How We Die Today

Medicine and the End Of Life in the 21st Century - A register investigative series

BY PAUL A. BARRA

REGISTER CORRESPONDENT

October 7-13, 2007 Issue | Posted 10/2/07 at 10:06 AM

Not every caregiver for a family member who is nearing the end of life will have the kind of experience that “chilled” Emery Biro when his father died last year.

But, as a Sept. 14 Vatican document acknowledges, the experience is becoming all too common.

End-of-life decisions are being influenced by a culture that is increasingly driven by cost motives and increasingly taking on a kind of moral authority that Christians believe is the province of God alone.

“Dying isn’t dead; it’s living,” said bioethicist Wesley Smith, but many hospice centers and palliative care professionals seem to overlook that truism today.

On Sept. 14, the Vatican ruled that nutrition and hydration, even if delivered by “artificial” means, cannot simply be terminated because doctors have determined that a person will never recover consciousness.

The text expounded on points first raised by Pope John Paul II in 2004. It was prepared by the Congregation for the Doctrine of the Faith in the form of a response to questions raised by the U.S. Conference of Catholic Bishops. It was signed by U.S. Cardinal William Levada, prefect of the doctrinal congregation, and approved by Pope Benedict XVI before publication.

To explore the ramifications of that document and the other complicated end-of-life questions that arise in a world with an aging population and rapidly improving technologies, we begin this week a three-part series on end-of-life issues.

Life and Death in Houston

HOUSTON — By mid-2006, Emery Biro knew that his widowed 73-year-old father was not going to live too much longer. After all, the man had Parkinson’s disease and creeping dementia, and he was beginning to have trouble walking.

Still, Biro knew that his father was getting good care at expensive nursing homes in Houston (at monthly rates as high as $5,700) and had enjoyed for years the frequent visits by his lawyer son and their excursions around the city.

Then the elder Biro deteriorated rapidly and began regular hospital visits because of complications from Parkinson’s and chronic infections.

After six months, the family began to realize that his hospital stays were not working. At the same time, nursing homes were getting reluctant to take him back in after each hospitalization. One reason was that he had become dependent on a feeding tube for nutrition.

“I spoke to my sisters and my father’s sisters and I told them … it was obvious that he wasn’t going to make it,” Biro said.

The family put the dying man in a hospice facility attached to a major hospital. Hospice provides comfort care (also called palliative care) to people who are expected to have six months or less to live.

Because of legal ramifications, Biro does not wish to release the name of the hospital hospice where his father was treated.

He was surprised to hear the hospice administrator claim that “most of our patients last six to 10 days.” He was surprised but not concerned, because his father had a great will to live. But then, on his first visit, he found his father almost comatose.

“It took me a few days to put all the pieces together, but they obviously did not have the same view of the sanctity of human life as I did. He was not getting any food, they had discontinued his medications and he was not getting enough water — maybe none,” Biro said. “I never saw them giving him any water.”

Beginning to suspect that the hospice was not feeding or hydrating his father, Biro spent many hours day and night in his father’s room.

After four days, he walked outside the facility and dialed 911.

“I told them: ‘My dad’s dehydrated and malnourished.’ They sent an ambulance and took him back to St. Luke’s Hospital,” Biro said.

Biro has no complaints about his father’s care at St. Luke’s Hospital. But the damage had been done, he said. “He died there six days later.”

Biro has plenty of complaints about the hospice experience, saying that one of the tactics used to shorten life was psychological: “Their modus operandi is to have everyone give up hope, to cut off the will to live.”

When Wesley Smith heard Biro’s story he was appalled. Smith is a world-renowned critic of the way some health-care professionals are starting to advocate euthanasia and assisted suicide.

An attorney, he is a senior fellow at the Discovery Institute think tank and a consultant to the Center for Bioethics and Culture. He is a proponent of the hospice concept, saying it’s intended to “make the end of life meaningful and rewarding for the patient and the family.”

Smith insisted that immoral hospice practices are not the norm. He does admit, however, that he is hearing more and more experiences like Biro’s. There are no data on the numbers of hospices that withhold food and water and use other subtle means to shorten lives, but Smith said “back door euthanizers” are promoting their agendas in medical journals and on some hospice websites.

“Most of what I hear are positive stories, and I do hope that the hospice movement will look at [these abuses] and do something about it,” he said.

But Smith’s positive hospice stories are becoming less common in the 21st century, according to Ione Whitlock.

Whitlock has researched trends in end-of-life care for a project called LifeTree. Her findings, detailed at Lifetree.org, attempt to show how ideas and practices once thought beyond the pale, such as withholding food and water and using opiates to slow down a patient’s system to the point of death, have been mainstreamed.

And she alleges that it has happened with the help of funding — to the tune of hundreds of millions of dollars — from billionaire George Soros, the Robert Wood Johnson Foundation, the Kornfeld Foundation, the Gerbode Foundation and even the National Institutes for Health.

She claims they fund organizations such as the National Palliative Care Research Center at Mount Sinai School of Medicine in New York City, one of whose directors is prominent euthanasia proponent Dr. Diane Meier.

She also cited Partnership for Caring, a palliative care professional organization whose key principles include “respect of patients’ autonomy and choice,” according to its Standards for Service manual, and whose purpose is “the care of patients … with a limited prognosis for whom the goal of care is quality of life” and the so-called “futilitarian bioethicists” — professionals who believe that feeding and hydrating dying people is futile since they are going to die anyway.

“These organizations endorse passive euthanasia, and their programs to shorten the lives of terminally ill patients have now been taken up by the American Academy of Hospice and Palliative Medicine and the AARP (formerly known as the American Association of Retired Persons), among others,” Whitlock alleges.

“They claim to be neutral now with regard to physician-assisted suicide and Oregon’s Death With Dignity Act, but what they really mean is that they no longer oppose” physician-assisted suicide.

Soros is the principal financial backer of MoveOn.org; neither he, the NIH nor most of the foundations mentioned above responded to Register queries or returned phone calls.

The executive director of the Kornfeld Foundation, Bobye List, said that Kornfeld’s board of directors supports the palliative care research of Meier and takes no position on her right-to-die views. “That’s not on our radar,” List said.

The American Academy of Hospice and Palliative Medicine is the nation’s largest organization of palliative care doctors. Its executive vice president, Dr. C. Porter Story, said that many palliative care physicians now favor physician-assisted suicide: “When we took a vote on it, our membership was split right down the middle.”

AARP would not respond to questions, despite numerous attempts.

LifeTree believes that the palliative care community is in the process of being co-opted by mercy killing advocates and cites example after example of palliative leaders moving into the euthanasia camp.

Dr. Timothy Quill is head of palliative care at Strong Health in Rochester, N.Y., and was chosen by the Journal of Palliative Care to review the state of palliative care last year. Quill, a proponent of Oregon’s assisted-suicide law, once described in the New England Journal of Medicine how he helped a patient kill himself. He was the plaintiff in Vacco v. Quill, the 1997 case in which the U.S. Supreme Court decided that there was no constitutional guarantee of a “right to die.”

Meier is a geriatrician who developed the Palliative Care Leadership Centers (PCLC) through the Center to Advance Palliative Care (CAPC) at Mount Sinai. The Palliative Care Leadership Centers teach palliative care professionals to “improve dying in America” by, among other tactics, withholding food and water.

The Palliative Care Leadership Centers “is a back-door euthanasia group that stresses autonomy,” Whitlock said. “They have extrapolated the right to refuse treatment into a duty or a responsibility.”

And that back-door mode is fast becoming the front door to euthanasia.

One of the six Palliative Care Leadership Centers in the country is Mount Carmel Health System of Columbus, Ohio, a Catholic hospital. A public relations person there denied LifeTree’s allegations, calling them a “misrepresentation,” but no executive at the hospital would answer specific questions about withholding food and water.

Lisa Morgan, communications director for the Center to Advance Palliative Care, said that “patients and their families constantly stop nutrition and hydration. That’s a patient’s choice.” Morgan went on to say that “neither CAPC nor PCLC condone euthanasia.”

Meier would not talk to the Register, citing the press of her professional duties, according to Morgan.

Earlier this year, the American Academy of Hospice and Palliative Medicine changed its opposition to physician-assisted suicide to a position of “studied neutrality” and voted to rename it physician-assisted death instead of suicide.

Pro-life advocates fear that palliative care in the United States is being suborned by the “right-to-die” movement, whose members believe that everyone has the basic civil right to die with dignity when he chooses — or when his doctor chooses — rather than live in pain and with a poor “quality of life.”

Euthanasia proponents commonly use the term “quality of life” as a justification for shortening the life of a terminal patient — or even a permanently handicapped one.

Bobby Schindler is the brother of Terri Schiavo, the woman who was starved to death following a high-profile court battle in March 2005. Schindler said that “long before Terri’s case made headlines, the removal of basic care — food and water — was becoming commonplace.

“People are making decisions in place of God,” he said, “while even many Catholic leaders remain silent despite the Church’s teachings and the Pope’s constant reminders that God alone is the arbiter of life and death.”

Paul A. Barra is based in

Reidville, South Carolina.

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