End-of-Life Choice, Palliative Care and Counseling

Posts Taggedadvance directives

The Death Panel Boogeyman

December 28, 2010
Stephen J. Dunn

In 25 years of law practice I have done estate planning for hundreds of people. Every one of them has wanted a health care durable power of attorney. Such a document enables the client (“patient”) to name someone (“patient advocate”) to make medical decisions for the patient in the event the patient is unable to make them for himself. Those decisions include the decision to terminate or forgo medical care if, in the opinion of the patient’s attending physician, either of these conditions exists: (1) the patient is in a persistent vegetative state without hope of recovery; or (2) the patient is terminally ill and expected to die within six months, and medical treatment would only serve to artificially delay the patient’s death. A health care durable power of attorney also expresses the patient’s wish not to receive medical treatment if either condition persists.

Most health care durable powers of attorney name one or two back-up patient advocates in the event the prior-named patient advocate is unable to act. A health care durable power of attorney becomes part of the patient’s medical record.

A health care durable power of attorney empowers a patient to remain in control of his or her medical care and avoid the indignity and suffering that might otherwise obtain. When my mother was in her final illness, she shared a hospital room with a woman who had been lying in a vegetative state for years. The woman laid in bed all day long with an agape expression on her face. Unable to swallow, she was fed through a tube inserted into her stomach. One can certainly question the wisdom and compassion of such treatment. Taxpayers paying for it is beyond misguided.

A health care bill proposed by House Democrats in 2009 included a provision for Medicare reimbursement to doctors for end-of-life counseling, including the availability of a health care durable power of attorney. Such a provision evinces sound policy. Many seniors cannot afford to have an attorney counsel them about a health care durable power of attorney.

Nonetheless, House Minority Leader John Boehner, R-Ohio, whose judgment I normally revere, seized on the provision and urged that it would “start us down a treacherous path toward government-encouraged euthanasia.” Former Governor of Alaska Sarah Palin raised the spectre of “Obama’s death panels.” Such fearmongering lacks any basis in fact. No one is advocating euthanasia or “death panels.” The health care law enacted in March, 2010 omitted the end-of-life counseling provision.

Reimbursement for end-of-life counseling has recently returned, in the form of a Medicare regulation to take effect January 1, 2011. Once again we are hearing the term “death panels” recklessly cast about in the media. Hopefully such groundless sensationalism will not derail a regulation so clearly in the public interest.

Where Is Our Hope When Catholic Bishops Lay Down the Rules?

When the news reached Compassion & Choices in November that the US Council of Catholic Bishops (USCCB) had ordered Catholic institutions to disregard certain advance directive instructions or family wishes regarding tube feeding, I asked myself where, in this affront to personal choice, we could place our hope.

I have written about the Bishops’ new Directive #58, about its arrogance in coercing patients to either comply with their dogma or check out of their institutions, and about the long shadow the Bishops cast over healthcare in America.

Since November various commentators have offered differing visions of hope for those troubled by having an authoritarian church, possibly not even of their religion, impose treatment against their wishes should they ever be permanently unconscious. An article in Atlanta’s Sunday Paper December 20 discusses the legal, ethical, religious and autonomy issues at length.

The Catholic Health Association of the United States (CHA), apparently hopes that only in unusual cases will a Catholic facility overrule patient or family wishes. They write:

“In the vast majority of cases, patients’ advance directives will be honored. … There may be the occasional situation, such as some patients in a persistent vegetative state, when what the patient is requesting through his or her advance directive is not consistent with the moral teaching of the Church. In these few cases, the Catholic health care facility would not be able to comply.”

The number of patients who fall into a permanently unconscious state is, of course, small compared to the 5.5 million who receive treatment each year in Catholic hospitals. The CHA offers the hope you or someone you love will not be among the unfortunate few.

Some offer hope that the new Directive does not really mean what it says. Alan Sanders, director for the Center for Ethics as Atlanta’s St. Joseph’s Hospital, emphasizes that patients’ wishes are considered an important part” of the decision-making process.

He points to language in the Directives pertaining to a person’s right to “forgo extraordinary or disproportionate means of preserving life,” as protection of a patient’s right to have his or her wishes considered in the event they are faced with a chronic and irreversible condition such as being in a long-term coma.

According to the Directives, proportionate means are “those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or community.”

Sanders believes that patients’ or their surrogates’ concerns about matters arising from being maintained in a PVS could constitute the sort of undue burden recognized by the Directives, making it acceptable to remove a feeding tube.

Unfortunately Sanders’ hope is false. The new Directive #58 is quite specific, and as such, overrides any general language appearing elsewhere in the Directives Document. And the Directives specify that an “undue burden” is only one that would “cause significant physical discomfort, for example resulting from complications in the use of the means employed.”

Father Thomas G. Weinandy, executive director for the Secretariat of Doctrine at the USCCB, offers the hope that you or your family members, guided by the Bishops’ wisdom, will accept Catholic doctrine and change your mind:

“Whoever was speaking on behalf of the hospital would tell [the patient’s representative] what the Catholic Church’s teaching is and why it holds to that,” he says. “If they want that [patient’s] directive followed, they’d need to move them to another health care facility where that directive would be followed.”

How hard hospital staff might push the family to submit to Catholic doctrine goes unstated. So you can also hope that your family has the courage and determination to stand up to those in the position of power, and what may seem like undue influence and coercion. You’ll also need to hope that in your town there is another hospital (though some areas are served only by Catholic health care) ready to honor your wishes and that the transfer will not be too traumatic for either patient or family.

Might you place your hope in the legal system?

Alan Meisel, founder and director of the University of Pittsburgh’s Center for Bioethics and Health Law, wonders if Catholic hospitals could be compelled by law to respect patients’ advance directives, regardless of the Church’s moral stance. He says it is not clear whether the legally binding power of an advance directive would outweigh the Church’s right to administer medicine in accordance with its beliefs:

“[If] the hospital seeks to impose a treatment on a patient which that person does not want, to impose that treatment is battery,” he says, but adds a caveat: “One could say since you’ve admitted yourself to a Catholic hospital, that’s a form of consent.

“If I were a patient with a directive,” he continues, “I would probably add to it that I didn’t want to be taken to a Catholic hospital.”

Father Weinandy believes the Directives handed down by the Church are not only legal, but protected by the United States Constitution.

“I would like to think that for the government to require Catholic hospitals to abide by these [patient] advance directives would be against the First Amendment freedom to practice one’s religion without being intimidated or coerced into doing something that is opposed to one’s religion,” he says.

A patient’s constitutional right not to be intimidated or coerced into accepting treatment in opposition to their belief system is not Father Weinandy’s concern. And Father Weinandy’s stance is gaining ever-greater legal protection, elevating the rights of providers, and the authorities that direct them, above the rights of patients.

My hope is to keep alive, even in the darkest days, the flickering light of personal liberty. I believe in accepting, even embracing each other’s differences, and in the right of each individual to a free and responsible search for truth and meaning. And I believe that those who choose a path of community service, like health care, owe their patients dignity and respect for deeply held values and beliefs — even those that differ from their own.

At Compassion & Choices, we hope that in the future, that light will burn brighter; patients will expect, providers will recognize and our laws will insure — that the beliefs and choices of patients and their families are paramount. I hope each of us will be able to choose a hospital, nursing home and insurance plan that honors our moral decisions instead of imposing their own. I hope for a time when all Americans can live and die as free people, in dignity and according to their own spiritual beliefs.

The Long Shadow of the Bishops

Do you remember where you were on November 17th when you heard about the vote to change healthcare delivery throughout America?

Chances are, you don’t remember because you didn’t hear the news – that day or any day since. It has been little reported in the media. But Compassion & Choices understands what this will mean for your healthcare choices. And the impact of the decision is greater than you can imagine.

I’m not talking about anything that happened in Washington, D.C., but in nearby Baltimore, where 500 Bishops voted to order Catholic institutions to require feeding tubes for all permanently unconscious patients, regardless of their advance directive instructions or family wishes.

The vote by the United States Council of Catholic Bishops (USCCB), directed a change in its “Ethical and Religious Directives for Catholic Healthcare Services,”  and I have written about the authoritarian nature of these Directives – on Catholics and non-Catholics alike.

The new language in Directive #58, creates “an obligation to provide patients . . . medically assisted nutrition and hydration” in all instances except when a patient is actively dying.

The revised Directive fails to respect settled law that empowers patients with the right to refuse or direct the withdrawal of life prolonging care, including artificial nutrition and hydration. The Supreme Court in the case of Nancy Cruzan recognized that such a choice is a fundamental liberty guaranteed by the US Constitution. State courts have reached the same conclusion based on State constitutional law and common law. But the Bishops have demonstrated no interest in patient choices that conflict with their Directives.

In the summer of 2000, Archbishop Justin Rigali of St. Louis forced Steven G. Becker to leave a Catholic hospital in St. Louis and go home to die. Rigali overruled a  decision to remove a feeding tube that had been approved by a court decision, advised by the hospital’s ethics committee and requested by Becker’s wife Christie, in keeping with her husband’s wishes. Rigali is now chairman of the Bishops’ Committee on Pro-life Activities and participated in crafting the newly adopted language in Directive 58.

Modern Healthcare reports,

“One solution to the issue was offered by John Haas, president of the National Catholic Bioethics Center and consultant to the U.S. bishop’s Committee on Pro-Life Activities, which helped draft the new Directive along with other groups. He said that if attempts to resolve a conflict over a feeding tube by talking through the issue failed, the patient or their legal guardian are free to seek care elsewhere.”

And Catholic commentator Michael Sean Winters writes in America, The National Catholic Weekly,

“And, if she doesn’t like the way Catholics do health care, go somewhere else. It’s a free country and there are no guards at the hospital doors. And, if there is no other hospital to go to, start one.”

This is the scope of the bishops’ order:
•    Catholic health care systems and facilities provide services in all 50 states. Services encompass acute care, skilled nursing, hospice, home health, assisted living and senior housing. Catholic institutions include:

•    624 Roman Catholic-affiliated hospitals.
•    499 nursing homes.
•    48 Catholic Health Maintenance Organizations (HMOs).

•    Catholic hospitals employ 525,193 full-time employees and 233,934 part-time workers.
•    More than 5.5 million patients were admitted to Catholic hospitals during a one-year period.
•    8 of the top 13 non-profit hospital systems in the country are Catholic health systems.
•    The Directive conflicts with all advance directives that decline artificial nutrition and hydration in the setting of permanent unconsciousness or advanced dementia.
•    Catholic health care is especially concentrated in some states and communities. In certain areas, including many of the nation’s poorest, it’s the only option.

•    Over 30% of patients in Washington, South Dakota, Iowa and Alaska are in Catholic hospitals, which are now unable to honor advance directives that decline tube feeding.
•    Catholic institutions provide more than 20% of care in Oregon, Montana, Connecticut, Colorado, Wisconsin, Michigan, Minnesota, Kansas, Oklahoma, Missouri, Arkansas, Illinois, Indiana, Ohio, Nebraska, Idaho, and, North Dakota.

and the population the Bishops’ Directive will impact:

• About 300,000 people receive feeding tubes each year. Roughly 75% are 65 years or older.
74% of Americans believe close family members should be the ones to decide medical treatment for a family member who cannot communicate his or her own wishes.

Apologists for the Bishops like to talk of the charitable nature of Catholic institutions, but taxpayers pay for health care to conform with USCCB Directives:

• Religiously sponsored hospitals in the United States bill the government more than $40 billion a year, while using religious doctrine to restrict medical care.
• In order to obtain public funding and still place its religious beliefs above the medical needs and individual conscience rights of its patients, Catholic and other sectarian health care providers have sought and obtained special government accommodations that have permitted these institutions to refuse to provide services they deem morally objectionable, while remaining eligible for public funding.
• Combined Medicare and Medicaid payments accounted for half the gross patient revenues of religiously sponsored hospitals in 1998. The other half came almost entirely from insurance companies and third party payers, not from churches or other religious sources.
500 Bishops voted November 17th to overrule the advance directives of millions of Americans and almost no one reported it. Compassion & Choices is spreading the word, and will keep you up to date as the Bishops move to implement their latest Directive.