Sunday Night Oscar Protests Against Humanitarian Award for Jerry Lewis

Long-time readers of this blog might remember that Not Dead Yet took part in the blog against the telethon in 2007.

Jerry Lewis and the MDA telethon have been powerful producers and reinforcers of negative stereotypes of people with physical disabilities, all of whom get to be the victim of the negative stereotyping. MDA and Lewis more or less shrug off the criticism with an “end justifies the means” rationale, pointing to the money raised for MDA medical research and clinics. Putting that argument aside, that excuse means absolutely nothing to people with physical disabilities that are affected by the stereotyping but don’t fall under MDA’s target population, research and clinic-wise.

Needless to say, there was quite a reaction when the announcement came out last year that Jerry Lewis would be given a “special” Oscar – to honor his humanitarian efforts – meaning, of course, the MDA telethon.

For anyone interested in the broader construction of people with disabilities as objects of pity, please check out the following links for information on the long struggle with Lewis and the telethon – and last night’s protests:

The Trouble With Jerry gives background and links to news coverage of the backstory and last weekend’s protests.

NDY founder and president Diane Coleman gives her account of the Rochester, NY protest, with links to local coverage. –Stephen Drake

Good News: Hawaii legislature shelves assisted suicide legislation – for now

In addition to the situations in Montana and New Hampshire, there’s been considerable concern of a renewed effort to reintroduce and pass a bill that would legalize assisted suicide in Hawaii.

According to the Honolulu Advertiser, that isn’t going happen – for now, anyway:

HONOLULU — The Hawaii Legislature will not take up a proposal to allow assisted suicides in the state.

House Judiciary chairman Jon Riki Karamatsu said Wednesday he will not hear a bill that would allow terminally ill adults to get a lethal dose of medication to end their lives.

Karamatsu says advocates of the measure haven’t pushed strongly for the bill to be heard this year. He says he’s open to considering it in the future.

Any day we have one less front we have to fight on is a good day. –Stephen Drake

New Hampshire: Testimony Against Assisted Suicide Bill at House Judiciary Committee

Yesterday, the House Judiciary Committee of the New Hampshire legislature held a hearing on a bill that would legalize assisted suicide in that state.

Diane Coleman, founder and President of Not Dead Yet, wrote about it on the Center for Disability Rights blog yesterday:

Many people know that CDR is active in advocacy on the national level, and provides support and technical assistance in other states. That is also true of Not Dead Yet, which now has its national headquarters in CDR’s Rochester offices. Today, February 19, 2009, the House Judiciary Committee in New Hampshire held a hearing on HB 304 (http://www.gencourt.state.nh.us/legislation/2009/HB0304.html), which is titled “AN ACT relative to death with dignity for certain persons suffering from a terminal condition.” In case the wording leaves you in doubt, this is a bill to legalize assisted suicide.

This particular bill is broader in terms of who would be eligible for assisted suicide than any similar bill introduced in the U.S. so far. Other bills limit “eligibility” to people diagnosed to have less than 6 months to live, but the NH bill actually expands the definition of “terminal” in a way that makes virtually anyone with a significant disability or chronic condition “eligible” for legal help in killing themselves. You can find an analysis of this element of the bill at the Not Dead Yet blog at http://notdeadyetnewscommentary.blogspot.com/2009/01/new-hampshire-poised-to-redefine.html.

If pro-assisted suicide advocates were hoping to dominate the testimony today, they are in for disappointment. New Hampshire activists Bunny McLeod and Tom Cagle offered personal testimony. The Disability Rights Education and Defense Fund (DREDF) submitted written testimony by Marilyn Golden. Dr. Ira Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center submitted written testimony in opposition to the bill based on his extensive experience as a palliative care physician. I prepared testimony submitted on behalf of Not Dead Yet (NDY).

Read the rest of the entry, including links to the complete text of the testimony listed above.

Journal: Nurse’s research into the ethics of organ donation causes her to reconsider her support

Once in awhile, something comes along that really surprises me. This is one of those times.

The January issue of Nursing2009 not only has an article harshly critical of organ harvesting regulations and protocols, it has made the article available online.

In Speaking up for organ donors (link to html version, with additional link to pdf on the page), Ellen Bridget Linde, RN, BSN explores the values she and other nurses espouse and how they come into conflict with organ harvesting practices.

From the article:

AS NURSES, WE FACE TOUGH ethical dilemmas as we provide end-of-life care, especially when our patients are candidates for organ donation. In this article, I’ll explore two basic issues: how death is defined and who makes decisions for potential organ donors who haven’t made their wishes known. First, let’s look at some basic ethical principles.

Examining your values

Nurses must consider respect for life and bodily integrity in light of the procedure for recovering organs. Nursing is primarily grounded in beneficence (doing good) and nonmaleficence (not doing harm). But nurses interpret these guiding principles in various ways. Some, believing that removing vital organs is what kills the patient, view organ donation performed under current criteria for pronouncing death as an act of killing. Others suggest that organ donation is a “moral duty, an obligation,” considering society’s lack of alternative healthcare resources. But not all nurses are comfortable with a value system driven primarily by the needs of transplant recipients rather than by the needs of the potential donor.

The middle of the article details the various ways in which death has been defined and redefined, partly in response to the demand for more availability of organs for transplantation. Since the article is freely accessible, I leave it to others to go read the exploration of the complications surrounding brain death, non-heart-beating donation, and other matters affecting organ harvesting practices.

Bottom line: there are non-trivial conflicts between traditional values espoused in the nursing profession and organ harvesting practices to make a number of practitioners a little queasy:

Studies indicate that although nurses generally report positive attitudes toward the idea of donation, their unwillingness to donate their own organs or the organs of their family members suggests either some uncertainty or other barriers to donation. Perioperative nurses involved in organ procurement experience a variety of feelings as they participate in the removal of organs from a body that physically appears the same as that of any other surgical patient. Perioperative nurses have described their participation in organ procurement as disrespectful, traumatic, and emotionally draining.

Where do I stand on organ donation? When I started researching this article, I was an avid, outspoken advocate for organ donation, but I’ve since had a change of heart. Shewmon’s study of 175 patients who met the full criteria for whole-brain death led me to conclude that it’s ethically wrong to recover organs from a person who’s still breathing—regardless of whether or not breathing is achieved through mechanical ventilation. Although I’m no longer a potential organ donor, I’m an avid and outspoken supporter of stem cell research because I believe it’s a realistic alternative to organ procurement.

The Shewmon study referred to showed that many individuals meeting the full criteria for brain death were still alive in ways that this nurse considered meaningful.

Neither the Shewmon study nor this article come close to talking about some even more disturbing aspects of brain death determination.

More about that next week. –Stephen Drake

(thanks to Nancy Valko for pointing this article out)

NJ: Woman Finds Aneurism + Medicaid = SOL*

*”SOL” is an acronym. If you don’t know what it stands for, you can look it up.

From the Hudson Reporter:

After being diagnosed with a medical condition that threatens her life, a Union City woman was forced to spend two critical months searching for a doctor willing to help her.

Peggy Albedhady, 47, learned she had a 6-millimeter brain aneurysm, an abnormal bulging of an artery in her brain, last November. She said that since then, she has been discharged too early from two prominent area hospitals and denied appointments with dozens of doctors.

The reason for so many rejections, she said, is her insurance: Medicaid.

Medicaid, a state and federally funded program, provides healthcare coverage for disabled individuals and people with little to no income.

“I don’t have a lot of money,” she said last week. “Does that give me the right to die?”

That’s what I’d call a rhetorical question. The answer is obvious, isn’t it?

Dying is cheap, doesn’t demand much of bureacracies, and no one has to worry about you filing a complaint in regard to the lack of follow-up care – or its quality.

When she collapsed on the way to the bathroom, her daughter told her it was time to go to the hospital. They went to Hoboken University Medical Center’s emergency room, but there was a very long wait, said Albedhady, so her daughter suggested they go somewhere else. They decided to go to a hospital with a great reputation, so they went to Hackensack University Medical Center.

Albedhady was admitted to the hospital. Tests revealed she had a brain aneurysm, as well as Hepatitis A and B. She was scheduled for further testing, but five days later, she said, she was abruptly discharged without the tests or an explanation.

“[They] discharged me like I can’t describe it,” said Albedhady. “Like you got tired of your animal, you got tired of your pet, and you just throw it out in the street.”

Albedhady’s description of the treatment of pets is somewhat different than some views we’ve discussed on the blog recently. Peter Baume, Dr. Gifford-Jones, and Thaddeus Mason Pope all recently embraced the idea that humans would benefit from the “kindness” we humans show our pets.

Albehady’s experienced some of the “kindness” firsthand and doesn’t seem to think much of it.

To be fair, the article says that there are medical professionals – including specialists – who will take Medicaid patients where Albedhady lives. It would be nice to think that the hospitals who threw her out gave her a list of them, but they didn’t. Apparently, they don’t think it’s their job to make locating the appropriate physician any easier for a patient with a critical condition. When she was finally able to locate an appropriate specialist, the only opening to see her was months away. That will be a relief to her – if she lives that long.

There are a lot of people out there who have concerns about limits to care under plans to get something close to universal health coverage in this country. Some of those concerns may even be justified.

But it’s hard to imagine a system in which Peggy Albedhady would fare worse than the one that she’s in right now. –Stephen Drake