Sad news – writer/speaker/lawyer/activist Harriet McBryde Johnson has passed away

activism, advocacy, goodbyes, media issues, Our News & Commentary Blog, Peter Singer, schiavo

This morning, several emails alerted us to the death of Harriet McBryde Johnson.

Harriet, whose voice, work and words touched people all over the world, passed away last night. Details are unknown – and to me, anyway – unimportant.

What is important is that Harriet lived a life devoted to the pursuit of social justice and became one of the most important voices to the nondisabled world from inside the disability rights movement.

We’re all still in shock, but Not Dead Yet president and founder Diane Coleman wrote the following to some friends today when she heard the news:

Dear friends,

I just learned through another email list that Harriet McBryde Johnson passed away last night.

This is a terrible shock. Harriet and I shared so much, spinal muscular atrophy, being attorneys (she with an active practice), work against euthanasia. She has been a sister in the struggle. Beyond perhaps all others in our movement, her writings have moved millions. This is such a severe loss.

Frankly, we’re all still pretty much at a loss for words. So I’ll share the words that others have written about Harriet and also direct you to some words written by Harriet herself.

About Harriet:

New Mobility “Person of the Year” (2004) Harriet McBryde Johnson: A Life Lived Well

Written by Harriet:

NY Times: Unspeakable Conversations

Slate: Not Dead at All: Why Congress was right to stick up for Terri Schiavo

Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon

First and short version of Harriet’s obituary in the Charleston Post and Courier:

Harriet McBryde Johnson, a well-known Charleston disability and civil rights attorney, died Wednesday.

“She worked yesterday. It’s a shock to everybody,” said friend and attorney Susan Dunn.

She was born July 8, 1957, and had been a Charleston resident since age 10.

She told The Post and Courier that she became an attorney because her disability-rights work had taught her something about the impact of law on how people live.

She specialized in helping people who couldn’t work get Social Security benefits.

She was chairwoman of the Charleston County Democratic Party executive committee (1988-2001); city party chair (1995-2000); secretary of city party (1989-95); national convention delegate (1996); president, Charleston County
Democratic Women (1989-91); County Council candidate (1994); and a certified
poll manager.

Funeral arrangements are pending at Fielding Home For Funerals.

Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to “the charity mentality” and “pity-based tactics” of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.

The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, “I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person.”

Read more in tomorrow’s edition of the Post and Courier.

Finally (for now, anyway), I owe Harriet thanks for my inclusion in the upcoming book, Peter Singer Under Fire: The Controversial Philosopher Faces His Critics. Her insistence on including the NDY critique was the reason we were included, since she made her own inclusion in the book contingent on a piece from us. –Stephen Drake

New “futile care” promotion includes attack on ADA

Americans with Disabilities Act, bioethics, futile care, lifeboat ethics, medical decisionmaking, Our News & Commentary Blog

I found an “interesting” article from the Kalamazoo Gazette, thanks to Bobby Schindler, who is doing some guest blogging for Wesley Smith while Wesley is on vacation. Bobby has his own valuable insights on the article, but I wanted to write about a couple of things that jumped right out at me.

The article is a profile of Dr. Kenneth Fisher, who has recently published a book that pushes – hard – for greater implementation of “futile care” decisions by strengthening the autonomy of medical professionals and undermining the self-determination of patients.

In case anyone thinks I’m overstating the case and its relevance to the disability community, here’s just one of Fisher’s “suggestions” to “improve” care by preventing “futile” medical interventions:

To revise the Patient Self-Determination Act and Americans with Disabilities Act so they ensure appropriate and beneficial medical care rather than provide patients the right to demand any level of care.

Got that? Fisher wants to go after the ADA specifically to weaken or eliminate our legal rights to direct our own care and determine what we think is appropriate.

Fisher is someone we should all probably keep an eye on. He has a blog – there’s a link provided in the article.

The blog provides a form for download that replaces traditional advance directives. For one thing, it invites individuals to cede their rights to an “appropriate care committee.”

Excerpt of text from his new and improved admissions form:

A patient has the right to evidence based care tailored to the individual, but cannot receive care that has no value. The physician team is responsible for defining beneficial care, where the benefit to the patient significantly exceeds the risks. A committee (the appropriate care committee) is available within the hospital should conflict arise. The committee will render judgment within one working day.

Fisher’s also not shy when it comes to self-promotion. The sample fax he provides so that you can email your congressional reps comes complete with a glowing recommendation from you – urging the congressional rep to read his book.

So for those of us who have been concerned with the rising juggernaut of “futile care” policies, here’s a new reason for concern. We have a new promoter who clearly has the ADA in his sights.

Shoving us off the lifeboat in a pandemic

bioethics, lifeboat ethics, Our News & Commentary Blog, policy

This alarming bit of “lifeboat ethics” public policy has reached my email through several sources:

Who should doctors let die in a pandemic?

CHICAGO – Doctors know some patients needing lifesaving care won’t get it in a flu pandemic or other disaster. The gut-wrenching dilemma will be deciding who to let die.

Now, an influential group of physicians has drafted a grimly specific list of recommendations for which patients wouldn’t be treated. They include the very elderly, seriously hurt trauma victims, severely burned patients and those with severe dementia.

The suggested list was compiled by a task force whose members come from prestigious universities, medical groups, the military and government agencies. They include the Department of Homeland Security, the Centers for Disease Control and Prevention and the Department of Health and Human Services.

( I suspect that the list would also include at least some people with labels of mental retardation, since the rationale for withholding treatment would be the same.)

The list of “lifeboat rejects” includes:

  • People older than 85
  • Those with severe trauma, which could include critical injuries from car crashes and shootings.
  • Severely burned patients older than 60.
  • Those with severe mental impairment, which could include advanced Alzheimer’s disease.
  • Those with a severe chronic disease, such as advanced heart failure, lung disease or poorly controlled diabetes.

Lindsey Tanner, the author of the Associated Press article, sought out some critical comment on the proposed policy:

Public health law expert Lawrence Gostin of Georgetown University called the report an important initiative but also “a political minefield and a legal minefield.”

The recommendations would probably violate federal laws against age discrimination and disability discrimination, said Gostin, who was not on the task force.

If followed to a tee, such rules could exclude care for the poorest, most disadvantaged citizens who suffer disproportionately from chronic disease and disability, he said. While health care rationing will be necessary in a mass disaster, “there are some real ethical concerns here.”

Real ethical concerns indeed. These “lifeboat rejects” are already some of the people likely to draw the short straw in what we call a healthcare system. Has anyone bothered to ask how this triage list will affect attitudes toward individuals now deemed as “rejects” now? Hospitals will now have policies listing these individuals as unworthy of lifesaving efforts in an emergency. Will that affect the way medical providers see them right now?

It’s not as though individuals on this list are highly valued or respected in the system as it is.

I have many friends who would fit on this list. I have two pieces of advice for them:

  1. Be afraid. Be very afraid.
  2. Once you’ve gotten that out of your system, start organizing and raising a stink about it. –Stephen Drake

Disability Panelists Explain Opposition to Euthanasia/Assisted Suicide at Washington State University Event

activism, advocacy, assisted suicide, media coverage, Our News & Commentary Blog, Washington state

Last night (April 23), three disability experts/activists/advocates addressed an audience of several hundred people at Washington State University (from the April 23 WSU Release):

PULLMAN, Wash.—A panel of disability experts will discuss the issues around legalizing euthanasia during “Euthanasia: A Disability Perspective” 7-9 p.m. April 23 in Todd 116 in the Washington State University campus.

Duane French, director of the Division of Employment and Assistance Program with the Washington State Department of Social and Health Services; Cyndi Jones, publisher and editor of Mainstream Magazine; and Marilyn Golden, policy analyst at the Disability Rights Education and Defense Fund (DREF); with moderator Dan Holbrook, WSU associate professor of philosophy, will discuss the I-1000 initiative that aims to legalize physician-assisted suicide in the state of Washington.

French, the founder and president of “Not Dead Yet,” has served on the Federal Interagency Coordinating council as an appointee of the Clinton administration. Jones is the director of the center for an Accessible Society and its program “What’s Next?,” a mentoring program for high school students with disabilities. Golden is co-author of “The ADA, an Implementation Guide” and coordinates the Disabled International Support Effort. (editor’s note: Duane French is the founder and president of the Washington State chapter of Not Dead Yet – Diane Coleman is the founder and president of the national organization.)

According to a press account today, they turned at least one person’s attitudes around:

Chris Wesen was a proponent for physician-assisted suicide.

The 19-year-old Washington State University student believed terminally ill people should have a say about when and how they die.

His stance on the matter changed after he attended a discussion on the subject by a panel of disability experts Wednesday at Washington State University. “They brought up a lot of good points,” he said. “I don’t think it’s the only option.”

Wesen was one of several hundred people who attended “Euthanasia: A Disability Perspective” sponsored by the WSU Disability Awareness Association. The three panelists — all of whom are disabled — challenged the ideas behind physician-assisted suicide, and more specifically, an initiative aimed to make the practice legal in the state of Washington.

I look forward to hearing more on this event – from other media accounts or from the panelists who predictably made a compelling case for the disability rights-based opposition to legalized euthanasia and assisted suicide. I expect to post some updates on this event and of the efforts of disability activists in Washington State over the next few weeks. –Stephen Drake

New Research on Nurses Who Kill Repeatedly: They’re Serial Killers, Not Agents of Mercy

media coverage, medical killings, Our News & Commentary Blog, research, serial killers

Coincidentally, I tripped across a news report from PM – a program of Australian public broadcasting. The report aired April 21st and consists of an interview with John Field, who has completed a study about nurses who kill patients:

PM – Study investigates serial killer nurses

PM – Monday, 21 April , 2008 18:36:00

Reporter: Nance Haxton

LISA MILLAR: It’s enough to give you a phobia about going to hospital.

A University of Adelaide PhD study has examined why some nurses deliberately kill their patients and what hospitals should do to prevent the murders.

Barrister and registered nurse, John Field, looked into 48 cases of nurses murdering their patients around the world and found that 38 of those were serial killers.

John Field spoke to Nance Haxton in Adelaide.

JOHN FIELD: The most common method of murdering was by lethal injection. It became obvious to me that murder of a patient by nurses can happen anywhere, but I think that the nurses who do murder patients, particularly the serial killers, would be serial killers whether they were nurses or anything else for that matter, you know, any profession. (emphasis added)

This is relevant to two recent blog entries (April 9th and April 10th) regarding the suspicious deaths at the Woodstock Residence nursing home here in Illinois. As described, the press coverage has gone through some “interesting” permutations starting with the investigation right up through the criminal indictments of two nurses who used to work at the facility. It’s important to note, though, that the nurses in the Woodstock case haven’t been charged with manslaughter or homicide.

More from Field here:

JOHN FIELD: I think what we can learn is that nurses themselves need to have a heightened awareness of it. They have to at least at first accept the possibility that this could happen.

And what I found was during the whole time I was doing this study, when nurses would ask me what I was doing my PhD on and I’d say, “Nurses that murder their patients”. And they’d say, “Oh, you mean euthanasia, you know, putting people out of their misery”.

And I’d say, “No, I mean people who are murdering their patients, that are actually doing it with malice and forethought, that are intentionally killing them for no good reason and sometimes when they’re healthy.” And they’d be astonished. They couldn’t believe that a nurse would do such a thing.

And I think that’s part of the problem is that it’s so hard to contemplate that that would be the case, it’s such a foreign concept that it would be almost impossible to suspect your colleague of doing that.

NANCE HAXTON: And you found that even in the response of some hospitals in these cases that quite often they simply moved that nurse on if there were some
suspicions, which only opened up the possibility of them doing it somewhere else.

JOHN FIELD: That’s right. Now the practice of permitting people who were suspected or considered to be possibly be killing patients, just moving them on,
probably isn’t a satisfactory way of dealing with it. And the fact that those people then went on to have long killing careers, sometimes 16 or more years, suggests that’s a very poor practice.

Field’s findings resonate with the comments of other professionals who have studied this phenomenon. You’ll find them quoted in this 2003 article from USA Today I linked in an earlier entry.

I’m happy to say that Field’s thesis is available online.

A full abstact and links to pdf files of his thesis are available at the University of Adelaide Research and Scholarship Digital Library.

I’ll find this handy the next time multiple suspicious deaths at a nursing home or hospital are described as “mercy killings” by the police, prosecutors or the press. –Stephen Drake