Dorothy Livadas Scheduled to Die Today

"end of life", media coverage, medical decisionmaking, Our News & Commentary Blog, Surrogate Decisions & Guardianship

Yesterday, I received email from Ianthe Livadas. Ianthe was removed as her mother’s guardian in a dispute with Strong Memorial Hospital here in Rochester. This is part of what she wrote:

…her current attending (he doesn’t even know her) just told me that CFC has decided that my mother should be disconnected, and that the hospital administration has decided that it will be done at 12:30 p.m tomorrow (Friday, August 29, 2008).

This was reconfirmed later in the day, when WHAM-13 aired a short story announcing the impending death of Dorothy Livadas.

The timing of this would appear to pretty strategic. Anyone who is a political cable news junkie knows about the “Friday news dump.” News “dumped” on a Friday minimizes news coverage – news readership of papers is down, news stations aren’t staffed as well. By the time Monday comes, the news is stale and no longer news at all.

Strong Hospital and the Catholic Family Center picked a perfect Friday for minimizing any attention being given to the death of Dorothy Livadas. The media is focussed on Obama’s acceptance of the Democratic nomination last night and the announcement of McCain’s VP pick today. Not to mention an approaching hurricane down in the Gulf. And it’s a three-day weekend. It’s a good move in terms of burying a story you don’t want covered.

By the time most people read this, Dorothy Livadas will almost certainly be dead.

I can’t claim to know what Dorothy Livadas would want, but I do know that the legal moves, the word games with “brain death” and the cold media calculations over the timing of her death leave me with a cold and queasy feeling. –Stephen Drake

Dorothy Livadas Case Complex – and Hospital’s Misuse of Language Doesn’t Help

"end of life", advance directives, life-ending decisions, Our News & Commentary Blog, reality check, Surrogate Decisions & Guardianship

This entry is a little late.

Others have been writing about the battle over the guardianship of Dorothy Livadas, a battle that has life and death consequences. Both Wesley Smith and Thaddeus Pope have written about the messy situation surrounding Dorothy Livadas.

Interestingly, both Wesley and Pope have termed this case as one revolving “futility.”

I respectfully disagree.

Here’s the short version:

Dorothy Livadas has been in a coma for over five months. She signed a detailed living will that indicated she didn’t want ventilation or tube feeding if she was in a nonresponsive state and not expected to recover. On the other hand, she also named her daughter Ianthe as her medical durable power of attorney, specifically giving her the power to order withdrawal of “extraordinary” measures.

It’s pretty clear that the current situation is what the elder Livadas had in mind when she talked about setting limits to her care. The conflict in this case is that she chose someone to make decisions for her who is apparently going against the elder woman’s written wishes.

In the face of this conflict – and no doubt wanting to free up the hospital bed- the hospital went to court to remove Ianthe Livadas as her mother’s guardian.

On the face of it, this is not about “futility,” but about a case in which there is a real dilemma in regard to what the wishes of Dorothy Livadas would be about her fate. Which should primacy? – her written wishes or the judgments of her appointed decisionmaker?

That makes it all sound so rational and reasonable when I read it, but it really is messier than that. See, Dorothy Livadas is judged to be in a persistent vegetative state. So I was really surprised when I read the opening paragraphs of this August 11th article from the Rochester Democrat & Chronicle:

When Ianthe Livadas arrives at Strong Memorial Hospital, a trio of doctors is hunched over her 97-year-old mother, tapping tendons to check reflexes.

To the rhythm of the ventilator, Dorothy Livadas’ chest rises and falls. A tube stretches from the machine into her mouth.

After a few minutes, the neurological consultant tells Ianthe there’s no sign of brain activity. He asks if she’s familiar with the concept of brain death. (emphasis added)

Brain Death?! Where did that come from? A determination of “brain death” in this state carries legal weight – meaning you can’t demand medical treatment for someone who has been pronounced “brain dead.”

So that was the big issue on my mind when the local ABC affiliate called to interview me for NDY’s take on the Livadas case. You can view the video here, along with the obligatory introductory commercial.

Below is a transcript of the portion of the segment containing my interview by reporter Jane Flasch:

Flasch: Ianthe Livadas filed papers that indicate a physician at Strong made an error when he testified that Dorothy Livadas was brain dead on August 8th. The court papers also allege a week later more medical testing happened and the doctor reversed his decision, declaring she was not brain dead after all.

Now, advocates for Not Dead Yet – that’s an organization which helps patients fight for the right to receive life support care – says there is a very important difference between someone who is brain dead and someone who is in a persistent vegetative state.

Drake: Brain death is supposed to be a clear bright legal line and in fact there would be no court case in New York State if she in fact met the criteria for brain death. You can’t argue for maintaining the life support on somebody who basically has been declared dead. It is a definition of death. And yet here they are (the hospital) pushing that envelope.

Update: On August 2oth, the Appellate Division of the state Supreme Court removed all barriers to removal of life support from Dorothy Livadas. As of today, there is no word of any action being taken.

As I said, this case should be a little more straightforward – and both the local newspaper and the ABC affiliate have done a commendable job in trying to provide straight coverage on this case.

Just a few nagging things…

Has Strong Memorial Hospital ever gone to court to remove someone as a guardian when they were acting in a way that would remove life-saving measures even if it appeared to go against the individual’s written preferences?

Were some doctors playing word (and head) games with both Ianthe and reporters with their sloppy use of the term “brain death?”

If they wonder why Ianthe Livadas doesn’t trust them, they might start looking for explanations with the use – or misuse – of the term “brain dead” in regard to her mother. –Stephen Drake

NDY is back — and in a new home

announcement, Our News & Commentary Blog, update

I am happy to let readers know that Not Dead Yet is alive and well. Our hiatus wasn’t due to any major crises or problems – just the many minor ones associated with moving.

After eleven years based in the Chicago area, Not Dead Yet has moved its headquarters to Rochester, NY. Specifically, we’re now based in an office at the Center for Disability Rights – old friends and allies. CDR is one of the top disability activist/advocacy organizations in the country. That might seem strange – since Rochester boasts a population of slightly under 220,000 people.

But it fits with Rochester history:

Susan B. Anthony and Frederick Douglass both lived in Rochester – and are buried here.

More recently, Rochester was the home of Lucy Gwin, who founded Mouth Magazine, which is pretty much the only radical disability rights magazine still in publication.

This little conservative corner of NY has been the home of some real activism over the years — and organizations like CDR help to keep that tradition alive.

In the interest of full disclosure, I should add that – for what it’s worth – Rochester is the place I grew up and now that I’m back, it’s where I hope to spend the rest of my life.

Important – New Contact Info for NDY:

Not Dead Yet
497 State St.
Rochester, NY 14608-1642

Phone: 585-697-1640
Fax: 585-697-1641

More later….

–Stephen Drake

Delaware House Passes Nonbinding Resolution on Protecting People with Cognitive Disabilities from Medical Killing

bioethics, Our News & Commentary Blog, policy, politics

Some bloggers and activists alerted us to a resolution passed by the House in the state of Delaware on June 30th.

The resolution follows. After the text, I’ll explain why the wording may mislead people to make more of this resolution than it merits.

Here is the legislation:

HOUSE OF REPRESENTATIVES
144th GENERAL ASSEMBLY
HOUSE RESOLUTION NO. 75

ESTABLISHING PROTECTIONS FOR PERSONS WITH SEVERE BRAIN INJURY, IMPAIRED CONSCIOUSNESS, OR WHO ARE OTHEREWISE MENTALLY DISABLED.

WHEREAS, the Universal Declaration of Human Rights asserts that “everyone has the right to recognition as a person before the law” and that “all are equal before the law”; and
WHEREAS, the Americans with Disabilities Act clearly identifies the rights of the disabled to access essential needs and have essential services provided to them; and
WHEREAS, it is becoming increasingly apparent that persons who are suffering from severe brain injuries often have cognitive functions significantly beyond what medical science previously estimated; and
WHEREAS, it is also becoming increasingly apparent that the diagnosis of “persistent vegetative state” or “PVS” is a category that recent science shows is far more uncertain and overly broad than had been previously thought, including a high rate of misdiagnoses of PVS patients who have not been able to exhibit responses, but whose consciousness can now sometimes be measured with medical advances such as neuroimaging and drug treatment.

NOW THEREFORE:
BE IT RESOLVED by the House of Representatives of the 144th General Assembly of the State of Delaware that it is against the public policy of this State and this State’s interest in life, health and safety, for hydration and nutrition that is not harming a patient to be involuntarily removed from a non-terminal, apparently brain-incapacitated patient if doing so will cause the individual’s death. Furthermore, such withholding of hydration and nutrition without: 1) clear written direction from a legally competent patient or, 2) a valid written advance health-care directive that was previously executed by a patient who is now incapacitated and that either allows
such withholding under such circumstances or grants an agent authority to make that decision by an incapacitated patient is also against the public policy of the State of Delaware.
SYNOPSIS
This Resolution establishes protections for mentally disabled individuals in the State of Delaware. The impetus for this Resolution comes from the case of Lauren Richardson, a 24-year-old Delaware woman who, after suffering brain injuries and impaired consciousness, now faces the possible removal of her nutrition and hydration, despite the absence of her clearly specified and legal consent to any such a course of action. The State of Delaware has, through recent legislation prompted by the abuses at the Delaware Psychiatric Center, endeavored to protect the rights of
mentally disabled patients in the First State. Lauren, as a mentally disabled person, is enumerated those same protection and rights.

Warning: the title of this resolution is a lie. While the resolution states that it’s “establishing protections for persons with severe brain injury, impaired consciousness, or who are otherwise mentally disabled,” it doesn’t establish anything, at least not in terms of legislation or enforceable standards.

Here they are, with their definitions, taken from Delaware’s legislative website:

A resolution is the formal expression of the opinion, sentiment or will, of one or both Houses of the General Assembly. There are three types of resolutions:

SIMPLE RESOLUTIONS – A simple resolution is a motion of the house, and deals with the internal affairs of that house only. The effect of its passage does not go
beyond the bounds and the authority of that house.

CONCURRENT RESOLUTIONS – A concurrent resolution is used to accomplish the same purpose in relation to the entire legislature that a simple resolution accomplishes for either the House or Senate singly. A concurrent resolution adopted by the legislature does not become a statute, nor does it have the force and effect of law, nor can it be used for any purpose that requires the exercise of
legislative power.

JOINT RESOLUTIONS – A joint resolution is the most formal, and is addressed to matters that are not the internal affairs of either house individually, nor the internal affairs of the General Assembly as a whole. It is of no legal effect unless it
is passed by both Houses and signed by the Governor. A joint resolution is not a
law but is used to employ temporary measures and has the force of law while in
effect.

As you can see, the “simple resolution” is the weakest of the types of resolutions that can be passed in Delaware’s legislature. And no type of resolution has the “force or effect of law.”

I’m told that resolutions vastly outnumber actual bills in most state legislatures – since they don’t require any change in the law, expenditure of money, and other things that tend to drag debates out, they are vehicles to show their constituents they are trying very hard to look like they’re doing something.

But advocates in Delaware can have the last laugh on this. My hope is that this resolution, which reportedly passed unanimously in the House, can be used as an advocacy tool. It seems reasonable to challenge legislators who were willing to vote these powerful protections into a nonbinding resolution can be challenged to adapt this resolution — so these protections can be put into actual legislation — and making these symbolic protections as real as the force of law can make them. –Stephen Drake

AP Story on Washington State Assisted Suicide Battle

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

The newest Associated Press story on the battle for and against the proposed assisted suicide law in Washington State continues a promising trend that showed itself in California in coverage of that state’s battle over assisted suicide.

The newest trend is this: The diversity of the opposition to legalized assisted suicide is show, rather than having the opposition framed as solely from prolife and religious groups. In particular, disability activists are front and center.

Just to be clear – every coalition against assisted suicide has been a broad one. The coalitions have included religious groups, groups representing low-income workers, medical groups and disability activists/organizations. The reality is the same – it’s the coverage that seems to be changing.

Here’s an excerpt from the latest AP story about the battle in Washington State:

OLYMPIA, Wash. (AP) — There isn’t much John Peyton can do on his own except speak, and soon he’ll lose even that.

The former Boeing computer programmer has Lou Gehrig’s disease, which progressively paralyzes its victims. His doctor gives him three to six months to live.

He is using his last months to oppose a ballot initiative that would allow physicians in Washington state to help terminally ill patients end their lives. Only Oregon has such a law.

“What we’re really doing I believe, is attempting to eliminate the sufferer so we don’t have to deal with them,” Peyton said.

The last quote (followed by some general info on euthanasia worldwide) is from the leading spokesperson for the Washington State chapter of Not Dead Yet:

Critics, including many doctors and disability-rights advocates, say assisted suicide laws could exploit depressed or vulnerable people who worry they’ve become a burden on their families.

“This capitalizes on those fears people have about a disability, about people losing bodily control and function, that people would be better off dead than having to face that,” said Duane French, spokesman for Not Dead Yet, a disability advocacy group that’s part of the coalition against the measure.

Let’s hope this trend continues – it enhances our chances for adding Washington State to the list of states that have said “no” to legalization of assisted suicide.

For more information, check out the Washington Coalition Against Assisted Suicide.