End-of-Life Choice, Palliative Care and Counseling

Patient-Centered Principles

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.

The Schiavo Case Seven Years Later

New Messaging From Politicians

Sometimes progress toward human dignity seems agonizingly slow, especially affirming the role of choice at the end of life. So it’s heartening when evidence of seismic change shows up. Last week’s presidential debate lifted our hearts for this reason.

Contenders for the Republican nomination were in Tampa, and questioners brought up Terri Schiavo. Mrs. Schiavo, you’ll recall, had been in a permanent vegetative state for fifteen years in 2005, when the family’s conflict over whether she would want continued artificial feeding rocked the state of Florida and riveted the nation. State courts had already ruled repeatedly and consistently that the tube feeding should be discontinued, consistent with her expressed wishes prior to the event that rendered her insensate.

Politicians in Florida and Washington, D.C., were convinced voters wanted them to intervene in the tragic deliberations of the divided family. Procedural manipulations and governmental excesses stoked a spectacle of controversy for years. The litany of hearings, re-hearings and appeals is too long to recite here. Toward the end Congress went to extraordinary lengths to override Florida state courts. They issued a subpoena for the vegetative Mrs. Schiavo to appear at a hearing and passed a special law to override jurisdiction of the state, placing the case back in the federal court that had repeatedly deferred to its state counterpart. All the lawmakers believed in states’ rights, of course.

Senator Frist, a cardiac surgeon, assessed Mrs. Schiavo’s neurological function from the Senate floor via a short video clip of her head movements. Posturing, sanctimonious politicians of all stripes declared their devotion to life and their outrage that a feeding tube could be considered futile medical treatment.

On March 20, 2005, the New York Times front page reported, “Congress Ready to Approve Bill in Schiavo Case,” and detailed the fervor that had seized that august body. Mine was a lone voice of alarm in the article. “‘In this political climate, with this kind of thing going on in Congress, everyone must take steps to protect themselves — making an advance directive, documenting their wishes, making sure their loved ones know about them,’ said Barbara Coombs Lee, CEO of Compassion & Choices. … ‘The greatest fear of our constituents is that other people — complete strangers — will make end-of-life decisions for them,’ Ms. Lee added. ‘And God forbid that it would be politicians.’”

I’ve always been proud of that quote. Because as it turned out, most of the nation agreed with me. Congress did pass the bill, in the middle of the night on Palm Sunday, and President Bush flew overnight from Texas in his jammies to sign it 30 minutes later. Nevertheless, federal courts followed the law, refrained from intervening, and Schiavo died peacefully March 31st.

One month later Harris polled Americans on how they viewed the Schiavo debacle. Congress fared worst, with 58% of respondents saying they disapproved of Congress’s behavior. Only 35% approved. Florida lawmakers fared almost as badly, with 57% disapproval, 33% approval. The president and governor came off little better.

In May 2005 The New York Times Magazine published an in-depth profile of Rick Santorum. It reported that Santorum was one of the lead senators urging federal intervention in the Terri Schiavo case. He told the author that he informed Bill Frist, the majority leader, that he (Santorum) would keep the Senate in session through its Easter break if lawmakers tried to adjourn without first intruding in the Schiavo case. Santorum is quoted, ”I said to the leader: ‘We’re not leaving here until we pass this.’”

Fast-forward to last month’s debate in Tampa. The political calculation has changed drastically in seven years, and Santorum backs away substantially from his enthusiasm of 2005. In Tampa he asserted that he “did not call for congressional intervention.” Rather, “I called for judicial intervention on behalf of the parents.”

Oh, I see the difference! But after 7 years, 14 appeals, 5 federal lawsuits and 3 denials from the U.S. Supreme Court, only an Act of Congress could have prolonged the courtroom circus any further. That is what Santorum fought for, and that is what the people judged unseemly meddling. In contrast, last month Santorum even affirmed the morality of refusing resuscitative efforts, adding, “I think that’s a decision that people should be able to make.”

Santorum’s fellow debaters chimed in with updated political messaging. Newt Gingrich went so far as to say the whole Schiavo controversy “has nothing to do with whether or not you as a citizen have a right to have your own end-of-life prescription, which is totally appropriate for you to do as a matter of your values in consultation with your doctor.” It’s anybody’s guess whether Gingrich really supports the medical practice of aid in dying; but on its face, his statement would resonate with the 70% of Americans who do.

Ron Paul said the Schiavo case was “way out of proportion” and he would have preferred to see the decision made at the state level, which, of course, is where it was ultimately made.

I don’t pull up this history to accuse politicians of insincerity or point out inconsistencies. I just want folks to notice that our nation has changed, and expectations of our politicians have changed when it comes to end-of-life decisions.

Seven years ago it was different. But today we expect politicians to stay out of the personal end-of-life choices we make, in consultation with our physicians and consistent with our own beliefs and values. We expect the people we elect to show some respect for the heartbreaking decisions families make every day at the bedsides of their loved ones. Politicians should not limit those choices arbitrarily and should never seek to impose their own moral judgment on complex deliberations in a religiously diverse nation.

Do Doctors Die Like the Rest of Us?

In November Dr. Ken Murray published a blog on Zocalo Public Square called “How Doctors Die.” It’s been reverberating through the Web ever since, prompting a continuous stream of comments and inspiring others to offer their own essays and input.

What struck a chord was the assertion that doctors with terminal illness often reject the long-shot technology that traps other people in cycles of hospitalizations, surgeries, procedures and chemicals, and ensures their final days will be in intensive-care lockdown. Do the same doctors who personally reject such misery recommend miserable, intrusive, painful, toxic and inhumane treatments for their patients? We can’t be sure. Dr. Murray provides no scientific studies. But he does speak of doctors who took a pass on miraculous cancer treatments, such as might “triple” the five-year survival rate. Even tripled, patients who opt for the treatment gain only a 15% chance of reaching that milestone, at great sacrifice in quality of life.

All this makes sense. Doctors are scientists, after all. They know the physical burden of intense treatments, and they know the odds are long against curing, or even lengthening life with cancers like lung, liver and pancreas. They know little has changed in cancer cure rates over the last 40 years, with the exception of childhood leukemia. And they know cancer therapy can make a person very sick and even cause the patient’s death. Bone marrow transplants, for example, have a 25% – 30% mortality rate from the treatment itself.

Dr. Murray also offered stories of regular patients, nonphysicians, who answered the siren call of medical technology only to die in misery, probably no later than they otherwise would have. This is the typical pattern of end-of-life care in America.

It reminds me of the stunning Frontline documentary about a New York stem cell transplant unit that aired in November 2010. The show included disturbing footage of specialists in this cutting-edge field, not so much cajoling their patients to accept extraordinary medical assault as communicating in behavior and attitude that there really is no other choice. To my astonishment and horror, two doctors asserted that dying patients owe it to society to suffer the agony of treatment and die under intensive care because “that is often what drives medicine forward and leads to discovery.”

The thought that these very doctors would play the odds, decline futile or invasive long-shot therapy, relax into palliative care and die at home seems an affront. Many of the comments to Dr. Murray’s blog come from the healthcare tribe — doctors, nurses, biomedical researchers — people who believe they too would refuse the treatments they regularly deliver to their patients. More than a few say their growing reluctance to inflict unnecessary suffering was the reason they left intensive care or hospital medicine.

When it comes to aid in dying (providing life-ending medication upon the request of a terminally ill, mentally competent adult) evidence suggests most doctors do want that choice for themselves. A 1997 survey of oncologists found about half could imagine a situation in which they would want assisted dying for themselves. Yet almost 7% of those could not imagine a situation in which assisted dying would be acceptable for their patients. In 2001 Dr. Linda Ganzini surveyed Oregon doctors about the state’s Death with Dignity law. She found 51% of Oregon doctors supported the new law and 53% would consider aid in dying for themselves if they were terminally ill.

I’ve always referred to that 7% and 2% as the “reverse golden rule” doctors. Withhold from others what you would desire for yourself.

But maybe that’s not as offensive as doctors who promote tough treatments to their patients that they would never accept for themselves. I’d call that the “perverse golden rule.” Urge others to endure horrific treatments you would reject for yourself.

I fully understand how complex and heart-wrenching treatment decisions can be. In differing circumstances I’ve both pleaded for and against heroic therapies for a person I loved. Yet I believe the time will come, and in the not-too-distant future, that most people see “do everything” medicine for what it is: Hardly the privilege of an elite population in a rich nation, it is rather a perverse imperative of science and technology unchecked by compassion or common sense. The truly privileged elite see this, and more often choose to die quietly in their own beds when the end of life inevitably approaches.

Good News From Kentucky!

2011 closed with good news out of Kentucky. On Friday Governor Steve Beshear refused to approve a Louisville hospital merger that threatened patient choice. Compassion & Choices, MergerWatch, the National Women’s Law Center and other national advocacy organizations joined local activists to raise constitutional and public policy questions regarding potential threats to end-of-life and reproductive care. In announcing his decision, Gov. Beshear noted “significant legal and policy concerns.”

Religious doctrine limits patient choice in over 600 of our nation’s hospitals, nursing homes and HMOs. When a Catholic healthcare institution merges with a non-sectarian one, the Ethical and Religious Directives for Healthcare (ERDs) invariably control care provided by the merged entity. Compassion & Choices is committed to joining patient rights advocates to oppose the imposition of religious restrictions wherever the threat arises.

This proposal ceded control of Louisville’s only public hospital to a Catholic healthcare company (St. Joseph Health System), and placed healthcare decisions in the hands of the local bishop and the United States Conference of Catholic Bishops. We applaud Governor Beshear for exercising good stewardship and ensuring that University Hospital (UNL) serves the public interest and needs for future generations of Kentucky citizens. “If this merger were allowed to happen,” Beshear said, “UNL and the public would have only indirect and minority influence over the new statewide network’s affairs and its use of public assets.”

Despite assurances from architects of the merger, loss of public influence in healthcare could have disastrous consequences for the people who depend on publicly funded healthcare. The people could never again rely on their public institution to place the highest priority on community needs. The ERDs that govern Catholic healthcare enforce Catholic doctrine. Staff and administrators must balance that doctrine, when possible, with community needs. Some options remain forbidden, no matter how great or pressing the need may be. This balance can leave the community with uncertain and unpredictable service.

A doctor at St. Joseph Hospital – a defender of St. Joseph’s Catholic identity – wrote of the confusing and contradictory statements made by hospital officials:

An Oct. 24 (Louisville) Courier-Journal article noted that on June 14, U of L Dean Halperin, “made a promise that we’ll respect the ERDs of the Catholic Church,” and on June 30, University Hospital CEO James Taylor stated, “we’ve also made the commitment that by joining the network with (SJHS) … we will adhere to the ERDs.”

Now that a merger might be imminent, a different stance has surfaced. The merger partners state in an Oct. 19 Metro Board of Health (BOH) release that University Hospital “will not become a Catholic hospital and will not be required to follow the ERDs.”

The Courier-Journal calls this “legal mumbo-jumbo.” Nonetheless, University Hospital spokesman David McArthur would not concede that it was a position change, but “an evolution of our explanation.”

Without governing authority, UNL and the citizens it serves could be forever tossed like a kite upon the changing winds of “evolving explanations” and changes in Church policy. In recent decades, the Vatican has become more conservative and U.S. bishops have required stricter obedience from Catholic healthcare institutions. No one can predict how Catholic doctrine or enforcement may change in the future, and once a public institution is lost, its accountability to the public welfare is lost forever.

So we welcome the new year with a celebration of effective community advocacy and a toast to elected officials who act in the public interest. Kentucky Reps. Mary Lou Marzian and Tom Burch helped inform the governor of advocates’ concerns and urged him to stand up for all Kentucky residents and their right to comprehensive healthcare.

We remain watchful. Announcing his decision, the governor said “… I have determined that this proposed transaction is not in the best interest of the commonwealth …” The emphasis was his. Compassion & Choices will resist any proposal – in Kentucky or elsewhere – that fails to safeguard patient rights to a full range of end-of-life healthcare choices