UK Decision Overrules Doctors' Request to Remove Life Support

A new decision in the UK courts has over-ridden doctors' recommendation that a "permanent vegetative state patient" be removed from life support. Hassan Rasouli, according to the wishes of his wife, Parichehr Salasel, is currently being kept alive by a ventilator and a feeding tube.

The doctors contend that they need permission to place a patient in palliative care but not to remove life support. The court ruled otherwise.

From the article at Globe & Mail:

“I think it will reopen the debate Canada-wide about how to effectively and efficiently adjudicate end-of-life disputes,” said Mark Handelman, a lawyer for the Euthanasia Prevention Coalition, an intervenor in the appeal. “...The public at large needs to learn a lesson from this. You have to have discussions about end-of-life care with your loved ones.”

The two doctors, Brian Cuthbertson and Gordon Rubenfeld, had argued that although they required consent to provide palliative care to Mr. Rasouli, they did not need it to withdraw life-sustaining measures that are no longer medically useful. The Ontario Court of Appeal on Wednesday upheld a lower court ruling that said that they do need consent, and that if they don’t get it, they must refer the case to a tribunal.

Ms. Salasel said she was pleased with the decision, adding: “I have my husband and he is still alive ... He’s getting better, absolutely. He is alive and with medication, with modern medicine, he will be better.”

The dilemma raised in the case is of society’s own making and increasingly an issue with Canada’s aging population: medical technology can now keep the sickest patients biologically alive, even though some doctors feel this does more harm than good. Distraught family members, meanwhile, often do not know their family member’s wishes, or refuse to give up hope, and choose every intervention available to sustain life.

Force-Feeding Prisoners Is Unlike Patient Removal from a Feeding Tube?

As someone who watches the legal battles surrounding patient removal from artificial nutrition and hydration, the evolution of the directives used by Catholic health care (which state now that the decision to remove ANH is up to the hospital and not the patient), and who sits at the bedside of dying patients who wish to stop eating and drinking and often do, I find the occasions of state-ordered force-feeding of inmates extremely pertinent to end-of-life health care discussions.

Of course the thread is state sanction of what we ingest, what we do with our bodies (think drug laws, abortion, aid in dying, motorcycle helmet laws, the list goes on). Do we agree that force feeding a death row inmate is suicide prevention? Is prevention of the individual's suicide so that the state can kill him? Or rather, put another way, is the state prolonging the man's death; not allowing him the privilege of taking his own life? (Be sure to watch the dated, partisan but nonetheless riveting 1981 TV miniseries Masada, which recounts the tale of 900 Jews besieged in a mountaintop fortress by the Romans. The Jews commit suicide in order to "defeat" the soldiers and have since become legendary heroes. Or compare the heroism of soldiers who put themselves in harm's way in battle. Or kamikazee pilots in WWII. Or suicide bombers.)

Arguments for force feeding a death row inmate could be made--for his soul, for his quality of life behind bars, for his need to pay for his crimes. And surely he could be depressed, as one can imagine death row inmates are, just as terminal patients are. But it is in these cases that particular troublesome aspects of refusing patient removal of ANH are highlighted.

And so, from Birmingham, Alabama, the story of a death row inmate who has stopped eating and showering and has been ordered force-fed by a federal judge. The details of it make me ask how as a society we wish to define dignity and for whom we wish to (p)reserve it.

A federal judge has ordered a man who faces the death penalty on federal charges that he killed two tellers during a 2007 bank robbery in Bessemer be force-fed and bathed at the Shelby County jail.

U.S. Magistrate Judge John E. Ott, in an order filed Monday, stated that he had learned from the U.S. Marshal that William Merriweather has been refusing food and to take a shower for an extended period. "The court has been monitoring the situation for some time," according to Ott's order.

On Monday, Ott stated that he had informed Merriweather's defense attorneys of "the need for medical intervention under the circumstances."

Merriweather's attorneys, Emory Anthony and Richard Jaffe, argue in court documents that Merriweather is incompetent to stand trial.

The two attorneys stated in documents filed Monday in response to the judge's proposed order that Merriweather was "clearly not competent" and agreed to a temporary order of no more than 14 days permitting the Shelby County Jail to take reasonable steps "to ensure that Mr. Merriweather's health is not further compromised."

Ott ordered the Shelby County Jail to take steps to make sure Merriweather's health is not further compromised, including forcibly feeding and bathing him for a period not to exceed 14 days. Before the end of that time the U.S. Marshal is to be notified by jail personnel of Merriweather's medical status "and his compliance or non-compliance with medical and jail personnel directions."

Attempting to Make Another Terri Schiavo

In his weekly email Michael Cook at BioEdge asks if a 58 year old grandmother, a legal immigrant from Rwanda ineligable for Medicaid, may be the next Terri Schiavo. Rachel Nyirahabiyambere is now "comatose" after a stroke; her court-appointed guardian has chosen to move her from the hospital where she was initially receiving treatment to a home nearby. Her feeding tube has been removed. The hospital was unable to come to an agreement with the woman's children about her path of care. Cook writes:

It’s always best to wait for both sides of a story to emerge. But a New York Times report makes Georgetown University Medical Center and the US health system look quite heartless. After the children of a brain-damaged Rwandan migrant without health insurance could not pay for hospitalisation or nursing care, her feeding tubes were removed and she is slowly starving to death in a Maryland nursing home.

There will certainly be further developments in this breaking news. Not only is it a case study in medical ethics, but it will also give ammunition to opponents of President Obama’s healthcare program. They will surely use it as an example of what “death panels” could do. Stay tuned.

I don't hold out Cook's hope, primarily for these reasons:

- Neither Cook nor the New York Times parse the meaning of PVS, a diagnosis that has been challenged by everyone from the Catholic Church to the Terri Schindler Schiavo Foundation to Belgian scientists to pro-life organizations hoping to shape end-of-life practices. PVS typically means brain dead. While the diagnosis allows room for those who still have an semi-active brain stem (which may result in some physical function), it means there is no chance for recovery and yet, thanks to artificial nutrition and hydration (ANH), a surgically inserted feeding tube, the patient can live for many years, or decades, even if weened from a respirator and defibrillator. Hoping for a recovery from PVS is like hoping for Jesus to perform a miracle. There are statistically no cases of a patient "waking" from PVS.

- The public has shown a more sophisticated understanding of what "starving to death" means. The case of Terri Schiavo proved that the public was willing to think more critically about the removal of ANH. There is no proof that unconscious or comatose patients experience any pain from ANH removal. In fact, stopping eating is a natural aspect of the dying process. I don't mean to insinuate that Ms. Nyirahabiyambere couldn't "live" for another many years were she to receive constant care and food and hydration via a tube. But that her dying process was interrupted by artificial means, rendering her in a state that requires constant medical intervention, is not lost on the public.

- Ms Nyirahabiyambere is a legal resident of the U.S. Hopes that her race, nationality or lack of insurance will do anything other than bolster calls for universal health care is misjudging the constituents who usually get behind "pro-life" crusades

- Terri Schiavo, and before her, Karen Ann Quinlan and Nancy Cruzan, became high-profile cases because they were all young women whose beauty, youth and potential - particularly when displayed in pre-incident photos, say, from high school year books - could engage a broad audience. The crass media beast is less servicing of grandmothers, black at that. Despite the fact that Ms. Nyirahabiyambere comes from Rwanda, a focus of media attention and U.S. aid since the genocide in 1994 (after which the patient and her family came to the U.S.), that, dare I say, paternalistic humanitarian focus has waned.

- There are thousands of PVS patients in the U.S. at any given time. Surely, those wishing to focus on PVS and removal from ANH can find a better case to pull heart strings. Again, I say this not to denigrate this patient but to recognize the makings of a media blitze like Schiavo's.

- It's not 2005. Discussion of end of life care, patients' rights and how we die are more broadly accessible. I don't underestimate the public's willingness to sentimentalize the dying process but I also think that the political climate is such that, as a culture, we are better versed in what medicine can and can't do. As Andrea Sloan, the court-appointed guardian for Ms. Nyirahabiyambere is quoted in the New York Times:

“Hospitals cannot afford to allow families the time to work through their grieving process by allowing the relatives to remain hospitalized until the family reaches the acceptance stage, if that ever happens,” Ms. Sloan said in an e-mail. “Generically speaking, what gives any one family or person the right to control so many scarce health care resources in a situation where the prognosis is poor, and to the detriment of others who may actually benefit from them?”

It's unfortunate that Ms. Sloan frames the conversation around money, what the medical industry will or won't pay for. Rather, the issue of Ms. Nyirahabiyambere's right to die without invasive medical procedures is ethically more paramount; the hopes and desires of her family, as with all of us attending a dying loved one, are not enough to change a patient's outcome, to keep them with us any longer.

For more, read Thaddeus Pope a Medical Futility Blog.

Reports from the Annual Catholic Health Association Assembly

I wasn't able to attend because I'm not a CHA member and, for some reason, couldn't muster up a sponsor, but the reports are now coming in from the event which was held on the 13th through the 15th of this month in Denver.

From U.S. Catholic, an article about the assisted suicide panel:

Proponents of assisted suicide are using the U.S. church's own revised ethical directives as "propaganda to promote" their cause, a physician and Franciscan brother told a workshop at the Catholic Health Association convention June 14.

Compassion & Choices, a national organization created from the merger of the former Hemlock Society and Compassion in Dying in 2005, is telling people that the "Ethical and Religious Directives for Catholic Health Care Services" now require that "everyone will have a feeding tube rammed down their throat" at Catholic health facilities, said Franciscan Brother Daniel P. Sulmasy.

Brother Sulmasy, a medical doctor who also holds a doctorate in philosophy, is a professor of medicine and ethics at the University of Chicago. He was joined by two other speakers in a panel discussion on "Responding to the Advance of the Physician-Assisted Suicide Agenda" at the CHA convention in Denver.

"Assisted suicide is bad ethics, bad medicine and bad public policy," he told the session. "If it wasn't for that, I'd be all for it."

Reviewing the various efforts to make assisted suicide legal beyond Oregon and Washington states, Brother Sulmasy said that although most efforts have been in the courts or state legislatures, Compassion & Choices also has been conducting a public relations campaign that misrepresents the Catholic directives on withdrawal of food and water that were revised in 2009.

Schiavo v Schindler

More noise from the destructive relationship between Michael Schiavo and the Schindler family: A new report out of Florida called the Terri Schindler Schiavo Foundation's finances into question last week; now Michael Schiavo is threatening to sue the Schindlers for using Terri Schiavo's name to raise money.

The news, first reported at conservative LifeNews by ridiculously prolific Steven Ertelt, immediately spread across the "pro-life" blogosphere causing all of the Schindler's tried-and-true supporters like Wesley J. Smith to weigh in. The article is rife with misconceptions regarding Schiavo's death; misconceptions that the Schindlers (and Smith and Ertelt) have worked tirelessly to maintain in their fight against patients' rights to removal from artificial nutrition and hydration. The renewed animosity should prove interesting to watch, particularly as it plays into state-level discussions regarding end of life care, health care reform, and patients' rights. The Schindler family, particularly Bobby Schindler, have worked in the past few months to fashion themselves as advocates for the disabled. Other disabled rights activists view this terminology creep as somewhat suspect.

From Alex Schadenberg at Euthanasia Prevention Coalition, a friend of the Schiavos.

Have We Learned Anything for the Case of Terri Schiavo?

What has the case of Terri Schiavo taught us?

That's the question asked of Glenn McGee, the John B. Francis Chair at the Center for Practical Bioethics in a podcast, moderated by Lorell LaBoube at Practical Bioethics.

It's a quick 20 minute listen which raises some of the following points:

PVS is not curable; what does it mean to wait for a miracle?

Why was Schiavo's eating disorder largely ignored in the discussion? and isn't it ironic that the fight was for forced feeding?

There are 30,000 PVS patients in the US. Why did this case come to the fore?

We've learned little from the Schiavo case because the primary issues regarding ethics of indefinite artificial sustainment were largely skipped over.

Who pays for indefinite care?

Was the Family Guy episode that used humor to address Schiavo's condition too soon?

Advanced directives largely don't work because they are largely still unused.

Is indefinite (futile) care in line with our pragmatic, Judeo-Christian heritage?

Most Doctors Would Refuse a Feeding Tube For Themselves; Why Do They Place Them So Often?

Dr. Kirsch from MDWhistleblower has a new post on feeding tubes:

Last week, I was asked by a primary care physician to place a feeding tube in an NNHP, a nonagenarian nursing home patient. The patient had a panoply of active medical issues, and was at the end of life. The feeding tube was advised because the patient’s swallowing function was impaired and he was, therefore, at risk for pneumonia if he ate. These swallowing evaluations are generally performed by speech pathologists, whom I have found to be dedicated and competent professionals. As an aside, they often uncover swallowing defects that suggest that eating regular food may be unsafe, even though I suspect that these ‘defects’ were present for several years. Somehow, these patients ate regular food and survived.

As the patient was not capable of providing informed consent, I contacted the patient’s legal guardian, who is his grandson and a physician. While I was hoping that he would decline the tube and opt for comfort care, he was adamant that the tube be placed. I did so on the following day. Yesterday, a day after the tube was placed, he died, not from a complication of the procedure, but because he had reached the end of his life.

In 20 years, I’ve place over a hundred feeding tubes, primarily in elderly and demented individudals. In most of these cases, I serve as a technician. I am not consulted for my advice on whether a feeding tube is in a patient’s interest, but am asked to insert one after the decision has already been made. More than any other gastro procedure I perform, placing these tubes, called PEGs by physicians, is the most troubling. There is no question that gastroenterologists like me are placing more of these tubes than are medically necessary. Over the past few years, several medical papers have documented that providing tube nutrition for patients at the end of life, or with advanced dementia, provides no benefit. It does not prolong or improve life for many of these patients. Why, then, do we do it so often?

Read the entire post here.

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.

What Is a Natural Death?

Elana Premack Sandler at Psychology Today asks her readers what they think about assisted suicide as she feels her way through the subject in the wake of a host of publicity. I appreciate her nuanced and open willingness to examine the topic, particularly when so many do make a snap-judgement about assisted suicide. I recommend you read her entire post and comment! But there's a point in one of her paragraphs that I want to jump off from. She writes:

Does assisted suicide undermine suicide prevention? "Obviously!" you might think. Working for a suicide prevention organization, and as a suicide survivor, I really wrestle with supporting idea of suicide - at all.
Since so many people who choose assisted suicide are suffering from incurable degenerative diseases, the cessation of pain - psychache or not - is very appealing. Just as I wish that people who are in extreme emotional pain did not have to experience such terrible pain, I wish the same for people in extreme physical pain. But, will a person who dies by assisted suicide experience more dignity and peace than they would have if they had died by natural causes?

Ok, maybe a quick point. Then I'll jump off. The recent report from the first year of legalized Death with Dignity in Washington state shows that most of those terminal patients who elected for DwD said their reason was autonomy. More so than fear of pain or existing pain. I'm always suspect of polls that ask people in crisis and distress to identify what the cause is. It's almost unfair to ask a dying patient to identify why they are ready to die. But nonetheless, a majority of patients said autonomy. End of point.

What I want to take up from the above paragraph is that tired but prevalent phrase: "natural causes." Once was a time when death meant the rather simultaneous cessation of heart beat, breathing and brain function. Those days are over. Medicine now can maintain heart beat and breathing almost indefinitely. That leaves brain function. As I noted yesterday, Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo proved that many, particularly those in the extreme religious right, oppose the use of brain function as a determining factor for death. This brings the term "natural causes" to a new definition.

All three women could eventually breath on their own. All had functioning hearts. Both functions were essentially resuscitated via CPR, or other techniques that shock the heart and lungs back to operation. Prior to the invention and widespread use of defibrillators, CPR, respirators, and even 911 in the early 70s these women would have died of their initial injuries. Their lives were, after resuscitation, prolonged via artificial nutrition and hydration and the battles over their lives stemmed from their family members attempting to remove them from ANH.

The prevalence of amazing, life-prolonging technological and medical advancements does extend American lives. This is a wonderful and miraculous thing. But it has changed how we die and what we now call death. Few deaths these days can be considered natural, however. It's time we reconsider the term and in doing so, start to talk about what death now means.

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.

Catholic Hospitals Falling Away.

A fantastically telling article from Sue Ellen Browder at the National Catholic Register on Catholic hospitals not really telling the whole truth to their bishops. There are more than 600 Catholic hospitals in the U.S., making them the second largest deliverer of health care in the country. In order to be "Catholic" a hospital has to abide by the 72 Ethical and Religious Directives the Catholic church imposes.

But some keep the Catholic only in name - perhaps for the seemingly good reputation that such an affiliation brings? Dissent is not a new thing to the Catholic hierarchy, they've been battling misbehaving parishioners for centuries. And when their discriminatory dictates overlap with modern medicine, doctors, patients, and nurses all chafe.

Another sign that the hyper-right current leadership of the Catholic church are out of touch? Of course. Can we start calling for Vatican III? Who's stopped calling for it since Vatican II?

St. Charles Medical Center in Bend lost the title “Catholic” on Feb. 15 due to its refusal to stop doing tubal ligations to sterilize women. Founded by the Sisters of St. Joseph in 1918 but no longer run by them, St. Charles is Oregon’s only Level II trauma center in the central and eastern part of the state.

“The crux of the conflict was the hospital and ethics board’s intentional misinterpretation of ‘direct’ and ‘indirect’ sterilizations,” said Diocese of Baker Bishop Robert Vasa. After several years of negotiations with St. Charles, Bishop Vasa made the difficult decision to strip the hospital of its “Catholic” status.

Tubal ligation, informally known as “getting one’s tubes tied,” is always a direct form of female sterilization not permitted in Catholic health-care institutions. But, based on the Catholic principle of double effect, other procedures that indirectly induce sterility — the removal of cancerous fallopian tubes or ovaries, for example — are permitted in situations where no simpler remedy is available.

“The heart of my conflict here is that the hospital and the ethics board identified all of these 200 to 250 sterilizations they do a year as indirect,” Bishop Vasa said.

A typical case at issue would be that of a mother with three children. A doctor may decide it could be “dangerous” for her to get pregnant again. In such a circumstance, St. Charles’ hospital and ethics board claimed it was permissible under the directives for a surgeon to sterilize the mother with the “indirect” intention of keeping her healthy.

“Clearly, that’s a direct sterilization with the secondary hope of preserving her health,” Bishop Vasa said. “So it was in my mind an intentional misrepresentation and misinterpretation of that teaching.”

Further, the bishop stated, “It is possible that this teaching about sterilization may be misunderstood and misrepresented in a number of Catholic hospitals nationwide.”

To be called “Catholic,” a health-care institution must follow the “Ethical and Religious Directives for Catholic Health Care Services” issued by the U.S. Conference of Catholic Bishops. Paragraph 53 of the directives states: “Direct sterilization of either men or women, whether permanent or temporary, is not permitted in a Catholic health-care institution.” A second sentence reads: “Procedures that induce sterility are permitted when their direct effect is the cure or alleviation of a present and serious pathology and a simpler treatment is not available.”

This second sentence is often made the illegitimate pretext for sterilizations at Catholic hospitals.

Don't miss this bit on the new directive regarding artificial nutrition and hydration:

Nevertheless, Hamel is executive editor of the quarterly CHA publication Health Care Ethics USA: A resource for the Catholic health ministry, which until Feb. 24, 2010, was posted on CHA’s website. In one article, Hamel posed the question, “The CDF Statement on Artificial Nutrition and Hydration: What Should We Make of It?” in which he personally interpreted the Vatican’s position on the matter.

Speaking as CHA’s senior director of ethics, Hamel wrote that there are “questions about the accuracy of the medical assumptions in the CDF statement and commentary.” An unsigned “primer” on the Vatican’s statement published in the same issue stated that if a patient has “objective discomfort that a reasonable person would describe as unacceptable subjective discomfort, the withdrawal of [artificial nutrition and hydration] would appear to be permissible.”

Another Health Care Ethics USA article, not authored by Hamel, stated, “The ethical distinction between allowing-to-die and euthanasia depends, for the most part, on the medical condition of the patient,” while a third article noted that the “autopsy after [Terri Schiavo’s] death belied any thought that she would have recovered.”

The fall 2007 issue of Health Care Ethics USA published “A Resource for Evaluating Levels of Authority in Church Teaching,” with the “pope’s [sic] ordering of a document’s publication” by the Congregation for the Doctrine of the Faith said to carry the least “theological weight.”

The title page of Health Care Ethics USA grants permission to Catholic Health Association members “to copy and distribute” the publication free “for educational purposes.”

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.