing standards for organ donation require, even for those who are terminally ill, that the decision to withdraw life-support must be made in the best interest of the patient before any decision is made concerning organ donation.

Stephen Mikochik, Temple University law professor and Chair of the National Catholic Partnership on Disability (NCPD), also filed testimony on behalf of NCPD. 

. . . [B]y requiring physicians to extract body parts solely for the benefit of others, without clear evidence of the patient’s consent, H.B. 449 forces physicians to violate their ethical duty . . . to hold “the best interests of the patient as paramount.” (AMA Code of Medical Ethics, Op. 10.015 (Dec. 2001).)

. . . [B]y targeting PVS patients as candidates for invasive surgery and organ removal solely to benefit others, H.B. 449 singles out a class of persons, disabled under civil rights law, for adverse treatment. This could constitute illegal discrimination.

Finally, if passed, only legislative fiat would stand in the way of expanding H.B. 449 to cover those with serious dementia or similar cognitive impairments on the grounds that, like those in PVS, such patients “would hardly feel the loss.”

Finally, NDY filed testimony.  In addition to NDY versions of the points made by others, I decided to include two points to “officially” express our continuing outrage that this or any other health care decisions laws are built on the “quicksand” of a “PVS” diagnosis:

1.    The persistent vegetative state or PVS diagnosis has been proven to be unreliable, and medical research has increasingly brought it into question.

From studies reported in such esteemed publications as the British Medical Journal to expert interviews reported in the New York Times Magazine, the consensus has emerged that PVS is about 40% misdiagnosed.  [Andrews, Murphy, Munday and Littlewood, Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit, British Medical Journal 1996;313:13-16 (6 July); Schnakers, Vanhaudenhuyse, Giacino, et al., Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment, BMC Neurol. 2009; 9: 35 (2009 July 21); A Drug That Wakes the Near Dead, NYTimes Magazine, Jeneen Interlandi, Dec 1, 2011.]

If a PVS diagnosis once appeared to provide a reasonably reliable basis for differentiating statutory rights, this is clearly no longer the case.  A forty percent misdiagnosis rate is only a little better than the flip of a coin.  A PVS diagnosis should not make a person eligible for having their organs donated by a surrogate any more readily than other persons who are deemed incapacitated or unable to make and communicate their own health care decisions.

2.    The PVS diagnosis (which amounts to a prognosis that the person will not wake up or become responsive) has been given prematurely to individuals who experience a brain injury, without adequate regard for the appropriate “waiting period” based on neurological literature.

According to the Multisociety Task Force on PVS, “Recovery of consciousness from a posttraumatic persistent vegetative state is unlikely after 12 months in adults and children. Recovery from a nontraumatic persistent vegetative state after three months is exceedingly rare in both adults and children.” Medical Aspects of the Persistent Vegetative State, The Multi-Society Task Force on PVS, N Engl J Med 1994; 330:1499-1508, May 26, 1994.

Increasingly, however, families are counseled to withdraw life support before such a waiting period has passed.  As discussed by experts in the New York Times Magazine article cited above:

“Once a patient progresses to minimal consciousness, we can’t predict what’s going to happen,” says Dr. Joseph J. Fins, chief of medical ethics at Weill Cornell Medical College and author of a coming book, “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness.”. . . .

“Early on, when families have the option to pull the plug, it’s almost impossible to tell what the long-term prognosis will be,” says Dr. Soojin Park, a neurointensivist at the University of Pennsylvania Hospital,. . . . “And then later, when we have the certainty — that this is as good as it’s going to get — that option is gone. Because by then, the patient is breathing on their own. There’s no more plug to pull.” At that point, families who want to end a loved one’s suffering must either have the feeding tube removed, or agree to let the next bacterial infection win out, unhindered by antibiotics. Many families find choosing these deaths much more difficult than turning off a ventilator. …

It is not uncommon for doctors to assume the worst and advise family members to withdraw care early. They do so in part because they see their duty as helping loved ones face reality. But Fins argues that this is a cop-out. “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution,” he says. “It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.”

Such “rush to judgment” concerning the permanence of a PVS diagnosis is nothing short of a death sentence.  Again, a PVS diagnosis should not make a person eligible for having their organs donated any more readily than other persons who are deemed incapacitated or unable to make and communicate their own health care decisions.  It is not acceptable to construct a statute on the quicksand of a PVS label. 

I have one report from the hearing so far, indicating that the only witness in favor of the bill was a family member of someone diagnosed in PVS.  One advocate emailed me that this bill appears to have arisen in response to a tragic situation.  As is so often true, an individual case can sometimes lead to bad law, but hopefully not this time. – Diane Coleman

American Medical News Reports on Georgia Sup. Court Overturn of Asst. Suicide Law – Eleanor Smith quoted

assisted suicide, court decisions, Eleanor Smith, final exit network, legislation, Our News & Commentary Blog

The American Medical News has an article out today about the Georgia Supreme Court decision that ruled the state’s assisted suicide law unconstitutional. (We referred to the legislation as “half-assed.”)  The decision has the immediate effect of negating the charges against members of the Final Exit Network (FEN). The account is pretty straightforward and is pretty good at referring what the group says they do instead of reporting their claims as fact. I have only on substantive issue with the account – when referring to John Celmer, who was “helped” by FEN in his suicide, the reporters say that he “had oral cancer” but don’t report that the autopsy found him to be cancer-free.

I shouldn’t complain, though. Reporter Alicia Gallegos interviewed Georgia disability activist and organizer Eleanor Smith for her reaction:

Not Dead Yet, an advocacy organization for people with disabilities, called on the Georgia General Assembly to enact a new assisted-suicide law that can withstand constitutional muster.

“It’s important to rewrite the law so that it becomes very clear that assisted suicide is not legal in Georgia,” said Eleanor Smith, director of Not Dead Yet’s Georgia chapter. “We were very shocked and surprised to learn that our [prior] Georgia law could be read in a way that assisted suicide could be legal. This was absolutely news to us and to a lot of people.”

State legislators have expressed interest in rewriting the law before the end of the remaining session. Majority Whip Edward Lindsey and Sen. Bill Hamrick, both Republicans, have proposed revising the law.

We all hope that Georgia legislators keep this as a priority and do a better job on a bill than they did the last time.  –Stephen Drake

The Death of Christina Symanski – John Kelly and Bill Peace on Media, Perspective, Wrong Questions and Ignored Issues

bill peace, Christina Symanski, dehydration, john kelly, media coverage, media issues, Our News & Commentary Blog, quadriplegia, starvation, suicide, VSED

John Kelly is the Director of the recently-formed Second Thoughts, a Massachusetts-based group of disability rights advocates opposing the legalization of assisted suicide.

The essay below refers mainly to an article on Christina Symanski that appeared in the Huffington Post, originally in the sites “Weird News” section.  Symanski was a young woman who starved and partially dehydrated herself in a process that took about two months until she finally died.  (For whatever reason, the article has been moved from that inappropriate section to the main news section.)

Most of the reactions to Symanski’s decision to starve to death have been predictable – “she was brave to live as long as he did,” “I admire her courage,” etc.  Makes me wonder if the commenters think that the vast majority of people with spinal cord injuries are cowards for living instead of killing themselves.

Please read John’s response to the news coverage and reactions to Christina Symanski’s long death.  At the end of John’s piece, I’ll share the reactions of other disabled people to her death. From John:

I have a spinal cord injury one level higher than Christina, such that I am dictating this into a microphone, drive my wheelchair with a sip/puff tube, and like her, am completely dependent for all my care. Let’s take some issues in order.

First, suicide is nowhere illegal. No one needs to have the “right” to kill themselves, just like we don’t need “the right” to go outside or jump off a cliff. So please, enough of the “rights” talk. Moreover, it has long since been decided that people can refuse any and all treatment, so don’t worry, medicine does not bend over backwards to keep spinal cord injured people alive!

Second, people are different and as Christina says, view different matters differently. Please check out this blog entry by Christina, where she lists her number one determinant of quality of life as being able to care for one’s own body. I can relate to this feeling, as I also grew up a private and modest person, and when I was first dependent on others for my care, it felt unbearable. Like Christina, I especially had trouble with having other people perform my bowel program. Because of these feelings, it took me a long time to realize that even if I found the idea of bowel care appalling, for many other people, helping someone empty their bowels is no big deal at all — no bigger than cleaning up after a baby or pet. It really is possible to have self-respect while being dependent. But that depends on whether we receive any respect.

Third, can we talk about the social context in which we all live, and our innate need for respect from others? Please notice the assumption of the article, that it is natural that Christina would want to die as someone with a spinal cord injury. I just saw a proposal by some organ transplant doctors that newly injured people with spinal cord injuries should be encouraged to die and allow their organs to be harvested! On the flip side, newly injured people are flooded with messages of pseudo-hope for a cure for spinal cord injury. Christina was done a terrible disservice by being flooded with “hope” that she would be cured within 5-10 years. Unfortunately, self-interested doctors and scientists have been promoting this message (they got to Christopher Reeve early) for 30 years. I remember watching a Nova episode a few months after my injury in 1984, in which a doctor predicted five years for a cure to be developed.

Fourth, how much support did Christina get validating her own experience, with her body and situation. As members of many oppressed groups can relate, it really helps to laugh with another person in our same position over the way we are treated, stared at, discriminated against, etc. Besides the guy imprisoned in a nursing home who was going to starve himself to death, did Christina interact with other disabled people, disabled people who might be able to give her advice and support? So was she ever exposed as a disabled person to all the messages of possibility that are now available? For example, did she know that people with her level of injury were playing international tournaments in a new game called Power Soccer? People with disabilities need a community of people sharing our experience. Being isolated in one’s difference is oppression, pure and simple.

Fifth, like Christina I am also from New Jersey, a state not known for its support of people with disabilities. When my best friend got a spinal cord injury in 1971, there were no options but living at home or living in an institution. That can be a soul-killing choice. Christina lived at home and her mother did a lot of her care. For many 31-year-old, this would be unbearable. New Jersey now does have a PCA program, but I wonder did she got enough hours of care to meet her needs? When states and the federal government constantly underfund support programs, we disabled people get the message that we are not wanted.

Finally, it sounds like Christina was not getting appropriate medical care. Unrelieved pain and autonomic dysreflexia can feel overwhelmingly dangerous and scary, and both can be a challenge to treat. So can diabetes be difficult to manage, but diabetics are not flooded with messages “cure or die” like spinal cord injured people are.

The conclusion to draw from Christina’s tragic suicide is not that we all have the right to kill ourselves, but that people can easily be led to see suicide as the only way out of an oppressive situation.

(Note: This isn’t the first time John has written about the “intense anxiety, even terror” that seems to be the most common response from the public toward incontinence – on the part of someone else or the possibility that they themselves might experience it.  His appropriately titled 2002 article “Incontinence” is available here at the Ragged Edge archives.)

The longest story about Christina Symanski and her death was published in the UK.  The Daily Mail’s article carried a great deal more information about the interpersonal dynamics that helped to play a part in Symanski’s decision to die.  A couple days ago, Symanski’s sister posted a new entry on Symanski’s blog and urged people not to read the Daily Mail story.  You can check it out here and judge for yourself.

Most of the reactions to the Mail article are the predictable drek applauding her coming from able-bodied people.  There were some exceptions, however.  Someone calling himself “Larry, from Mississippi” responded to an able-bodied person who called quadriplegia “worse than death” and “90% dead”:

I broke my neck 26 years ago as a 16 year old, got my GED, went to college, ran a business, and trained boxers for 16 years as a quad. Quadriplegia is a fate worse than death?? You are effectively 90% dead?? Tell those young Golden Gloves and Jr. Olympic champs I coached/mentored that! I know everyone is different, but there is no explaining this to me. I’ve had roomates in rehab and college that were negative about their situations. I despise self pity! I made a decision to get in a hot rod with a drunk driver on December 25, 1985. She made a decision to dive into shollow water, which I had done many times too. Maybe quads and paras should stay in a childrens rehab full of children that never walked and never will as I did. Gave me a whole new perspective on things. Some of these comments blow my mind. If you think killing yourself is brave, you have issues. I truly hope you never get paralyzed if you are weak minded enough to believe this is the way out. I’m done..

Here’s another one, this time from an able-bodied person calling herself “Lady Pauline Maria” from the UK:

This is so sad. RIP. My mother became paralysed from the neck downwards in a freak car accident….she wanted to die and begged for help. I pleaded with her to realise she was more than a physical body. She was highly intelligent, wise and a amazing Lady who gave so much encouragement to everyone. Years of arguments, tears and slowly, she realised life beyond a wheelchair. She was loved and respected by so many people – an inspirational Lady of courage. She defied doctors and travelled to USA by plane. She needed nurses and help; even help to cough. She became the consultant to expert consultants. I admit encouraging her to realise a spiritual purpose and she did. My best friend and a truly courageous inspiration..It hurts my heart to read of people who give up when not understanding, we who love our loved ones are blessed with their living. This year is the paralympics – paralyzed people who defy physical limitations. Keep the happy memories and live to love. Life is very precious.

There are no doubt more like these these to be found for someone more willing than I to dig through the more than 200 mostly nauseating and depressing garbage consisting of applause and pitying pseudo-sentimentality.

Finally, Bill Peace has managed to struggle through his own disgust and write down his own reactions on his Bad Cripple blog. Here is the first paragraph of his blog entry titled “The Mainstream Media Discovers Christina Symanski: Perspective Please“:

American society loves people with a disability that want to die. These people are heros. These people are lauded as brave. Their stories are gut wrenching. Their writing is powerful. The latest such person with a disability that is being belatedly embraced is Christina Symanski who I have already written about. Symanski died last December but few noticed her death outside of her immediate family and those in the disability community that read her blog Life Paralyzed. I was deeply touched by her writing and disturbed by her death. I have tried to give a balanced perspective on the social significance of her death. This is exactly what you will not find in the news stories that I have read over the last few days. The first newspaper to write about Symanski was the New Jersey Star Ledger. This story was picked up by the UK’s Daily Mail and then the Huffington Post. I expect the news of Symanski’s death will go viral over the weekend and be picked up by hundreds of news outlets. I have no doubt she will be lauded for choosing to die. Proponents of assisted suicide legislation will bemoan her heroic suffering–Symanski slowly dehydrated and starved herself to death over a period of two months. Comments from readers on line are predictable–if we can euthanize our pets with dignity why did Symanski have to suffer a horribly painful death. The news stories are maudlin in the extreme and devoid of any serious discussion. For example, the story in the local NJ paper adds details such as Symanski’s last meal. The Huffington Post notes as an artist Symanski had decided she had suffered enough–the assumption being artists need to suffer to produce great art. The Daily Mail went into great detail about how Symanski was paralyzed and saved by her boyfriend who she was about to move in with.

And, of course, he has much more to say.  Read the rest of it here.  –Stephen Drake