End-of-Life Choice, Palliative Care and Counseling

Posts TaggedSchiavo

Making Their Wishes Known: Advance Directives Ease Fear

by Carol Harrison
Times-Standard
October 21, 2012

Amy Cirincione hails from a large Italian family, the kind that flocks to the hospital when one of their own is an emergency admission.

“The way we deal with crisis is yelling,” Cirincione said on the last Saturday in August. “I filled out an advance directive to help my husband deal with my family.”

Laughter, smiles and nods filled the Hospice of Humboldt annex where Cirincione is the director of social services. For the past year, she’s used humor, experience and knowledge to help almost 75 people plan for the end of life by filling out an advance directive.

”Anyone over 18 should have one,” she said while setting up for the free, two-hour workshop in August. “You can be hit by a bus or have routine surgery with complications. You need to make sure your wishes are known.” More

Going Gently Into That Good Night

By Daniel Krieger
Narratively
September 18, 2012

If you’re dying and don’t care to wait around for death, you can always book your own appointment. One simple way to do this would be to stop eating and drinking; another would be to stop life-sustaining medicine or devices. Assuming you can decide on your own, both of these methods are good and kosher as far as the law goes. A third approach, however, ventures into a grayer area of legal and ethical terrain—quaffing a lethal cocktail. In the business of ending your life, the means matter a lot more than the final result.

These were three things my mother, Ann Krieger, was pondering when she reached the final leg of her terminal illness last year, a month before Mother’s Day. After several years of fighting colon cancer, her doctor broke the news that the cancer had spread and the treatment was no longer working. There was no more they could do.

“You’ve got months, not weeks,” he said.

“What should I do?” she asked. “Should I end it now?”

“No,” he said. “You don’t want to do that.”

Actually, my mother kind of did, but the doctor referred her to hospice and gave her information about palliative care, a mode of treatment that relieves the pain of patients with serious illnesses. But in my mother’s case, the physical distress was less acute than the existential. Coming to terms with the fact that you’re going to die is elusive. For some people, like her, an attempt to manage the logistics could make it seem more doable. She and my father had given this some thought and had very specific ideas about how they wanted their end-of-life matters handled.

Six years earlier, horrified by what was taking place with Terri Schiavo in Florida, they sat my sister and me down to give us instructions. Should it ever come down to it, my parents told us, they wanted no artificial resuscitation, experimental procedures, machines or IVs—none of that stuff. They just wanted us to make sure they would be allowed to die naturally. “The idea,” my father explained to me recently, “is to be pain-free, comfortable and not go through a lot of unnecessary, costly and painful treatments which won’t help anyway.”

My mother had first-hand experience with this 21 years ago when her mom, my grandma Trixie, who was in perfect health at 85, was struck by a hit-and-run driver near her home in Queens. The doctors at New York Hospital said she had severe trauma in her brainstem and wouldn’t wake up. She was hooked up to a ventilator. More

Vigilantes in Scrubs

A study published this month paints a troubling picture. Imagine palliative care doctors, working to deliver the best possible comfort care to their patients. Yet even as they meet the recognized best practices of their profession, their colleagues are judging their covert intentions and moral fiber.

Over half of the physicians who responded to the survey, published in the Journal of Palliative Medicine (JPM), reported they had been accused of “murder” or “killing” at least once in the past five years. Most often, their accusers were fellow members of the healthcare team.

Accusations came most frequently when doctors treated shortness of breath during ventilator withdrawal and when they increased doses of pain medication and sedatives to treat rapidly escalating symptoms.

Self-appointed moral police have been portraying end-of-life decisions as murder and trying to subvert them ever since the Cruzan case, in which the U.S. Supreme Court recognized the right to refuse life-sustaining treatment. That may be the first time noisy protestors harassed family members struggling over difficult, private decisions to do right by loved ones. Intrusive protests reached their pinnacle in the circus surrounding Terri Schiavo. Grandstanding lawmakers even tried to substitute their own diagnosis and judgment for those of doctors and responsible family at the bedside.

This month’s study reveals how deeply moral watchdogs are embedded in the ranks of medical professionals, and how much damage they can do. Doctors in this study faced investigation by their institutions, state medical boards, and state and local prosecutors. Accusers seem quite willing to slander and jeopardize the careers of their colleagues when they disagree with treatment decisions reached in consultation with patients and family members.

The problem is not new. An editorial in the JPM in 2005 explained the effects on those involved and the potential to distort the practice of palliative care:

A hospice medical director in a federal facility followed accepted guidelines when providing palliative sedation to a few of his terminally ill patients. This resulted in a formal investigation by the Office of the Inspector General. Over a period of 1 year, the physician faced criminal charges and the loss of his job. Although cleared from having performed either unethical or criminal acts, he was sufficiently upset by the experience that he left his position and moved to another state.

The training director of a palliative care teaching program reported, “When I first performed ‘terminal’ sedation on the ward, nurses really had a problem. Just last week, I had a resident accuse me of euthanasia, because I ordered a low-dose morphine drip. It’s part of the day-to-day way of life in hospital palliative care.”

Accused doctors in the current study reported mental distress and anger. None were ever convicted, but some suffered license suspension, monetary damages and forced relocation. Ultimately, patients will bear the most distressing consequence: increased end-of-life suffering. Who will treat pain or breathlessness aggressively again after being so accused and harassed?

We need specific legal protection for professionals who honor their patients’ end-of-life decisions and follow best-practice standards for managing end-of-life agonies. Unfortunately, current law in most states does not grant unequivocal protection to treatment that is appropriate for the situation and follows the patient’s wishes. The dominant thinking today is that legality of treatment hinges on the state of mind of the physician: Did the doctor “intend” the death of the patient?

The field of bioethics rests on four premises. These include autonomy – respect for the individual, and beneficence – actions intended to benefit the patient. Sometimes autonomy and beneficence are in tension. Palliative care doctors bear some responsibility for the current situation, as they have sought legal protection based on the beneficence principle and their own intentions, rather than a patient’s autonomy and self-determination.

When a doctor employs drugs that relieve pain, delirium and breathlessness, and also suppress respiration, they know it is possible that medication may advance the time of death. Current policies protect them only if they acknowledge death as a possible, unwanted side effect, and assert their only intention is to ease the patient’s suffering. The principle amounts to: What is going on in the doctor’s mind? Of course no one can know, and the unknowable nature encourages accusations of improper intent. “Intent” protection will never offer real security to doctors or optimal care to their patients.

The answer is legal protection for medical care consistent with the informed, documented healthcare decisions of the patient or the surrogate, and consistent with standards of practice. Physicians should be able to deliver excellent care, prevent suffering at life’s end and act according to a patient’s wishes. A patient or surrogate should understand and accept that aggressive, effective comfort care may advance the time of death. It should not be forbidden for a patient or surrogate to “intend” death when they opt for removal of ventilator support or any other life-sustaining therapy. Doctors should not feel forced to withdraw and undertreat the patient who states such an intention. Only with clear legal protection – based on patient autonomy – will good doctors be safe from self-righteous posses of second-guessers and accusers.

Hospitals Ordered To Follow End-Of-Life Care Wishes

Listen to Barbara Coombs Lee on NPR’s All Things Considered

Read a transcript of the story here >>

How the opinion of one pope became the rule for all Americans

The US Conference of Catholic Bishops (USCCB), as I have written, recently mandated tube-feeding for all permanently unconscious patients in Catholic healthcare institutions. This contradicts the desires of the vast majority of Americans. The Bishops are indifferent and have decided to act as agents of the Vatican, even as they exercise enormous control over healthcare choices in America. How did they arrive at this position of arrogance?

The story of how one pope’s opinion came to control Catholic healthcare throughout America is both fascinating and scary. It is the story of debate squashed, and profound authoritarianism prevailing.  The story ends with absolute obedience to the dictates of Rome by Catholic medical providers who vow to impose the pope’s dictates on Catholic and non-Catholic patients alike, even though they personally disagree with the edict.

For decades after feeding tubes became commonplace, the ethics of Catholic healthcare institutions maintained a generous and merciful position toward their use. Their position rested on a principle that one must employ ordinary means to prolong life but may forego extraordinary means in the same circumstance.

Professor of religion and social ethics Thomas Shannon wrote

. . . the common Catholic tradition has sought to determine what benefits an intervention would provide and whether the burdens of intervention are proportionate or disproportionate to the expected benefits.

In this view, the use of a feeding tube is evaluated considering a patient’s individual views on the quality of life, burdensome medical treatment and what constitutes a faithful and devout relationship with God. Many Catholics were comfortable with the common tradition, and many Catholic ethicists comfortable allowing families to give weight to their loved one’s aversion to living in a state of suspended animation for years or decades.

Extreme pro-life Catholics, however, argued that food and water, even artificially administered, are ordinary and basic, and sustaining life itself of any quality is fundamentally beneficial. Pope John Paul II fostered the ascendancy of the pro-life movement within the Church.

Prompted  by The Terri Schiavo case, the Pope sided with the picketers outside Ms. Schiavo’s hospice room, declaring that tube-feeding patients in a permanent vegetative state “always represents a natural means of preserving life, not a medical act” and should “be considered, in principle, ordinary and proportionate.”

Did the pope’s guidelines allow for the patient’s view of benefits and burdens? Some ethicists still thought yes, but a September, 2007 response from the Congregation for the Doctrine of the Faith (CDF, formerly called the Office of the Inquisition), said:

No. A patient in a ‘permanent vegetative state’ is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.

Even then some Catholic bioethicists like John Hardt looked for personal choice in the CDF’s use of the phrase, “in principle.” But in November, the Bishops closed the door: feeding tubes are obligatory.

Why did the bishops make a nationwide rule at odds with the beliefs of many devout Catholics, with a tradition of weighing benefits and burdens on an individual basis, and with established medical practice at most Catholic institutions? My own opinion is the Vatican and the Bishops turned to serious enforcement to impose their dogma precisely because Catholic patients and practitioners were not following their extreme pro-life doctrine in private medical decisions.

My friend Dan Maguire, Professor of Moral Theology at Marquette University, has said,

In Catholicism there are three sources of truth, (or three “magisteria”): the hierarchy, the theologians, and the wisdom and experience of the laity (called in Latin sensus fidelium).

Like a three-legged stool, multiple sources of wisdom have maintained the stability of Catholic wisdom. In the feeding tube decision, I believe the honest observer would see a one-legged stool making all the decisions, and a clear victory for the hardliners.

The moderates have lost the debate, and so have we. The Vatican has cut off the two offending legs of the stool and nullified ethical consideration of individual weighing of burdens and benefits. Cardinal Rigali, chair of the Committee on Pro-Life Activities and Bishop Lori, chair of the USCCB Committee on Doctrine, in stern tones, announced as much:

Even if one judges that such a condition, when prolonged, makes survival itself a burden, such a judgment does not justify removing food and water …

Codification of the Vatican’s ruling in the Ethical and Religious Directives ties the hands of Catholic patients and families, faithful physicians, nurses and caregivers and impacts everyone under care in a Catholic healthcare institution. We must increase public awareness of the threats to their rights in Catholic institutions and take steps to stop the Vatican from unilaterally ignoring legally executed advance directives. There can be no further dissent from within the Church. Daniel Sulmasy, a Franciscan Brother, internist and ethicist at St. Vincent’s hospital in New York, sympathizes with people of deep faith who do not wish to offend God, but nevertheless are horrified at the prospect of years, or even decades, lingering in a state of mere existence, without the ability to think, feel, pray, or relate to loved ones.  Fr. Sulmasy said the restrictive rule would be difficult to follow, though as “an obedient friar and physician” he would do so.

Consumers of Catholic healthcare, don’t say you weren’t warned.