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Oh, Freedom

4:03 pm in Uncategorized by BarbaraCoombsLee

Michael Morgan, founder and Executive Director of the African American Music Foundation, visited my church this week to celebrate Black History Month. During morning service his thrilling bass voice highlighted an inspiring memorial to Paul Robeson. That afternoon he delivered a recital and lecture on spirituals to an overflow crowd.

I’ve been humming these spirituals and mulling their words ever since. Mr. Morgan is charismatic and riveting and he adores spirituals. As he explained, this is not only African American music. It is American music — never composed, but arising organically from the depths of human experience and longing.

Often beginning in woe but always ending in joy, the words of spirituals express struggles against injustice, oppression and the sadness of mortality. So many of them, like “Swing Low Sweet Chariot” and “I Stood on the River of Jordan,” give voice to our hopes and fears in the face of death. They arch beyond American slavery to express hard truths about the burdens every human bears and how we cope.

 

Oh, Freedom

Freedom, oh freedom,

Oh freedom over me

 

And before I’d be a slave

I’ll be buried in my grave

And go home to my Lord and be free

 

No more moaning, no more moaning,

No more moaning over me

 

And before I’d be a slave

I’ll be buried in my grave

And go home to my Lord and be free

 

There’ll be singin’, there’ll be singin’,

There’ll be singin’ over me

 

And before I’d be a slave

I’ll be buried in my grave

And go home to my Lord and be free

 

That song is about all kinds of slavery, Mr. Morgan said. “Think about it. There’s a whole lot of things you can be slave to in your life.”

Indeed there are.

Increasingly, people feel in jeopardy of being slaves to medical technology and an imperative to apply all that is available. As awareness grows, people grow leery of the assumption they would choose to eke out every second of mortal existence, even as terminal disease ravages the body and suffering exceeds the ability to bear it.  Often slavish devotion to prolongation of life means only prolongation of suffering.

In his book, Facing Death, my friend Reverend Paul Smith reminded us that death is not the worst thing that can happen to a person.  When we act as though it IS the worst thing, we can fall victim to much worse.

Choices mean freedom. Freedom from all that may be worse than being “buried in my grave.”

Sierra Vista Chooses Community Over Catholicism

9:10 am in Uncategorized by BarbaraCoombsLee

Last week Sierra Vista Hospital, in rural Southeast Arizona, abandoned its affiliation with the Catholic Carondelet Health Systems. One year into a 2-year trial period, reality apparently hit home. The hospital board could no longer ignore daily picketing by concerned citizens, growing discontent of physicians barred from delivering high quality medical care and mounting evidence that strict doctrinal enforcement undermines a community’s trust in its medical provider. An informative PBS story (see the bottom of this post for the video) 4 days prior may have influenced board members as well.

Compassion & Choices supporters were especially concerned that end-of-life wishes be heeded and honored. Thus, we enthusiastically join Cochise Citizens for Patient Choice in celebrating this victory for quality care and patient self-determination. I hope this signals the start of a trend among hospitals to avoid mergers binding them to religious doctrine.

Over the last century Catholic institutions grew, prospered and assumed an ever greater market share in the healthcare industry. Today more than 600 Catholic hospitals deliver care to 1 in 6 patients in the United States each year. Since 1971 these hospitals have followed written doctrinal direction from the National Conference of Catholic Bishops, which in turn follows the Vatican.

A publication called Ethical and Religious Directives for Catholic Healthcare (ERD) lays it all out. Until recently hospitals could interpret the ERD according to their own conscience, and they usually found ways to meet the needs and expectations of their communities. But the local bishop is final decision-maker and an increasingly conservative hierarchy is flexing its doctrinal muscle across the nation. This leaves hospitals with a stark choice: buckle under pressure from Catholic authority or break the shackles of Vatican oversight.

The tension plays out in different ways.

Last May Bishop Olmstead of Phoenix terminated the church’s 116-year relationship with St. Joseph’s Hospital for terminating a woman’s pregnancy to save her life. The hospital, its parent corporation, Catholic Healthcare West, and the Catholic Health Association all backed the decision of Sister Margaret McBride, who led the hospital’s ethics committee. Now she is excommunicated, Mass no longer occurs in the hospital chapel, and the community knows its hospital will not allow Bishop Olmstead to obstruct a life-saving procedure.

Similarly, St. Charles hospital in Bend, Oregon, refused to accede to demands from Bishop Robert Vasa to stop performing tubal ligations for women seeking to limit their pregnancies. Founded by nuns 92 years ago, St. Charles is no longer a Catholic health center and delivers about 250 tubal ligation services per year.

But in Texas, Bishop Alvara Carrada stopped tubal ligations at St. Michael’s and Trinity Mother Frances Hospital in 2009. Now women who give birth there by caesarean section must endure the risks and inconvenience of a second surgery, at a different facility, to have their tubes tied. Exposing patients to unnecessary surgical risk falls below the standard of care in every community.
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Who Failed the American People?

11:17 am in Uncategorized by BarbaraCoombsLee

The federal government once again has decided not to help seniors with advance care planning. On Wednesday, the Obama administration announced it is dropping a Medicare provision reimbursing doctors for talking with their patients about end-of-life planning. People have been calling for the reimbursement policy for years – not only advocates of better care and choice at the end of life, like Compassion & Choices – but hospice workers, geriatricians, palliative care experts, public health in end-of-life planning and politicians of both major parties.

Every respected authority recognizes incentives for doctors to learn their patients’ preferences make it more likely patients will get the care they want. Most important, seniors who are ready to plan seriously for how they hope to spend their final days want this provision. Family members who might otherwise find themselves making unguided decisions for loved ones unable to speak for themselves would also benefit

Why then did the administration drop the provision, just days after it took effect? The explanation was that the process of publishing the regulation was not by the book, but certainly politics played a part. This common-sense measure has been the center of controversy for over a year and a half. The whole spectacle highlights how our political process can fail miserably to promote the public good.

Experts, advocates, seniors and families are understandably disappointed. We may all wonder where to direct our frustration and place responsibility. Should we blame opponents of health insurance reform, who cynically distorted the facts about advance planning conversations to stoke fear? Is the media responsible, for endlessly repeating the sensational claims about “death panels” – even now – long after they are proven false? Should we deplore that politicians’ own efforts to avoid the subject of death and deter conversations about the provision, ironically ignited more controversy and accusations of stealthy tactics? What are we to do when our leaders in government appear to back down to bullies?

I believe it is better to direct our energy toward solutions: solutions that we, individually and collectively, can bring about outside the political process. A change in Medicare policy is still a worthy goal, but we cannot patiently wait for our broken politics to mend. The result would be too many dying in circumstances of unnecessary torture; too many families struggling to make decisions in crisis.

Medicare beneficiaries can still have a conversation with their doctors about advance care planning. In fact every American – or at least those who anticipate that some day they may die – should have this conversation. The point of an advance directive, after all, is to prepare for difficult circumstances that could precede our deaths.

If you become unable to make or communicate health care decisions, having talked with your doctor and your loved ones, appointed a representative and prepared a written record of your wishes will be invaluable. If the process seems daunting, visit our Good to Go page. You can find help and ideas in our Good to Go Resource Guide and get everything you need free in our Good to Go Toolkit.

When the political fails, the personal can still succeed. You can make it happen. Initiate the conversation. Protect your family from a potential struggle over decisions about life-sustaining treatment.

For more information about end-of-life planning, visit Compassion & Choices’ Good to Go page.

Bishops vs. Patients’ Rights

8:50 am in Uncategorized by BarbaraCoombsLee

I have written how recent changes to Ethical and Religious Directive (ERD) Number 58 compel Catholic hospitals and nursing homes to either disregard your end-of-life choices or violate the letter of the Directive.

The powerful Catholic Health Association says Compassion & Choices and I are exaggerating; the change is insignificant.

To bolster its claim of “no change” CHA points to another Directive, Number 59, that the free and informed judgment of patients should always be respected. What CHA fails to note is the condition at the end of that sentence, “unless contrary to Catholic moral teaching.”

But, one might ask, what exactly does that mean? How broad is that caveat? Who decides – doctor, bioethicist, Bishop? What sort of request, expressed in a living will, may not be honored in a Catholic hospital or nursing home, even before the recent change in ERD 58?

Picture this situation:

My mom received an Alzheimer’s diagnosis when she was just 59, and we both had a pretty good idea what lay ahead. Not far from my home northwest of Chicago is a fine long-term care facility with a wing dedicated to patients with Alzheimer’s.

My mom has been there ten years. She has been well cared for, getting the day-to-day support I couldn’t give on my own. Even as I have watched and grieved her drifting away, I am grateful for the time we have had together over those ten years.

Then she lost her appetite and her ability to feed herself. It’s hard for her even to swallow. Two days ago her care coordinator asked me about a feeding tube. I knew what Mom would choose. My family was supportive. I told the care coordinator Mom wouldn’t want a feeding tube in this condition and I took another little step down that slow path of grief.

But the care coordinator wants me to meet with their chaplain before making a decision. She says my mom is not actively dying and there’s no indication that she wouldn’t tolerate a feeding tube. Will I have to find another facility and arrange a transfer to honor what I know would be my mother’s wishes?

The recent change to the ERD sets out some narrow exceptions when artificial nutrition and hydration (ANH) is not obligatory: if a patient is actively dying; if the tube causes serious side effects like infection; if the patient’s body cannot assimilate the food and water.

But, “My loved one doesn’t want to eat and can’t swallow. I don’t want to force them to stay alive.”— will that justify an exception?
Here’s another scenario:

The phone rings. It’s the assisted living facility’s care supervisor; my father collapsed just after dinner. “The EMTs are taking him to Mercy Hospital.” An hour later I am driving down Baltimore Pike into southwest Philadelphia.

I find my father in the ICU. Hooked up to all the tubes and equipment he looks so much older than a week ago. Over the next day and a half of tests and waiting – learning it’s a stroke – he doesn’t wake or stir. I’m sitting with him mid-morning when the neurologist arrives. He goes over results and treatments they’ve tried. “It’s unlikely that your father will regain consciousness, and if he did, very unlikely that he would return to normal mental function. We need to think about next steps.”

My father designated me his health care proxy for a moment like this. His advance directive is clear, and he’s been blunt in conversation. “Look, I’m eighty-three years old, and I’ve had all the breaks. If something happens, I don’t want to sit in a chair and drool for years.”

I make an appointment to see the social worker in her office, where we’re joined by a priest. I tell them we’re ready to remove life support. She turns to the priest. He says, “Mercy Hospital is committed to honoring advance directives for health care decisions as long as they do not contradict Catholic principles,” The priest has a copy of my father’s advance directive and reads from it. “If I am ever consistently and permanently unable to communicate, swallow food and water safely, care for myself and recognize my family and other people, and it is very unlikely that my condition will substantially improve, I would want to die rather than have life-sustaining treatments.”

The priest looks up. “Your father’s living will suggests that in his unconscious state his life is no longer worth living. Under these conditions, removing life support would be an act of euthanasia by omission.”

Catholic bioethical thought has evolved over centuries. The ERDs that govern care in Catholic hospitals and nursing homes are extremely nuanced. Your directions about life support may or may not be honored in a Catholic institution. Your concern about the burdens of medical interventions might justify forgoing life-sustaining medical treatment. But a wish to be allowed to die under certain circumstances might not.

Have you talked with your family about end-of-life options? Good.

Is an advance directive in place? Excellent!

Will that directive be honored in a Catholic health care facility? We cannot know for sure.

An Idea Whose Time Has Come

1:36 pm in Uncategorized by BarbaraCoombsLee

Sometimes a movement’s opposition is its best friend. And an opposition commentator is the first to tell the world transformative social change is underway.

A recent National Review cover story warns of a dangerously potent cultural shift. It seems Americans are moving out of frank denial and blind fear of death into a position of empowerment and choice in our end-of-life experiences. This is a bad thing, from National Review’s perspective.

The article bemoans a “creeping culture” of suicide and euthanasia. Of course those are their inflammatory words to describe the emerging culture. Our words would be that a culture of dignity, human liberty and personal choice is finally gaining ground.

On the way to arguing against us, the National Review makes some keenly perceptive observations. First, the author acknowledges our movement has “come a long way” in twenty years, and credits Compassion & Choices as the “premier advocacy group” to make that happen. He deplores that today members of “the social and political elite” readily voice their support. And he opines that when they do this “as openly as they would with charities like the United Way, we have reached a new cultural moment.”

Hooray for that! I, too, sense that human mortality is no longer the political third rail it used to be. For all the “death panel” hysteria this August and September, those charges never did really get any traction. And the fear monger politicians peddling “kill granny” hyperbole have joined those who embarrassed themselves a few years ago by elbowing their way into the Schiavo family tragedy. They just look silly, opportunistic and mean.

The author also acknowledges our movement’s recent successes and calls 2008 a “banner year.” Finally, he writes that as individuals, we are “passionately committed, work hard, and feel time is on [our] side.” All true, and we are truly grateful for the praise!

As one might expect, the writer opposes personal choice in most important life decisions. A believer in intelligent design, he opposes contraception, stem cell research and choice in dying. The vigor of his opposition highlights the power of end-of-life choice to move society to a new level of respect for personal autonomy and human dignity. His intense focus tags our movement, with Compassion & Choices in the lead, as an especially potent force for liberty.

Social progress takes concerted, sustained effort. For fifty years individuals and foundations concentrated on the key issues of civil rights, equality for women and reproductive choice, to promote human dignity and liberty. Equal opportunity for women and minorities, together with reproductive freedom, were the dominant fields of battle for twentieth century struggles around human dignity, individual autonomy and self determination. Now, at the dawn of the twenty-first century, new battle lines are drawn between patients who struggle for control over unnecessary suffering at the end of life and authoritarians who would keep control elsewhere.

The opposing forces remain essentially unchanged from last century to this. Individuals asserting their own values and beliefs seek control over important decisions in their lives, especially healthcare decisions. Dogmatic churches, autocratic institutions and authoritarian politicians fight to limit individual authority over self.

Who decides if a couple can purchase birth control devices? The most powerful church in the world wants to decide, and, until 1965, enlisted states to enforce bans on contraceptives.

Who decides whether people may opt for treatments developed through stem cell research? Right-to-life organizations decide and enlist Congress to keep federal money away from scientific breakthroughs.

Who decides whether dying patients may ask their doctors to help them experience a humane and peaceful death? The American Medical Association decides, and uses its formidable political power to pressure lawmakers into ignoring the will of the people.

End of life choice is the human liberty movement of the twenty-first century. This is the arena where dignity and liberty stride forward today. People who care about core principles of justice and human dignity feel drawn to this movement. The struggle for end-of-life choices is a movement whose time has come.

“ No army can withstand the strength of an idea whose time has come..”
- Victor Hugo.