The Atlantic: “Physician-Assisted Suicide Is Not Progressive” by Ira Byock

assisted suicide, hospice, ira byock, Our News & Commentary Blog, palliative care

Ira Byock is a friend and someone whose work is widely respected.  Unlike many people writing on assisted suicide, Ira has spent decades working intimately with patients and their families, giving aid, comfort and treatment to all affected during the final chapter in that patient’s life.

Bio blurb from The Nation:  Ira Byock is director of palliative care at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and author of The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.

The book cited above will be discussed and reviewed in the coming weeks.  Short version of review – not only should you read it, so should your doctor.

 

Physician-Assisted Suicide Is Not Progressive

Excerpt:

The issue of legalizing physician-assisted suicide doesn’t fall cleanly along liberal-conservative lines. However, it’s fair to say that most social conservatives ardently oppose assisted suicide, while a clear majority on the political left support legalization. That’s the case in Massachusetts where Question 2 is on November’s ballot, and according to recent polling is very likely to pass.

I am an outlier, in that I am a registered Democrat and progressive, as well as a physician who has cared for people with life-threatening conditions for more than three decades. I support universal health care, voting rights, disability rights, women’s rights, Planned Parenthood, gay marriage, alternative energy, and gun control. I yearn to see an end to the war on drugs and the war in Afghanistan. And, I am convinced that legalization of physician-assisted suicide is something my fellow progressives should fear and loathe.

When cast as a rights issue, it’s hard for progressives to resist. But “the right to die” is just a slogan. No civil right to commit suicide exists in any social compact. Human beings have a biologically imposed obligation to die; and, as Jean Paul Sartre reminded us, suicide is always an option. However, even if a civic right to suicide did exist, suicide and assisted suicide are very different things. Suicide might be a purely private act; but physician-assisted suicide involves two people, one of whom is trained, certified, licensed, and compensated by society.

Supporters of initiatives to legalize physician-assisted suicide worry about people who die badly. On that we agree. If the moral worth of a society can be measured by how well it cares for the most vulnerable of its members, the America in which I live and practice medicine scores poorly. Much of the suffering I see among people with advanced illness is preventable. Many of the indignities I witness are imposed.

Sick people commonly endure undertreated physical suffering and a dizzying array of system-based personal assaults. There is a maze of appointments, irrational insurance hoops, and requirements, and indecipherable bills. I hear patients express embarrassment at becoming a burden to those they love, dread at the prospect of draining their family’s savings and shame of being forced into medical bankruptcy. Public policies could go a long way to dissolving this quagmire, but legalizing physician-assisted suicide isn’t one of them. Giving doctors lethal authority would address none of the deficiencies in medical practice, health care financing or social services that bring ill people to contemplate ending their lives.

Please read the rest of this excellent article here.  And please leave a comment in support of his article.  You do have to sign in to leave a comment but can do so through your facebook or twitter accounts.

NY Law School – Justice Action Center’s Upcoming Annual Justice Symposium Not Fair to Disability Advocates, Let Alone “Just”

"end of life", "special", alicia ouellette, Ann Neumann, assisted suicide, bioethics, Compassion & Choices, hypocrisy, New York Law School, Our News & Commentary Blog, right to die

On Friday, November 16th, the Justice Action Center, part of New York Law School, is presenting a symposium titled ” Freedom of Choice at the End of Life –Patients’ Rights in a Shifting Legal and Political Landscape.”

It would be understandable if you thought that this was actually an event planned and presented by Compassion and Choices, with the Justice Action Center merely playing the host.  It would be clear because the presence of Compassion and Choices activists dominates this symposium.  As nearly as I can determine, here is a list of C & C representatives at the Symposium in their respective sessions (in all but the ‘welcome’ session, there are additional participants/panelists as well):

Welcome

  • Peter J. Strauss, Symposium Chair,  is listed as Adjunct Professor, New York Law School – he’s also on the Board of Directors of Compassion & Choices of New York;
  • Kathryn L. Tucker, JD, Director of Legal Affairs, Compassion & Choices, Adjunct Professor of Law, Loyola Law School/Los Angeles;

Panel I: Taking Control and Preserving Autonomy

  • Peter J. Strauss, Symposium Chair, Adjunct Professor, New York Law School (and C & C of NY Board Member) moderates the panel;
  • David C. Leven, Executive Director, Compassion and Choices of New York as one of the panelists

Panel II: Real Time Critical Issues

  • David Muller, M.D., Professor of Medicine and Dean for Medical Education, Mt. Sinai School of Medicine, New York; Director, Visiting Doctors Program (and, although it’s not mentioned, on the Board of Directors of Compassion and Choices)

That pretty much takes up the morning.  In all fairness, it looks like the presenters at lunch and the concluding session have no direct connections to Compassion and Choices or the New York chapter.

However, there are multiple and major problems with the third panel of the Symposium.  Here’s the title and description of  that section:

Panel III: Special People, Special Issues
This panel will discuss the issues of concern for people with disabilities and the conflict between organizations dedicated to protecting their rights and end-of-life advocates. The panel will discuss the views of some of the major religion (sic) and whether conservative theological values can co-exist with patient choice. Finally, the panel will conclude with a discussion of the quality of medical care provided to prisoners and how their end of life choices are treated.

The title about “special” people should alert readers immediately that there will be no disability advocates or activists describing our conflict(s) with so-called “end of life” advocates.  Most of us roll our eyes, make gagging noises or give other subtle cues that we detest the “special” label when someone uses it around us.  This session, btw, is moderated by yet another board member of Compassion and Choices.

I would bet that the lion’s share of the load in terms of “discussing” the “issues of concern” that disability activists and advocates have will be the job of panelist Alicia Ouellette.  Ouellette recently published a text on bioethics and disability – apparently becoming the newest bioethicist who wants to become known as the “disability-conscious” bioethicist – someone who can relate slanted, distorted and outright ‘straw man’ versions of disability critiques, concerns and strong objections to both bioethics and so-called ‘end of life’ advocates.  (I’m not linking to her book – I hear it’s not selling well and it would be nice if it continued on that path.)  Suffice it to say, Ouellette gets many things wrong about disability issues in her book – especially when it comes to NDY-related issues.  Small wonder – she didn’t reach out to anyone we know of (in checking her preface) in disability advocacy who was actually involved in cases she talks about in her book – Elizabeth Bouvia, Larry McAfee and Terri Schiavo to name a few.

I am also guessing that the part of the session relating to “conservative theological values” will be dealt with by Ann Neumann who, aside from her role as “Editor, The Revealer, The Center for Religion and Media, New York University,” also writes on her blog ‘Otherspoon.’  Neumann is a ‘true believer’ in all things labeled ‘death with dignity’ and has a longstanding marked disdain for disability advocates who organize against pro euthanasia and assisted suicide groups.  In her last post on ‘Otherspoon,’ she gave a good example of how she could drag disability activists into her discussion of ‘conservative’ religious activists.   In a familiar move that privileged people make when they’re about to demean and dismiss members of a minority, she writes about her great ‘friendship’ with Bill Peace (Bad Cripple).  That’s a conventional shield for what comes next in her post:

I would never take him to task for how he feels.  Or over not seizing his autonomy from hypothetical others, including “pro-life” organizations that have worked very hard to recruit disabled individuals and groups to “their side”–with scary threats of a “culture of death” just waiting around to kill off the “abnormal.”

In that second sentence, she manages to do two things – instead of giving a fair account of the concerns of disability advocates (including Bill) about these issues, she inserts extreme slogans from the Religious Right – and then implies that we are jumping on their bandwagon.  But she doesn’t hate us – we’re just poor, scared little cripples who can easily be “recruited” by the right propaganda.  She denies the agency of disabled people – those stands we take that she disagrees with can’t be our own – so we must have been slyly “recruited” (seduced or brainwashed are terms that are probably closer to what she’s actually implying).

That’s the kind of respect we “special” people can expect from this session.

What makes it all the more appalling is that this will happen under the auspices of the University’s Justice Action Center.  The Center describes its goals, in part, this way:

… the Center seeks to instill in students a deeper intellectual understanding of the law regardless of their final career goals, and to present opportunities to maintain their ties to the social justice community beyond law school. Recognizing that students will pursue varied careers, the Center aims to provide a framework for analyzing the pervasive questions and contradictions relating to social justice in American society, irrespective of the context in which they may arise.

The main “contradiction” attendees will see at this symposium is the Justice Action Center’s failure to show even a modicum of respect in making sure the perspectives of disability advocates and activists are represented fairly and accurately.  Do I have to add that ‘justice” would mean having disability activists themselves speaking for ourselves?

Shame on the Action Justice Center for showing everyone just how little respect and regard they have for people with disabilities.

Shame on the sponsors of this farce –  the New York Law School Law Review and the Diane Abbey Law Center for Children and Families, the American Bar Association Commission on Law and Aging; the National Academy of Elder Law Attorneys; the Elder Law Section of the New York State Bar Association; and Collaborative for Palliative Care, Westchester/NYS Southern Region.

Shame on all these organizations for putting their collective stamp of approval on this farce.  They should all know better.  Most of them do know better.

If you’re thinking that I accidentally left Compassion & Choices of New York off of the list of sponsoring organizations that should be ashamed – it was intentional.  I expect no better of any branch or chapter of Compassion & Choices.  They have never failed to meet my low expectations of them.

It’s a shame to see so many organizations join them in their total disdain for disability activists and advocates.

NY Lawsuit Claims Organ Donor Network Engaged in ‘Shameful Practices,’ Pressuring Staff and Families

brain death, brain injury, litigation, New York Organ Donor Network, organ donation, organ transplants, Our News & Commentary Blog, rush to judgment

There’s a potentially explosive lawsuit that’s gotten limited coverage so far.  As near as I can tell, the first story on it was published in the New York Post on September 26 of this year.  Here’s an excerpt from the news story in the Post:

The New York Organ Donor Network pressured hospital staffers to declare patients brain dead so their body parts could be harvested — and even hired “coaches” to train staffers how to be more persuasive, a bombshell lawsuit charged yesterday.

The federally funded nonprofit used a “quota” system, and leaned heavily on the next of kin to sign consent forms when patients were not registered as organ donors, the suit charged.

“They’re playing God,” said plaintiff Patrick McMahon, 50, an Air Force combat veteran and nurse practitioner who claims he was fired as a transplant coordinator after just four months for protesting the practice.

The suit, filed in Manhattan Supreme Court, cited four examples of improper organ harvesting.

In September 2011, a 19-year-old man injured in a car wreck was admitted to Nassau University Medical Center. He was still trying to breathe and showed signs of brain activity, the suit charged.

But doctors declared him brain dead under pressure from donor-network officials, including Director Michael Goldstein, who allegedly said during a conference call: “This kid is dead, you got that?” the suit charged.

The patient’s family consented to have the organs harvested.

“I have been in Desert Storm, Iraq and Afghanistan in combat. I worked on massive brain injuries, trauma, gunshot wounds, IEDs. I have seen worse cases than this and the victims recover,” McMahon told The Post.

This could just be a case of a ‘disgruntled’ ex-employee leveling charges against the Organ Donor Network as a way to get even – certainly the charges might seem pretty incredible to most of the public who probably have a hard time believing that scenes such as the ones McMahon alleges could occur in major hospitals in this country.

However, to people who are more familiar with some of the controversies surrounding organ donations and determination of death, these charges don’t seem that wild or bizarre – at all.

Take the issue of brain death – as we’ve discussed on this blog, there is high variability between hospitals regarding  just what protocols are used to make a determination of brain death.  In that post we shared this quote from a 2010 article in USA Today from James Bernat, a leading expert on brain death, referring to a 2008 study:

Dr. James Bernat, a professor of neurology and medicine at Dartmouth Medical School, said the new guidelines will help to remove some of the variability in how doctors determine brain death.

“The 2008 study disclosed rather surprising and disturbing variations in determining brain death, and in some cases there were practices that were just plain wrong,” Bernat said.

The main risk is that a patient will be declared brain dead who really isn’t, Bernat said.

“The authors of this (new) study are experts in their field and have done an evidence-based, authoritative review,” Bernat said. “They are saying, ‘This is the way it ought to be done.’ The goal is to improve the uniformity and the quality of neurological practice.”

As Bernat delicately stated, the variability in practice creates a risk that individuals will erroneously be judged to be brain dead.  The trouble with the new guidelines is that, as before, hospitals are not required to adhere to those guidelines, but are free to set their own standards.

And the practices of Organ Donation Advocates in hospitals?  There’s more than a few whispers of concern about that as well.  We’ve done a fair amount of coverage on the topic, but if you only want to read one thing, check out the link and quote below from a prior blog post here:

The March 2012 issue of Virtual Mentor, American Medical Association Journal of Ethics featured an article by Dr. Fins titled Severe Brain Injury and Organ Solicitation: A Call for Temperance.  Unlike many journal articles, this one is freely accessible.  Here’s the intro:

Several years ago I resigned from a board position with the local organ procurement organization (OPO) over the status of organ retrieval from those with severe brain injury. I resigned with a heavy heart but a wary brain because I am a supporter of organ transplantation. Why else would I have agreed to join the board of an OPO? It was pro bono service in the pursuit of a good—the giving of life to patients in dire need of replacement organs in the face of end-stage disease. But there was another set of goods, emerging goods, for a different constituency—some patients with disorders of consciousness—that seemed in opposition to some of the policies pursued by the mainstream organ donation community. I was particularly concerned about patients who were in the minimally conscious state (MCS), a brain state just above the vegetative state.

Fins spends some time giving an overview of the distinctions between coma, vegetative state, and minimally conscious state.  He also gives what are regarded as the standards for recovery times.  You can find some of that info by searching this site or read Fins’ article yourself.    In the next section, Fins gives a description of some of the issues that trouble him in blunt language:

Federal regulations require that Organ Procurement Organizations (OPOs) be notified of the impending death of potential donors [10]. The timing of this notification can be self-evident: the patient on life support and vasopressor agents that maintain the blood pressure artificially, whose end is inevitable, no matter the intervention. But sometimes, the end is contingent upon decisions about the withholding or withdrawal of life support.

Case in point: what to do about those who have sustained a severe brain injury. Totally dependent upon ventilator support for at least airway protection if not ventilation as well, they can quickly become the imminently dying if a decision is made to withdraw the ventilator. And once such decisions are contemplated, regulations would have it that the OPO be notified about the possibility of what is commonly and euphemistically termed a potential organ harvest.

My problem as an OPO board member was that, too often, patients like these were viewed as if they were destined or compelled to die. They were seen as organ donors even before their organs had outlasted a viable body—and brain. As an ethics consultant at an academic medical center, I had seen OPO representatives hover in an ICU, waiting to sweep in—as some intensivists have described it to me—and collect what they viewed as rightly theirs—organs that would have a salutary effect on another human being.

I use the word “hover” deliberately, if a bit provocatively, because that is how families of many brain injury patients viewed it. I know this from interviews with more than 40 families, each with a member who had a disorder of consciousness, who came to Weill Cornell Medical College for enrollment in neuroimaging and EEG studies designed to elucidate mechanisms of recovery. While they were here, we conducted extensive interviews with patients’ surrogates about their experiences with the care system as they made their journey from acute injury on through rehabilitation and chronic care [11].

One of the most powerful scenes, often repeated, occurs early in the course of care, when patients are still in the ICU: surrogates are approached for organ donation. After the patients survive and recover to varying degrees of function, these families still resent what is often described as the predatory behavior of OPO representatives. Many families report zealous attempts at procurement and a near-certainty about their loved one’s prognosis: death was inevitable, ventilators should be withdrawn, and organs should be redirected for some greater good. But with valuable hindsight, families later ask, how did they know? And how could they have been so wrong, both medically and perhaps ethically?

Fins ends with his call – or plea – for temperance.  I’ll leave it to readers to follow the link to read his recommendations.  The excerpts here should be more than enough to show that the writing is eminently readable.

So, to make a long story short, the allegations in Patrick McMahon’s lawsuit are all-too plausible.  You can read the rest of the NY Post article here.  Additional coverage at the Huffington Post and Staten Island Advance.

Disability Rights Activist Pam Auer to Represent NDY at My Medicaid Matters Rally in Harrisburg, PA on Wednesday, October 17

ADAPT, disability activists, disability rights, Medicaid, Our News & Commentary Blog, Pennsylvania

Disability Rights Activist Pam Auer to Represent Not Dead Yet at My Medicaid

Matters Rally in Harrisburg, Pennsylvania on Wednesday, October 17

On Wednesday, October 17, National ADAPT is leading a My Medicaid Matters Rally in Harrisburg, Pennsylvania to oppose cuts to Medicaid. Disability rights activist Pam Auer will represent Not Dead Yet as one of the speakers at the Rally.

 

Pam Auer (front,left) at My Medicaid Matters Rally in Wasington, D.C. (Sep 2011)

Harrisburg, PA (PRWEB) October 17, 2012

On Wednesday, October 17, ADAPT, a national direct action disability rights organization, is sponsoring the My Medicaid Matters Rally in Harrisburg Pennsylvania to oppose cuts to Medicaid home care services. Disability rights activist Pam Auer will speak on behalf of Not Dead Yet at the Rally. Not Dead Yet opposes legalization of assisted suicide.

Read the rest of the press release here.

Three MDs weigh in on assisted suicide

assisted suicide, Ballot Question 2, boston globe, medical issues, medical killings, op-ed, Our News & Commentary Blog

Today’s Boston Globe has two letters by doctors who are opposed to legalization of assisted suicide – and are responding to a glowing endorsement of assisted suicide by Marcia Angell, MD, in an op-ed published in the paper on September 29.  The letters to the Globe are at this link, but can’t be accessed directly without a paid subscription for online access.  Fortunately, someone emailed them to us and they’re reproduced below:

As a physician who has been taking care of dying patients in Massachusetts for years, I found Dr. Marcia Angell’s Sept. 29 op-ed “A method for dying with dignity” chilling. Physicians who oppose Question 2 are not concerned about their “self-image,” but rather for the welfare of their patients.

In my experience suicide is a tragedy whether it occurs years, months, or days before natural death. I have been asked for a lethal medication a number of times. Behind the request lies terrible fear. By drawing these fears out and addressing them, we help patients pass through the crisis that leads them to turn to suicide.

Suicide is not a purely autonomous act; it has deep, long-lasting effects on loved ones and society. Even when an individual loses the sense of the value of one’s life, those around the individual do not.

The referendum has no provision for notification of family members, and no requirement that anyone be present when the lethal dose is taken. The patient is left alone with the poison, all in the name of autonomy. To embrace suicide as a medical treatment is to cut at the heart of what unites us as a Commonwealth.

Dr. Jane A. Driver

Boston

The writer is in the division of aging at Brigham and Women’s Hospital and is assistant professor of medicine at Harvard Medical School.

 

Dr. Marcia Angell (“A method for dying with dignity,” Op-ed, Sept. 29) wrote that the Massachusetts Medical Society opposed physician-assisted suicide because it is inconsistent with physicians’ “self-image” as healers. However, the rejection of the so-called Death with Dignity Act by the majority of physicians is based on much broader medical considerations.

Twenty to 40 percent of medical diagnoses prove wrong when confronted with the ultimate criterion of truth, the autopsy. This means that the license to cause deaths on the grounds of medical diagnoses can lead to tragic mistakes.

The act would allow prescriptions for lethal drugs to be given to patients with a life expectancy of no more than six months. This too is a potential source of serious blunders because physicians’ ability to predict how soon a patient would die is notoriously unreliable.

In addition, the Dutch experience has shown that the acceptance of death as a medical solution is suppressing the performance of doctors and nurses in critical situations when life is threatened but can still be saved.

Dr. Richard Fenigsen

Waltham

On September 30th, another physician weighed in on assisted suicide at PsychCentral.  In an essay titled ‘Merciful Assistance or Physician-Assisted Killing?,’ Ronald Pies, MD had a skeptical take on assisted suicide as well:

Imagine that your father, age 85, has been diagnosed with a terminal illness and given only three months to live.

Fortunately, he is still well enough to walk, and finds himself one night near a tall bridge. Having contemplated the suffering he believes will attend his final days, he decides to end his life by jumping off the bridge. However, he is too weak to hoist himself up atop the protective railing.

Suddenly, he sees his very own physician, Dr. Jones, walking by. He begs Dr. Jones to help him climb atop the railing, adding, “Don’t worry, Doc, it will be my decision to jump.” The doctor is taken aback, but quickly determines that his patient is not psychotic or severely depressed, and is capable of making a rational decision regarding suicide. The doctor tries to persuade your dad that pain and suffering can usually be well-controlled during the final days, but the patient is insistent: he wants to end his life.

Would you agree that Dr. Jones is fulfilling his obligations as a physician by assisting your father in jumping off the bridge?

If not, would you support the doctor’s providing your father with a lethal dose of medication?

That’s just the beginning of the essay – please read the rest of it here.