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.

In Support of Suffering.

Canada will discuss C-384, a bill to legalize assisted suicide there, in May. In today's Hamilton Spectator, Paul Kokolksi writes against the bill, citing the same arguments that we hear here in the US. My least favorite argument is that which endorses end of life suffering - in line with the theological concept of redemptive suffering espoused by the Catholic church, that the more pain we feel, the closer we are to God.

For all of the talk about a "slippery slope" with our "culture of death," I find there too is a slippery slope to the acceptance of suffering. We have the ability to relieve suffering for the dying but suffering brings us closer to God. We have the ability to relieve poverty, inequality, racism, hunger, abuse, injustice...but suffering brings us closer to God? If the concept of redemptive suffering prevents us from relieving suffering for the sake of converting those in pain, we have reduced our moral imperative as humans to a mission for the church. I can't think of a less humane premise than this.

Here's a clip:

Our present culture tends to consider suffering the epitome of evil. In such a culture there is a great temptation to resolve the problem of suffering by eliminating it at the root, by hastening death so that it occurs at the moment considered most suitable. True compassion leads to sharing another's pain; it does not kill the person whose suffering we cannot bear.

The pleas of the gravely ill who sometimes request death should not be understood as implying a true desire for euthanasia; in fact, it is almost always a case of an anguished plea for help and love. Intentionally causing one's own death, or suicide, is a rejection of God's sovereignty and loving plan. It is a refusal of love for self, the denial of a natural instinct to live, a flight from the duties of justice and charity owed to one's neighbour and to society.

No one should be allowed to permit in any way the killing of an innocent human being, whether a fetus or an embryo, an infant or an adult, an old person, or one suffering from an incurable disease, or a person who is dying. The moment a positive law deprives a category of human beings of the protection which civil legislation ought to accord them, the state is denying the equality of all before the law.

In the Netherlands, a policy originally encompassing only persistent requests for death from hopelessly suffering and dying patients has steadily expanded so that physicians have been allowed to kill patients who were physically healthy and handicapped children who never asked for death.

The Netherlands stands as a stark reminder of the slippery slope leading from supposedly limited killing to a broader culture of death.

There exists in contemporary culture a certain Promethean attitude which leads people to think that they can control life and death by taking the decisions about them into their own hands. What really happens in this case is that the individual is overcome and crushed by a death deprived of any prospect of meaning or hope. What any sick person needs, besides medical care, is love -- the human and supernatural warmth provided by those close to him such as family, nurses and doctors.

Why We Let Catholic Health Care Discriminate.

The Moderate Voice has a great discussion going about the benefits and detriments of Catholic health care in the US. If you read here often, you know that the Catholic Church controls the services provided at the 624 hospitals - and hundreds of long-term care, hospice care and other institutions - in the US.

The post is a little long and emotional, as well as full of disinformation. But the comments area is fascinating and gives a good look at the high emotions that surround this issue.

For decades the Catholic church has worked to perpetuate the belief that they are too big a part of health care to be forced to operate without discrimination. What would the country do if the church pulled out of hospital operation?? In fact, they have worked in this field for centuries as part of their mission to care for the poor and sick. While I believe that the purpose is sincere, nonetheless, they discriminate against patients by not providing the full spectrum of legal, medically sound services. And they refuse to provide proper informed consent or referrals. In essence, they use the reverence that society has given the moral goodness of the church to discriminate against women, gays, elders and the poor by deciding what "conscience" those patients should have.

Here's my comment on the site:

Fantastic discussion. A couple of corrections: Catholic hospitals get 50% of their funding from the government, just like every other non-profit hospital. Less than 3% of their income is from donation so they are clearly not providing Catholic health care with Catholic donations. And Catholic hospitals - all 624 of them - statistically do no more "charity" work than other non-profits. In fact, all hospitals are required by federal law to treat the uninsured.

The best analogy is a company town. The company provides the jobs, the housing, the schools, even owns the grocery story. They are "too big to fail" in that town. One can say, oh thank god for the company, without it we would have no jobs or schools or groceries. But the truth is that the company then dictates all aspects of the town's life. And if the company says women should not be able to plan how many children they have or that a terminal patient can't be removed from artificial nutrition and hydration when they wish, the company is exercising it's size and monopoly to the detriment of employees rights.

When a pluralistic society finds itself subject to the doctrine of a religious health care institution, patients' rights are violated. Those who suffer the most are the poor and minorities in society. But we are bashful about calling out this issue because we give reverence to the "good intentions" of the Catholic church and those of us with voices have the resources to go elsewhere.

Reproductive services clinics have risen over the past 38 years to provide what Catholic and other denominational hospitals have not. They serve the poor and provide services unobtainable elsewhere.

I do believe that denominational healthcare is a discriminatory practice in the US but I also accept that the dictates of the Catholic hierarchy are not necessarily what's practiced in Catholic hospitals. Yet, that dissent cannot erase the fact that Catholic Ethical and Religious Directives discriminate against the poor, women, elders, gays and others by not informing patients' of all legal and medically-sound treatments and providing meaningful referrals. If we continue to privilege provider (and institutional) conscience over patients' conscience, we perpetuate this discrimination. Denying this is dishonest and a disservice to equality and individual conscience in this country - as well as a violation of equal rights.

Denver Struggles to Keep Reproductive Services at Hospitals Slated for Catholic Takeover.

From NonProfitInformation.com, a story on the battle raging in Denver about the Catholic takeover of three secular hospitals:

The unexpected delay by the Federal Trade Commission to bless the transaction may provide local critics with a last gasp effort to continue fighting the deal. Community members and medical professionals contend the transfer would unfairly subject comprehensive reproductive health and end-of-life care to church doctrine over patients’ needs. The Catholic church considers abortion, contraception, elective sterilization and termination of invasive life support as “intrinsically evil” and refuses to provide these medical services or respect patients’ advance directives.

The disputed takeover in Denver exemplifies the very serious implications for the 127 non-denominational hospitals that succumbed to merger fever with cash-flush Catholic health care systems in the 1990s. According to a study by Catholics for Choice, half of merged secular-Catholic hospitals suspended most or all of their reproductive health care services. Eighty-two percent denied emergency contraception to rape victims — and more than a third refused to provide a referral.

But for some tax-exempt, nonprofit hospitals co-owned by secular and church interests, there was little more than a wink and a nod to church mandates on care. Comprehensive reproductive healthcare services quietly remained available.

These practices received higher scrutiny in 2001 when the U.S. Conference of Catholic Bishops revised its Ethical and Religious Directives for medical care to address “misinterpretation and misapplication of the principle of cooperation with other-than-Catholic organizations.” In other words, the church would no longer turn a blind eye to reproductive health and end-of-life care at its secular partner facilities that did not meet strict Catholic orthodoxy.

More importantly, the local hospital policymaking was a little noticed precursor to the bare knuckles strategy on recent display with the church’s relentless lobbying for the 2009 Stupak and Nelson amendments to further restrict access to abortion care via publicly-subsidized health insurance plans. At the same time, the Catholic Archdiocese of Washington, D.C., threatened to end social service programs for tens of thousands of poor residents if the city council approved a same-sex marriage ordinance.

Now, the Denver hospital takeover is offering a glimpse of the intense pressure being brought to bear by the church on its healthcare partners. The Vatican’s renewed insistence on complete doctrinal influence on patient care is bolstered by very real threats to hold desperately needed institutional capital funds hostage until its theological demands are met.

It's a great article, full of helpful facts and information. You can read the entire piece here.

How We Define Death And The Future of Hospice.

Larry Beresford challenges the latest meme that hospice patients have declined in number recently. He notes that, among others, Tim Cousounis at Palliative Care Success and the Urban Institute's Howard Gleckman, who wrote a recent article for Kaiser Health News, have examined hospice enrollment and concluded the same thing. It is in decline.

The reasons they cite are varied but predictable: a bad economy makes doctors hesitant to refer profit-generating patients to hospice where the income derived from costly curative treatments naturally declines; Medicare rules require that a patient have less than 6 months to live before going into hospice and sometimes patients, particularly chronically ill ones, live beyond that time frame, a situation Medicare would like to avoid; and of course, the constant challenge of image that hospice faces as a place where one goes when they have "given up" continues to prevent ever-growing enrollment.

From Beresford's latest blog post:

I contacted a couple of leading hospice executives to ask them if the declining enrollments trend is true. One said that hospice patient census fluctuates up and down for all sorts of reasons, but that his agency's is up, after a sharp drop in 2008. But Samira Beckwith, CEO of the highly successful Hope Hospice and Palliative Care in Fort Myers, Florida, responds, "I think that everything [Gleckman] says in his article is true." One of the problems, she says, is that America's hospices still have not successfully communicated the idea that hospice care means "living" as fully and as well as possible until death comes. Instead, Americans have learned a little bit about hospice and believe it means "they have to die really soon if they say yes."

The problems of misunderstanding, misconceptions and mistrust of hospice care by people confronting hard choices at the end of life have been around throughout the history of hospice in America, even as the number of people receiving hospice care has steadily grown, up to 1.45 million in 2008. Physicians' reluctance to bring up the "H" word with their terminally ill patients has been well-documented. The second-guessing of hospices' enrollment decisions by Medicare has also intensified recently, but is not a new phenomenon. A similar round of government scrutiny occurred in the mid-1990s. And still the trends of the number of hospices, number of patients served and total Medicare outlays have pointed steadily upward since the first U.S. hospice opened in 1974 and since Medicare began paying for hospice care in 1984.

Beresford's conclusion is that perhaps this ebb in enrollment is really a reflection of market capacity:

The MBAs who run fast food or pharmacy chains are taught that when your company or your industry stops growing, it is already dying. But is that the right model for a service designed to promote compassionate, individualized, quality of life-promoting care for dying patients and their families? Shouldn't hospice's goal be to offer a meaningful option to all those who might need it and want it, and who might qualify, according to the rules of those who would pay for it, as being terminally ill -- rather than just continuing to grow? And if there is a current decline in referrals, given the recent proliferation and rampant competition of mom-and-pop hospice providers, particularly in certain metro areas and in the states of Alabama, Mississippi and Oklahoma, perhaps what's happening now is what the economists might call a necessary market correction.

I tend to disagree with Beresford and here's why: hospice is really the only option for patients who wish to die at home and so, as long as statistics continue to show that a majority of Americans wish to die at home (80%) and that most continue to die in facilities (75%) there's room for hospice to grow.

Whatever strides the hospice community has made in the past three decades or so of convincing society that the patient can decide where they die (and increasingly, when), the prevailing institutions in our culture - the church, the medical industry, and the state - haven't done much to change the tone of discussion about death. Only in Oregon, where the state population has had a long and in-depth conversation about end of life care (primarily because of the successful initiative to legalize assisted suicide) is there a more sophisticated understanding of end of life care options. I suspect that, as statistics in 2007 showed, that Oregon continues to lead the country in hospice enrollment. A couple of other factors that are working against hospice enrollment:

1. The rise of "pro-life" opposition to end of life choice (as conveyed through fear of "socialized" medicine, removal of artificial nutrition and hydration, end of life care planning (DNR, living wills, medical proxy designation), and aid in dying) and simple statistics that show the devoutly religious are more inclined to seek aggressive, futile care at the end of life are only one front that prevents society from viewing hospice as a healthy, life-affirming choice.

2. The medical industry has absolutely no incentive to direct terminal patients to hospice. Doctors are entrenched in a culture that, as Joanne Lynn says, puts patients on a "glide path" that involves aggressive treatment until death, as though death is a "failure" of medicine that can be cured. Doctors have only begun to be trained in medical schools for end of life care discussions (and continue to not be reimbursed for the necessarily lengthy discussions); palliative care is growing but still in its infancy; doctors tend to grossly over-estimate the time a patient has before death (hence delayed and briefer hospice enrollment); aggressive care is revenue for medical institutions and doctors; the conservative AMA and other medical associations (with the exception of many nursing organizations) have resisted society's call for greater improvements to end of life care. As well, advancements like 911, CPR, and the ability to lengthen a patient's life have prevented serious discussion about "quality of life." "Doing everything we can" to save a patient is the default, whether it lengthens the patient's life or keeps them comfortable - or not.

3. As we've seen during the year-long health care debate, the state has done little - either at the state or federal levels - to promote or legislate sound end of life care laws. I can think of only a handful of state laws that promote end of life planning. Veteran's Affairs, the largest health care provider in the US, has made commendable, great strides in meeting patient's needs and wishes in the last months of life but at the end of last year we saw them come under attack for distributing a planning guide, then termed the "death book." This noise, however illegitimate, makes institutions, health care providers, and doctors hesitant to discuss these issues.

In essence, the media and society have allowed fear-mongering and inaccurate accusations to shut down the end of life discussion.

The entire non-sensical circus that stemmed from the health care debate - death panels, the state's gonna euthanize you, etc. - has had an effect. The environment we're in at the moment (a political battle that has less to do with patient care than politics) has had a dampening effect on legislative efforts to enforce good end of life care planning.

The powerful Catholic church, a strong opponent of removal from ANH and of assisted suicide, is in a position where they must articulate nuanced and complicated arguments for hospice (an organization founded by the Catholic Cicely Saunders and long affiliated with the Catholic church) if they want to support hospice at all. For their political purposes, it is much better to push "all life is sacred" than "you're bound for a better place," both rhetorical constructs that sound true enough but work to As well, the church is firmly under the influence of a staunchly conservative leadership right now. And, as the second largest operator of hospitals in the US, they too have an interest in keeping patients in hospitals, receiving aggressive care. Their force and influence was proven during the health care debate.

And lastly, death just isn't what it used to be. Death used to mean the almost simultaneous end of a heart beat, breathing and brain function. In the past 30 or so years medicine has figured out how to maintain the first two indefinitely. And brain function, as we've seen with the cases of three young women - Karen Ann Quinlan (1985), Nancy Cruzan (1990), and Terri Schiavo (2005) - is increasingly considered not a suitable qualification for death.

But there is hope for hospice. Baby boomers are increasingly greying and, as they have changed every other institution their generation has moved through, end of life care is bound to be altered by their increasing need of it. As well, our health care system is not equipped for such a large influx of elder patients. The threat of economic destruction should be enough to push US society and government to reconsider how we care for those who are dying. Hospice will play a vital role in that reconsideration.

More Reporting on the New Artificial Nutrition and Hydration Policy.

This time from New Jersey News Room. The word is getting out, but slowly.

The writer, Harris Meyer, does a good job of summarizing the issues though I always want to hear more in these articles about the size of the Catholic health care delivery system and the reasons why these facilities are able to operate outside the established laws regarding artificial nutrition and hydration. It seems no one is willing to ask the difficult questions about how Catholic hospitals are able to establish their own practices outside national law - despite separation of church and state.

Here's a clip:

If a patient or family didn't want a feeding tube "and the reason they don't want it is they basically want to die, then the Catholic institution would explain to them they can't cooperate with that and they would have to go to another institution," said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops' conference, who helped draft the policy.

Experts say no other large health systems in the U.S. have nutrition and hydration policies like those governing Catholic facilities.

Catholic officials have said the directive is consistent with previous doctrine. But the revised language eliminates what many Catholic ethicists viewed as flexibility in its application to patients in a persistent vegetative state. The previous policy said "there should be a presumption in favor of" use of feeding tubes, rather than an "obligation."

Morever, according to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having "chronic and presumably irreversible conditions," though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer's disease, traumatic brain injury and Lou Gehrig's Disease.

"If someone had a stroke and the doctor says he won't die though he may be very sick, then they should give him nutrition and hydration," Weinandy said. "You can't just starve him to death. It's hard to know whether someone can regain consciousness or not."

Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. "That gets to be a very, very large number of people," said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.

Forrow also said Catholic health facilities haven't met a key ethical test - adequately informing the public of their policy. If they don't do so, "patients and their families will arrive at the hospital in crisis and find that the care they want and need and have a right to as Americans is being refused."

Weinandy said "obviously the public should know what the directives say," and patients and relatives "can easily download the directives or get a copy."

The revised directive arises from statements made by Pope John Paul II in 2004 during the legal battle surrounding Terry Schiavo, the Florida woman kept alive on a feeding tube for nearly 15 years, and from clarifying statements by Vatican officials in 2007.

Sister Carol Keehan, executive director of the Catholic Health Association representing hospitals and other facilities, said the bishops' point is "you don't have the right to just stop feeding them because their life is a burden." But the new policy, in her view, would come into play infrequently, mainly in cases involving a persistent vegetative state. For that reason, said the CHA senior director for ethics, Ron Hamel, "There probably was not much publicizing" of the revised directive by Catholic facilities.

There are more than 600 Catholic hospitals and hundreds of nursing homes and other facilities; the hospitals alone admit nearly six million patients a year. Keehan doesn't see much potential for conflict between patients' and families' end-of-life wishes and the new directive. "Advance directives are held in great respect in Catholic hospitals," she said in a recent interview. "Some might like to say there's a terrible problem, but there isn't."

Most states require honoring a patient's advance directive or the designated proxy's decisions in end-of-life situations — or else transferring the patient to a facility that will honor those wishes. It is against the law in every state to place a feeding tube or provide other medical treatments against the expressed wishes of the patient.

Forced Feedings: The Bishops and Artificial Nutrition and Hydration.

Judith Graham at the Seattle Times has a great article today on the Catholic Bishops' latest dictatorial health care guideline - that the church decides when patients are removed from (or added to) artificial nutrition and hydration, not the patients. Graham writes:

The new directive, more definitive than previous church teachings, also appears to apply broadly to any patient with a chronic illness who has lost the ability to eat or drink, including victims of strokes and people with advanced dementia.

Catholic medical institutions are bound to honor the bishops' directive, issued late last year, as they do church teachings on abortion and birth control. Officials are weighing how to interpret the guideline in various circumstances.

What happens, for example, if a patient's advance directive, which expresses that individual's end-of-life wishes, conflicts with a Catholic medical center's religious obligations?

Gaetjens, 65, said she did not know of the bishops' position until recently and finds it difficult to accept.

"It seems very authoritarian," said the Evanston, Ill., resident. "I believe people's autonomy to make decisions about their own health care should be respected."

Part of the reason the Catholic church gets away with making these decisions for patients is because so few know how Catholic health care is regulated, by the church. About the history of this new policy on artificial nutrition and hydration, the case of Terri Schiavo is cited, an event that I would say is one of the primary roots of the church's recent restrictions:

The guideline addresses the cases of people such as Terri Schiavo, a Catholic woman who lived for 15 years in a persistent vegetative state, without consciousness of her surroundings. In a case that inspired a national uproar, Schiavo died five years ago, after her husband won a court battle to have her feeding tube removed over the objections of her parents.

The directive's goal is to respect human life, but some bioethicists are skeptical.

"I think many [people] will have difficulty understanding how prolonging the life of someone in a persistent or permanent vegetative state respects the patient's dignity," said Dr. Joel Frader, head of academic pediatrics at Children's Memorial Hospital in Chicago and professor of medical humanities at Northwestern University.

snip

The church's view is that giving food and water through a feeding tube is not a medical intervention but basic care, akin to keeping the patient clean and turned to prevent bedsores, he said.

Pope John Paul II articulated the principle in a 2004 speech, and the Congregation for the Doctrine of the Faith, an arm of the Vatican, expanded on it in a 2007 statement.

The new guideline incorporates those positions in Directive 58 of the U.S. bishops' Ethical and Religious Directives for Catholic Health Care Services.

There are several important exceptions. For one, if a person is actively dying of an underlying medical condition, such as advanced diabetes or cancer, inserting a feeding tube is not required.

"When a patient is drawing close to death from an underlying progressive and fatal condition, sometimes measures that provide artificial nutrition and hydration become excessively burdensome," said Erica Laethem, a director of clinical ethics at Resurrection Health Care, Chicago's largest Catholic health-care system.

A second exception has to do with bodily discomfort. If infection develops repeatedly at the site of the feeding tube, for instance, artificial nutrition and hydration can be refused or discontinued, Catholic ethicists agree.

A third exception is allowed when inserting or maintaining a feeding tube becomes "excessively burdensome" for a patient.

Under traditional Catholic teachings, patients may refuse medical interventions when anticipated burdens outweigh potential benefits.

"Decisions are made case by case," and that will continue, said Ron Hamel, senior director of ethics at the Catholic Health Association of the United States.

Of particular concern is whether Catholic medical centers will honor an advance directive stating broadly that a person does not want a feeding tube inserted.

Compassion & Choices, a group that supports the right of dying people to end their lives, suggested the potential for conflict is significant.

"Now, [Catholic] hospitals and nursing homes have no choice but to enforce Catholic doctrine universally over patient wishes," the group's president, Barbara Coombs Lee, wrote on her blog.

But most ethicists said they do not see a significant problem. Disagreements, they say, usually can be resolved by discussing people's end-of-life concerns, such as fear of being abandoned, fear of living in pain or fear of becoming entirely dependent on others.

It is rare for people to be very specific about their wishes.

"I have never seen an advance directive that says, 'If I am in a persistent vegetative state, I ask that you withdraw food and water,' " Laethem said.

The bishops' guidelines specify that patients' "advance directives are to be followed, so long as they do not contradict Catholic teachings," said John Haas, president of the National Catholic Bioethics Center. How those teachings will be interpreted has yet to be resolved.

Who Decides Patients' Rights?

Barbara Coombs Lee of Compassion & Choices has a new post up at DailyKos. Here's a clip:

Here’s another scenario:

The phone rings. It’s the assisted living facility’s care supervisor; my father collapsed just after dinner. "The EMTs are taking him to Mercy Hospital." An hour later I am driving down Baltimore Pike into southwest Philadelphia.

I find my father in the ICU. Hooked up to all the tubes and equipment he looks so much older than a week ago. Over the next day and a half of tests and waiting – learning it’s a stroke – he doesn’t wake or stir. I’m sitting with him mid-morning when the neurologist arrives. He goes over results and treatments they’ve tried. "It’s unlikely that your father will regain consciousness, and if he did, very unlikely that he would return to normal mental function. We need to think about next steps."

My father designated me his health care proxy for a moment like this. His advance directive is clear, and he’s been blunt in conversation. "Look, I’m eighty-three years old, and I’ve had all the breaks. If something happens, I don’t want to sit in a chair and drool for years."

I make an appointment to see the social worker in her office, where we’re joined by a priest. I tell them we’re ready to remove life support. She turns to the priest. He says, "Mercy Hospital is committed to honoring advance directives for health care decisions as long as they do not contradict Catholic principles," The priest has a copy of my father’s advance directive and reads from it. "If I am ever consistently and permanently unable to communicate, swallow food and water safely, care for myself and recognize my family and other people, and it is very unlikely that my condition will substantially improve, I would want to die rather than have life-sustaining treatments."

The priest looks up. "Your father’s living will suggests that in his unconscious state his life is no longer worth living. Under these conditions, removing life support would be an act of euthanasia by omission."

Catholic bioethical thought has evolved over centuries. The ERDs that govern care in Catholic hospitals and nursing homes are extremely nuanced. Your directions about life support may or may not be honored in a Catholic institution. Your concern about the burdens of medical interventions might justify forgoing life-sustaining medical treatment. But a wish to be allowed to die under certain circumstances might not.

Have you talked with your family about end-of-life options? Good.

Is an advance directive in place? Excellent!

Will that directive be honored in a Catholic health care facility? We cannot know for sure.

Far Religious Right Attacks Coakley for Supporting Emergency Contraception for Rape Victims.

The Massachussetts senate race, in the wake of Kennedy's death, is bringing the issue of emergency contraception and Catholic hospitals back into the news - and it's a good thing.

While Drudge and others are criticizing Martha Coakley, who's running against the creepy "pro-life" candidate Scott Brown, for supporting laws that require Catholic hospitals to administer emergency contraception to rape victims, the straight-forward issue of Catholic doctrinal treatment of a pluralistic society is again getting a necessary spotlight.

The Catholic church is the second largest provider of health care in the US, after Veteran's Affairs. If you stop by here often, you know that the 624 Catholic hospitals in the country, hundreds of long-term care and hospice facilities, and 60 health care networks all operate according to doctrine approved by the USCCB. These directives stipulate that religious ideology be used to refuse common and accepted medical procedures to the millions of patients who pass through Catholic health care institutions each year. Fifty Catholic hospitals in the US are sole providers, the only hospital serving a community, and the difficult economy is forcing Catholic and secular hospitals to merge at an ever-increasing pace which results in further limitation of services such as tubal ligations, fertilization procedures, counseling on STD and AIDS prevention, contraception, and compliance with patients' advance directives at end of life.

Patients go into Catholic institutions expecting to receive modern medical care and find that they are subject to Catholic doctrine. What allows this draconian application of religious ideology to a mixed society, despite tax exempt status and 50% of funding from the federal government, is a series of laws that protect not only individual provider refusal of service - so-called conscience clauses - but those of an institution. And Catholic hospitals are currently able to deny informed consent by not notifying patients of common medical services available, but to not even refer patients to other care facilities for such services.

The Catholic church and allied "pro-life" groups consider some forms of contraception to be abortion and therefore resist state and federal laws regarding distribution of emergency contraception to rape victims. Massachussetts is one of the US states that requires rape victims be informed of and offered EC when they enter a hospital.

Yet multiple studies have found that Catholic hospitals across the country have worked around such a requirement, offering EC only after it is proven (via yet more tests) that the woman is not pregnant. In other words, the Catholic church is not complying with the law. Coakley has brought this up as an important issue and opponents are using it to discredit her campaign.

Studies have shown that even Catholics strongly oppose the USCCBs teachings. A full 97% of Catholic women will use some form of birth control in their lifetimes.

By continuing to treat women with discrimination, Catholic hospitals are applying restrictions that are not supported by their church members nor society. Coakley is right to bring this issue to the light. Women traumatized by rape should not be shamed nor denied modern medical treatment simply because they've wandered into a Catholic hospital.

We have laws that prevent discrimination against women. They should be enforced.

UPDATE: Don't miss this new research paper at SSRN on conscience and emergency contraception.

One in Five Feeding Tubes "Futile"?

From the BBC, a report on what some call the over-use of feeding tubes in British patients. Now overlay that on the Catholic Church's new Directive #58 which counts feeding tubes as "obligatory" care. I don't mean that the Church would eschew mouth feedings prematurely. But the stats in this quote are applicable.

Doctors described the insertion of a stomach feeding tube as an invasive procedure, which carried a significant risk of infection and even death.

They said feeding difficulties were a "growing problem" on hospital wards and in care homes, because of the rising number of dementia patients.

A survey suggested that, in 2007, 39,000 people in the UK, not including those in hospital, were being artificially fed. A third of them were living in nursing homes.

Other research by doctors who reviewed medical records suggested that one in five cases of tube feeding was "futile".

One in five.

PalliMed Discusses USCCB Change to Artificial Nutrition and Hydration Policy.

The mercurial Barbara Coombs Lee has been doing the heavy-lifting on making the public aware of the November decision by the USCCB to change their Ethical and Religious Directive regarding artificial nutrition and hydration.

Now medical practitioners are getting involved and I couldn't be happier to see this post at one of my favorite sites, PalliMed, today.

And just to emphasize why this is such an important issue: The Catholic Church is the second largest provider of health care in the US; they manage 624 hospitals and three of the top 10 health care networks. Doctrinal provision of health care services, despite tax-exempt status and 50% funding by the federal government, continues to expand. While Catholic health providers generally do a fantastic job of running hospitals and caring for patients, they do so with discrimination against any services that do not meet the 72 Ethical and Religious Directives. Remember that the next time you or a loved one are on your way to the hospital.

Christian Sinclair writes:

In November of 2009, the United States Council of Catholic Bishops voted to approve and update the Ethical and Religious Directives for Catholic Health Care Services. Some of the wording changes have begun to worry some in health care about how to handle delicate discussions in Catholic health care facilities that may be caring for patients wishing to forego artificial nutrition and hydration. The most vocal group thus far is Compassion & Choices. The NHPCO, AAHPM and HPNA have been relatively silent on this matter either way to my knowledge.

The section on End of Life starts on page 29 and begins with an introduction reviewing Catholic teachings on matters pertaining to death in the modern medical age. From the intro:

While medically assisted nutrition and hydration are not morally obligatory in certain cases, these forms of basic care should in principle be provided to all patients who need them, including patients diagnosed as being in a “persistent vegetative state” (PVS), because even the most severely debilitated and helpless patient retains the full dignity of a human person and must receive ordinary and proportionate care.

Following the intro are the directives which I have highlighted a few pertaining to artificial hydration and nutrition.

58. In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the “persistent vegetative state”) who can reasonably be expected to live indefinitely if given such care.40 Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they would be “excessively burdensome for the patient or [would] cause significant physical discomfort, for example resulting from complications in the use of the means employed.”41 For instance, as a patient draws close to inevitable death from an underlying progressive and fatal condition, certain measures to provide nutrition and hydration may become excessively burdensome and therefore not obligatory in light of their very limited ability to prolong life or provide comfort.

59. The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-sustaining procedures should always be respected and normally complied with, unless it is contrary to Catholic moral teaching.

The main revision comes in ERD #58 which changed the wording from "presumption in favor of providing nutrition and hydration to all patients" to "[moral] obligation" to provide food and water. other clarifying points was to highlight those in a chronic condition or the chance to live chronically with the assistance of artificial nutrition and hydration (ANH) cannot forego or refuse ANH in a Catholic Health Care Facility.

Most of the hub-bub has focused on patients in a persistent vegetative state, but since those cases are actually pretty rare, I think where this might be more likely to be a potential ethical conflict is in the care of patients after a stroke or those who become chronically critically ill. In those patient groups predicting death or the impending nature of death become much more difficult especially if you factor in the variable of +/- ANH. If you think having members of the church directly becoming involved in health care matters seems theoretical or indirect at best, consider the case of Mr. Welby in Italy in 2006, or Steven Becker in St. Louis in 2000.


The Catholic Health Association of the United States (CHA) issued a clarifying statement. And in other statements has said if a resolution could not be found, the patient would be transferred to another facility.

For more information on this you can read a good synopsis with interviews from Charles Stanley at Atlanta's The Sunday Paper. Also on the Compassion and Choices blog. And the San Francisco Examiner. Or from the blogotherspoon.

I would encourage anyone who does work with a Catholic hospital, nursing home or hospice to proactively address the handling of this directive so there is some clear understanding of the implications and the channels any decision making should go through. Maybe it is a good time to convene the ethics committee to review the directive and current practices regarding ANH. I do palliative care consults at a Catholic hospital so I know I will be meeting with the administration and ethics committee within the next few weeks to review this issue. If you have any experience with this please feel free to post in the comments or email me at ctsinclair@gmail.com.

Thanks for the link, Dr. Sinclair.

Is It Legal? Catholic Mandate for Patient Care.

Bob Egelko at the San Francisco Chronicle has an article today that gets most things right.

The article's title, "New Catholic Mandate on Comatose Patients," is misleading. The mandate, Directive #58, applies not just to comatose patients but to all patients who are deemed by the church in need of the introduction of artificial nutrition and hydration (ANH) or who wish to have ANH removed, whether they be victims of a terminal disease, a tragic accident or old age. The Directive qualifies ANH, applied by a surgical procedure, to be "obligatory" care, regardless of the "do not resuscitate," advance directive or living will desires of the patient.

Egelko asks, "A Legal Conflict?" As we've seen with other patients' rights at Catholic hospitals, particularly women's reproductive rights, the church is shielded by a webwork of laws (provider refusals or so-called "conscience clauses") that allow not only individuals but institutions (even those with tax-exempt status, serving diverse communities and 50% funded by the federal government) to deny patient's their rights by either not informing them of common procedures, not referring them for such procedures, or simply not performing those procedures.

The conscience clause enacted by Bush 13 months ago is up in the air as the Obama administration reviews it. Fierce lobbying by (unregistered, unreported) Christian lobbying groups, such as the USCCB, which has a staff of 350 in Washington, are working around the clock to ensure that their health care entities are not regulated by the federal government - and can subsequently shape health care as they see fit. Beyond segmented patients' advocacy groups for elder and terminal rights, gay rights, and women's rights, there are few powerful entities within society that can stand up to the entrenched, well-funded, and influential medical or Christian lobbies.

Religiously-inspired conscience clauses have been challenged unsuccessfully in the courts but only on privacy grounds, not on Establishment, Equal Protection, or separation of church and state grounds. The courts, including the Supreme Court, have famously shied away from engaging "separation of church and state" arguments with regard to health care. The patients' rights movement has struggled for decades against the powerful medical industry and fundamental Christian forces. As patients' rights stand now, medical institutions and the Catholic Church enjoy much more protection and many more rights than the patient.

The solution that Lori Dangberg of Alliance for Catholic Health Care disingenuously offers is that patients who encounter a conflict with the Catholic institution where they are being cared for can be transferred. But anyone who has experienced the wasting and death of a loved one knows that Coombs Lee is right when she states, "[Patients and families are] very vulnerable to the kind of duress and shame that a policy like this would inflict."

We've seen the church use this tactic before with abortion, sterilization and other "shameful" women's services. Over the past 30 years women have been shamed out of hospitals, become accustomed to traveling for the services they need, or required to comply with the dictates of the Church because they lack the resources to go elsewhere. A network of clinics and independent reproductive service centers has risen up to serve those neglected by the Catholic and other discriminating hospital networks.

The end of life is a trying period for both patient and family. Because few Catholic hospitals readily provide patients with informed consent - and because the general population doesn't understand that Catholic hospitals restrict their care services according to doctrine - many patients and families find themselves in a situation where the advance directive is ignored and death is prolonged or futile care is applied when the patient doesn't want it.

It is nearly impossible for patients and their families to be savvy when they are typically encountering the Catholic medical system - or any medical system - for the first time. Doctors and medical institutions operate from a position of authority and vulnerable and distraught patients and families are often cowed into complying with such authority, against their wishes. For many, this experience of death is their first and they go into it without understanding how we die, what medical procedures are standard or necessary, and what a patients' rights are. Going against hospital policy takes tremendous knowledge and effort when in such a traumatic situation.

I'm tickled to see Egelko's article now. I hope it is a sign that the media is beginning to recognize the current discrimination in health care delivery. And I hope that it raises pressure on the church, the state, and the medical industry to better serve citizens.

The nation's Catholic hospitals, including three in the Bay Area, face a new religious mandate in the new year: to provide life-sustaining food, water and medicine to comatose patients who have no hope of recovery

The U.S. Conference of Catholic Bishops issued the directive Nov. 17 to the more than 1,000 church-affiliated hospitals and nursing homes in the United States and to all Catholic doctors and nurses. Invoking a 2004 speech by Pope John Paul II, the bishops said Catholics must provide nutritional assistance to patients with "presumably irreversible conditions ... who can reasonably be expected to live indefinitely if given such care."

A previous directive let Catholic hospitals and doctors decide whether the burdens on the patient outweighed the benefits of prolonging life. The bishops said the new policy was guided by "Catholic teaching against euthanasia" and by John Paul's observation that providing food and water "always represents a natural means of preserving life, not a medical act."

The directive plunges the bishops into another health care controversy, on the heels of their lobbying for tight restrictions on abortion coverage in health legislation pending in Congress.

Catholic hospital officials say the November decree isn't rigid and leaves room for accommodating patients' wishes. But the bishops' language appears to conflict with a hospital's legal duty to follow a patient's instructions to withdraw life support, as expressed in an advance written directive or by a close relative or friend who knows the patient's intentions.

Courts have ordered hospitals to disconnect feeding tubes when an unconscious patient's wishes were clearly established. The best-known case involved Terri Schiavo, the Florida woman who died in 2005 after 15 years in a coma and unsuccessful attempts by her parents and Republicans in Congress to keep her alive.

A legal conflict?

The bishops' order "fails to respect settled law that empowers patients with the right to refuse or direct the withdrawal of life-prolonging care," said Barbara Coombs Lee, president of Compassion & Choices, which advocates for the right of terminally ill patients to make life-or-death decisions.

"It will apply irrespective of your religious faith, your stated wishes in an advance directive, or the instructions of your family."

That's not how the bishops' decree will be carried out, Catholic hospital organizations insist.

The decree itself does not require life-sustaining care that would be "excessively burdensome for the patient" or would cause "significant physical discomfort." If those exemptions don't apply, a hospital will send a patient elsewhere rather than violate his or her expressed wishes, the organizations said.

"If it was unresolvable ... we would transfer them or find some other means to accommodate them," said Lori Dangberg, spokeswoman for the Alliance of Catholic Health Care, which represents California's 55 Catholic hospitals.

The hospitals include St. Francis and St. Mary's in San Francisco and Sequoia Hospital in Redwood City, all owned by the Catholic Healthcare West chain. Dangberg noted, however, that such situations usually arise in nursing homes and other long-term facilities, rather than in acute-care hospitals.

Ethics considerations

The Catholic Health Association of the United States, which represents both hospitals and nursing homes, said a facility's ethics committee would probably meet with the doctor and the patient's representative to "explore the alternatives" whenever a patient's decision to withdraw life support clashed with Catholic doctrine.

"In some instances, this might include the transfer of the patient to another facility," the association said.

That's not an adequate option, even when non-Catholic health facilities are nearby and available, said Lee, of Compassion & Choices.

"These decisions are hard on the family," she said. "They have to muster their will and their courage to do what they know Mom would want or what the advance directive says.

"They're very vulnerable to the kind of duress and shame that a policy like this would inflict."