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A STUDY IN CONTRASTS: THE DEATHS OF POPE JOHN PAUL II AND TERRI SCHIAVO

The Culture of Death Who Will Decide When You Should Die

Sedated to Death? When "comfort care" becomes dangerous 

Nancy Valko, RN

 



Voices Online Edition
VOICES - Vol. XX No. 2 - Michaelmas 2005

About Medicine and Morality

A STUDY IN CONTRASTS: THE DEATHS OF POPE JOHN PAUL II AND TERRI SCHIAVO

 
by Nancy Guilfoy Valko, RN
June 2005

In March 2004, Pope John Paul II shook the bioethics world with his statement calling medically assisted feedings ordinary treatment for people in the so-called “vegetative state.” He even went on to recommend further research, rehabilitation, family support and basic medical care. Especially because the Pope’s statement was issued during the legal fight about removing Terri Schiavo’s feeding tube, the media and others reacted with outrage.

   The Pope’s statement was excoriated by many commentators who insisted that even Catholic teaching was in favor or withdrawing feedings from people in the so-called “vegetative state.” This included both Catholic and secular ethicists who thought they had settled the feeding tube issue.  For example, Fr. John Paris, an ethicist at the Jesuit-run Boston College, "I think the best thing to do is ignore it, and it will go away. It's not an authoritative teaching statement."[1] Arthur Caplan, a secular ethicist at the University of Pennsylvania joined Dominic Sisti, an ethicist at Villanova University, to write a commentary in the Chicago Tribune asking, “Would the Pope get a Feeding Tube?”[2]

   The Catholic Health Association claimed confusion about what the Pope really meant and recommended keeping the status quo "Until such time as we have a greater understanding of the meaning and intent of the pope's allocution…”[3]

A year after his statement, Pope John Paul II answered all his critics most eloquently by his own death. And, just days before the Pope’s death, the death of Terri Schiavo showed the world the exact opposite of the Pope’s death- the ugly face of euthanasia.

THE DYING OF POPE JOHN PAUL II

When Terri Schiavo’s feeding tube was removed on March 18, 2005, Pope John Paul II’s declining health was already in the headlines. The world had known for years that the Pope had Parkinson's disease and even though his speech became slurred and his steps labored, he insisted on appearing and speaking until the very end.

This gave his profound words about the value of the elderly, the sick and the disabled even more poignancy and impact, especially in a world so consumed with maintaining appearance, individual independence and youth.

 And in a world that increasingly views hastening death as a blessing and “living wills” as a necessity, Pope John Paul II’s acceptance of medical care-including both a tracheotomy and a feeding tube-was a powerful testament against those who believe that a certain “quality of life” must be achieved before life itself can be considered a benefit rather than a burden.

In the end, when death was inevitable, the Pope showed us all how to die with grace, acceptance and prayer.

THE DEATH OF TERRI SCHIAVO

 The Pope’s peaceful death stands in stark contrast to the brutal, deliberate dehydration death of Terri Schiavo which occurred just days before the Pope’s.

When she died, Terri Schiavo was a 41-year-old woman whose parents had tried to legally save her for over a decade. The whole story leading to Terri’s death was rarely told in the mainstream media it but has been exhaustively chronicled at The Terri Schindler-Schiavo Foundation website at www.terrisfight.org for years.

In short, Terri sustained brain injuries from a lack of oxygen following a mysterious collapse in her own Florida home in 1990 when she was 26 years old.

After Terri did not regain full consciousness, her husband Michael won a medical malpractice lawsuit and a trust fund was established to pay for Terri’s lifetime care. But several years after the lawsuit, Michael Schiavo suddenly claimed that he now remembered statements his wife had made in the past about not wanting to be kept alive in such a condition. He petitioned a court for permission to stop her tube feedings and claimed that Terri was in a “vegetative state”, despite videotape evidence showing Terri smiling, responding to her parents and even apparently trying to talk. The judge in the case, George Greer, seemed to be sympathetic to Michael Schiavo’s arguments from the beginning. Judge Greer even allowed Michael Schiavo to use the funds set aside for Terri’s care to pay for “right to die” lawyers to argue that her feeding tube should be removed based on both Florida law and the alleged but disputed prior statement by Terri.

Florida law allows food and water to be withheld if a person meets the state’s definition of “vegetative state” as “the absence of voluntary action or cognitive behavior of any kind” and “an inability to communicate or interact purposefully with the environment”. Experts for the husband claimed that all of Terri’s visible responses were mere “reflexes” and disagreed with other medical experts for the family who testified that Terri had at least some basic awareness and could possibly be helped with therapy.

Terri’s parents and siblings volunteered to take responsibility for Terri’s care, but Michael Schiavo refused to relinquish guardianship or divorce Terri even though he had been living with a girlfriend for years and had fathered 2 children. He refused to allow further rehabilitation services and, despite the fact that Terri was not terminally ill, had her transferred to a hospice facility in 2000.

Twice before her death, Terri Schiavo survived for several days after Judge Greer ordered her feedings stopped but she recovered after other court decisions reinstated her feedings, at least temporarily. However in the end and despite efforts by President Bush, Congress and Gov. Bush of Florida, Judge George Greer chose to ignore even congressional subpoenas and ordered Terri’s feeding tube removed.

After 13 long days, Terri died after her family members were ordered from her room. According to her parents, siblings and Fr. Frank Pavone of Priests for Life, Terri continued to be responsive almost to the end even though she suffered greatly.[4]

On June 15, 2005, Terri’s autopsy results were released[5] and, not surprisingly, they showed severe brain damage and death from dehydration. Dr. Thogmartin, the medical examiner, said he could not determine the cause of her initial collapse, whether from trauma or, as the husband had maintained, from an eating disorder. He also admitted that the autopsy could not prove or disprove a “vegetative state.”

However, Dr. Thogmartin held a press conference in which he went on to speculate that no amount of therapy would have improved Terri’s condition, that she was blind and that she could not swallow[6]. Although Terri’s family and others disputed these conjectures[7], a stampede of editorials and commentaries followed, claiming that Terri’s tortuous death was therefore justifiable and portraying those who opposed dehydrating her to death as cruel and politically-motivated extremists.

The media and “right to die” groups now use Terri’s case to motivate the public to sign “living wills” and other documents to, if effect, sign away their right to medical care in case they also become disabled and unable to speak for themselves.

The parents, prolifers, disability activists and others who supported Terri’s right to live vowed to continue the fight to gain legal protections for other non-dying, disabled people.

 WHAT WE CAN LEARN FROM THESE TWO DEATHS

As a nurse, I often see patients and families totally confused about medical care and the real dying process.” They often make such statements as “Don’t resuscitate me if I’ll end up like Terri Schiavo, Nancy Cruzan, etc.” or “Mom said she never wanted to be a burden.” Like many people, these patients and families have bought the “right to die” myth that “I wouldn't want to live like that!” is a compassionate and logical rationale for deliberately terminating lives including their own. Unfortunately, it is this widespread attitude that has allowed euthanasia to be portrayed as merely a question of “who decides?” rather than “what is being chosen?”

While there is the traditional ethical principle that a person can ethically refuse treatment that is futile or excessively burdensome, the definitions of futile and burdensome have been redefined by many ethicists over the past few decades in an attempt to justify withdrawal of basic medical care and even direct euthanasia from ever increasing categories of people with a perceived poor quality of life. The lethal error here is that the person’s life is being judged futile and burdensome rather than the treatment itself.

In Pope John Paul’s case, he had survived many a medical crisis in the past and when he developed problems with breathing and swallowing, he accepted reasonable medical efforts to improve or maintain these functions. When it was obvious that death was imminent, he accepted his impending death without further medical interventions like kidney dialysis and, according to all reports, he died a peaceful death.

In Terri’s case, she was not in danger of death but instead had serious disabilities. She had no “living will” but both the mainstream press and the judge immediately accepted her husband’s questionable claim that she would not want to live in her present state. Since Terri only required food and water to live, the only way to make sure she died was to remove that food and water.

But even if Terri Schiavo had made a “living will” stating that she would not want to be fed if mentally disabled, the harsh truth would be that she was requesting an especially cruel form of assisted suicide not the refusal of a burdensome or futile medical treatment. It is telling that the medical examiner admitted that Terri had been given at least some morphine and generic Tylenol during her ordeal despite the claims that she couldn’t feel pain.

The media, “right to die” groups and many ethicists have had much success convincing the public that death is a control issue rather than an inevitable reality. However, the Bible talks about the existence of  “a time to die” and as a nurse who has witnessed hundreds of deaths over three decades including those of several family members, I have come to understand the wisdom of that phrase. Natural death does have its own timing and blessings, not the least of which are relatives and friends whose bereavement process is not further complicated by the searing guilt and defensiveness that seems to routinely accompany euthanasia.

Thus it is not surprising that there would also be a stark contrast between the reactions to the deaths of Pope John Paul II and Terri Schiavo: The Pope’s death led to an outpouring of respect and admiration for his life even from his opponents while Terri’s led to a torrent of media vituperation against those who stood up for her, even against her parents who begged for the chance to love and care for her whatever her condition.

With the Pope’s and Terri’s death occurring almost simultaneously and so publicly, the differences between natural death and death by euthanasia have seldom been made so excruciatingly clear.

If we will only open our eyes.


NOTES:

[1] “Responses to the papal allocution” by Rochester Right to Life newsletter. May 2004. Online at: http://www.righttoliferoch.org/zll0405.htm

[2] “Would the pope get a feeding tube?”  By Dominic A. Sisti and Arthur L. Caplan. Published in the Chicago Tribune, December 26, 2003. Available online at: http://www.chicagotribune.com/news/opinion/oped/chi-0312260171dec26,1,7442270.story [broken link 06/28/2005]

[3] "Persistent Vegetative State and Artificial Nutrition and Hydration: Questions and Answers", Resources for Understanding the Pope's Allocution on Persons in a Persistent Vegetative State. Online for CHA members on website www.chausa.org

[4] “An Eyewitness Account” by Fr. Frank Pavone, National Director, Priests for Life. April 2005. Online at: http://www.priestsforlife.org/euthanasia/terrisfinalhours.htm

[5] http://www.foxnews.com/projects/pdf/061505_schiavoautopsy.pdf

[6] “Schiavo Autopsy Says Brain, Withered, Was Untreatable” by Abby Goodnough, New York Times, June 16. 2005. Online at: http://nytimes.com/2005/06/16/national/16schiavo.html
[7] Schindler family statement issued June 16, 2005. Online at: http://www.wnd.com/news/article.asp?ARTICLE_ID=44830
Schiavo Autopsy Leaves Most Important Questions Unanswered”, press release by Diane Coleman and Stephen Drake of the disability rights organization Not Dead Yet. Online at: http://www.notdeadyet.org/docs/schiavoautopsyPR0605.html

“Terri Schiavo Was Aware and Not Blind When Killed, Doctor Says” by Steven Ertelt, LifeNews.com Editor, June 20, 2005. Online at: http://www.lifenews.com/bio1041.html


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NOTE FROM CHN:  The full article taken from Women for Faith & Family with permission http://www.wf-f.org/05-2-Valko_Schiavo-Pope.html


Voices copyright © 2002-2005 Women for Faith & Family

Sedated to Death? When "comfort care" becomes dangerous

by Nancy Guilfoy Valko, RN

As I write this in May 2002, the Hawaiian legislature just defeated a bill to legalize assisted suicide by only 3 votes. Few people were aware of how close Hawaii came to joining Oregon as the second US state to allow doctors to help kill their patients. But before anyone breathes a sigh of relief, it is important to understand that a quieter - but just as lethal - advance in the euthanasia agenda is gaining ground throughout the US.

In the past few years, some ethicists and doctors have proposed "terminal sedation" (TS) as a legal alternative to assisted suicide. TS is defined as the deliberate "termination of awareness" for "relief of intractable pain when specific pain relieving protocols or interventions are ineffective" and/or "relief of intractable emotional or spiritual anguish (existential suffering, psychological distress, emotional exhaustion)". (Emphasis added) An essential component of TS is also the withdrawal of all treatment, including even food and water, so that death occurs as soon as possible.

The issue is not really "intractable pain", which those of us who have worked in hospice or with other dying patients know can virtually always be controlled. In Oregon, voters were sold their assisted suicide law by claims that terminally ill people needed lethal overdoses to relieve unbearable pain - yet even the limited data on assisted suicide victims there shows that the main reasons given by the victims were fear of future suffering, losing independence and/or being a "burden" on family members rather than current or unbearable pain.

While some euthanasia supporters have called TS "inhumane" compared with a faster death by a lethal overdose, other supporters view TS as a way of getting around the "problem" of the euthanasia movement's inability ­ so far ­ to convince voters or state legislatures to enact Oregon-style assisted suicide laws.
Increasingly, TS is being incorporated into some hospice and other "end of life" programs, even though, as writer Brian Johnston points out, euthanasia supporters like Doctor David Orentlicher are admitting in prestigious medical journals that "terminal sedation is tantamount to euthanasia, or a kind of slow euthanasia".

Unfortunately, even some doctors who condemn assisted suicide have embraced TS as an ethical "choice". Doctor Ira Byock, a public opponent of assisted suicide, recently joined with Doctor Timothy Quill, an even more public supporter of assisted suicide, in writing an article supporting TS. As an example of the ethical use of TS, they used the case of a radiology doctor with a lethal brain tumor who wanted to die as soon as possible, not because he was in pain but because he was losing his ability to function independently. The radiologist decided to stop all his medications (as well as eating and drinking) but insisted that his doctor make the process bearable. This demand resulted in the use of TS to alleviate his confusion and agitation, which resulted after nine days without food and water.

Similarly, Dr. Robert Kingsbury, the director of SSM (Sisters of Saint Mary) Catholic hospice in Saint Louis, wrote an article supporting the option of TS as comforting and "critical for patients who are profoundly fearful" of terrible suffering at the end of life. Although the traditional and trusted hospice philosophy has been to care for the dying without either prolonging or hastening death, Doctor Kingsbury rejects the notion that TS and withdrawal of food and water causes or hastens death.

Tellingly, The Pontifical Council's 1994 Charter for Health Care Workers makes an important point when it warns that:

Sometimes the systematic use of narcotics which reduce the consciousness of the patient is a cloak for the frequently unconscious wish of the health care worker to discontinue relating to the dying person. In this case it is not so much the alleviation of the patient's suffering that is sought as the convenience of those in attendance. The dying person is deprived of the possibility of 'living his own life', by reducing him to a state of unconsciousness unworthy of a human being. This is why the administration of narcotics for the sole purpose of depriving the dying person of a conscious end is 'a truly deplorable practice'.

Non-voluntary Terminal Sedation
Although TS is usually presented as an ethical "choice" rationally made by people who are dying, TS is not uncommon even for people who are incompetent to make their own decisions or who are not close to death.

Dr. Perry Fine provided the rationale for this use of TS by citing "living wills" and other advance directives, as well as decisions made by families or others. Virtually every "living will" or other advance directive specifically requests medication if needed for pain even if there is a risk of hastening death. While no one would disagree with this in principle, the reality is that such language can provide a loophole for doctors or families who see death as something to get over with as soon as possible. Families often agree to "comfort care only" for relatives with brain injuries or dementia without realizing that this can also involve TS.

For example, a few years ago I received a phone call from a niece who was worried about her elderly aunt who had suffered a severe stroke several days before. The aunt had signed a protective document designed by a pro-life group as an alternative to the dangerous "living will". The document specifically said that, unless death was inevitable and imminent, ordinary treatments such as food, water and basic medical care were to be provided. The document also named the aunt's sister as the person to make medical decisions if the aunt became incapacitated.

The problem was that although the doctor had declared the aunt's stroke a "terminal event" (a questionable prognosis at best), she was still alive and breathing, although unconscious. Understandably, the niece began to now question whether her aunt was indeed terminal and whether she should be receiving food, water and basic medical care as her protective document directed.

One of the first questions I asked was whether the aunt was on morphine. (Although strokes rarely cause pain beyond a sometimes initial headache, many doctors and nurses consider unconsciousness a sign that the patient will be severely disabled even if he or she lives, and thus deem such a patient "hopeless".) The niece said that the doctor had ordered the morphine as part of the "comfort care" to prevent any discomfort as the aunt died. I suggested that the niece talk to the doctor and her aunt's sister about stopping or reducing the morphine to see if this was responsible for the aunt's apparent coma. Sure enough, when the morphine was stopped, the aunt began to respond and, according to the niece, even seemed to recognize relatives.

However, the aunt's sister insisted that a priest told her such apparent reactions were "just reflexes" and told the doctor to resume the morphine. The other relatives briefly considered talking to a lawyer about enforcing the aunt's protective document but were reluctant to cause further division in the family. Not surprisingly, the aunt died after two weeks without food and water.

Such scenarios are unfortunately becoming more and more frequent. Terminal sedation is not a rarely used last resort, as its supporters maintain. Even the few studies on TS report the prevalence of terminal sedation to range from 3% to 52% in the terminally ill. When the unknown actual incidence of terminating awareness-or insuring unawareness-in patients with stroke, dementia or other serious illnesses is factored in, the use of TS as a form of "comfort care" may well be approaching epidemic proportions, even outside the hospice area.

As a former hospice nurse and now as an ICU nurse caring for some patients who turn out to be dying, I support the appropriate use of pain and sedating medications as ethical comfort care. However, even in circumstances where such medications are necessary, I have never seen a case where a patient "needed" to be made permanently unconscious.

In addition, the newer health care system problems of cost-containment and stressed, overburdened caregivers can make TS even more attractive - and dangerous - to patients, families and medical professionals alike.

The euthanasia movement is nothing if not creative and persistent. Many people now mistakenly believe that tolerating just a little bit of deliberate death - with safeguards, of course - will give them control at the end of their own lives. But as the "culture of death" keeps seducing even well-meaning patients, families and medical professionals into making death decisions based on fear of suffering or diminished quality of life rather than following the traditional principles of not causing or hastening death, ultimately we are all at risk of being "compassionately" rationalized to death.


Sources:
1. Perry Fine, MD, "Total Sedation in End-of-Life Care: Clinical Considerations", Journal of Hospice and Palliative Nursing, Vol. 3, No. 3, July-September 2001
2. Timothy E. Quill, MD and Ira R. Byock, MD for the ACP-ASIM End-of-Life Care Consensus Panel, "Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids", Ann Intern Med. 2000; 132:408-414. Online version available at: http://www.worldrtd.org/quill&Byock.html
3. Charter for Health Care Workers. Pontifical Council for Pastoral Assistance. Vatican translation. 1994. p. 108, Number 124. Available online at:
http://www.ewtn.com/library/CURIA/PCPAHEAL.HTM
4. Tina Maluso-Bolton, MN, RN, "Terminal Agitation", Journal of Hospice and Palliative Nursing, vol.2. Number 1, January/March, 2000.
5. Johnston, Brian, "Deathly Quiet", World Net Daily, 4/13/02, available online at: http://www.worldnetdaily.com/news/article.asp?ARTICLE_ID=27217
6. Kingsbury, Robert J., MD, "Palliative Sedation: May We Sleep Before We Die?", Dignity newsletter, Summer, 2001, available online: http://www.cbhd.org/newsletter/012/012kingsbury.htm



"Terminal Sedation" -- Nancy Valko submitted the below quote after the Pentecost Issue had been published.

In a chilling commentary, physician Erich Loewy describes the exact definition of "terminal sedation."


"Terminal sedation essentially places a patient under anesthesia during the dying process. Supportive care is stopped and patients are given a sufficient amount of drugs to render them unconscious. The expression 'terminal sedation' is, I find, peculiar. Terminal sedation is done with the full knowledge that no further active treatment will be done and that patients, as rapidly as possible, will now die as a result of their underlying disease process. The claim is made that such a way of proceeding is aimed at providing maximal relief of pain and suffering -- the death of the patient is 'not intended.' But that is, to say the least, disingenuous. Patients are intentionally kept asleep, their vital functions are deliberately not artificially supported, and they are allowed to die in comfort. That they should die in comfort is clearly the goal -- and I would argue the legitimate goal -- of terminal sedation."


 (Reading: Terminal Sedation, Self-starvation, and Orchestrating the End of Life," Archives of Internal Medicine, 2/12/01, pp. 329-332; available online only with paid subscription) Item courtesy of the American Life League (www.all.org) 

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Comment: I have been been in contact with Nat for many years on these issues, especially because of the cases in Missouri and he was one of the first national commentators to recognize the dangers of cases like Terri's. I am honored to be quoted by him. From the Village Voice newspaper (New York) Nancy Valko RN

The Culture of Death Who Will Decide When You Should Die?
December 1st, 2003 1:00 PM

 


Nancy Valko, on the intensive care unit front line
(photo: Stefan Hester)


 

Ironically, the "right to die" movement was founded on the premise that patients and/or families are the best judges of when it is time to die. Now, however, we are being told that doctors and/or ethicists are really the best judges of when we should die. —Nancy Valko, journalist, medical ethicist, and intensive care unit nurse, "Bioethics Watch," Voices, 2003

 


 

Bob Schindler [father of Terri Schiavo] poignantly observes, "We pay great lip service in this country to disability rights, but as the degree of a person's disability increases, the level of legal protection that person receives decreases." —Nancy Valko, lifeissues.net, August 2003

 

In a November 4, 2002, story in The Philadelphia Inquirer, "Penn Hospital to Limit Its Care in Futile Cases," Stacey Burling reported that the ethics committee of the University of Pennsylvania Hospital had approved new guidelines which stated, "intensive care would not routinely be given to patients in a persistent vegetative or minimally conscious state. Only patients who had explicitly requested such care would get it." This exclusion from rehabilitative or other forms of life-enhancing treatment will apply to "patients with severe brain damage."

These patients, for whom the hospital and its ethics committee have abandoned hope, would not even be admitted to an ICU (intensive care unit).

In David Caruso's Associated Press report (December 12, 2002) on this last mile for patients at the University of Pennsylvania Hospital, he quoted Stephen Gold, a lawyer in Philadelphia who specializes in representing people with disabilities.

Noting this discounting of the lives of patients who cannot speak for themselves and have not written advance directives, Gold said that the University of Pennsylvania Hospital, and other institutions that now have similar policies, might also consider cutting off intensive care for people without health insurance or who have other handicaps beyond present guidelines.

"It is a slippery slope they are going down," Gold continued. "If we have a way to provide a medical treatment for people that will keep them alive, we should always provide it, unless they have a living will saying we shouldn't."

Gold also told the Associated Press, "Not everyone agrees on what constitutes a life worth living. I had a client with cerebral palsy once who was asked to sign a do not resuscitate order [do not revive the patient]." But that patient had gone into the hospital "to be treated for appendicitis."

Wesley J. Smith, an expert on the growing culture of death that is being proposed and implemented by hospitals and bioethicists, makes the chilling point: "Now, a new medical hegemony is arising, one that proclaims the right to declare which of us have lives worth living and are therefore worth treating medically, and which of us do not.

"Unless people object strongly . . . to this duty to die . . . and legislatures take active steps to intervene, this new and deadly game of 'Doctor Knows Best' will be coming soon to a hospital near you."

Wes is one of the writers and researchers I consult on this nationwide movement to get the public to endorse legal euthanasia for those who would be "better off dead," as certain bioethicists say of patients for whom more treatment is "futile." I strongly recommend Smith's revised and updated Forced Exit (Spence Publishing Company, 111 Cole Street, Dallas, TX 75207; also available on amazon.com).

Another specialist in these life-or-death matters whom I have relied on for many years is Nancy Valko. She not only writes extensively and gives workshops on medical ethics, but actually also works full-time in the intensive care unit at a county hospital in St. Louis.

Among Valko's nursing specialties are oncology, kidney machines, trauma, cardiac and cancer care, and patients who may or may not be in a persistent vegetative state. Therefore, she is continually on the front line of the kinds of issues involved in Terri Schiavo's case, and the many more to come.

In an article ("Futility Policies and the Duty to Die," Voices, "Bioethics Watch," wf-f.org), she writes:

"This theory [that some lives are no longer worth living] has now evolved into 'futile care' policies at hospitals in Houston, Des Moines, California and many other areas. Even Catholic hospitals are now becoming involved. . . . Thus, the 'right to die' becomes the 'duty to die,' with futile care policies offering death as the only 'choice.' . . . A poor prognosis, which can be erroneous and is seldom precise, will become a death sentence."

I have debated bioethicists who are true believers in the "duty to die" when care is "futile." These exchanges have been on college campuses, radio, and television. When I bring up the history of "futile care" in pre-Hitler Germany (as I did in last week's column), the "duty to die" advocates become deeply offended. Nonetheless, they are sincerely continuing a lethal legacy.

Nancy Valko continues: "Just a generation ago, doctors and nurses were ethically prohibited from hastening or causing death. Family disputes and ethically gray situations occurred, but certain actions such as withdrawing medically assisted food and water from a severely brain-damaged but non-dying person were considered illegitimate no matter who was making the decision.

"But," Nancy Valko emphasizes, "with the rise of the modern bioethics movement, life is no longer assumed to have the intrinsic value it once did, and 'quality of life' has become the overriding consideration. Over time, the ethical question, 'what is right?' became 'who decides?—which now has devolved into 'what is legally allowed?' "

In the aforementioned November 4 Philadelphia Inquirer story, Stacey Burling reported what physicians and bioethicists consider a worrisome obstacle to expanding "what is legally allowed."

"Hospital leaders [around the country] fear they would lose a lawsuit if they denied care demanded by a family." These officials and bioethicists want more case law to enable them to end lives they consider "futile."

Until the media spend more space and care on who decides whether—and how—certain disabled Americans should die, I recommend your remembering that, as disability rights activists say, many of us are only temporarily able.

SOURCE  http://www.villagevoice.com/issues/0349/hentoff.php  


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