End-of-Life Choice, Palliative Care and Counseling

Posts TaggedBarbara Coombs Lee

The Demise of the Catholic Hospital Brand

It used to be Americans viewed Catholic hospitals and healthcare systems with universal respect and trust. They had no reason to do otherwise.

Founded in the nineteenth century by orders of nuns with a mission to care for the poor, Catholic hospitals grew and thrived in modern industrial medicine. Many became conglomerates and dominant sources of healthcare in cities and towns throughout the nation, especially in the Western United States. The trade association founded in 1915, the Catholic Health Association today represents 1200 Catholic health care sponsors, systems, facilities, and related organizations and services. Catholics and non-Catholics alike have considered Catholic Healthcare an unqualified good, delivering high quality medicine and serving their communities’ needs. It made little difference to most people whether their hospital was Jewish, Seventh Day Adventist, Episcopal or secular. Indeed, the image of selfless nuns running charitable institutions probably bestowed a brand advantage on the Catholic entities.

This is no longer the case.

A conservative theology and obsession with obedience have ruined the brand. Nowadays the phrase “Catholic hospital” is as likely to conjure images of unyielding bishops enforcing dogma on the irreligious as kindly nuns delivering succor to the suffering. Today most people realize that very few nuns actually run or work in Catholic hospitals. Knowledgeable people also know Catholic hospitals deliver no more charity care than their secular nonprofit counterparts.

Change came gradually, but high-profile power plays by the bishops recently pushed the brand onto a steep downward slide.

Activist Bishops

1. Two years ago Phoenix Bishop Thomas Olmsted excommunicated a prominent nun for allowing doctors to save a woman’s life by terminating her pregnancy. When the hospital stood by the decision not to let both mother and fetus die, Olmsted stripped the entire medical center of its Catholic affiliation. National commentators openly warned women with reproductive emergencies to avoid Catholic hospitals.

2. In February 2010 Bishop Robert Vasa revoked Catholic affiliation for St. Charles Medical Center in Bend, Oregon for providing tubal ligations in keeping with prevailing medical standards for the procedure.

3. The Catholic Health Association supported its member hospitals until the bishops extracted an admission that local bishops are the “authoritative interpreter” of permissible Catholic healthcare. The Association’s CEO publicly affirmed absolute power for local bishops to interpret the ERDs (Ethical and Religious Directives for Catholic Healthcare) and even to develop their own if they choose.

4. Last year a bishop in Spain declared the decision to remove food and water from a 90 year-old comatose woman an act of euthanasia. Describing the vegetative states as a chronic illness, he objected to laws allowing the family to follow what they knew to be her wishes.

5. Last June the US Conference of Catholic Bishops met in Seattle, reproached Compassion & Choices by name and denounced aid in dying as an end-of-life choice. Defying logic, the Conference asserted that adding a choice actually restricts choice and creates an illusion of freedom. More to the point of doctrinal enforcement, they called aid in dying “a grave offense against love of self” that breaks the bonds of love with God.

Blocked Expansion

Aggressive enforcement of dogma did not go unnoticed in communities where Catholic Hospitals sought to acquire or merge with secular ones. Entities resulting from unification with a Catholic hospital are always obligated to adhere to Catholic teaching and follow the bishops’ instructions for Catholic healthcare.

1. Two years ago the citizens of Sierra Vista, Arizona demonstrated for months against the proposed takeover of a secular hospital by a Catholic healthcare system, until hospital officials dropped the proposal.

2. Early this year the Attorney General and Governor of Kentucky blocked a bid by Catholic Health Initiatives to merge with publicly funded University Hospital.

Demands of the Marketplace

The enormous significance of these events became evident when Catholic Healthcare West, the fifth largest hospital conglomerate in the nation announced termination of its status as a ministry of the Catholic Church.

Renamed Dignity Healthcare, the 50 hospital system seeks to acquire additional hospitals and triple its size. The CEO readily admits that concerns about Catholic affiliation hampered his ability to grow. At the time he said the change to a nondenominational board would create “a tremendous opportunity that will help accelerate our growth.”

Oregon is the first state Dignity targets for expansion. In a subsequent blog I will examine what this means for end-of-life choice in the town of Ashland, where Dignity seeks to acquire the community hospital.

The clear meaning of Catholic Healthcare West’s transformation to Dignity Health is that “Catholic” is no longer a desirable brand in the marketplace for healthcare partnerships and medical services.

Truer but Fewer

Visiting Ireland in April, I chatted with a Catholic monk as he showed us architectural details of a medieval church. He bemoaned the drastic changes underway as the government wrests control of 95% of the nation’s public schools from the hierarchy of the Church. But he acknowledged the change is necessary as the church has become more conservative and the state more leery of its control. I ventured the opinion that the Vatican’s radical conservatism hardly seems a strategy for long-term growth. “That’s not the point,” he said. “Church leaders value those of ‘truer’ faith,” and they don’t mind that this retains fewer truly faithful adherents.

If the same principle holds for Catholic hospitals in the United States, Americans take heed. Institutions that retain their Catholic affiliation and continue to embrace their ministerial role may be those most entrenched in Catholic moral teaching. Bucking imperatives of the market, they may be most inclined to apply the Ethical and Religious Directives strictly and hew narrowly to services and healthcare decisions the local bishop deems consistent with church doctrine. You can affirm, with our Sectarian Healthcare Directive, that no facility’s dogma should override your end-of-life choices, and I encourage you to do so. Because without vigilance, patients and doctors may have less influence than the bishop over healthcare decisions made inside their hallowed walls.

Bishops’ Actions at Odds With Call for Religious Freedom

U.S. Conference Imposes Catholic Doctrine on Non-Catholics

Atlanta, GA – Compassion & Choices  today called on Catholic
Bishops to acknowledge that their own actions limit religious freedom. The United States
Conference of Catholic Bishops (USCCB) meets this week in Atlanta. The meeting,
according to USCCB press materials, “will include a two-hour floor discussion on domestic
and international religious freedom.”

“It’s ironic the bishops are convening in Georgia to discuss religious freedom,” said Perry
Mitchell, incoming president of Compassion & Choices’ Georgia chapter. “Just weeks ago
the Catholic Conference lobbied the Georgia legislature to outlaw as ‘assisted suicide’
accepted end-of-life medical practices and support for terminally ill patients making
rational, informed decisions. In lobbying government to restrict end-of-life choices, the
bishops are imposing Catholic doctrine on patients and physicians – Catholic and non-
Catholic alike.”

With HB1114, the Georgia legislature originally aimed to outlaw suicide assistance. Yet the
bulk of the bill focuses not on people who aid and abet mentally ill, suicidal individuals, but
on doctors delivering end-of-life care. It repeatedly specifies that any withholding,
withdrawing, prescribing, administering or dispensing of medical services must be solely
intended and calculated to relieve symptoms. Patients are never allowed to make a rational
decision to advance the time of death. The new law gags patients who might express a wish
to die. It makes doctors more vulnerable to accusations of “assisted suicide” merely for
providing treatments that relieve end-of-life suffering. During legislative debate, the
Georgia House speaker even thanked the Catholic Conference for helping to write the bill.

The bishops are working to impose their religious teaching not just in Georgia, but also
across the nation.

The Massachusetts Catholic Conference has announced its opposition to the Death with
Dignity ballot measure before that state’s voters this November, and it plans to mount a
vigorous — and likely expensive — campaign against it.

Through its vast national network of Catholic healthcare facilities, the bishops enforce
Ethical and Religious Directives for Catholic Healthcare (ERDs). The bishops instruct
doctors to ignore advance directives that conflict with Catholic moral teaching (ERD #24),
obligate them — with few exceptions — to provide indefinite tube feeding to patients in
permanent vegetative states (ERD #58), disallow as “euthanasia” a patient’s refusal of
treatment such as kidney dialysis if they intend to advance the time of death (ERD’s #59
and 60), limit dying patients’ knowledge of treatment options to those the bishops consider
“morally legitimate” (ERD #55) and urge employees to offer religious teaching on the
redemptive power of suffering when standard comfort care fails (ERD #61).

With regard to Oregon and Washington’s Death with Dignity Acts, the bishops use the
machinery of Catholic healthcare to violate informed consent principles and withhold
information about aid in dying, a legal end-of-life choice. Catholic hospitals, hospices and
healthcare systems in those states instruct their employees to deprive patients in their care of
comprehensive knowledge of end-of-life choices.

“Over and over we see the bishops confuse the right to exercise their religion with a right to
impose their religion on Americans who don’t share it,” said Barbara Coombs Lee,
president of Compassion & Choices. “This is not a subtle difference.”

Should Doctors Learn to Grieve?

Why is it so difficult for doctors to confront the truth when a patient is dying, and almost impossible for most to talk about it openly with the patient and loved ones?

Last week I shared a hunch. A journalist asked me the question, “Why do doctors find these conversations so hard?” I said I could only speculate. But I would base my guess on decades of practice as a nurse and physician assistant, and watching doctors from the vantage points of those allied professions.

My guess was that doctors are among the people in our society most frightened by death. Their fear reinforces our society’s death taboo. They have not yet learned to live in harmony with mortality, and they don’t know how to grieve. Every dying patient presents another opportunity to deny the inherent role of loss and sadness in every human being’s life story. They act as though awareness of our transience does not define human consciousness, nor form the basis of our common shared humanity. In this way doctors are a bit “inhuman.”

The reporter said, “Wow, that’s really interesting.” Then the conversation ended.

This week comes news that science corroborates my hunch. The scientific study feels like synchronicity, coming so close on the heels of my flight of ideas.

Sunday’s New York Times carried Dr. Leeat Granek’s description of research into whether oncologists grieve when their patients die. She reports her central finding that, “Not only do doctors experience grief, but the professional taboo on the emotion also has negative consequences for the doctors themselves, as well as for the quality of care they provide. “

Dr. Granek’s study reveals that most oncologists suffer from unacknowledged grief, and they experience their sadness all mixed up with feelings of guilt, self-doubt, failure and powerlessness. They keep these feelings to themselves because that is the professional code. As an aside, I’ll mention here that professional approval of suppressed grief almost went to the extreme of labeling demonstrable grief a mental illness. But the panel of psychiatrists updating the DSM (Diagnostic and Statistical Manual of Mental Disorders – the bible of mental illness and its billing codes) bowed to public criticism and reverted to a two-month exception for bereavement in its definition of depression.

Granek’s work found that doctors’ unacknowledged grief comes out in impatience, irritability, emotional exhaustion and inattentiveness. Half the study participants admitted their thwarted grief affects the care of subsequent patients. It motivates them to continue aggressive, fruitless treatments long after palliative care would be more appropriate and to distance themselves from patients as death approaches.

We must draw the stunning and unavoidable conclusion that doctors’ averted grief constitutes an important cause of the deplorable end-of-life care that is America’s norm. Patients receive warrantless treatment through repeated hospitalizations and suffer the inevitable pain, bodily invasion, isolation and loneliness it brings. Perhaps instead of calling for more medical education, we should call for guidance in grief resolution and support for its expression.

When he was 82 my father suffered a fatal heart attack during a minor surgical procedure. After he died, my sister and I brought my mother to the hospital. I have always admired the doctor who came to us in the visitation room, crouched next to my mother’s chair, and wept. He gave my mother a great gift, and even through her creeping dementia, she never forgot it. He didn’t know my father well, but he was willing to feel and reveal his unity with the universal tragedy of losing one who is most dear. “You are not alone,” his tears said to her. “You and I and all human beings who love deeply must also someday bear the pain of loss.”

Grieving openly serves the important function of assuring ourselves and others that it is normal, and temporary, and part of a full and authentic life. Only suppressed grief threatens one’s mental health.
With training and practice, I believe doctors could learn to experience the sadness of a patient’s death, acknowledge it, decouple it from feelings of guilt or inadequacy, and move to the other side of grief. As poet Mary Oliver reminds us, though we must journey through black rivers of loss, the other side is salvation.

Doctors would do well to heed Oliver’s advice:

To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.

When Wishes are Fishes

How do we get doctors to honor our wishes at the end of life? Most recommend preparing an advance directive, and I’m no exception. These documents are not infallible, but they are the best things we’ve got going for us when we can’t speak for ourselves.

However, one popular advance directive could actually subvert your wishes with its stealth anti-choice language. It’s called “Five Wishes.”

There are two general kinds of advance directive. One is called a “health care proxy” or “power of attorney for health care” and it delegates a person to make decisions on your behalf. The other is a “living will,” which specifies your wishes. Anti-choice activists keep tightening the rules of evidence that govern end-of-life decisions, so you need both documents. One names the decision-maker. The other guides the decisions.

Most people use their state-approved advance directive form, and these are the most trouble-free and reliable. But the widespread form called “Five Wishes” should come with a warning label. Why? Because the religious dogma imbedded in it could actually subvert your wishes when the time comes.

In 1997 James Towey started a Florida organization called “Aging with Dignity” and wrote “Five Wishes.” With the help of the Robert Wood Johnson Foundation and others, Five Wishes spread across the country. Aging with Dignity claims more than 15,000 organizations distribute Five Wishes, and most of them probably do not know about the religious slant. Many people now have these on file, instead of their own state forms. Five Wishes is a wonderful form in many ways, but fair warning is in order.

Five Wishes incorporates the religious creed that while it is permissible to take action you know will cause death, it is never permissible to intend death. It’s a subtle concept, but central to certain theology related to the end of life. It carries the name “doctrine of double effect.”

Those of us trained in the law usually assume responsibility covers things we know will result from our actions, in addition to what we intend. “I didn’t intend to break the window” is no defense if I knew the window was closed and chose to throw a baseball to my friend outside anyway.

The double effect dogma can trip you up if you don’t see it coming. Wish Number 2, “My Wish For the Kind of Medical Treatment I Want Or Don’t Want,” includes the general instruction “I do not want anything done or omitted by my doctors or nurses with the intention of taking my life” (italics original).

Then the form goes on to list medical interventions that keep a person alive and allows you to check the box, “I do not want life-support treatment.” Thus it creates internal conflict within the document.

Even if you check the “do not want life-support” box, a hospital or doctor could object that stopping life support would “intend” death and the form you signed expressly prohibits that. What a confusing mess that could create!

The Five Wishes form is simple and easy to use. It avoids the legalese that makes forms written by legislatures so tedious and opaque. It also includes things you might never think to include in your “wishes,” like the wish to be rubbed with warm oils as you die, or be soothed with a cool cloth. Also, Five Wishes wisely includes brain damage (that would include dementia) along with terminal illness and coma, as a condition that triggers your instructions about life-support treatment.

But Towey makes no secret of his desire to spread the tenets of his Catholic faith and encourage others to live by them. When he left Florida to lead faith-based initiatives at the White House he described his goal unabashedly as to “get into heaven.”

My advice — use your own state forms. You can download them free in an editable PDF format, along with instructions and useful additions to the form, at the Compassion & Choices Web site. The new format eases the completion of an advance directive.

If you have already filled out Five Wishes and want to keep it instead of changing to a state form, consider crossing out the part that does not allow an intention to end life. The Five Wishes form itself instructs you to cross out portions you don’t agree with. (That instruction somehow went missing from the stealth anti-choice part.)

You can cross it out anyway. Initial and date the cross-out. Congratulations. You have just transformed a fish back into your own, personal end-of-life wish.

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.