What Happens When Someone Wants Life-Saving Treatment, But Their Guardian Disagrees?

bioethics, Our News & Commentary Blog, Surrogate Decisions & Guardianship

Last summer, we received news about a local guardianship case. It’s the kind of case that deserves greater attention than it got at the time. This particular case was handled by Equip for Equality (EFE), the Illinois organization that is part of the national, congressionally-mandated Protection & Advocacy Network.

This is an important case – it shows us just how badly the power of a guardian can be abused and what it takes to get that guardian’s decision overturned.

Darrell, a man with mental illness living in a nursing home, was experiencing liver failure as a result of his long-term use of psychotropic medications. To maintain his health, he needed dialysis three times a week at the local hospital. When it was discovered that he also had late-stage cancer, his father, who was Darrell’s guardian but rarely visited his son, decided to terminate the dialysis and let his son die. Darrell, however, was aware of his situation and asked to continue treatment. A social worker acquainted with the case contacted Equip for Equality to seek help in protecting Darrell’s right for continued dialysis. She told Equip for Equality that Darrell would die quickly if he lost his treatment and action needed to be taken promptly.

Equip for Equality spoke to Darrell, who specifically requested dialysis and indicated why he needed and wanted it. Within a day, Equip for Equality prepared a Petition for Temporary Restraining Order (TRO) and affidavits, and arranged for witnesses to be present for the hearing. The next day, the court entered a TRO requiring the guardian to comply with Darrell’s wishes and allow the dialysis.

The hospital, however, was reluctant to abide by the order because the attorney believed that the hospital, which was located in Indiana, was outside the jurisdiction of the Illinois court. Equip for Equality persuaded the attorney that the hospital was indeed bound by the order under the Full Faith and Credit Clause of the U.S. Constitution, and the hospital soon relented to the order and administered the dialysis.

Darrell lived for nine more days. His mother, who had maintained close contact with her son for decades, related to Equip for Equality that Darrell’s last days were spent with her and his siblings and that the extra days obtained through Equip for Equality’s efforts brought the family precious time, peace and closure. (Copyright © 2001–2007 Equip for Equality. All Rights Reserved.)

The successful intervention in the case of Darrell is no cause for comfort, since it raises troubling questions. What would have happened to Darrell without the call from the social worker? What would have happened if no one at EFE was available to take the case on short notice? How many people under guardianship have had similar decisions made for them, but had no one to plead for legal advocacy on their behalf? (We don’t assume that all social workers would respond in the way that the one in Darrell’s facility did) How was a guardian even able to order stopping a life-saving measure for an individual who clearly stated that he wanted it?

We don’t have the answers to these questions, but we had concerns about these issues several years ago. During the Robert Wendland case, changes in the California probate code had broadened the powers of conservators. The statutory change was the basis for the argument put forth by Robert Wendland’s wife in her efforts to get his feeding tube removed in the absence of either an advance directive or a durable power of attorney. Wendland was what is now labelled as a “minimally conscious state.”

The California Supreme Court, which denied the petition for removal of Wendland’s feeding tube, expressed concern over the statute changes:

While section 2355 is written with sufficient breadth to cover all health care decisions, the Legislature cannot have intended to authorize every conceivable application without meaningful judicial review. Taken to its literal extremes, the statute would permit a conservator to withdraw health care necessary to life from any conservatee who had been adjudicated incompetent to make health care decisions, regardless of the degree of mental and physical impairment, and on no greater showing than that the conservator in good faith considered treatment not to be in the conservatee’s best interest. The result would be to permit a conservator freely to end a conservatee’s life based on the conservator’s subjective assessment, albeit “in good faith [and]based on medical advice” (§ 2355, subd. (a)), that the conservatee enjoys an unacceptable quality of life. We find no reason to believe the Legislature intended section 2355 to confer power so unlimited and no authority for such a result in any judicial decision. Under these circumstances, we may properly construe the statute to require proof by clear and convincing evidence to avoid grave injury to the fundamental rights of conscious but incompetent conservatees. (p.45)

Rose Wendland’s petition, based on the broad interpretation of the statute changes, was supported by 43 bioethicists. Evidently, they thought the expansion of the powers of conservators was a good thing.

It’s probable that there are similar problems in many states. The statutory changes in California occurred as the result of advocacy on the part of well-funded groups who targeted these laws — and kept disability organizations away from the table when they did so. We fear that Darrell’s case may be the tip of a very large iceberg – and the stories hiding beneath the surface don’t have many happy endings.

Jerry Lewis’ Unforgivable Harm to Young People

media issues, Our News & Commentary Blog, pity, telethon

(Editor’s note: We are participating in the “blog against the telethon,” organized by Miss Crip Chick and Kara Sheridan. For a comprehensive list of links to others blogging against the telethon, please check out Kara Sheridan’s site – she’ll be adding links as the notifications come into her. While you’re at it, you can also check out the Washington Post website and read Ben Mattlin’s No Longer One of ‘Jerry’s Kids.’ The entry below is written by Diane Coleman, founder and president of Not Dead Yet.)

When Mike Ervin co-founded Jerry’s Orphans in 1991, I was living in the country outside Nashville, and organized local disability activists to picket the TV station that carried the Telethon. Protest is viewed as especially impolite in southern communities, but I always felt that preventing the Telethon from harming young people with disabilities should trump other arguments and discomforts. Thank you to the many disability rights leaders who have written so persuasively about the harms caused by the Telethon’s message of pity.

One form of Telethon-related harm that many of us with neuromuscular disabilities have experienced is the incorrect prediction of an early death, along with the failure to mention a wide array of options for breathing support to extend life. My friends who use bipap machines at night due to post polio syndrome taught me about my options. But I’ve lost at least two younger friends to respiratory crises who never pursued breathing support. One said she feared it would be burdensome.

Even with breathing support, some children with neuromuscular disabilities will die young, and that’s tragic. It’s difficult to fault Jerry Lewis for mentioning that during the Telethon, even though I thought he should also say something positive about breathing supports.

But during the 2001 Telethon, Lewis crossed a line in a way that continues to shock and anger me. He told the story of a 15-year-old with muscular dystrophy who was on a vent. Lewis was contacted because the young man said he wanted to go off the vent and die. Lewis reported to the Telethon audience that when he telephoned this young man, he apologized to Lewis for not beating the “disease.” He’d told his parents that he was sorry for having brought them down and being a burden. He took himself off the vent (which could not have been done without the permission of his parents). This, said Lewis, is why we have to beat this disease. Lewis said not a word about assuring him that he was not a burden, or arguing that this was a bad reason to decide to die, or suggesting that he wait-and-see, not even to wait for the cure the Telethon has been promising all these years.

Lewis gave no sign that he fought for the life of this 15-year-old young man during that phone call. By the time of the 2001 Telethon, he had already died. The worst part of Lewis’ account is that he was then speaking to all the other young people watching the Telethon – from nondisabled fundraising scout troops to teens with neuromuscular disabilities on ventilators. And what they heard was that Lewis did not express one word of disagreement that this young man was a burden to his parents, nor did Lewis disagree with his decision to die for their sake. His silence on these issues was a profound abandonment of those who look upon him with trust. It is an unforgivable harm. –Diane Coleman

Action Alert: September 3rd is “Blog Against the Telethon Day”

action alert, Our News & Commentary Blog, protests, stereotypes, telethon

(Thanks to Mike Reynolds for the “heads up” on this)

From Miss Crip Chick (“just your everyday southern, queer disabled woman of color):

Jerry Lewis is the host of the Muscular Dystrophy Association’s Annual Telethon, a telethon that occurs every Labor Day to raise funds for cures by using disabled people as posterchildren. Disabled people protest the telethon because of its outdated, negative portrayal of disabilities. These images that the telethon promotes sticks in people’s minds and continually serve as a barrier for disabled people. Disability is not the problem, but rather the attitudes and barriers that society places on us.

What can we do? Protest. Write a Letter to the Editor. Tell people about the charity, medical, and social model of disability. Blog. Kara and I, along with the Disability Activist Collective (website coming soon) are organizing a campaign against the telethon and the charity model of disability. We need bloggers (not only disability bloggers but all! feminist, queer, woc, environmentalist, activists, great time to build alliances) who will agree to write about this! The campaign will work much like a blog carnival and will be heavily publicized in listservs and other sources of media. We encourage you to participate! To participate, please a comment or email us at consciouslycrip@gmail.com. We will be announcing the campaign on Thursday via media and will tell them to check the website postings on Monday. The campaign will be posted on Kara’s site.

I’m not sure if I’ll be blogging or not on the 3rd. I do my blogging from my office and I am not sure if I’ll be here then. But we support this effort. NDY founder Diane Coleman joined Jerry’s Orphans and started organizing local telethon protests when the group first formed in 1991.

A lot of visitors to this site are from outside the disability community and probably don’t have any idea why a group like Not Dead Yet would care about the telethon.

It’s a complex issue, but here it is as succinctly as I can put it:

There are powerful cultural stereotypes that promote the widespread belief that tragedy, grief, and suffering are inevitable aspects of disability; furthermore, those same stereotypes suggest that those emotions put the blame for those feelings on the disability itself, rather than any social factors such as segregation, isolation, or impoverishment. Thus, according to people who believe those stereotypes, the only “relief” a person with a disability can hope for is a “cure.”

The annual ritual of the telethon is a strong perpetuator of these stereotypes. And there’s a very real cost to the enduring nature of these stereotypes.

That’s where the connection between the “Blog Against the Telethon Day” and NDY come in. When disabled women are killed by their husbands or boyfriends, the public often jumps to the conclusion that she “asked for it” or that it was an act of kindness – rather than viewing as the act of violence it really was. You can read more about that dynamic in “Criste Reimer’s Death Not About Health Care Debt or Compassion.” It’s one reason that public (and press) responds with sympathy rather than outrage when a parent kills a child who has a disability.

And, of course, it impacts the public – which mostly supports the idea that suicide is an irrational act. An alarming portion of the public will set that assumption aside when a disabled person wants to kill him or herself. Then it tends to be seen as very rational – and even encouraged in some cases. The telethon helps to maintain this destructive mindset in public attitudes.

If you want graphic examples of just how the telethon and Jerry Lewis have pitched “pity” as the the appropriate response to people with disabilities, please visit Miss Crip Chick’s blog. She has shared some examples and links to a number of sites with still more.

Social Reverse Triage in Washington State

assisted suicide, Our News & Commentary Blog, Washington state

You’ve taken over 300 million breaths in your life. You can’t imagine your next breath being your last.

Most of us don’t like thinking about dying. Those who do think about it usually do so in a clinical or academic way. Confronting death for real is hard.

Washington Compassion and Choices plans to wage another statewide initiative to legalize assisted suicide. They have decided the quality of life of people with terminal illnesses is so bad that it’s not worth living.

The right to die movement is more about politics than “end of life” decisions. A person with a terminal illness using assisted suicide to end their life is an insurance company’s dream.

Opposition to assisted suicide by Not Dead Yet and people with disabilities has tempered the right to die movement’s political efforts to include disability as a reason for using assisted suicide. Many of the people Dr. Jack Kevorkian helped to end their life were people with disabilities. The most vocal champion of Washington’s assisted suicide initiative is former Governor Booth Gardner. Governor Gardner has a disability and believes assisted suicide should be a choice available to him in ending his life.

We are not sure if the initiative will include people with disabilities as eligible candidates or stick to technically limiting the target population to people with terminal illnesses. In February, 2006 Booth Gardner told the Seattle Times-Intelligencer he wanted a law that would allow “doctors to give lethal injections to patients. Whether it’s “limited” or not, if the initiative passes it won’t take long for the right to die movement to push for something broader. The right to die “movement” considers itself a “movement” because their efforts today are just the beginning of where they plan to go in promoting assisted suicide and euthanasia. (see editor note at the end)

People with disabilities in Washington state know it’s too easy for doctors to decide that a disability is a terminal illness. We know assisted suicide will be recommended for people with disabilities if it becomes legal.

When I read materials from Washington Compassion and Choices it reminds me of Dr. Anna Pou, the New Orleans Doctor who inexplicably escaped criminal charges of giving a lethal doses (Pou denies her intention was to kill, but witness accounts are at odds with her claim) of morphine and versed to four patients. Dr. Pou describes “reverse triage.” “Reverse triage” is the approach she used in deciding what patients would leave the hospital and what patients would receive heavy doses of morphine and versed.

“We divided patients into groups one, two and three. Patients in category one are able to sit up and walk and are not very sick. Patients in three are critically ill, “Do Not Resuscitate.” The ones in category two were sick, but doing much [better than those in category three]. The triage system was very crude—we’d write the number 1, 2 or 3 on a sheet of paper and tape it across the patient’s chest with their hospital records.”

I believe the people of Washington state will again decide that we do not want to adopt a sick method of social reverse triage and defeat the assisted suicide initiative. —Duane French

(Note – for a recent example that gives a rare look at the broader agenda within the pro-assisted suicide movement, please check out “Death Wish,” which will get more discussion here at a later date. — editor)

NY Times Story on NHBD – Selling instead of Reporting

bioethics, Jane E. Brody, media issues, Our News & Commentary Blog, Ruben Navarro

Given the national publicity surrounding the death of Ruben Navarro, I thought the time could be ripe for a renewed discussion of the ethics surrounding the increasing implementation of the “non heart-beating donor” protocol. According to Maurice Bernstein, on his bioethics discussion blog, there’s a bunch of ethicists discussing whether or not the public is ready to accept this protocol on some email list. That’s the wrong discussion to be having.

The real question, which the Ruben Navarro case reveals, is whether or not medical professionals have the ability to competently and ethically implement the protocol.

(For a review of the details of the Navarro case, please check “Ruben Navarro and Our Need to Speak Out.” A transplant surgeon is facing serious charges for an alleged attempt to “hasten” Navarro’s death during this protocol when his heart refused to stop beating after a ventilator removal. No other professionals in the room – who stood by and did nothing – have faced consequences in terms of criminal charges or disciplinary actions by their respective review boards.)

I had reason to think that we all might revisit the complications and the high standard of performance that has to exist if this protocol can be defended. It was clear from a number of news stories that transplant advocates were worried about the impact of the publicity surrounding the Navarro case.

Well, it looks like they’ve gotten over being worried about it – or at least a reporter at the NY Times and her interviewees failed to show any need to discuss concerns.

The August 28th story by Jane E. Brody titled “The Solvable Problem of Organ Shortages,” falls short of real reporting and can best be described as a public relations piece for the NHBD protocol and the medical institutions implementing the protocol.

When I checked, it looks like the NY Times was one of the few major papers that published only one short AP story on the Navarro case. I can wonder why the Times didn’t find the story worth publishing, but the absence of that coverage certainly helped to provide cover in parts of the story that begged for some reference to the case. For example, there is this paragraph with a blanket and unchallenged statement about “strict regulations”:

Although willingness to donate has risen in recent years, major hurdles remain. Some people, for example, believe incorrectly that patients who might otherwise be saved are sometimes “killed” for their organs. Strict regulations are in place to prevent this.

Anyone familiar with the details of Ruben Navarro’s death would know that, at least in his case, “strict regulations” meant absolutely nothing when a transplant surgeon took over his “care” while Navarro was still alive. The surgeon then allegedly directed massive amounts of morphine and ativan be given to Navarro, which the authorities have said were intended to “hasten” Navarro’s death so his organs would be usable. Anyone who fears being “killed for their organs” now has evidence that this can happen.

Navarro’s unfortunate demise was connected to the practice of planning a death ahead of time, at a convenient time, which has obvious advantages for transplant teams:

Dr. Steinbrook said potential donors included patients on ventilators after devastating and irreversible brain injuries, as might follow a hemorrhagic stroke, as well as patients with high spinal cord injuries and terminal musculoskeletal diseases like ALS, for whom further medical treatment is deemed futile

This is the minefield that Ruben Navarro was placed in. In a wrongful death suit, Navarro’s mother has claimed that she was told the hospital had a policy that limited ventilator connection for coma patients to five days. If the allegation is true, it means that her “consent” to disconnect the ventilator could be viewed as coerced.

The paragraph that follows the discussion of the potential candidates contains some very troubling language:

These patients are technically not dead.

Odd. I would think that someone with high spinal cord injuries or a person with ALS would be considered both legally and “technically” very alive. What’s being implied here?

What it sounds like, is “these patients aren’t technically dead but we can treat them as though they really are dead.”

Patients like Ruben Navarro. –Stephen Drake