Terri Schindler Schiavo Foundation Partners with Care Facility

A press release last week announced that New Beginnings Medical Center in Medford, New York, will be "dedicated to the memory of Terri Schindler Schiavo." The partnership -- and the Terri Schindler Schiavo Life & Hope Network -- signal in the release that this is the first of a new effort to bring medical facilities into greater partnership with opponents of removal from artificial nutrition and hydration.

The work of the Schindler family on behalf of the "congnitively disabled" has until now been in raising awareness and advocating for those families who object to medical institutions and other family members who seek removal of patients from feeding tubes. Their efforts were reinforced by the Catholic Church's change to the Ethical and Religious Directives that govern all 624 Catholic hospitals in the US in November, 2010. The new guidelines state that artificial nutrition and hydration is "comfort care" and not medical treatment, despite the surgical insertion required for feeding tubes, and therefor removal is up to the hospital (subject to direction from the local bishop) and not the patient's advance directive wishes nor the wishes of the family.

By positing that persistent vegetative state patients are vulnerable to a "culture of death" that seeks to kill them off and that the creation of "safe havens" for such patients is necessary, the Network and it's affiliated care facilities are challenging society's understanding of brain death, disability, autonomy, patients' rights, and the definition of life. From the release:

New Beginnings is a state of the art outpatient rehabilitative facility for Veteran's, Traumatic Brain Injury Survivors and other cognitively and physically disabled persons. It is designed to provide rehabilitation, management and recovery services in an exceptional, stimulating and safe environment.

"We are dedicating New Beginnings Community Center in Terri Schindler Schiavo's memory," said Allyson Scerri, New Beginnings Founder and President. "This is our way of honoring Terri's memory, her battle for proper treatment as a cognitively disabled person, and all others who did not have the chance for rehabilitation," she added.

"We are truly blessed by the vision of New Beginnings Community Center. We believe that this grand opening will set an example for health care facilities across the country to begin to fully understand that just because someone experiences a cognitive disability, and their physical appearance may change, their human dignity does not," stated Bobby Schindler, Executive Director of Terri's Life & Hope Network and brother of Terri Schiavo.

One of the goals at the Terri Schiavo Life & Hope Network is to partner with care centers that provide assistance for brain injured individuals and support for their families.

"This is a very special event for our family and our network. We are delighted to know that New Beginnings will be a great resource and safe haven for those that have experienced a brain injury. The underlying message is that there always remains hope for these patients and their families," stated Suzanne Vitadamo, Director of Development of Terri’s Life & Hope Network and sister of Terri Schiavo.

"We remain optimistic that this will be the first of many extended health care facilities to embrace a 'safe haven' concept of care which will not deny any treatment or therapy to the cognitively disabled and traumatic brain injury survivors," Vitadamo added.

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 www.nypl.org.

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 www.nypl.org.

###
Contact: Jonathan Pace| 212.592.7710 | Jonathan_Pace@nypl.org

C&C Reports on the Status of Aid in Dying in Montana.

You can read the article here.

An aside: I'm delighted to see Compassion and Choices announcing itself under the rubric of patients' rights. I've consistently advocated for various patients' rights groups - women's rights, elder rights, disability rights, medical marijuana rights, LGBT rights - to come together to reform our health care system and end discrimination against minorities. I hope other groups take note and follow in the stand for patients' rights from inequality and discrimination.

*No Good Deed* by Lewis M. Cohen.

Michael Sigman reviews a new book by Lewis M. Cohen, a palliative care specialist, titled No Good Deed at HuffPo today. Sigman brings up a number of interesting issues, including the common comparison of human euthanasia with pet euthanasia, how death has changed over the past 40 years, the case of Terri Schiavo, and provider refusal laws that allow medical personnel to override the wishes of patients. Here are a couple of clips with my comments:

There are millions of Americans...who don't view overwhelming suffering as a worst case scenario, but see iniquity in actions that take death out of God's hands. Cohen hears out Bobby Schindler Jr., Terri Schiavo's brother, who represents a "sanctity of life coalition" of conservative politicians and religious groups -- and some disability rights activists -- who believe Schiavo was murdered five years ago. To them, only God can make life-or-death decisions, and palliative care should be criminalized. (Schiavo, who had existed in a vegetative state for 15 years, had her life support terminated by court order after five lawsuits and fourteen appeals.)

Then there are those, Cohen himself passionately among them, who don't see death as an evil to be avoided at all costs. They believe each individual has the autonomy to make reasonable end-of-life decisions, and that prosecuting doctors and nurses for anything short of criminal malfeasance is a travesty that will only ruin innocent lives and increase patient suffering.

A quick clarification: I fear Sigman is misrepresenting the current use of the term palliative in the first quoted paragraph. If asked, I don't think Bobby Schindler would oppose alleviation of suffering for patients, which is the purpose of today's palliative care. Palliative treatments are sometimes used in conjunction with curative treatments or rehabilitation. In other words, palliative care does not always mean that recovery is impossible.

Palliative was coined in 1973 by Balfour Mount, a Canadian physician, after visiting Cicely Saunders and her first modern hospice in Britain. Because of stigma surrounding the term "hospice," Balfour sought an alternative term and established a palliative ward inside Royal Victoria Hospital in Canada. So yes, the original meaning of palliative was quite tied to hospice. But only because it took the modern hospice movement, with it's focus on comfort care, to commence an examination by the medical industry of how to alleviate pain. We can't forget that well into the 60s, doctors weren't even discussing diagnoses with patients; they were often making treatment decisions for patients without consultation; it was a paternalistic system that treated illness as something akin to childishness. The hospice movement and the founding of palliative care practices coincided with the civil rights and patient autonomy movements of the 1970s. A lot has happened since the 1970s; but we have a very long way to go.

In fact, the in-hospital hospice ward that I volunteer at has a strange mixture of palliative and hospice patients -- primarily because it is hospice nurses who are best trained to alleviate pain! Our palliative patients go home; our hospice patients don't. That it took the hospice movement -- founded in the 70s -- to pioneer this specialization says quite a bit about our medical industry's historical approach to pain.

Palliative care specialists are now working hard to divorce palliative care from hospice care, as they should. More doctors should be versed in pain and symptom alleviation -- and a recent study, which I posted about yesterday, shows palliative care programs are proliferating.

As medical technology and practices continue to improve, it becomes more and more absurd to insist that everyone suffering the end stages of terminal diseases must be kept alive regardless of their wishes. Even leaving aside what Bobby Schindler calls "the whole autonomy thing," such a system would collapse under its own weight. Before long we'd have millions of centenarians hooked up to ventilators for years at a cost so astronomical we'd have to wrap our brains around the term "quadrillions."

Cohen's calm, catholic approach to the debate over how we die doesn't extend to liars. He not only takes on Sarah Palin's grotesque characterization of counseling in this area as "death panels;" he argues that gravely ill people are generally grateful for just such an opportunity.

On the money: I've long contested that offering patients a choice of treatment -- via informed consent and referrals -- would most likely alleviate or greatly reduce the need for rationing in our health care system. When asked, most patients want to die at home but are ultimately, as Joanne Lynn says, "glide path"-ed into aggressive or futile care. But we don't have the tools to guarantee patient choice yet: advance directives or living wills can be contested; doctors still reside in a culture where end of life care discussions are lengthy and not reimbursed; society tends to blame doctors -- and patients! -- for death, as though if they had only fought harder or been stronger they could live indefinitely. As William Colby, the lawyer for Nancy Cruzan's parents, writes, our laws have yet to catch up with our medical technology and our societal stigmas.

In a sense, this debate is tougher even than the impasse over abortion rights. Relatively few women have abortions, but everyone dies. And virtually no woman wants to have an abortion, but most people do want, and demand, the autonomy to make informed end-of-life decisions.

Ah, well. I too make a lot of associations between women's rights and end of life rights, preferring the rubric patients' rights (because it signifies at least the possibility of a broader and more affective coalition of gay, elder, women's and disabled persons' rights). I advocate for informed consent, non-discriminatory, equal-access health care -- for all! But Sigman gets his facts wrong here and there are a number of nuances to both the abortion and, using the "pro-life" frame, "euthanasia" debates that distinguish them. (As much as many would like to find a "moral" stance against both abortion and assisted suicide -- as would many in Britain -- the opposition to both in the US is primarily from the Religious Right. The Religious Left has lost its teeth and moral authority, alas.)

Sigman's assertion that relatively few women have abortions is flat out wrong. One third of women between the ages of 15 and 44 will have an abortion, primarily because so many experience unplanned pregnancies. Half of all pregnancies are unintended; four in ten end in abortion. But he's right that no woman wants an abortion; women are often without the resources or education to prevent them. I think he's trying to make the point that death comes for us all; unintended pregnancy doesn't. And so we should all be paying even greater attention to end of life rights than we do to abortion. (Which is the same point Tony Perkins made last year in a radio show in which he tried to drum up enthusiasm for the anti-euthanasia fight.)

What Sigman misses is who experiences patients' rights violations. I would never argue that the rights of the majority (all of us who are going to die) are more important than those of say, black women (who experience more unintended pregnancies because of educational and economic hardship). In fact, isn't the value of a society judged by how it treats its minorities? But that we will face a broader national discussion regarding end of life care -- and soon -- is accurate, as baby boomers approach their end years.

With the implementation of health-care reform, the fifth anniversary of Terri Schiavo's death and the forthcoming release of the HBO movie You Don't Know Jack, starring Al Pacino as Dr. Jack Kevorkian, the issues raised by Dr. Cohen in No Good Deed are more front and center than ever.

With this, I couldn't agree more. And if you're reading here, I suspect you do too.

Bill Berkowitz on Five Years After Terri Schiavo.

Today marks the fifth anniversary of Schiavo's death. At Alternet, my sometime outlet, Bill Berkowitz summarizes the issue of Schiavo's death for us. Here's a clip:

"In the current debate over health care reform," Americans United's Rob Boston pointed out, "I see the Religious Right once again employing the same strategy: a barrage of lies, with no claim considered too outrageous to circulate. It started with Sarah Palin's 'death panels' and continues as the process winds down with a blast of increasingly desperate e-mails from groups screaming about socialism and government takeovers.

"The simple truth is this: The leadership of the Religious Right has become little more than a collection of toadies for the Republican Party, and their partisan masters have ordered them to stop the bill. Thus, no lie is out of bounds, no strategy is considered too base," Boston added.

As the fifth anniversary of Terri Schiavo's death approaches, her brother Bobby attached himself to a study published in the February issue of the New England Journal of Medicine related to brain activity in patients diagnosed as being in a persistent vegetative state. The Catholic News Service recently reported that "researchers in England and Belgium found that five of 54 patients in states of persistent unconsciousness showed distinct patterns of brain activity on a brain imaging machine in response to questions that required a 'yes' or 'no' answer."

"These results show a small proportion of patients in a vegetative or minimally conscious state have brain activation reflecting some awareness and cognition," the study concluded. "Careful clinical examination will result in reclassification of the state of consciousness in some of these patients."

Terri Schiavo's brother, Bobby Schindler said the latest New England Journal of Medicine study "underscores … why this dangerous and often mistaken PVS diagnosis needs to be stopped when being used as a standard to kill our most vulnerable."

Jon Eisenberg, had a more nuanced take. He told AlterNet that while "it seems fMRI could prove to be a valuable tool for either confirming or disproving a clinical diagnosis of PVS, … it's probably too soon to say for sure how reliable the technique will prove to be. But here's a tough question: If the only signs of awareness are in willful modulation of brain activity, what is to be done if the patient modulates his/her brain activity to give a "no" answer to the question "do you want to be kept alive?"

On the political front, the Orlando Sentinel's Mike Thomas recently reported that Marco Rubio, the young charismatic son of Cuban parents who is now the front-runner as the Republican Party candidate for the Senate -- running against Governor Charlie Christ -- recently accused Christ of having purposefully sat out the Schiavo affair five years ago. In a release issued in late February, the Rubio campaign "whack[ed] … Crist for not being tough on social issues like abortion," Thomas wrote.

The release specifically referenced the Schiavo case: "Crist also received criticism on the Terri Schiavo debate about where he really stood on a Congressional bill that would have let Terri's parents take their lawsuit to save her life to federal courts."

In Using Terri, Jon Eisenberg pointed out that the Religious right was "waging a state-to-state campaign to take away our personal autonomy rights -- in particular, the right to refuse unwanted medical treatment." One of the leaders of that battle is Father Frank Pavone, national director of Priests for Life.

Must Read: Stephen's Post at Not Dead Yet.

What is this term disability? And how does it's flippant, inaccurate or egregious use affect the rights of the disabled?

Read Stephen's post at Not Dead Yet. I'm delighted to find that he and I have much more in common than our escalated and un-nuanced online spats have yet determined.

Here are two good clips. He's writing about the call by the Terri Schindler Schiavo Foundation for disability groups to rise up in support of their boycott of The Family Guy show on Fox for its disrespectful and tasteless skit about Terri Schiavo (on the eve of the 5th anniversary of her death, March 31):

Predictably, the Schindler family reacted. I guess I don't blame them. But in a press release they included this:

The Foundation is calling on all disability rights organizations and pro-life organizations to join us in admonishing the producers and writers of The Family Guy.

To my knowledge, no disability rights organization, including NDY, has chosen to join them.

This hasn't gone unnoticed by June Maxam at North Country Gazette. In her article "Where Are They Now?" Maxam lists the national disability groups that were involved in fighting the removal of Terri Schiavo's feeding tube. She then suggests that the "silence" from the disability community on "Family Guy" is "condoning and advancing the prejudice, bigotry and hatred of the disabled."

The fact is, we're busy with real crises - and the "Family Guy" skit doesn't come close to being a "crisis." NDY is directly involved with coalitions opposing assisted suicide and euthanasia in 4 states, active in a major "futile care" case in one other, involved with a developing court challenge over guardianship limits in another state, providing technical assistance to disability advocates on state legislation, and monitoring the media for grossly inaccurate reporting on the Final Exit Network and individual homicides of people with disabilities. On top of that, we are working with other national disability groups on other disability rights issues through a national network of advocacy organizations that are run by people with disabilities. The majority of our work isn't that visible -we're seeking change, not headlines.

SNIP

Speaking of disability advocacy, tomorrow the Family Research Council is hosting a panel on Terri Schiavo's death. Bobby Schindler is on the program, which describes him as follows:

Robert Schindler, brother of Terri; full-time pro-life and disability rights advocate

I'm sure the Family Research Council loves the conflation of disability rights and "pro-life." That's one thing they have in common with prominent "lefty" bioethicists. No one in the actual disability rights community appreciates it, though. And we don't appreciate the description of Bobby Schindler as a disability rights advocate.

During the fight to prevent the removal of Terri Schiavo's feeding tube, the Schindlers showed little understanding of disability rights - or of the potential importance of the involvement of national disability rights organizations in the debate. Surrounded by their prominent prolife supporters, they almost never mentioned the disability rights organizations supporting the struggle to save her life. If they'd made a habit of mentioning that, it would have been harder for news organizations - Fox, MSNBC, CNN, the networks, etc. to pretend this was all just one more battle in the "culture wars." Unfortunately, framing the fight in terms of the culture wars suited "handlers" like Father Frank Pavone and Randall Terry just fine.

I wish I could say that I have any evidence that the Schindlers have any better understanding of the disability rights community and disability rights issues today than they did back then. I don't. They are not involved in any of the battles mentioned above - and play almost exclusively to Christian Conservative audiences.

Family Guy and the Fifth Anniversary of Terri Schiavo's Death.

A recent episode of The Family Guy on Fox featured a musical segment based on the death of Terri Schiavo. Everybody has been weighing in on the controversy. Here are a few places where you can read more about it:

The Family Guy episode at hulu

Thaddeus Pope's Medical Futility Blog

Deacon for Life

WTSP news in Tampa Bay, Florida notes that the Schindler family is calling for Fox to drop the Family Guy program

From TampaBay.com

Wesley J. Smith at Secondhandsmoke

Press Release from the Schindler family at ChristianNewsWire

And for those of you interested, Family Research Council will host a panel on Terri Schiavo on March 31, the anniversary of her death, in DC. Robert Schindler, her brother (and now the title of full-time "pro-life" and disability rights activist) and other pro life voices will be there. You can find the link for a live webcast (11 am) here.

A Look At Disability Rights In North America.

Journalist Douglas Todd writes for The Vancouver Sun today about the changing landscape of disability rights in North America. The article has a great little history on the disability rights movement and notes the challenges that the disabled still have in asserting their equal rights in society. Here's a clip:

Even though Stainton said Canada has lost its place as a world leader in disability rights, the movement has challenged all of us on a number of charged philosophical and political fronts.

With differing degrees of success, disability-rights advocates have urged Canadians and others to:

- Change the way we talk about and understand disabled people.

- Stop stigmatizing people with disabilities.

- Spend tax dollars on including the disabled in all facets of life.

- Force employers to accommodate people with disabilities.

- Oppose voluntary assisted suicide for those with severe disabilities.

- Respond to the connection between disability and poverty.

- Not forget the disabled in developing countries.

snip

A more crucial emphasis for disabled-rights proponents, perhaps, has been on the need to make a firm distinction between the "medical" and "social" models of disability.

The "medical" model, said campaigners, came out of science in the early 20th century. It was individualistic. The medical model acts as if a person's disability, whether a missing limb or paraplegia, is medical "damage," which places the disabled person outside human normalcy.

In response, advocates of the "social model" of disability have been arguing since the 1970s that the problem for people with disabilities is not that they're in a wheelchair, without a limb or blind.

It is that society doesn't accommodate them, whether with disabled-only parking or books in braille.

With the discussion thus shifting to communal rights for the disabled, people in Canada and much of the Western world began to put their emphasis on reducing social barriers to access and inclusion.

The complex debate over disability models continues to boil, as governments, businesses and employers in the industrialized world are increasingly compelled to do everything they can to accommodate disabled men and women.

Given that the Canadian Charter of Rights forbids any form of "discrimination" on the basis of "physical disability," is there any limit to how far an organization must go to include a person who is visually impaired, in a wheelchair or without a limb?

Even while governments and businesses are being pressed by legislation to include disabled people in every aspect of life, Stainton said courts have been ruling there are financial limits to consider in providing "reasonable accommodation."

snip

The battle for disabled rights has had other unpredicted twists and turns.

One of them is over the so-called "right to die." As advocates for the disabled have continued battling for recognition, they have clashed with people who want laws in Canada and the U.S. permitting assisted suicide for those with severe disabilities and terminal conditions.

Even though polls show the majority of Canadians support regulated euthanasia, disability rights activists have strongly lobbied politicians to make sure no one, regardless of the severity of their disability, should be able to choose an assisted suicide.

In this increasingly bitter debate, disabled activists claim legalizing assisted suicide would be an ethical "slippery slope" that would lead to all disabled people, no matter the degree of their impairment, being devalued as human beings.

In turn, advocates for assisted suicide maintain the arguments of disabled-rights activists are a misplaced over-reaction to their proposals.

Disability and Health Journal Special Issue on Assisted Suicide.

I heard this issue of Disability and Health Journal was coming but I have not yet had a chance to read it. On the outset, from a quick scan of the content, I will say there are a number of things that should be kept in mind when reading it:

*The term "disabled" is currently ill-defined as it applies to various groups. As McDermott (see below) uses it, we will all, should we eventually die of old age or disease, be considered disabled at some point. This is a fantastic position for disability rights to espouse - that disability is not just common but normal. But such a definition of disability does not make the case for or against aid in dying. However, when this definition is coupled with state, church or medical opinions of who should make health care decisions for the patient, patients' rights get very murky.

*A profound fear of the medical profession exists among the disabled. As much as the profession is comprised of members of society, society has discriminated long and hard against disabled persons. And our history, including early to mid-20th century euthanasia activism, has erred on the side of discrimination against the disabled. A fear of society's and medical practitioners' intentions regarding the disabled is understandable. But that does not mean that laws regarding end of life care, or specifically, aid in dying are based in rational and provable science.

*The studies here of how Death with Dignity is used in Washington and Oregon, and public opinion in those states, must be understood against the absence of studies regarding how people die in the rest of the country (absent because end of life care outside of Wash and Oregon is not as scrutinized) and how public opinion of DwD or aid in dying is influenced by misinformation, death taboos, and religious ideology. Public opinion does not determine a law as just or humane. Until more is understood by the general public about how people die, how DwD works, and what forces (and their motivations) work against aid in dying, public opinion cannot determine the Constitutional or humane viability of a law. Education is needed.

*US laws must be addressed as they exist. Opponents of aid in dying have a great propensity for conflating Death with Dignity laws with how the legalization of assisted suicide works in other countries or in their "Culture of Death" construct. The argument that DwD laws will lead to killing of the disabled (or other vulnerable members of society) is not based in fact. Though there are collapsed and imperfect parallels in history of the devaluation of life (WWII) doesn't mean that DwD laws will lead to euthanizing the disabled here in the US in the 21st century. (Using the same faulty logic, "pro-life" groups have argued that legalization of DwD laws are the result of Roe v Wade. They call it the slippery slope.)

*The rights of some patients should never be sacrificed for those of others. It's the lesson of the health care bill, sacrificing women's rights for expanded (but still for-profit coverage). It's the lesson of Catholic hospitals serving pluralistic communities according to Catholic doctrine. It's the lesson of our existing failed health care system which has disenfranchised the most needy. Protection of the rights of the disabled should be considered a fellow-traveler issue with protection of a terminal patient's choice to hasten their death. I look forward to the day when the disabled, the elderly, women, gays and all citizens come together under the rubric of patients' rights.

*Fear of coercion is real. Disability activists fear that assisted suicide will send the message to the disabled that their lives are less worthy or valuable. Yet there is a world of difference between a leukemia patient, ten years into their diagnosis, who has exhausted all treatment options and is given only months to live and a paraplegic patient diagnosed with treatable breast cancer. The role of medicine is to inform the patient of all options. The role of the patient and/or their guardian/proxy is to use their own conscience to make the choice. Death with Dignity, the actual laws as written, in no way violate those sacred roles.

I've looked forward to this journal issue for a long time. I can't wait to reading it.

Editor of the Disability and Health Journal, Suzanne McDermott, writes about the current special issue:

All of the articles published in this special issue emerged during the 2 years the APHA struggled to adopt a policy on assisted suicide. During that time, I personally went from seeing this issue as a personal right to understanding that assisted suicide is at the heart of the disability movement. The broadly used definition of “disability” includes individuals who have limitations in their functional status and/or use assistive devices to maintain function. Almost all people at the end of life can be included in the definition of “disability.” Thus, the practice of assisted suicide results in death for people with disabilities. People with disabilities have been recognized as a health disparity group (included in Healthy People 2010); they experience substantial discrimination in society, and yet they can live extremely high-quality lives. The ADA is civil rights legislation that guarantees equal treatment under the law. From the perspective of the ADA, the assisted suicide debates raise the question: Should we have laws that give physicians the ability to prescribe lethal doses of medicine to people, who are told they have less than 6 months to live, OR should we provide the supports, services, and pain management they need to continue living?

Ethics Forum writes that the reasons disabled persons are vulnerable under laws that allow assisted suicide are:

First, the very existence of legalised assisted suicide threatens disabled people. It will lead to an expectation that the disabled, elderly and infirm should shuffle off their mortal coil a bit early to relieve the burden on their carers. This fear has been ridiculed by supporters, who contend that all they want is choice at the end of life. Dream on, says Diane Coleman, of the lobby group Not Dead Yet. "Proponents of legalized assisted suicide are willing to treat lives ended through abuses of the practice as 'acceptable losses' when balanced against their wish for a pleasant way out and their unwillingness to accept disability, or responsibility for their own suicide. We disagree."

Second, the danger is not mandated euthanasia, as in Nazi Germany. Rather, it is a subtle and widespread expectation that death is better than disability. "If the legalization of assisted suicide continues, I believe the rank and file will some day see nothing wrong with hastening the deaths of many people," writes Dr Carol J. Gill. "They will stand by and do nothing to stop it and will endorse the policies and institutions that advance it-not because they are evil people but because it will no longer be evil in our culture to do so. It will be compassionate, respectful, routine."

Third, several authors argue forcefully that Oregon's Death with Dignity Act, which is the model for assisted suicide in the US, is deeply flawed. After about 15 years, several intractable problems have emerged. The authors claim that there is very little patient control; that statistics are incomplete; that oversight is minimal and secretive; that safeguards are easily circumvented; and that negligent doctors cannot be prosecuted. Allegations that in Oregon and in the neighbouring state of Washington, which has also legalised assisted suicide, the circumstances of deaths are routinely falsified are especially disturbing. In fact, Washington actually requires that doctors falsify the death certificate by listing the terminal disease as the cause of death rather than the lethal dose of barbiturates. ~ Disability and Health Journal, January

Giant ht to JS on my thinking about this.

The Fight for Patients' Rights.

Why does the US still not have a bill of patients' rights that guarantees equal, affordable access to scientifically-proven, effective medical services?

Because patients' rights advocates fall into a number of devoted, diligent but uncoordinated and underfunded groups:

Disability rights

LGBT rights

Medical Marijuana rights

Women's reproductive rights

End of life/Elder rights

Minority rights

And because they are fighting resource-rich, organized, powerful opponents which, despite their disparagement of "elitists" or "intellectuals," inhabit and influence the halls of government in an unprecedented way:

The medical industry has strongly fought any patients' rights bill introduced in legislation. Over the past dozen years, more than 5 bills have been defeated. They have spent vast amounts of money to prevent government protection of individual and group rights; they oppose regulation at all levels.

The church, both the Catholic and Fundamentalist/Evangelical Right has spent the years since Roe v. Wade (when they allied around the common goal of imposing "traditional values" on our pluralistic society) building their unified "pro-life" effort. Pro-life means everything the ideological right is against, from women's reproductive services to aid in dying, from marijuana rights to gay equality. These organizations enjoy tax-exempt status, have been brought into government to provide social services, and are not required to register as lobbyists when they work to influence legislation.

The state has refused to look at patients' rights as an Establishment Clause issue, preferring to, when it does protect rights, use the rights to privacy. Even the Supreme Courts rulings on Establishment clause grounds (predominantly in the area of schools and public property) have been unpredictable.

Until opposition to patients' rights by industry and the church are recognized for what they are - unregulated capitalism and discrimination - corporations, medical associations and religious ideology will continue to shape how medicine is delivered.