End-of-Life Choice, Palliative Care and Counseling

Posts Taggedfeeding tube

What Are Living Wills and How Can They Benefit People With Alzheimer’s Disease?

By Esther Heerema, MSW
About.com
August 30, 2012

What Is a Living Will?

A living will is a document that contains your wishes for what kind of medical care you desire and how aggressive you want the healthcare providers to be in caring for you. Some living wills include the option for you to designate a medical power of attorney in the same document as you indicate your various healthcare choices. Others are drawn up in separate documents. This can vary by state and by document. Note that not all states will recognize a living will but regardless, it is a helpful tool to communicate your preferences.

Why Is a Living Will an Important Document for People With Alzheimer’s?

A living will is a good document for everyone to have, but especially so in Alzheimer’s disease and other kinds of dementia. Because dementia is progressive, you can anticipate that the ability to make decisions, including medical ones, will deteriorate. A living will provides you with the opportunity to outline ahead of time what your wishes are and how you want your medical decisions to be made. More

Signs of Hope in Western States

Historically, end-of-life choice has suffered at the hands of politicians. The people’s simple yearning for freedom and control at the end of life has been no match for the heavy-handed political power of long-established religious and medical lobbying institutions. In statehouse after statehouse aid in dying fell to Catholic bishops’ threats of shunning and excommunication, and the American Medical Association’s power to grant and withhold political favors.

Even the Oregon legislature defied the popular will in 1997 and put a repeal of the voter-approved Death with Dignity Act on the ballot. Voters reaffirmed the law 60/40% that November and Oregon’s politicians have refrained from tampering with it ever since.

Now lawmakers in other states seem to be getting the same message: The people want and deserve something to say about how they might meet an imminent, inevitable death from terminal illness. This legislative season has seen the tide shift.

In Washington State SB 5378, attacking the state’s Death with Dignity Act (DWDA), failed to pass out of committee. Politicians seem to lack interest in challenging the will of nearly 60% of the voters, so the bill was never scheduled for a hearing and never made it out of the gate to begin the long legislative process.

SB 5378 would have repealed a crucial portion of the DWDA by labeling deaths under it as “suicide.” In fact, the bill was a thinly veiled attempt to identify people who used the DWDA and expose participating physicians. It would have made it possible for anti-choice extremists to intimidate physicians and harass grieving families and would have set the stage for hostile demonstrations at burials and memorial services, and placards and pickets at physician offices. Good riddance to that bad bill.

Montana senators also decided not to mess with that state’s court-sanctioned aid in dying. The senate judiciary committee considered three bills. One would have overturned the Montana Supreme Court decision. One would have undermined its ruling and a third would have strengthened the ruling and gone further to protect physicians. Senators of both parties heard from thousands of constituents that government should stay out of the patient-physician relationship and private end-of-life decisions.

So they did. When asked to over-ride the committee, the full senate voted overwhelmingly to stay out as well. Now it’s up to the medical community to conform to the court’s guidelines and mature the standard of care for aid in dying in Montana. This is as it should be, and as it is for every other end-of-life decision. One Montana senator noted that disconnecting a ventilator is just as crucial in deciding the time and manner of death, and government stays out of that decision — with no adverse consequences.

For the second year Wyoming lawmakers buried HB 148, which would create the crime of providing medical care “intended to cause death.” Such a bill would establish a thought crime, since no one can know what is in mind of the doctor as she advances morphine in the face of extreme suffering, or disconnects a ventilator or other life sustaining therapy. Declining or withdrawing a feeding tube was a particular target of this bill. Good riddance to that very bad bill.

It’s too early to say elected officials are becoming more responsive to their constituents than to powerful lobbying power in these matters. Vermont lawmakers may soon hold hearings on an Oregon-style Death with Dignity bill. Its passage would certainly be a most positive development. May the politicians of Vermont find courage and leadership in the recent actions of their colleagues in Washington, Montana and Wyoming.

Pope vs. Doctors: How New Vatican Orthodoxy Undermines Medical Ethics and Imperils Your Health

 Jacob M. Appel, Bioethicist and medical historian

The Huffington Post

Posted: February 10, 2010 05:31 PM

Catholic hospitals, which boast a long and admirable history of caring for the seriously ill and indigent in the United States, have for many years finessed the challenges of serving two disparate and often incompatible masters. On the one hand, the nation’s 573 Church-run hospitals and their physicians are not permitted by Vatican policy to offer services or advice to patients when doing so violates Catholic teaching. In theory, prohibited activities range from providing abortions and assisting suicides to urging patients with HIV to wear condoms when engaged in unprotected sex or telling bipolar women on lithium to use contraceptives to prevent birth defects. On the other hand, these hospitals–which serve about one third of all patients in the nation–are also quasi-public institutions, and their physicians and nurses are bound by the same ethical obligations that govern all other members of their professions. They must obtained informed consent, honor patient autonomy, and offer medical care in line with the clinical standards of their colleagues at secular institutions. While a latent tension often exists between these competing allegiances, two recent developments relating to Church policy have set medical ethics and Catholic doctrine on an unfortunate collision course.

The first of these disturbing Church salvos against mainstream medical ethics is to be found in the newly promulgated Directive 58 of the United States bishops’ body governing Catholic health care services. This edict states that, barring certain specific circumstances, such as imminent death, Church doctrine prevents competent patients from refusing artificial nutrition and hydration. William Grogan, a religious advisor to Cardinal Francis George of Chicago, explained to the media that death would have to be expected within two weeks for a patient to turn down a feeding tube. In other words, according to current Catholic teaching, a cancer patient in a coma with a life expectancy of four weeks must now be force-fed–no matter what his prior instructions stated and without regard to his family’s wishes. All comatose and vegetative patients will be required to accept nutrition and hydration indefinitely, even if they leave behind air-tight living wills objecting to such “heroic” and invasive measures. This extreme policy apparently applies to all patients receiving care in Catholic-run hospitals, whether or not they are Catholic. Since United States courts have consistently accepted that mentally-competent patients have a right to refuse care if their wishes are clear and documented, these rules may well be illegal. However, even if Directive 58 is not a violation of the law, it is a gross breach of accepted standards of medical ethics. No doctor or nurse in the United States may provide such unwanted nutrition and hydration without defying a well-established code of professional conduct. It is likely that any provider who acted in this paternalistic and unequivocally immoral manner would lose his or her license. In the very least, the provider would become a pariah among his colleagues.

A second Church-instigated challenge to medical ethics has arisen as a result of a grass roots protest by anti-abortion organizations in Pennsylvania against the well-regarded St. Mary’s Medical Center of Langhorne. In this case, Dr. Stephen Smith of St. Mary’s performed an ultrasound on an expecting mother and confirmed that the fetus had polycystic kidney disease, a fatal condition in infants. Smith recommended an abortion. When the pregnant women sought a second opinion, a midwife at Mother Bachman Maternity Center in nearby Bensalem, operated by the St. Mary’s, also recommended termination. The mother refused, which was certainly her prerogative, and the infant died two hours after birth. When local abortion opponents publicized Smith’s advice, a private citizen named Joseph Trevington demanded a formal review of St. Mary’s by the local archdiocese. The results of this ethics investigation are not yet publicly known, and may never be revealed, although a diocese spokesman stated that changes in the hospital policies are to be expected.

The very decision to conduct such a moral audit displays a chilling new direction in Church practice. As a matter of doctrine, Catholic hospitals require employees to “respect and uphold the religious mission” of their institutions as “a condition for medical privileges and employment.” So, in theory, any physician endorsing abortion (or vasectomies, birth control, withdrawal of life support, etc.) while on the hospital premises should be relieved of his duties. As a matter of Catholic doctrine, Trevington and his anti-abortion brethren appear to have the better half of the theological argument, at least when it comes to consistency and the letter of the law. At the same time, allowing Church dogma to dictate the medical practices of physicians clearly violates the most basic tenets of healthcare ethics. Dr. Smith had a duty to offer advice to his patient based upon his best independent professional judgment–which he apparently did. The Hobson’s choice that he faced–either to follow the Catholic “law” enshrined as policy or to adhere to medical obligation–was unreasonable and unacceptable.

Both of these events expose the dark and unspoken (although widely understood) secret that enables Catholic hospitals to practice first-class medicine: Official Church policy on matters such as contraception and end-of-life care, like much Catholic doctrine more generally, is largely honored only in the breach. I have known many excellent physicians over the years, both religious and secular, who work at Church-run hospitals. All of them advise women taking medications that cause birth defects to use contraception and tell HIV-infected patients to use condoms. Many offer direct counseling on abortion, certainly when fetal prognosis is grim. I cannot imagine any of these gifted doctors would force-feed an unwilling cancer patient in violation of an advance directive or a health care proxy’s wishes. Much like the absurd loyalty oath that New York’s college professors–myself included–take to uphold the state’s constitution, any pledge to support Catholic doctrine on medical matters is broadly viewed as a formality to be agreed to and then summarily ignored. Historically, the Church has looked the other way. Now, by challenging this longstanding system of benign neglect, bishops and grass roots zealots may believe they will achieve ideological purity. What they are actually doing is jeopardizing both the welfare of Catholic hospitals and the public health.

Some concrete thinkers may argue that since Catholic hospitals are “private” institutions, the Vatican can impose any rules that it wants. The claim belies the inherently public nature of the American hospital system. Catholic hospitals–like virtually all other hospitals in the Unites States–are only able to function as a result of a swath of government handouts and subsidies. Medicare and Medicaid pay the bills of almost half their patients. Federal funding supports the salaries of their medical residents. NIH Grants sponsor their research and clinical care. Many of the hospital buildings themselves were erected will federal construction dollars providing by the Hill-Burton Act of 1946. Private businesses may have a claim to considerable leeway in formulating their own rules and policies–although even “mom & pop” stores are reasonably prevented from excluding African-American customers and are often required to accommodate disabled shoppers. In theological matters, the Pope is certainly free to issue any decree he likes and those who wish to follow his dictates are entitled to do so. In contrast, Catholic hospitals function as public entities that serve people of all faiths and traditions. A patient in a medical emergency is taken by ambulance to the nearest hospital, not the nearest hospital that shares his social values. A system that operated otherwise would lead to logistical chaos and increased mortality. Once one accepts the premise that Catholic hospitals are public institutions, they have a moral obligation to comply with generally accepted standards of patient care and professional ethics. Today’s hospitals are far more Caesar’s than they are God’s.

One of the greatest triumphs of modern health care in the United States is the rise of nonsectarian service. In an earlier era in New York City, for example, Jews sought care at Mount Sinai while Protestants preferred Presbyterian Hospital and Catholics chose St. Vincent’s. Now, most patients–and all wise ones–choose their health care providers for clinical skills and personal attributes, not religious labels. As a result, the majority of patients at Catholic hospitals are not Catholic. To impose orthodox Catholic doctrine on these non-Catholic individuals at the most vulnerable moments of their lives would be the most significant Church intervention in the lives of non-adherents since the Inquisition. Doing so would also threaten the ability of physicians to practice at Catholic hospitals without violating their professional codes of ethics. In light of these developments, any patient currently receiving care in a Catholic-run hospital should immediately clarify with her doctor whether this physician will follow the patient’s own end-of-life wishes regarding so-called heroic measures if they come into conflict with Directive 58.

The Catholic Church has every right to announce and publicize its views on certain medical interventions and to declare that Catholics who engage in certain conduct are violating the rules of the Church. It’s the Pope’s club. He can make the by-laws. He does not have any business imposing such rules on third parties who do not wish to follow them. It will be a sorry day if American patients seeking the best medical care are forced to avoid Catholic hospitals for fear of having their living wills ignored or their doctors’ counsel dictated from Rome. The Church would be wise to focus its energies on theology and to leave the practice of medicine to the professionals.

Read this post at its original site at The Huffington Post.

Media Shine Light on New Mandate from Bishops

We have been spreading the word since the US Council of Catholic Bishops (USCCB) adopted new rules in November, obligating feeding tubes for permanently unconscious patients in Catholic healthcare facilities. David Dayen at firedoglake and Ann Neumann at otherspoon have reported the story. Now traditional media sources are picking up the story.

On December 20th, Charles Stanley of Atlanta’s Sunday Paper reported on the new directive, its potential conflict with patients’ stated wishes, and the potential legal conflicts.

In yesterday’s San Francisco Chronicle, Bob Egelko reports on the new mandate’s impact on Bay Area Catholic care facilities and the families who could face unexpected challenges in making decisions about care for a loved one.

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.

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.

There you go. “the November decree isn’t rigid and leaves room for accommodating patients’ wishes.” Because you can do what the Bishops tell you to do, or go somewhere else.

You can read the full San Francisco Chronicle article here.

Feedings Tubes For All — The Bishops Know What’s Best for You

The enforcement arm of the Catholic Church has ordered feeding tubes to be inserted in all comatose and vegetative patients in Catholic institutions and maintained indefinitely. Compassion & Choices has warned of the impa How To Get Your Your Ex Boyfriend Back ct this will have on your healthcare choices. I want to make clear the sources of the outrage I expressed in my last blog.

For years I have been well-acquainted with the Ethical and Religious Directives for Catholic Health Care Services (ERD’s). But the Bishops’ recent action prompted me to review the document again, and its arrogant presumption of moral superiority struck me anew.

I understand the history and spirit of sectarian health care, and I feel open and accepting of its role in America. In the 1970′s I practiced as a physician assistant in a Seventh Day Adventist healthcare system and I delivered both my children in its hospital. I truly appreciated the staff’s attitude of spiritual calling and the prayers they offered for my safety and my babies’. True, those awful soy patties from cans almost turned me away from vegetarianism for life. But it seemed to me the Adventists ranked service and humility ahead of doctrine and I never saw their religion dominate a conversation or a medical decision.

The ERD’s are different. They are all about dominance. Four aspects are especially chilling in their authoritarian pronouncement.

First, the Bishops explicitly target everyone, of every faith, with the “revealed truth” reflected in their ERD’s. The document specifically directs its mandates beyond hospital employees and Catholics, to every patient, resident or recipient of Catholic services. Everyone — Buddhist, Muslim, Jewish, Protestant or Unitarian — must obey.

Second, the Bishops may acknowledge a pluralistic society where various spiritual disciplines lead to different moral conclusions, but they do not hesitate to over-ride them. Your conscience and religious beliefs just don’t count because, according to the ERD’s, “…Catholic health care does not offend the rights of individual conscience by refusing to provide or permit medical procedures that are judged morally wrong by the teaching authority of the [Catholic] Church.“  Well, those who believe artificial maintenance of an insensate body degrades God’s gift of life might disagree. They might well think insertion of a feeding tube against their will does offend their right of conscience.

Third, doctrine always trumps individual decision-making. Dealing with advance directives, ERD’s specify that hospitals “will not honor an advance directive that is contrary to Catholic teaching.” So, too, “The free and informed health care decision of the person or the person’s surrogate is to be followed so long as it does not contradict Catholic principles.” They’ll honor your decision — but only if they agree with it.

Fourth, many find shocking the exaltation of suffering as “participation in the redemptive power of Christ’s passion“. And few non-Catholics find comfort in Directive #61. There we find that dying patients “experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.”  Apparently the nurses are to deliver a theology lesson to patients dying in agony.

The ERD’s demonstrate that one purpose of Catholic health care is to coerce people of all faiths into following Catholic moral teachings. Employers facilitate the coercion when the only health plan they offer is Catholic. States facilitate the coercion when they approve hospital mergers rendering large geographic areas devoid of any but Catholic health care. Insurers facilitate the coercion when they fail to offer a broad choice of providers within their coverage.

My sense is the feeding tube mandate finally crossed a line, where states, employers, and insurers will no longer be willing to participate in the coercion. Personal dignity, individual right of conscience and autonomy in healthcare decisions are too important to continue to pretend Catholic healthcare is not prejudicial and discriminatory against non-Catholics.

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