User Picture

UPDATE Judge Intervenes: Texas Hospital Keeps Pregnant Body Functioning: Where Could This Lead?

By: BarbaraCoombsLee Friday January 24, 2014 11:22 am

Marlise Munoz is dead. She died Nov. 26, probably of a pulmonary embolus, when she was 14 weeks pregnant. But John Peter Smith Hospital in Fort Worth, Texas refuses to turn off the machines and let the family claim the body of their beloved.

A patient in a hospital bed

Is the Munoz case the shape of things to come?

This family is grieving a tragic loss. Their grief is all the more devastating because the firm wishes of their loved one – the woman paramedic, the daughter and wife who knew she never wanted to be maintained in an unconscious state – mean nothing. Texas law says life support may not be withdrawn from a pregnant patient and the hospital chooses to characterize Munoz’s dead body as a patient on life support.

Medical ethicists across the nation call it bad law and erroneous interpretation, but that doesn’t change this outrageous situation.

The woman’s husband, Erick Munoz, is also a paramedic, so he understands his wife is dead because her brain, deprived of oxygen for a prolonged period, generates no electrical activity. He is suing the hospital and hopes the court will order officials to detach the machines and let him bury his wife.

Nearly a dozen other states have similar laws. Texas is also one of 48 states in which hospitals are not required to consult with the family of a brain-dead patient about how and when to terminate treatment.

Unlike many families, Erick and Marlise Munoz had articulated their desired end-of-life options, because as paramedics they had treated patients in these situations. Marlise’s parents are united with Erick in their request that physicians remove the ventilator. Marlise’s values and beliefs, her husband’s decision as her surrogate decision-maker, her parents wish for respectful treatment of their daughter’s body – are all cast aside because she was pregnant when she died.

Pregnancy should not nullify a woman’s autonomy, nor her right to self-determination when she is dying, comatose or in a vegetative state and can’t speak for herself. Nor should any medical condition nullify a patient’s medical treatment choices, or disempower their medical surrogate.

This tragic story holds implications far beyond one family’s nightmare. If institutional decisions can override family decisions and appropriate a body to serve its own purposes or that of the state, then no one is safe from government overreach. In this case the state and the hospital conspire to maintain a body while a fetus develops, theoretically because they have a compelling interest in the fetal life.

If allowed to continue, just think where allowing authoritarian appropriation of a person’s body could take us. The principle of bodily appropriation could be a monumental assault on our freedoms. Statutes similar to the Texas law could have government violate any person’s verbal or written advance directives to serve its own purposes. Advances in modern medicine could lead to cases in which hospitals extend unwanted “life-sustaining treatment” to comatose, vegetative, or dead patients for a range of reasons.

In this case the state’s interest is in a fetus, but perhaps the state could decide it has a compelling interest in the lives of children who need vital organs – hearts, kidneys and lungs. Could the state compel organ donation? If there were no immediate need, could the state even require a family to allow their loved one’s body to be maintained as an organ host until a transplant recipient emerged? If I had a rare blood type, could the state keep my body functioning indefinitely, producing a supply of blood for those who need it? Could my body be turned into an antibody factory if the state deemed it was needed to fight an epidemic? Once we establish the principle that government can put its interest in preserving life above your own bodily integrity and autonomous liberty, the possibilities are endless.

Most Americans believe the strong arm of the government should not be flexing its muscle at the bedside of dying – or dead – patients. Government should not usurp the intimate, personal and wrenching decisions of patients and their families. When I worked in emergency rooms and intensive care units as a nurse and physician assistant, I witnessed families suffer when a loved one dies. Pain is especially severe when the patient is as young as Marlise (33 years old) and the death unexpected. Outside parties only compound this suffering by inserting their own values and beliefs, dictating unwanted treatment and grabbing the power to make decisions from a loving family.

In 1949, George Orwell presciently warned in his famous book 1984 about what would happen to individual rights if our society evolved into a totalitarian state: “ … accept it as a law of nature that the individual is always defeated … ” Orwell hoped that by writing 1984 he would help prevent such a society from becoming reality.

I hope the judge responsible for hearing the Munoz family’s lawsuit today will end this abuse of power and order John Peter Smith Hospital to honor the family’s wishes, remove the ventilator from Marlise Munoz and let the family put her remains to rest. If Texas courts allow this continuing violation of individual liberty and a family’s privacy rights, we may be on the way to Orwell’s nightmare after all.

Barbara Coombs Lee, PA, FNP, JD, is President of Compassion & Choices, the nation’s oldest and largest end-of-life choice advocacy organization.

“Doctor, Please Help me Die”

By: BarbaraCoombsLee Thursday May 16, 2013 10:31 am

Dr. Tom Preston, a Compassion & Choices leader in Seattle, chose these poignant words for the title of his new book. They are powerful words, gripping even on paper. Imagine them emerging from the lips of a patient, perhaps one whom the doctor has treated over decades, who is now dying of cancer. They strike right at the core of a physician’s identity, training and moral compass.

A syringe with a droplet on the needle

How far should doctors be allowed to go to ease the suffering of terminally-ill patients?

Preston knows well that each person, each healer and each caregiver responds to such a request from patient or loved one from the deepest parts of their own authentic being. He begins his book quoting Dumbledore, who in the last Harry Potter book pleaded with Snape to cut his dying short. “You alone know whether it will harm your soul to help an old man avoid pain and humiliation,” the wizard tells his reluctant friend. So it is with every doctor In America.

I recall hearing Dr. Peter Goodwin, Compassion & Choices’ leader and dear friend who died last March, describe how his “blood ran cold” the first time he heard these words. He responded to his patient he could not, but spent the remainder of his life regretting that answer.

Last month Dr. Eric Kress testified to the Montana legislature that when he refused the first patient who asked for his help in dying, the patient reacted in disgust and called him a coward. Thus began his own soulful rumination and his decision not to abandon subsequent patients who asked for his help. “What kind of man am I?” he asked himself. “What kind of doctor am I?”

Preston writes from his long and passionate interest in how doctors respond to this plea. By extension, he is also vitally interested in the historic and potential relationship between the field of Medicine and patients who yearn for choice and control in their dying. Today, it’s mostly a dysfunctional relationship. But it has not always been so, and this book may well help heal the dysfunction.

Preston is a fine writer, and a splendid historian. I greatly enjoy his reaches into ancient Greece and Medicine’s dawn as a profession. In one enlightening chapter he traces the transformation of medical oaths, “From Hippocrates to Lasagna,” to demonstrate how politics, religions and accidents of history influence the words and meanings that endure, even when at odds with ancient precepts or practices. Personally, I’ve always been fascinated to observe that sometime in the course of history the caduceus, symbol of Mercury, god of thieves and business, came to replace the staff of Asclepius, son of Apollo and the first mortal healer, as the symbol of Medicine. (That’s right, the patron god of financial gain stands as the profession’s symbol in modern times.)

Another of Preston’s great contributions is his concentration on “patient-centeredness” as the mark of excellent care. Preston acknowledges that his colleagues may pay lip service to the term, while actually delivering “physician-centered” service. Therefore he takes care to advocate a “meaningful” patient-centered approach. One of the speakers at this year’s TEDMED conference noted that even “patient-centered care” can mean that professionals circle the patient and impose a one-way dialogue.

Non-physician readers will find in Preston’s words the reassurance, courage and tools to approach their doctors with legitimate requests arising from their experience in health and in decline. Physician readers will find compassion and gentle guidance in adopting an open and responsive attitude toward the needs of their dying patients. Physicians across the nation are examining their position on intention and assistance in dying, and this book is bound to help.

Oh, Freedom

By: BarbaraCoombsLee Monday February 25, 2013 4:03 pm

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.”

Potent Breakthrough in Canada

By: BarbaraCoombsLee Thursday January 24, 2013 9:43 am

Last week the government of Quebec announced plans to recognize aid in dying as a legal and protected medical practice in the province. They promise a new law by this summer.

A patient in a hospital bed with an IV.

Quebec wants to legalize and regulate assisted suicide, against the wishes of Canada's federal authorities.

A tremendously exciting announcement, it reveals a seismic shift in the thinking of both medical and political leaders. I cannot overstate the magnitude and power of this shift, and fervently hope America’s medical associations and politicians soon follow suit.

Specifically, the government of Quebec intends to regulate aid in dying in spite of the federal crime of assisting a suicide. As in the U.S., federal laws generally supersede provincial ones, and most people assume laws against assisting a suicide prevent doctors from providing life-ending medication to qualified patients who ask.

Canada’s national spokespeople are irate because they, too, hold this assumption. They respond that Quebec cannot change Canada’s criminal code. Even now federal lawyers are defending the assisted-suicide law against a British Columbia judge’s ruling that it’s unconstitutional as applied to aid in dying. They say federal law defines the crime broadly and they must defend it because parliament has repeatedly rejected reform.

But Quebec disagrees, says it intends to proceed and will stand on firm legal ground when it does. The Quebec government is confident it has the authority to adopt law and policy to meet its citizens’ deep desire for more choices at the end of life. How is this possible?

It is possible because aid in dying is different from assisting suicide. It is as different as a surgery is from a stabbing. One is a crime and the other a careful medical practice. Governments outlaw stabbings, but that doesn’t prevent them from regulating surgeries.

Apparently in Canada’s separation of powers, the federal government defines and prosecutes crime, and the provinces oversee healthcare. Quebec health officials have simply adopted the common-sense view that easing the suffering of a dying patient and ensuring a peaceful and pain-free death is a medical matter, not a criminal one. And as such, it falls under the jurisdiction of the province to regulate the practice of medicine.

For well over a decade Compassion & Choices has argued vigorously for a change from the language of “suicide.” We urge that “Language Matters,” as we call on academics, public officials, journalists and headline writers to employ neutral, accurate words to refer to assisted death. Oregon’s experience informs much of the national dialogue, yet commentators notoriously deploy inflammatory suicide language in what should be neutral public forums. Assisting a suicide is a felony in Oregon; to call medical procedures under Oregon’s Death with Dignity Act “assisted suicide” falsely labels them a crime.

Assisting a suicide – to maliciously goad a mentally ill person to act on his self-destructive impulses – should be understood as a crime. Aid in dying – to mercifully respond to a rational dying person’s request to abbreviate his suffering –should be understood as medical practice. Repeatedly, anti-choice forces have won political contests by blurring this stark and monumental distinction. That tactic just lost its mojo in Quebec.

Here, finally, officials are no longer blind to the distinction between assisted suicide and aid in dying, and they embrace its concrete legal consequences. Here at last comes validation that we have not been merely picking at semantics. Different words evoke different circumstances and different conduct.

Don’t think the blinders fell suddenly. Exhaustive study and deliberation by prominent entities gradually, carefully, broadened the perspectives and changed the formal position of government.

Vote Like Your Future Depends on It

By: BarbaraCoombsLee Wednesday October 31, 2012 8:49 am

This election season is extracting an enormous toll from candidates and citizens alike.

Pressure is always intense in a Presidential year, but this year is different.  Airwaves and Internet hammer away with news of poll after poll, minute campaign details and endless tit for tat. The presidential race, Senate and House races — even local campaigns — all occupy space in national media. Twenty e-mails appear in my inbox by noon each day, all URGENT and all pleading for funds.

The money flow is mind boggling. According to followthemoney.org, state races alone have raised almost $1.2 Billion.  OpenSecrets.org reports that each presidential campaign has raised and spent almost a billion dollars.  And of course, this doesn’t include the biggest spenders of all, the super PACs.

The world watches in wonder and dismay, and my sense is most Americans just want it to be over.  It’s understandable that people might block out the noise and ignore politics altogether in an attempt to restore balance and sanity to their lives. For those ready to run screaming from the computer or TV, sit out the election and withhold their vote, I have two words:

Supreme Court

Politicians come and go, but ultimately the strength of our democracy and the breadth of our freedom depend on these nine lawyers.  Questions of end-of-life choice provide a good measure of the power of these individuals to either invade — or respect — the autonomy and dignity we enjoy as Americans.

  • In 1990 the U.S. Supreme Court ruled that Nancy Cruzan should be relieved of her feeding tube if clear evidence was that she would not want it. It could have ruled otherwise.
  • In 1997 The U.S. Supreme Court let a Ninth Circuit ruling stand, essentially telling litigants from National Right to Life they had no standing to block Oregon’s Death with Dignity Act. (Lee v. Oregon)  Right to Life lawyer James Bopp failed to persuade the Court that Oregon’s law represented a risk or injury to his client.  Yet the Court could have been persuaded otherwise, and our law could have been enjoined forever.
  • Four times in 2005 the U.S. Supreme Court refused to intervene in the Schiavo case. Refusing to grant certiorari, the Court left intact Florida rulings that Terri Schiavo’s husband acted according to her wish not to be maintained in an unconscious state. But it could have ruled otherwise, and stepped in as Congress did to meddle in an intensely private decision.
  • In 2006, with Justices Roberts, Scalia and Thomas dissenting, the U.S. Supreme Court upheld Oregon’s right as a sovereign state to regulate doctors and determine the boundaries of legitimate medical practice. Six Justices Blocked U.S. Attorneys General Ashcroft And Gonzales in their quest to stop Oregon’s Death with Dignity law. It could have been otherwise, and the federal government could easily have usurped state authority over medical use of controlled drugs.  This would have given the party in federal power the ability to intrude in every State’s medical practice standards.

If you are disgusted at the sorry condition of our political contests and tempted to let this Election Day pass without registering a vote, please don’t.  Think on your sacred freedoms and know how fragile they are. Vote as though your future depends on it. It does.

Catholic Healthcare West Becomes Dignity Health

By: BarbaraCoombsLee Wednesday June 27, 2012 11:15 am

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

Medical staff move a patient in an ICU.

Photo: Official U.S. Navy Imagery / Flickr.

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

The Demise of the Catholic Hospital Brand

By: BarbaraCoombsLee Tuesday June 19, 2012 9:45 am

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

An aerial view of the St. Charles Medical Center in Bend, Oregon.

St. Charles Medical Center of Bend, Oregon (Amy Meredith / Flickr)

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

Should Doctors Learn to Grieve?

By: BarbaraCoombsLee Wednesday May 30, 2012 12:52 pm

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?

An army medic in uniform, wearing a stethoscope, checks a soldier's pulse.

US Army Medic. Photo by US Army Medicine.

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.