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

National Healthcare Decisions Day: Count Me Out

"end of life", advance directives, advocacy, bioethics, Our News & Commentary Blog

In case you missed it, today is National Healthcare Decisions Day (NHDD). We’re all invited to “join Americans across the country to talk to others about your future healthcare decisions and to complete your advance directive!”

We’ll pass, at least when it comes to joining with the coalition promoting this effort.

If you check the NHDD’s list of particpants, you’ll find that the only disability-related organization included is the Judge David L. Bazelon Center for Mental Health Law. (I can’t say for sure how the Bazelon Center got involved, but I know that many of our friends and allies in the psych survivor movement favor the use of advance directives to limit or prohibit forced treatment if they are deemed incompetent – a worthy cause.)

The simple fact is, we’ve spoken to some of the major players in NHDD over the past two years in token, essentially dead-end discussions over bioethics, disability and advance directives. Specifically, these organizations include National Hospice and Palliative Care Organization, Center for Practical Bioethics and The Hastings Center.

Apparently, our complaints about the exclusion of disability advocates from the health policy discussions involving our lives made it obvious that some minimal level of involvement was needed to negate the charge of exclusion. When it comes to the topics of “advance directives” and “end of life” care, the exclusion was deliberate, absolute and longstanding.

So what were the kinds of discussions/projects we were invited to, along with other disability advocates?

  • A discussion of disability ethics issues that couldn’t be further discussed, shared or disclosed with anyone – at least not by us;
  • Participation in a “workgroup” tinkering with deficits in “advance directive” literature in which relatively little input from disability advocates looks like it made it anywhere.

In the meantime, we’ve been invited to “participate” in the “social marketing” of advance directives. Frankly, we have a problem with going full bore with the “social marketing” of a product that was devised by a relatively narrow range of professionals.

There are many problems with the marketing and the promotion of advance directives right now, but I’ll focus on two:

  • There is no warning to the public that advance directives might not be of any use at all if physicians don’t agree with your choices. Under the ever-increasing influence of “futile care” policies, physicians and hospitals may deny you life-saving treatment even if your advance directive calls for it and your health-care proxy demands it. At least part of the reason this “elephant in the living room” isn’t addressed may be that many of the medical organizations participating in NHDD support “futile care” policies.
  • In discussions with disability advocates, advance directives are described as a way to state what you do want in the way of treatment as well as what you don’t want. And, in all fairness, some of the forms being used provide space for those options of desired treatments. However, the long-term focus on – and usage of – the problematical term “end of life,” has resulted in “advance directives” being framed as an “end of life” issue, as can be seen in the “facts” section of the NHDD website. On this page, you’ll see that the discussion quickly leaps from “advance directives” to “end of life” issues. This inevitably encourages most people to think about “advance directives” as being about ending their lives, rather than making a clear statement of “treatment preferences.”

So forgive us if we don’t join the current effort. We do think it’s best to make sure you pick someone you trust to make decisions on your behalf should you need that while in the hands of the medical system. We just don’t want to sign onto this flawed effort and product.

And while it’s true that we can’t complain of total exclusion right now, we’re a long way away from inclusion. A couple of token efforts don’t come near to making up for the years and years of excluding disability advocates from the public policy discussion table.

So we’ll pass on being part of this parade. –Stephen Drake

Pope Benedict’s Personal Experience with Euthanasia

euthanasia, Our News & Commentary Blog, religion

This blog doesn’t generally deal with religious leaders or the religious perspective(s) on euthanasia, assisted suicide, medical killing and other related topics. There are several reasons for this. For starters, NDY is a secular group. Second, NDY is a disability rights group.

If that’s not enough, there is plenty of exposure on the internet and in the media for religious viewpoints. This is our space for making our case.

Having said that, though, there’s good reason once in awhile to share something from the realm of religion.

The good reason today is that Pope Benedict XVI is visiting the United States this week. It’s not clear if he’ll be talking much about euthanasia while he’s here. He has other stated priorities, including mending bridges over multiple sex abuse scandals here in the U.S. and giving an address at the United Nations.

A couple of pro-life sites mentioned something about the Pope I hadn’t heard before regarding his experience with euthanasia, and motivated me to find out more about something I hadn’t heard before.

It turns out that this particular Pope’s feelings regarding euthanasia may be as rooted in personal experience as they are in his religious beliefs, according to a recent children’s book about the life of Pope Benedict XVI. (his name was Joseph Ratzinger before election to his current office)

This story in The Scotsman provides an important glimpse at an early chapter of his life in Germany:

At around the same time in 1941, one of Ratzinger’s cousins, a 14-year-old boy with Down’s syndrome, was killed by the Nazi regime in its campaign of eugenics.

It’s certain that Pope Benedict will be speaking out against euthanasia in the future. I hope that he includes the story of his cousin’s death when he does so. It’s important story to illustrate his own firsthand knowledge – the knowledge that medical professionals and the state are fully capable of rationalizing killing as both “cost-effective” and “merciful.”

He might find his message reaching a larger audience that way. –Stephen Drake