End-of-Life Choice, Palliative Care and Counseling

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Dear Abby Opens Day One Of The First National Conference

National Syndicated advice columnist Dear Abby kicked off the Compassion & Choices first national conference today with an amazing opening plenary session, The Common Sense Approach to End-Of-Life Choice.

Abby’s emotional and heartfelt presentation touched on her own experiences with dying family members and the importance of advance directives, “My brother had an advance directive, had an advocate, and was able to die a peaceful death,” she said.

She also spoke about the need for each person to make their own decision, according to their own values. “There’s a big difference in thinking you know what’s right for everyone else,” she said, “and passing laws that tell other people how they can die.”  Abby went on to express her belief in the need for choice at the end of life.

Following Abby’s presentation, the first breakout sessions got underway. The Good To Go panel featured Compassion & Choices end of life counseling staff discussing legal options for a peaceful death in every state.  A superb panel of some of the nation’s most knowledgeable lobbying experts informed attendees about the best ways to engage elected officials.  C&C President Barbara Coombs Lee and C&C Government Affairs Director Theresa Connor spoke as well on how we gauge success in the end-of-life movement.

From panels on legislation to demystifying hospice to fiding the best way to talk about end-of-life choice, today’s conference events were an incredible educational experience. And we’re just getting started.

Catholic Healthcare West Becomes Dignity Health

Expansion in Oregon Tests whether it’s a Distinction without a Difference

As I previously blogged, the Catholic hospital brand is no longer desirable in the marketplace for mergers and acquisitions of healthcare entities.

This realization led Catholic Healthcare West, the nation’s fifth largest healthcare conglomerate, to give up its status as a ministry of the Catholic Church. In doing so the corporation exempted itself from obedience to the Ethical and Religious Directives for Catholic Healthcare (ERDs) and released its secular hospitals from control by their local bishops. Local bishops and the ERDs still define permitted services in its 25 Catholic hospitals.

The corporation changed its name to Dignity Health, revamped its board of directors and replaced the ERDs with a “Statement of Common Values” to set the ethical framework and define permissible care. Though not entirely secular (the Values Statement still refers to employees as “the hands and heart of the ministry), Dignity is clearly not Catholic when it comes to reproductive health. The Common Values statement precludes abortion and in vitro fertilization, but is silent on tubal ligation and vasectomy.

When it comes to services at the end of life, Dignity does little to release patients from the chains of Catholic doctrine. The Statement pays lip service to patients’ rights to make medical decisions, execute advance directives and name surrogate-decision makers. Then it goes on to address the crux of the matter — withholding or withdrawing life-sustaining treatment, and allowing the legal choice of aid in dying.

At first glance Dignity Health’s policy on life-sustaining treatment may seem balanced and patient-centered:

There is no obligation to begin or continue treatment, even life-sustaining treatment, if from the patient’s perspective it is an excessive burden or offers no reasonable hope of benefit. Death is a sacred part of life’s journey; we will intentionally neither hasten nor delay it.

Let’s put aside the obvious absurdity that a whole hospital system would vow not to intentionally delay death! That’s their primary job, no? And I trust if I arrived at a Dignity Health facility, injured and bleeding, they would do everything in their power to delay my death!

It appears that in their haste to disavow any participation in an intended death, drafters of Common Values inadvertently applied the mantra of the Catholic hospice industry to an entire healthcare system, including emergency rooms and surgery suites. Perhaps they can fix that in the next edition.

Retaining Catholic Doctrine Around Intention

I have written at length about the Catholic Doctrine of Double Effect and the disservice it pays dying patients. It allows death to come only as an untended consequence of treatment to relieve pain and other symptoms and never as the intended purpose of an act or omission. Any act or omission intended to cause death is labeled “euthanasia” in the ERDs and strictly forbidden.

The ban on purposeful dying gags patients who might otherwise express a yearning to complete a prolonged dying process. It tempts doctors to hold back on opiates as pain and breathlessness escalate during active dying, because they fear being accused of intending the impending death and practicing euthanasia.

A host of alternatives for peaceful dying are considered ethical and legal in every state. They include discontinuation of treatments like renal dialysis, ventilation and feeding tubes, deactivation of implanted pacemakers and defibrillators, and provision of treatments like palliative sedation and drugs to prevent air hunger and ease the dying process during ventilator discontinuation.

Under Dignity Health’s restrictions regarding “intention” patients and their doctors are allowed these legal alternatives only if they disavow any purpose to abbreviate the period of suffering and advance the time of death. Patients must ask in code to be “relieved of the burden of cardiac pacing” instead of asking to stop the pacemaker so the heart will slow, because the patient wishes to die.

Test Case in Ashland, Oregon

Dignity Health’s expansion plans target Oregon and its first acquisition is the community hospital in the city of Ashland. Officials at Dignity and Ashland Community Hospital (ACH) are working out details of the acquisition, but the Ashland City Council must approve the deal, because it involves leasing public lands.

ACH CEO Mark Marchetti has said since ACH never provided aid in dying on its premises, its function in relation to the state’s Death with Dignity Act will not change. We’re not so sure, and believe the City Council and Ashland residents deserve some assurances.

It matters little whether hospitals allow patients to take life-ending medication on their premises, because people don’t choose to die in a hospital anyway. Wanting to die at home is one of the big motivators for people gaining eligibility for aid in dying in Oregon. But access does depend on a host of patient-provider interactions that precede a patient exercising their rights under the law. Catholic entities in Oregon forbid these interactions, and it’s important to ensure ACH will not start doing the same.

We have asked ACH officials to assure Ashland residents in writing that the institution resulting from negotiations between ACH and Dignity Health will:

  1. Retain a neutral stance toward aid in dying and will not penalize, discharge or reduce services for patients who gain eligibility for aid in dying;
  2. Do nothing to prevent, deter or punish employees who provide patients with information about accessing aid in dying under the Oregon Death with Dignity Act.
  3. Permit its staff and contracted physicians to answer patients’ questions about aid in dying and refer requesting patients to knowledgeable and supportive resources to pursue their request;
  4. Allow employed, contract physicians and physicians with hospital privileges to discuss aid in dying upon a patient’s request and fulfill duties such as medical history review, consultation and reporting required by the Death with Dignity Act on its hospital premises and medical offices.

This week, ACH responded positively — in writing — to our request for assurances. The Ashland City Council should put the ACH response on record and make their approval contingent on those promises. Only then can the residents of Ashland have confidence that Dignity Health’s involvement in their community will not deprive them of rights and privileges they have held for fifteen years.

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.

Marriage Equality Won’t Help!

by Matthew Nelson
Vice Chair, Compassion & Choices Board of Directors

Marriage equality is all the rage. The president is for it. The legislatures in Washington and Maryland are for it. Even the Reagan- and Bush-appointed judges are for it. (And let me be clear: I’m for it.) But it won’t help!

When it comes to ensuring equal rights at the end-of-life, marriage equality won’t help — not completely.

I live in the District of Columbia, work in Virginia and go to church in Maryland. My husband of 19 years and I are legally recognized as a couple in the District (we were civil-unionized but didn’t re-up when marriage became available since it didn’t change any of the legal rights and responsibilities). But if I were in an accident in Virginia and taken to the nearest hospital, my husband would no longer have the rights and protections the District affords us as a couple.

Even if marriage equality became the law of the land across the United States, it is not enough. Yes, you as a husband or wife to your partner would legally have the right to make decisions. But the reality of our society and its prejudices will compromise your decision-making. You may be asked to prove that you are married, that you have a legal right to make decisions or that the decisions you make are actually what your spouse wants. The time it takes to prove your relationship could be the time needed to save your spouse’s life or quality of life. You need to have a plan. Having intentional conversations and a plan is a must for every person and couple, but especially for lesbian and gay couples. At Compassion & Choices, having that plan in place is what we call being Good to Go; our material includes a specific section for the lesbian, gay, bisexual, transgender and queer community.

Whether you are married, single, partnered or dating, you need to think about “What if?”

What if I were in a car accident and had a traumatic brain injury? What if my partner were diagnosed with cancer and given six months or less to live? What if my family has a history of dementia?

Planning for the end of life is never easy, but you can’t know when you or your loved ones might be faced with such decisions, so do it now before you are in an untenable position. Talk with your doctor. Talk to your family. (Yes, even married couples have to battle with parents and siblings — consider Terri Schiavo.) Consider under what circumstances you are willing to live and when you‘d be willing to stop the heroic measures. For each of us the choices are different, and the decisions change over time and with each circumstance. But that doesn’t mean you shouldn’t plan, think about and have conversations with your doctor and family.

When my father was dying, my parents’ clarity about their end-of-life wishes was a gift. The decision to withdraw all life support from my father was not easy, but we were clear it was right. Losing a husband, wife, spouse or partner is never easy. In these difficult circumstances, marriage equality will help make clear who has the right to make decisions. If you had that right and that responsibility, would you be clear what the right decision would be? Plan now so the decision is clear, even if it is not easy.

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.