Provider Refusal and Hospital Visitation Rights.

The Centers for Medicare and Medicaid Services today announced that all hospitals are required to issue policies for visitation rights that do not discriminate.

I wonder if the "conscience clause" as imposed by Bush W. in his last month in office will still allow providers to refuse visitation by those they are morally or religiously opposed to? Namely, same sex partners. Cohabitating partners?

Finally, A Patients' Bill of Rights?

Today Obama announced what he's calling a patients' bill of rights. I've yet to see the "bill" but suspect that it regulates insurers' practices. From everything I'm reading, the details are still shaking out, but I doubt that it will become the bill of rights I've been advocating for: one that guarantees non-discriminatory health care delivery to all citizens regardless of age, race, sex, gender, faith or ability. I doubt it will include strong informed consent laws and mandatory referral laws that prevent providers from refusing services to patients. Perhaps the administration is waiting to tackle the "conscience clauses," most notably Bush's law instituted in December before he left office, and currently on pause since the election.

More news:

http://www.chron.com/disp/story.mpl/ap/top/all/7073988.html

http://content.usatoday.com/communities/theoval/post/2010/06/obama-turns-back-to-health-care/1

http://www.iowapolitics.com/index.iml?Article=200706

Serving All Patients

Chuck Colbert at Windy City Media Group reports that a new study conducted by Human Rights Campaign shows that US hospitals have a way to go before they are providing equal access to LGBT patients. While there are some success stories of hospitals who benefit from non-discriminatory care, many have not made the effort to accommodate LGBT patients.

I often write about the web of provider refusal laws (so-called "conscience clauses") that permit denominational hospitals and health centers and their employees to discriminate against patients, including women, gays, the disabled, and the elderly -- including denial of informed consent and meaningful referrals. I hope that more attention paid to the plight of LGBT patients informs the public of the discriminatory nature of these clauses and a need for a national movement for patients' rights. From the story:

Earlier this year when President Barack Obama signed a memorandum, calling for and end to discrimination against gay men and lesbians in hospital visitation policies, he set in motion potential changes that will significantly alter how LGBT people interact with the healthcare system.

But a new report of the nation's LGBT health care practices, released this week, found that far too many of medical care facilities have some way to go in implementing policies that are fully inclusive of gay people.

Representatives of the Human Rights Campaign ( HRC ) detailed results of the survey and report, called the Healthcare Equality Index 2010 ( HEI ) , for reporters last week during a telephone press conference. The analysis is included in a 72-page document, accessible at www.hrc.org/hei2010/index1.html . Working with the Gay and Lesbian Medical Association, the HRC Foundation produced the fourth annual HEI survey report and its findings.

Conducted October through December 2009, the HEI 2010 reviewed a representative sample of 200 of the largest healthcare facilities nationwide. The report found that in all 50 states—and even in historically LGBT-friendly cities like San Francisco and New York—some facilities still do not fully protect LGBT people from healthcare discrimination. In fact, a whopping 93 percent of healthcare facilities included in the study do not have fully inclusive policies while 42 percent fail to include "sexual orientation" in their non-discrimination policies for patients' bill of rights.

New Study on Denial of Services to Patients.

An article at Women's Health Policy Report, (via Feministe):

An increasing number of patients are being denied certain kinds of medical care -- such as abortion or contraceptive services -- because of hospital policies based on ideological or religious beliefs, according to a report released last week by the National Health Law Program, the Los Angeles Times' "Booster Shots" reports. The report analyzed policies at hospital systems representing more than 650 medical facilities in the U.S.

Susan Berke Fogel, the lead author of the report, said, "When people go to the doctor, they should be able to expect that the care they receive meets prevailing medical standards." The report "found a disturbing number of case studies where patients ended up far worse off either because their health care providers refused care or because their hospitals prohibited the care they needed for ideological or religious reasons," she added.

According to the report, one in six U.S. residents receives care in hospitals that have some restrictions on services. The report says that the issue is usually portrayed as a moral debate between the conscience rights of health providers and patients' rights to care. However, that debate overlooks evidence-based decisions about determining the best medical practice, according to "Booster Shots" (Roan, "Booster Shots," Los Angeles Times, 5/30).

Who Makes Your Health Care Decisions?

The provider, apparently. Or your state legislator. Or the local Catholic bishop who oversees services provided by your hospital.

If we consider health care a civil right, a human right -- and that's a big IF; the AMA and other health care organizations have resisted this approach for decades, saying as Rand Paul has recently, that private institutions should not be required to treat blacks, for instance -- then the ability of these entities or individuals to deny services (and informed consent and meaningful referrals) is a violation of those patient rights.

Pew takes a look at the inherent discrimination in provider refusal clauses (so-called "conscience clauses") that allow not only individual providers but institutions to refuse services, information about available, legal services, or meaningful referrals.

Their subject line for the article is an infuriating: "Are Health Care Workers Obligated to Treat Gays and Lesbians?" Now substitute your favorite minority in there, like Women, or Elders or the Disabled? What about Mexicans? Or Blacks? Or maybe Unmarried Women? Or Gun Shot Victims? Or AIDs patients?

Read my May post about conscience clauses.

My feeling is that the intent of conscience clauses may originally have been to protect doctors and health care practitioners from performing services they are religiously opposed to -- I understand the need for conscientious objection, so long as the patient is given proper and legal information and access to those services. But the practice has become hospitals and individuals exerting their moral "teaching" on individuals (a pharmacist lecturing an unmarried woman about extra-marital sex and refusing to fill her birth control prescription). It's part of the mission to reform "ungodly" behaviors like abortion, extramarital sex, gay sex, or oddly, removal from artificial life support. Because Roe v Wade most likely won't be overturned, the effort over the last three decades has been to limit access to reproductive services; this has now spread to other "pro-life" services that are also on the platform.

Here's a clip from the Pew article:

How do the Michigan and California cases differ from cases involving doctors and abortion, or cases involving pharmacists and birth control?

The most important difference centers around the fact that federal and state legislatures have enacted laws granting exemptions for obstetricians and other health care professionals with respect to abortions (and, in a much more limited way, for pharmacists with respect to birth control). The abortion-related legislation reflects the view that people should not be forced to perform an act that they perceive as life-destroying. At the same time, legislatures have not been inclined to exempt health care professionals from laws forbidding discrimination based on characteristics such as race, gender or sexual orientation. Courts might not want to fill this gap and create those exemptions. Courts generally see anti-discrimination laws as serving important social purposes, and they are often concerned that such laws could be undermined by exemptions.

Another important distinction involves the possible extent to which services are withheld. Indeed, there might be a considerable difference, particularly from the government’s perspective, between an obstetrician’s refusal to perform abortions and a therapist’s refusal to counsel a gay man. The obstetrician has not refused to care for an individual or group of people, but only to perform a specific service. By contrast, the therapist’s refusal denies all services to anyone in a same-sex relationship with issues arising from that relationship, even though the therapist remains willing to provide comparable services to those in heterosexual relationships. The therapist’s decision could therefore be seen as undermining the state’s interest in protecting gays and lesbians from discrimination.

What arguments have been made by those who, like the student therapist in the Michigan case, seek moral or religious exemptions?

People who seek these exemptions usually make the following arguments. First, they assert that they are not opposed to serving gay or lesbian clients; rather, they are religiously opposed to aiding or facilitating certain aspects of same-sex relationships. For example, in the EMU case, Ward argued that she did not want to counsel a client with respect to his homosexual relationship but was willing to counsel him about other aspects of his life. Second, they contend that federal or state constitutional protections of religious liberty entitle them to these exemptions. Finally, proponents of such exemptions argue that granting an exemption will cause little or no harm to gay and lesbian clients because equally competent professionals are ordinarily willing to provide the services. Indeed, they say, as long as the number of exemption-seekers is small, and the number of professionals willing to serve such clients is large, the gay and lesbian clients will have adequate service.

Ward explicitly relied on the American Counseling Association’s Code of Ethics in arguing that she should be entitled to refer a client to another counselor in the EMU program if she determines that her personal moral convictions make it impossible for her to work effectively with that client. In the California case, the North Coast Women’s Care Medical Group made a similar argument about referral, though in that case, the referral would have been to a fertility specialist outside the North Coast group, because no one within the group was both willing and qualified to treat Benitez.

Debating The Priority of Conscience.

A recent panel at Boston College included Fr. J. Bryan Hehir, secretary of health and social services for the Boston Archdiocese (and the Mongomery Professor of the Practice of Religion and Public Life at Harvard’s Kennedy School of Government), Michael F. Greene, a professor at Harvard Medical School and chief of obstetrics at Massachusetts General Hospital, and Melissa Rogers, a lawyer who directs the Center for Religion and Public Affairs at Wake Forest University. The panel is described in an article at Boston College Magazine.

The subject of discussion was conscience exemptions, or provider refusal laws, that allow doctors to deny accepted medical procedures to patients because of religious or moral objection, including information about such available services or meaningful referrals for them. While the subject of "conscience clauses" most often arises when discussing women's reproductive services (abortion, emergency contraception), they also concern other areas of treatment including STD, pregnancy and AIDS prevention services for gays and lesbians, fertility services for lesbians, and end of life choices for terminal patients. I've long been pushing for more awareness regarding how these laws are practiced at Catholic hospitals because they are the second largest provider of health care in the country.

Because the Catholic church is a strong opponent of gay rights, end of life choice and women's reproductive rights, they have hidden behind such religious exemptions as a manner of forwarding their religious health care mission -- often refusing to comply with informed consent or referral ethics, while working to maintain their pronounced role in health care while infringing on patients' rights. In defense of such conscience clauses, "pro-life" advocates often claim that the conscience of the doctor or care-giver is morally superior to that of the patient and should be protected. Yet the web of laws that protect individuals have crept, over the years, to include the consciences of institutions. In other words, as Diogenes writes at Catholic Conscience, the church is able to use the shield of provider refusal laws to impose discriminatory care that they see as immoral. If you can't overturn Roe v Wade, the reasoning goes, limiting access to abortion and other services is the next best strategy.

Below is an excerpt from the article:

In addition to providing an overview of religious exemptions, the panelists suggested ways to move toward a societal consensus—the “fair adjudication” hoped for by Hehir—while quieting the noisy, sometimes angry debates between those who believe the state must honor any claim of conscience made by a health care provider and those who think the state should automatically deny such claims. Hehir called for “civility, attention to evidence in the arguments, making the arguments on the basis of reason, not on innuendo and ad hominem.” He also said that providers should claim exemptions “only for essential issues, not capaciously.”

Greene echoed this point when he chided doctors who won’t even refer a patient for a procedure that they refuse, on religious grounds, to perform themselves. He compared these doctors’ reasoning with that underlying a mythical court case against a farmer whose corn was made into whiskey that, in turn, fueled the misdeeds of someone the farmer never met. “There has to be a limit,” Greene asserted, “to the reach and realm of conscience.” He also cited doctors’ ethical duty to avoid situations where moral conflict might arise. “If . . . you have an objection to providing emergency contraception or abortion care services,” he quipped, “you shouldn’t volunteer” at your local Planned Parenthood office.

Rogers, too, advocated “early disclosure” by physicians of their religious objections to any procedure that they might be called on to perform. “That should not be something [the patient discovers] down the road,” she said, “in a crisis, in a conflict.” In addition, she called for a balancing of the provider’s right of conscience with the patient’s right to treatment. “We need to respect the moral autonomy of both patients and health care providers,” she said. Of pharmacists who refuse to provide morning-after contraception, she said, “If there’s [another] pharmacy close by that can provide the service . . . that would be a mere inconvenience. But it’s something else where there’s an actual lack of access, and we need to differentiate between those” situations. In the political debate over religious exemptions, “we often see a complete unwillingness to recognize” the other side’s point of view, Rogers added, and thus she called for respectful dialogue, conducted outside the political arena, between people on all sides of the issue, with a goal of finding “common ground principles” that could then be presented as model legislation.

Revising Provider Refusal Laws to Make Health Care A Civil Right.

There's a recent post by Peter Wilson at conservative American Thinker that's making the "pro-life" internet rounds. It addresses the provision in the Patient Protection and Affordable Care Act (the health care bill), Section 1553, that "protects" doctors from participating in assisted suicide (or aid in dying, death with dignity, etc.). The full text of the section reads (second source here):

SEC. 1553. PROHIBITION AGAINST DISCRIMINATION ON ASSISTED SUICIDE.

(a) In General- The Federal Government, and any State or local government or health care provider that receives Federal financial assistance under this Act (or under an amendment made by this Act) or any health plan created under this Act (or under an amendment made by this Act), may not subject an individual or institutional health care entity to discrimination on the basis that the entity does not provide any health care item or service furnished for the purpose of causing, or for the purpose of assisting in causing, the death of any individual, such as by assisted suicide, euthanasia, or mercy killing.

(b) Definition- In this section, the term `health care entity' includes an individual physician or other health care professional, a hospital, a provider-sponsored organization, a health maintenance organization, a health insurance plan, or any other kind of health care facility, organization, or plan.

(c) Construction and Treatment of Certain Services- Nothing in subsection (a) shall be construed to apply to, or to affect, any limitation relating to--

(1) the withholding or withdrawing of medical treatment or medical care;

(2) the withholding or withdrawing of nutrition or hydration;

(3) abortion; or

(4) the use of an item, good, benefit, or service furnished for the purpose of alleviating pain or discomfort, even if such use may increase the risk of death, so long as such item, good, benefit, or service is not also furnished for the purpose of causing, or the purpose of assisting in causing, death, for any reason.

(d) Administration- The Office for Civil Rights of the Department of Health and Human Services is designated to receive complaints of discrimination based on this section.

The clause protects providers who refuse to participate in legal aid in dying -- a point that should make "pro-life"groups very happy. No doctor, if asked by a terminal patient to provide a fatal dose of drugs, is obligated to write the prescription. But Wilson, forgetting that many who observed the New Year's Eve Montana Supreme Court decision Baxter v. Montana that determined aid in dying was legal there clamored for a strong conscience clause to protect doctors from having to participate. This clause does so. (Death with Dignity laws in Oregon and Washington, the other two states where aid in dying is legal, already include clear provider refusals that protect doctors from participating.)

But Wilson is trying -- and failing -- to get at something much more subtle. "Pro-life" groups in their activism oppose aid in dying in all its forms as they define them, including removal from futile care, removal from nutrition and hydration (see Terri Schindler Schiavo Foundation) and even, among extreme groups and individuals, palliative sedation. This section of "Obamacare," as Wilson and conservative opponents of the bill call it, clearly defines what "assisted suicide" is.

Wilson asks Rita Marker, executive director of the International Task Force on Euthanasia and Assisted Suicide (and pal of ultra-conservative, pseudo-science proponent Wesley J. Smith) what she thinks of 1553. She calls it, "a 'bizarre conscience clause' for those who refuse to participate in assisted suicide." Fair enough, I guess, depending on what she means by bizarre.

Provider refusal clauses -- so-called "conscience clauses" are a bit of a mess right now, as Wilson points out. The history of provider refusal clauses is rather brief -- and marks the point when technology began to overtake conservative ideas of women's roles in society and medical imposition to God's provenance -- and began as a reaction to the legalization of abortion in 1973. What were once "protection" of doctors from performing medical services they morally or religiously objected to morphed into "protection" of entire institutions, like the Catholic church which is the second largest provider of health care in the U.S.

Backlash to Roe v. Wade has expanded these federal laws (as noted below, states have their own blanket of provider refusals) to include increased rights of doctors at the detriment of rights for patients. Some do not require referrals -- a doctor is not required to give a woman, gay or elder patient a meaningful referral for services -- or informed consent -- a doctor is not required to tell a woman, gay, or elder patient all of their medical options. Some are renewed annually because they are attached to federal funding (hence the phrase "no federal funding for abortion," which is not factual: the clause only applies to Medicaid funds but exemplifies the slow creep of these laws).

I note women, gays and elders because these are the groups most often targeted by provider refusals. Here's a brief history of the federal laws that are currently on the books:

In 1976 the Hyde Amendment established that no federal monies allocated to Medicaid could be used to pay for abortions. Hyde, renewed each year, has been challenged in the courts numerous times and upheld (see Maher v. Roe.) The language has become more limiting over the years and during the health care debate, feminists had to admit that their historical acceptance of this law allowed it to morph into blatant discrimination against the poor. They have renewed their calls for overturning Hyde.

The first of the provider refusals, or so-called “conscience clauses,” the 1973 Church Amendment, named for Frank Church (D-ID), protects health care “entities” or individuals who accept Medicaid from discrimination for their choice to perform or not perform abortions. States enacted their own subsequent laws and today, according to the Guttmacher Institute, 46 states allow providers to refuse abortion services. Forty-three allow institutions to do so.

Republicans gained majority in the House in the 1994 elections for the first time since 1954, initiating a new wave of abortion restrictions. The 1996 Coats Amendment was a reaction to the requirement made by the accrediting body for OB/GYNs that students must receive abortion training. Congress stepped in to preempt the requirement.

In 2005, the annual Weldon Amendment was first attached to the appropriations measure that funds the Labor, Health and Human Services and Education departments. It stipulates that neither individuals nor “health care entities,” can be discriminated against for refusing to pay for, cover, or refer for abortion services.

And in December of 2008, what’s been called a “parting gift” from the Bush administration, the greatest expansion of refusal laws was enacted with support from the U.S. Conference of Catholic Bishops (USCCB) and the Catholic Health Association. In essence, it sold patients down the river and gave religious providers (individuals and institutions) not only the right to deny services but information about or referrals for them.

Since the Obama administration addressed the “conscience clause” last year the Catholic Church has mounted a campaign to retain it. Without such protections, the Church would lose the ability to dictate the services its providers perform and its more than 100 million annual patients receive.

Wilson's truncated history of provider refusals only hints at their 30 year creep and authoritarian nature. Once written to protect the conscience of individual doctors, a noble intent, they now allow institutions, most egregiously, the Vatican via the United States Conference of Catholic Bishops, to determine not only what care is provided to millions of patients but what available, legal care those patients can be informed of and referred to.

Rita Marker, without such intention, most clearly noted this creep in a recent article, also for American Thinker:

Some years ago, I was speaking to a Nebraska state senator after testifying on a pending bill. I had explained that I wasn't saying that the bill would be interpreted in a certain way, only that it could be. Then he said something I've never forgotten. "Be assured that if a law can be interpreted in a certain way, it will be -- by someone. And it will all be perfectly legal."

Unfortunately, the greatest resources and organization reside in the hands of institutions, churches, and other organizations determined to limit the use of medical technology based on denominational, theological or authoritarian principles. Not to that lone woman who is pregnant, shamed, in a traumatic situation; not to the dying elder who is suffering and no longer wants to be fed through a PEG tube in his belly, not to the rape victim; not to the doctor employed by a Catholic hospital but prevented from telling a troubled teen how to avoid getting HIV.

And here is another lesson for us about our form of Democracy. Majority rule defies the rights of minorities by supplanting individual conscience with the loudest and most funded voices in the country. If it is indeed the intention that counts, these laws are no longer intended to protect an individual doctor's conscience. They are used as tools by those who wish to make abortion, aid in dying and other patients' rights illegal -- or more importantly, legal but completely unaffordable and inaccessible.

And here is Wilson's objection to section 1533 of the health care bill: "it reframes the debate as one of civil rights, and brings assisted suicide more into the mainstream." The debate about patients' rights is already about civil rights; and it is already mainstream.

Strengthening the Advance Directive.

Thaddeus Pope at Medical Futility blog makes a great point about the president's recent move to strengthen advance directives. And to his post, I add my own point: at institutions where provider refusals (so-called conscience clauses) prevent patients from receiving treatment and information they desire, this effort will have no effect. Like at the 624 Catholic hospitals and hundreds of denomination health care facilities around the country. Pope's post in total:

On Thursday, President Obama directed DHHS to promulgate regulations that would "guarantee that all patients' advance directives, such as durable powers of attorney and health care proxies, are respected, and that patients' representatives otherwise have the right to make informed decisions regarding patients' care."

Now, hospitals already have statutory and common law duties to respect advance directives. Indeed, compliance is already required by the PSDA and regulations pursuant to the PSDA. If the new regulations are to add anything meaningful, perhaps they will mean that DHHS will (after two decades) actually enforce the PSDA.

That would be a great benefit. In contrast, the effect of DHHS regulations on LGBT individuals seems far more limited. Sure, the risk of federal enforcement may chill some hospitals that ignore advance directives appointing LGBT partners. But most LGBT patients do not have advance directives. And LGBT partners are rarely recognized as authorized decision makers under default surrogate statutes. Therefore, since DHHS merely enforces compliance with state decision making law, most LGBT obstacles will remain. The real problem is with state law.

Finally, Legacy Media Picks Up On New Catholic Directive.

While the US Conference of Catholic Bishops changed their Ethical and Religious Directives in November to now consider artificial nutrition and hydration "obligatory" care, few major media outlets have picked up the story. Yesterday, the Chicago Tribune finally ran a long article covering the issue.

They do the usual two-sides-to-every-story bit, primarily citing Catholic "experts" but slip in a quote from Barbara Coombs Lee of Compassion & Choices. My concerns with the story are many, including: the down-play of who ultimately gets to make decisions (the good-intentioned doctors at your friendly local Catholic hospital); little is made of why Catholic hospitals are allowed to make these decisions for patients; and the writer make no mention of how large the Catholic health care system is in the US - second only to Veterans' Affairs and serving 1 in 5 patients annually.

The comments from readers are resoundingly opposed to this imposition. We can only hope that this article and others like it will begin to spread. The more light shed on this draconian, paternalistic, authoritative new directive the better. And the more people aware of the Catholic Church's heavy grasp of health care delivery in this country - via provider refusal laws - the better a chance that elders and the public at large will fight it.

Here's a clip on PVS patients:

People in a persistent vegetative state, the bishops say, must be given food and water indefinitely by natural or artificial means as long as they are otherwise healthy. The new directive, which is 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 — including 46 hospitals and 49 nursing homes in Illinois — 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 resident. "I believe people's autonomy to make decisions about their own health care should be respected."

The guideline addresses the cases of people like Terri Schiavo, a Catholic woman who lived in a persistent vegetative state for 15 years, 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 atNorthwestern University's Feinberg School of Medicine.

On the various interpretations of the new directive:

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.

Some ethicists are interpreting that exception strictly. The Rev. William Grogan, a key health care adviser to Cardinal Francis George and an ethicist at Provena Health, based in Mokena, said death must be expected in no more than two weeks — about the time it would take someone deprived of food and water to die.

But Joseph Piccione, senior vice president of mission and ethics at OSF Health Care in Peoria, said that if a patient knows she is dying of, say, incurable metastasized ovarian cancer but is several months from death, she can decline to have a feeding tube inserted if she anticipates significant physical or emotional distress from doing so.

Of course the Catholic media have done their job in spreading the over-dramatized Rom Houben story and the new study of PVS patients that suggests few are able to hear and experience brain waves that respond to questions from researchers. Both cases have been repeated and spread in an effort to promote the Church's - and Fundamentalist and Evangelical fellow-travelers' - "pro-life" stance. A commenter brings up Houben's case as justification for the new policy.

And a clip of the questions that follow the article:

Q. What inspired the change?

A. Church leaders oppose assisted suicide and euthanasia and wanted to affirm strongly that the lives of severely disabled people have value.

Q. Does it apply to Catholics only?

A. The guideline affects all patients who seek care at Catholic medical centers, regardless of their religion, said Stan Kedzior, director of mission integration at Alexian Brothers Health System.

Q. Who decides if a feeding tube is "excessively burdensome" and therefore not warranted?

A. That's up to the patient, but it isn't as simple as, "I don't like it and I don't want it." There have to be discernible physical, emotional or financial hardships for the patient, according to Joseph Piccione of OSF Health Care. Those hardships must outweigh the potential benefits.

For the record: the decision is now not up to the patient. That should scare the hell out of us all.