Wednesday, June 23, 2010

Provider Refusal and Hospital Visitation Rights.

The Centers for Medicare and Medicaid Services today announced that all hospitals are required to issue policies for visitation rights that do not discriminate.

I wonder if the "conscience clause" as imposed by Bush W. in his last month in office will still allow providers to refuse visitation by those they are morally or religiously opposed to? Namely, same sex partners. Cohabitating partners?

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Celebrating 20 Years of ADA.

Press Release

For Immediate Release

The New York Public Library Celebrates the 20th Anniversary of the Americans with Disabilities Act with ADA Day on July 7th

New York, NY – In commemoration of the signing of the twentieth anniversary of the Americans with Disabilities Act, The New York Public Library with host ADA Day on Wednesday, July 7 in the South Court Auditorium of the Stephen A. Schwarzman Building located at Fifth Avenue at 42nd Street. Throughout the afternoon there will be a series of free programs, screenings, and performances related to and about the disabled. All programs will have Real-time (CART) captioning, and assistive listening devices will be available. ASL interpreters will also be provided.

The schedule for the day will be as follows:
3:00-5:00 p.m. The ADA: On the Personal Level
Matthew Sapolin
, Commissioner of the Mayor's Office for People with Disabilities, will kick off the celebration by reflecting on the changes that the ADA has brought about.
Ruth O'Brien, Professor, author and editor, will moderate a panel on the topic of the ADA and the difference it has made in the panelist's lives. Panelists: Leonard Kriegel, author of Flying Solo: Reimagining Manhood, Courage, and Loss; Stephen Kuusisto, author of Planet of the Blind; and Achim Nowak, author of Power Speaking: The Art of the Exceptional Public Speaker.
Panelists are all contributors to the book Voices from the Edge: Narratives about the Americans with Disabilities Act , edited By Ruth O’Brien.

6:00-8:00 p.m.: Evening Arts Panel: Film, Poetry, Dance, and Discussion.
Roger Ross Williams, director of Academy Award-winning film Music by Prudence , about a Zimbabwean band composed of people with disabilities. Film will be screened.
Gary Glazner, founder of the Alzheimer's Poetry Project will perform some short pieces.
Heidi Latsky, founder and choreographer of The GIMP Project. There will be a short performance, Two Men Walking (performed by Lawrence Carter-Long and Jeffrey Freeze, music by Sxip Shirey.)

After the screening/performances, Roger Ross Williams, Gary Glazner, Heidi Latsky, Lawrence Carter-Long and Jeffrey Freeze will assemble on stage for audience questions.

There will also be a series of free programs regarding disabilities throughout July held at the Mid-Manhattan Library located at 455 Fifth Avenue. The programs currently scheduled include:

Wednesday, July 14, 2010, 6:30 p.m.
Disability, Access, and the Law. Joel D. Ziev, Ed.D., Director, Partners for Access and Ted Finkelstein, Director of Project Equal Access, NYC Commission on Human Rights

Wednesday, July 21, 2010, 6:30 p.m.
Hearing Loss and the ADA. Lise Hamlin, Director of Public Policy, Hearing Loss Association of America and Amy Boyle, Director of Public Education, Center for Hearing and Communication

Wednesday, July 28, 2010, 6:30 p.m.
Twenty Years of the ADA: A Look Back, A Look Forward, and Where We Are Now. Paul J. Tobin, President and CEO, United Spinal Association and Lawrence Carter-Long, Disability Rights Activist

For more information about these programs you can visit The Library’s website at

About The New York Public Library
The New York Public Library was created in 1895 with the consolidation of the private libraries of John Jacob Astor and James Lenoxwith the Samuel Jones Tilden Trust. The Library provides free and open access to its physical and electronic collections and information, as well as to its services. Its renowned research collections are located in the Stephen A. Schwarzman Building at Fifth Avenue and 42nd Street; The New York Public Library for the Performing Arts at Lincoln Center; the Schomburg Center for Research in Black Culture in Harlem; and the Science, Industry and Business Library at 34th Street and Madison Avenue. Eighty-eight branch libraries provide access to circulating collections and a wide range of other services in neighborhoods throughout the Bronx,Manhattan, and Staten Island. Research and circulating collections combined total more than 50 million items. In addition, each year the Library presents thousands of exhibitions and public programs, which include classes in technology, literacy, and English for speakers of other languages. All in all The New York Public Library serves more than 17 million patrons who come through its doors annually and millions more around the globe who use its resources at

Contact: Jonathan Pace| 212.592.7710 |

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WH Patients' Rights Page.

You can read the White House's publicity regarding the "patient's rights bill" here:

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Rational Rationing.

Bioethicist Jacob Appel, writing at HuffPo, notes the recent Bentacourt case in New Jersey of futile care and distinguishes between rational rationing and irrational rationing. He writes:

The facts underlying the case are indisputably tragic. In 2008, Betancourt underwent cancer surgery at Trinitas Regional Medical Center, a Roman Catholic hospital in Elizabeth, and later suffered an irreversible anoxic brain injury when his breathing tube became displaced. By 2009, the seventy-two year old was unconscious, kept alive by a ventilator, artificial kidneys and tube feeds. Infected ulcers covered his body. Unfortunately, the patient left no advance directive stating what he wanted done under such circumstances. The team of physicians treating Betancourt determined that he was in a vegetative state and, reportedly in consultation with the hospital's ethics committee, sought to forgo extraordinary forms of therapy, such as dialysis and cardiopulmonary resuscitation. Betancourt's daughter, Jacqueline, who rejected the medical team's view that providing such treatment to her father was merely prolonging the dying process, then obtained a court order for additional care. While the hospital appealed on the grounds that continued interventions were both medically inappropriate and unethical, Betancourt died. However, as the questions raised by this tragedy are likely to arise again in other end-of-life cases, New Jersey's Superior Court is expected to issue an opinion in Betancourt v. Trinitas that will clarify whether physicians and hospitals may refrain from providing costly care that they believe to be unconscionable.
For much more on the case and the potential ramifications of the court's decision, read details at Thaddeus Pope's site Medical Futility Blog. Pope was a witness in the trial. He also discusses Appel's article at HuffPo.

Appel takes a lot of grief from the likes of Wesley J. Smith for his "practical" approach to allocation of medical resources. In the post Appel writes (and I quote a lot because I think it is important, particularly his clarification of how the definition of death has changed, something I write about often):

There is a fundamental difference, however, between asking to be permitted to keep a vegetative relative on costly machinery, and asking the taxpayers or society as a whole to pay for such machinery. Money spent on vegetative patients is money not spent on preventive care, such as flu shots and mammograms. Each night in an ICU bed for such patients is a night that another patient with a genuine prognosis for recovery is denied such high-end care. Every dollar exhausted on patients who will never wake up again is a dollar not devoted to finding a cure for cancer. While the visible victims may draw the headlines and attract indignant protests from so-called "pro-life" organizations, the invisible victims are people like you and me who will suffer from diseases that are never cured because funds are being poured down a healthcare sieve in order to maintain permanently-unconscious bodies on complex and costly forms of life support. I suspect that the vast majority of people, not knowing in advance whether they will either end up in a permanently vegetative state or be diagnosed with cancer, would prefer that any resources that would be spent on PVS care be reallocated to cancer research--or some similar enterprise that has the potential to help human beings who might actually recover.

The stark reality is that modern end-of-life ethics are on a collision course with themselves. As technology enables people to remain "alive" on ever more complex equipment, such as bilateral ventricular assist devices and extra-corporeal membrane oxygenation machines, the line between life and death blurs. Soon enough, a patient may be able to remain on such apparatuses for many months, long after meaningful brain function has ceased, until his skin and tissue begins to putrefy. When does such an existence transcend the barrier between living and dead?

Those who favor funding unlimited care for PVS patients tend to view the difference between these cases and other severe illnesses as a matter of degree. As a result, they worry about a slippery slope that might ultimately result in our pulling the plug on the cognitively intact but disabled. Yet PVS patients should instead be viewed as different in kind from other medical cases. In essence, the Betancourt court can decide that physicians and taxpayers only have a duty to provide unlimited care to patients who have a meaningful chance of returning to consciousness. Let us make no mistake about what this would mean: It would mean declaring that the lives of PVS patients are worth less than those of others. Rather than shying away from this outcome, progressive bioethicists should have the courage to acknowledge and to embrace this proposition.

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