End-of-Life Choice, Palliative Care and Counseling

Posts Taggedautonomy

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.

United, as Women and for Women

Yesterday was the 101st annual International Women’s Day. In some countries this Day holds the same stature as Mother’s Day and celebrates women’s economic, political and social achievements. More or less concurrently, proposals landed in Congress and in states around the nation to excuse insurance plans and religious employers from birth control coverage if they have moral objections. That a day to honor women should fall amidst a political action so harmful to women – attacking something so basic and benign as contraception – demonstrates the inequities women still suffer even here in America, even now in 2012.

The crass and inaccurate rants that ensued should sound familiar. Arguments to deny women the right to choose what is suitable for their lives are interchangeable with the pious condemnations of terminally ill individuals’ right to choose what is suitable for their deaths. Targeting women is still easy and a sexual context lends an emotional charge to assaults on basic healthcare. But don’t be fooled. In any of these attacks, you can easily substitute “patients” for “women” and “suicidal” for “promiscuous.” Yes, this disrespect for a woman’s personal liberty masks what is in fact a disregard for the healthcare autonomy of all of us. The dictators of morality are no more respectful of end-of-life choice than they are of reproductive choice.

The burden of defending end-of-life choice falls more heavily on women, as we tend to live longer ourselves, and act as the caregivers and decision-makers for others who go before us.
We, as women and for women, must work together to secure the right to control our healthcare, make our own end-of-life choices, and let no one decide for us how much we or our loved ones should suffer. This effort needs information, organization and strategy to succeed. We’ve designed our upcoming conference in Chicago this June – Heights of Compassion, Bridges to Choice – to address issues of personal planning, personal activism and community advocacy.

Our conference can help you ensure your own end-of-life wishes are followed, deliver tools to empower your family and community for their protection, and reveal opportunities to help secure the full range of options for all Americans and future generations. Come take the power with effective tools to battle the forces that would limit our liberty. Let’s unify to create a single vibrant voice that speaks for the vast majority of Americans against the noisy few. Yes, we’ve come a long way; but clearly we’ve still some distance to go.

The Newest Star of Human Liberty

Human liberty isn’t just a single light on our horizon, but more like stars in a constellation. Each freedom achieved, each choice secured, each dignity acknowledged, helps shape the whole, and the light of each emerges in its own time.

Who decides if a dying patient can ask their doctor to help them to a humane and peaceful death? Today Compassion & Choices as well as our opponents on the other side of this question recognize the stars are aligned to make it an emerging focal point in the struggle for liberty.

Why this question? Why now? Because new technology, cultural and economic shifts and rising expectations create needs and opportunities in the development of any social movement. Sometimes dramatic events precipitate a change. Fifty years ago death came with speed and certainty. Today it more often drags its victims down in a long, agonized process of decreased function and increased suffering.

Fighting for their country in World War II, many black Americans experienced acceptance and responsibility in the military they lacked at home. At the same time the spread of agricultural mechanization offered fewer jobs for those without a high school education. Businesses found racial intolerance made their companies less attractive as investments. Conditions were ripe to consider the question: Who decides if race defines opportunities? When Rosa Parks refused to relinquish her seat on a Montgomery bus she helped ignite the movement that brought desegregation.

Who decides if married couples may use birth control? For years, state legislatures decided, the Catholic Church supported them and few questioned those authorities. But conditions changed. Women who held jobs during World War II were expected to return to domestic pursuits after its close, but in the 1950′s a rising number wanted to hold successful careers and achieve equality.

Economic, cultural and technological changes empowered women to push for reproductive choice, and in 1965 the U.S. Supreme Court decided Griswold v. Connecticut, finding that a state’s ban on contraceptives violated the right to marital privacy. To some, a woman in control of her own fertility threatened family and society. Reproductive choice made a lot of people very uncomfortable. Pushing past that discomfort, the majority of Americans came to recognize the right of couples themselves to decide on intimate, personal matters free from government intrusion.

Today, a new medical reality defines the border of acceptable autonomy. Remarkable advances in medical technology have prolonged the dying process and spurred questions about how and where we die. Gradually, a cultural shift is making discussions of death more acceptable in America. The demographic leviathan of the Baby Boomer Generation, whose attention was once on reproduction, increasingly confronts issues around their mortality. And in 2005, when Michael Schiavo asked who decides if his wife Terri should be allowed to die with dignity, Americans recoiled in horror as politicians tried to establish their right to override state courts and make end-of-life decisions.

The newest star in the constellation of autonomy and personal freedom emerges at the edge of life. Its light will shine fully when we establish the right of all terminally ill, mentally competent adults to control their last days. Securing the liberty to access medication one may choose to ingest to achieve a peaceful death establishes the over-riding principle that end-of-life decisions reside with patients themselves, not doctors, not politicians and not the government or religious leaders.

Local and national politicians may be uncomfortable publicly supporting this principle, but that’s expected. Social movements gain strength from the recognition that established powers are incapable of adapting to changing social needs and expectations.

Discomfort alone should not control laws. A 1986 Supreme Court case, Bowers v. Hardwick, upheld Georgia law against certain sex acts between consenting and loving adults. Justice Harry Blackmun dissented, citing “the rights of those whose choices upset the majority.” He wrote, “No matter how uncomfortable a certain group may make the majority of this Court, we have held that ‘[m]ere public intolerance or animosity cannot constitutionally justify the deprivation of a person’s physical liberty.’”  In 2003, Justice Blackmun’s logic prevailed, and Bowers v. Hardwick became obsolete.

Compassion & Choices serves people facing death and protects their choices: to accept offered treatment or not; to focus treatment primarily on the quantity of life or its quality; to die at home, in hospice or at the hospital. In Oregon, Washington and Montana they also have the legal choice – and only a small minority access it – to ask their doctor for medication to bring about a peaceful death. The next great human liberty battle is to establish the right of every American to exercise such choices, the intimate, personal end-of-life choices that seem to make so many people uncomfortable.

Who decides if a dying patient can ask their doctor to help them to a humane and peaceful death? As never before, that is a question that galvanizes American opinion. That is the question emerging as the brightest star on society’s horizon. Compassion and Choices works not only for those facing the end of life, but for all those who chart the path of social progress by the constellation of human liberty.