Andrew Solomon: Liberty and the Right to Die in America

Andrew Solomon’s new book, Far From the Tree: Parents, Children, and the Search for Identity, is out Nov. 13; he won the National Book Award for his last book, The Noonday Demon: An Atlas of Depression.

I should begin by admitting to my bias. When my mother contracted ovarian cancer at 56, she was very clear that she wanted to be able to depart the world with dignity. One of her best friends had died of cancer, screaming in a hospital bed, and my mother would not be doing the same thing. On the appointed day, my father, my brother and I all joined her in her room as she took a lethal dose of Seconal. It was the hardest day of my life. I nonetheless believe it was the right decision — right for her and for us all. She valued control and she valued coherence, and she died as she had lived, with elegance.

I think our society is very confused about liberty. I don’t think it makes sense to force women to carry children they don’t want, and I don’t think it makes sense to prevent people who wish to die from doing so. I feel there should be notice boards reminding everyone that the right to physician aid in dying is not a spreading infection that will afflict those who deplore it. Just as my marrying my husband doesn’t damage the marriages of straight people, so people who end their lives with assistance do not threaten the lives or decisions of other people. Opponents of the right to die often express as outrage what they appear to experience as anxiety; they can express as moral rigor what is in fact merely fear.

The Suicide Plan does an excellent job of portraying the lived nobility of people who help relatives and friends to die; the ambivalence that clings to this as to all major decisions; the immense love that is needed for the final letting go. It also limns darker matters: that people may seek suicide for “the wrong reasons”; that people who spend their lives helping others to die are frequently creepy and are sometimes on their own peculiar power trip; that everything turns sordid when access to lethal medications is restricted. It accomplishes a great deal.

It leaves out, however, a crucial group, who seem not to be in the film even by inference: the vast number of people who would like aid in dying and have no access to it, who live in agonizing pain and see no relief in sight. There is an idea that if we don’t allow aid in dying, we are protecting people from the possibility of harm, and there is reason to believe that. But in our rage to protect the next Jana Van Voorhis, for example, we subject people — far more people in my own view — to gratuitous agony. There is harm associated with loosening restrictions, but there is also harm associated with keeping them in place.

If I get to a place of terminal pain, I hope those around me will allow me to exit with dignity. I’m my mother’s son, and the apple doesn’t fall far from the tree.

Ira Byock: Why Assisted Suicide is No Realm for Physicians

Ira Byock is the director of palliative care at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and author of The Best Care Possible: A Physician’s Quest To Transform Care Through the End of Life.

The Suicide Plan provides an unblinking look into a world that few of us could imagine. I thought the program would explore the issues that surround physician-assisted suicide, but within moments I realized that FRONTLINE had opened a door into an even darker phenomenon.

Proponents of legalizing physician-assisted suicide often contend that there is no evidence that acceptance of lethal prescriptions will lead to abuses or devalue the life of disabled, frail, or mentally ill people. This documentary shows that slippery slope toward death on demand is being actively paved by groups such as Compassion & Choices and the Final Exit Network.

The leaders of these organizations may be well intended, but they hold a profoundly different worldview and understanding of society from my own. The admonition against killing other people is the bedrock of civilization. Our earliest ancestors decided to collaborate, protecting and looking after one another as an alternative to competition and individual conflict over resources. An obligation to protect and care for one another is an integral part of social compacts. You will not find a “right to die” in the Magna Carta, Declaration of Independence or Constitution. Instead, society exists in service of life, liberty and the pursuit of happiness.

As a physician who has cared for people with serious illness for more than 30 years, it was particularly distressing to hear fellow physicians advance a pro-death agenda. From its very inception, the profession of medicine has formally prohibited its members from using their special knowledge to cause death or harm to others. This was – and is – a necessary protection so that the power of medicine is not used against vulnerable people. The profession has reinforced this proscription throughout the arc of human history – through wars, famines, economic depressions, and political upheavals. The Nazi doctors are condemned to ignominy. Jack Kevorkian was convicted of murder. The profession has reaffirmed the principle that doctors are not supposed to kill patients. They are also prohibited from using their expertise to torture prisoners – even when ordered to do so by civil or military authorities – and doctors are not allowed to participate in executions, even of convicted murderers.

I would not presume to judge the completed suicide of any terminally ill person. But there is a clear distinction between suicide and assisted suicide – particularly physician-assisted suicide. Our primary role in society is to protect and preserve life, while recognizing that our care extends to people who are facing the natural end of life. As a palliative medicine specialist, I know from years of experience that it is possible to alleviate pain and other physical suffering and enable patients to die gently. Physicians who remain confused about the difference between killing a patient and allowing a patient to die should not be practicing medicine.

As the program ended, I found myself hoping that The Suicide Plan would provoke outrage while recognizing that many viewers will applaud the fact that assistance with suicide is becoming readily available. For me, that realization is the most distressing of all.

Soo Borson: Confronting the End with an Unsound Mind

Soo Borson is a professor of psychiatry and behavioral sciences and psychosocial and community health nursing at the University of Washington.

Twenty-two years ago, Janet Adkins, a 54-year-old woman newly diagnosed with Alzheimer’s Disease, became Dr. Jack Kevorkian’s first public assisted suicide. There was considerable outcry from physicians who saw her as she was at the time — a vital, athletic, engaged woman with mild dementia — for whom life had lost neither its savor nor its “quality.” Adkins, as she conveyed in a final explanatory note, chose not to subject herself or her family to the years of inevitable decline into total dependency and indignity that so often occurs with neurodegenerative dementias, failing death by other means — the particular fate of those who develop disease in midlife when their bodies are still robust and their family relationships lively. Adkins felt she knew what was coming and wanted none of it, but had to decide when she was still capable of choice. In Alzheimer’s Disease, the capacity for this kind of choice is lost long before patients reach the terminal phases of disease.

As a specialist in dementia, I’ve become all too familiar with the challenges facing people like Adkins and like George Brodigan from The Suicide Plan, patients who have diseases that will rob them of autonomy long before their bodies are ready to die. Brodigan, an elderly widower, chose to end his life with Alzheimer’s Disease four years after his diagnosis, and did so with the support and loving care of his sons. Brodigan had “late-onset” Alzheimer’s Disease, the most common form of neurodegenerative dementia. Because it affects older people, late-onset Alzheimer’s seems less tragic than young-onset cases like Janet Adkins’. Having witnessed others’ suffering with this disease and having lived a long and good life — though a lonely one since his wife’s death — he, like Adkins, was still capable of choosing the time of his death.

Existing laws in the two states that permit physician assisted suicide require that patients have a terminal illness, be of sound mind (competent to make decisions), and be expected to die within six months of their request. No one with Alzheimer’s Disease and related disorders can qualify under these laws: the problem is with the requirement of decisional capacity within six months of a natural death. Many patients have spoken with me about their wish to avoid the debilitating stages of advanced Alzheimer’s Disease. Our conversations inevitably touch on what makes life worth living for each of them — and what would constitute a life that to them no longer has value or meaning. Both fear and grief walk alongside us as we talk, and so do puzzlement and indecision. Most of us have trouble imagining so far in advance what we would have to lose before we, in our present state of mind, would judge our future, deeply demented selves, no longer desirous of living. At the same time, families of very demented patients often tell me: “If he only knew how he’s living now, he would never agree to this.”

How can we engage a new kind of public conversation about choosing the time and mode of death that accommodates the reality of Alzheimer’s Disease and other neuropsychiatric illnesses? Such a conversation must address new elements we rarely need to think about when death is coming soon because of, say, incurable cancer. Though Alzheimer’s surely kills, it does so very, very slowly and often after years of profound distress for the patient and mental and moral anguish for the family. We need a discourse that speaks to the anticipated, long delayed, purposeless, and much feared future suffering that comes when we are “here,” but no longer “us.” Jana, in the film, did not have Alzheimer’s, but her life was marked by years of intractable mental illness; by definition, she was not “of sound mind” but was likely not legally incompetent to decide to end it. As best we learn, she knew that her future would be much like her past and she didn’t want it. Both kinds of cases are currently outside the provisions of the laws that govern assisted suicide.

As our society continues the debate around assisted suicide, here is what I’d like to see:

First, a long, deep, and intimate look at what matters to us as individuals: What makes life worth living to you, to me? How do life experiences change the way we value various elements of our lives, and can we predict the direction and stability of these changes? Can we form stable “valuation cliffs” for our own lives that hold true over long periods of time? And how do those who love us come to know what we would have wanted when we never said and can no longer say?

Secondly — while everyone who thinks of seeking aid in dying is a “special case,” with and for whom decisions must be individualized within the framework of existing law — we also need new categories that allow us to describe and think about the many ways that people die a “natural” death, especially those who linger long in hopeless states of incomprehension and all too often intractable fear.

We also need better safeguards. When it comes to incurable degenerative conditions that degrade the personality for years before they kill, the safeguards built in to existing law do not apply: decisional capacity when aid in dying is requested; having a life expectancy of six months or less, as determined by two physicians; and two requests, one oral and one written separated by at least 15 days, with two witnesses, for medication to hasten death.

What safeguards might be substituted in Alzheimer’s Disease and similar situations? First, advance directives, completed when an individual is still competent to decide, should allow a provision for assisted suicide when the patient’s own “value threshold” for life has been crossed. This means that we need a way to define that threshold and to be confident that it is stable over time — something we don’t yet know how to do, either as individuals or as a moral community.

A second safeguard might call for documentation, over a period of time, of thoughtful discussions with a personal physician who knows and cares for the patient and the family.

Next, someone other than the patient would need to request termination of the life; this would usually be a member of the immediate family.

Fourth, perhaps more than two physicians should be asked to adjudicate whether a patient has become eligible for aid in dying, based on her or his current condition relative to the values she or he articulated when still of sound mind. Delays and opportunity to reconsider would offer further protection.

All these safeguards could mitigate the moral hazard stemming from what Pauline Boss calls the problem of ambiguous loss. This important concept denotes the uncertainty caregivers face in gauging who and what is left of identity in a person whose self is undermined by brain failure. Physicians and families would do well to bring this notion into their conversations on behalf of the patients they care for.

Finally, there must be a willingness for us — as a society, through our private conversations and public media, and through advocacy groups — to have an open dialogue with people who are living with Alzheimer’s Disease and need the rest of us to listen to what they will want for themselves when they are past wanting.

David Orentlicher: How We Die Vs. Why We Want To Die

David Orentlicher teaches law and medicine at Indiana University, where he is also co-director of the William S. and Christine S. Hall Center for Law and Health. Previously, he served as director of the Division of Medical Ethics at the American Medical Association.

In its portrayal of underground aid in dying (or assisted suicide), The Suicide Plan teaches us that what really matters is not how a person chooses to die but why the person wants to die. The law may distinguish among methods of hastening death, but our moral intuitions distinguish among reasons for hastening death.

Legal rules commonly draw a distinction between “passive” and “active” measures that can shorten one’s life. Patients may die by refusing ventilators, dialysis or other life-sustaining medical treatment. Outside of a few states, however, they may not die by taking a lethal dose of medication.

But distinguishing between passive and active measures misses the moral mark. Consider the contrast between the deaths of two women in the documentary, Joan Butterstein and Jana Van Voorhis. It is easy to respect the people who helped Butterstein end her life by ingesting prescription medication. Joan was terminally ill from incurable lung cancer, had seen her first husband suffer from efforts to prolong his life and had thought carefully for months about her options. It also is easy to condemn those who helped Van Voorhis end her life by inhaling helium gas. Jana was not dying. Rather, because of mental illness, she harbored false beliefs about her health. For most people, Butterstein had good reasons for choosing death, while Van Voorhis did not.

And most people would come to the same conclusion if the two women had died by the passive measure of refusing life-sustaining treatment. We would understand if Butterstein became unable to breathe on her own and declined mechanical ventilation. However, we would not think it acceptable if after developing pneumonia, Van Voorhis declined antibiotics because of her false beliefs about her health.

If public morality would view Butterstein’s death as permissible, why does the law generally prohibit people like her from choosing aid in dying? It does so not because the public thinks it wrong for them to end their lives. Rather, the public worries that if it permits aid in dying, the practice will not be reserved for patients like Butterstein. Rather, there might be many people like Van Voorhis who would end their lives too.

Can we recognize the interests of all people, whether they are like Butterstein or Van Voorhis? When we compare the experience with legalized aid in dying in Oregon and Washington with the experience elsewhere with underground aid in dying, the case for a limited right to aid in dying seems persuasive. In Oregon and Washington, aid in dying is permitted for terminally ill persons like Butterstein but prohibited for persons like Van Voorhis who are not terminally ill. Moreover, aid in dying may not be provided unless two physicians confirm that the patient is truly terminally ill and also has the mental capacity necessary to make an informed and considered choice. There is good reason to think that people like Van Voorhis are at greater risk when aid in dying is relegated to the secret and unregulated underground than when it is brought into the open and regulated strictly.

Ben Mattlin: The Dangerous Divide Created By Assisted Suicide

Ben Mattlin, author of Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity.

I was born with an incurable, severe neuromuscular delight called spinal muscular atrophy. It’s similar to muscular dystrophy or Amyotrophic lateral sclerosis (Lou Gehrig’s Disease, which probably should be renamed “Stephen Hawking-itis”). I can’t wash, dress, or feed myself. I have difficulty swallowing and breathing, and wasn’t expected to live to adulthood. Yet I’m nearly 50 years old, a married Harvard graduate and professional writer with two kids.

Nevertheless, when many people first see me, including and perhaps especially doctors, all they see is my ragdoll floppiness and emaciated limbs. Assumptions are made. Prejudices, I call them.

My point is, I could easily convince anyone that suicide is a rational option for me — particularly members of groups like Compassion & Choices and the Final Exit Network. And that scares me. Why shouldn’t I have the same barriers protecting me from moments of suicidal fantasies as everyone else has?

To be clear: My opposition to physician-assisted death doesn’t stem from any religious belief. It comes from my experience as a profoundly disabled person living on the cusp between life and death.

No, I don’t have cancer. And I don’t want to deny anyone a choice. The problem for me is that distinctions about who should and should not be eligible for physician-assisted suicide make for unfair, even dangerous, divisions. Why should it be easier or more acceptable for certain groups to end their lives than it is for others? What does that say about the value we place on those lives?

In other words, if you want to end your life, that’s fine with me. But why on Earth should we as a society rush to make it easier for people with incurable conditions to end their lives before we’ve done all we can to ensure they have the same opportunities and protections as everyone else? Even in their final days, they should feel welcome and valued, not burdensome and desperate. We should provide adequate health care and personal/custodial care. We should support them with sufficient financial resources to secure whatever they need.

Only then can we say that the choice is truly a fair choice. Otherwise — without adequate supports to sustain a worthwhile life, even in its final days — the options are needlessly limited. They are slanted in favor of fear, hopelessness, and ultimately suicide.

Lewis Cohen: Confronting the Taboo Around Death With Dignity

Lewis Cohen is a professor of psychiatry at Tufts University School of Medicine and author of No Good Deed: A Story of Medicine, Murder Accusations, and the Debate over How We Die.

In 2011, Gallup conducted a Values and Beliefs poll that concluded physician-assisted suicide is our country’s most controversial cultural issue. They examined 17 different topics and found that when it came to assisted dying, Americans are almost evenly divided: 48 percent of the population found the issue “morally wrong” while 45 percent believed it to be morally acceptable. By contrast, “ordinary” suicide, or what I, a psychiatrist and palliative care researcher, call “clinical suicide,” occurring among physically healthy and psychiatrically disturbed people, was judged to be morally unacceptable by 80 percent of respondents.

Last week, Gallup’s poll proved prescient when Massachusetts citizens gathered on Election Day to not only re-elect President Obama, but to also weigh in on becoming the third state in the nation, after Oregon and Washington, to have a death with dignity law. In the end, the ballot initiative known as Question 2 failed by a razor-thin margin of 62,000 votes out of nearly 3 million cast. Next up for this debate are Vermont and New Jersey.

One of the fascinating things about The Suicide Plan is the plethora of elderly people it depicts. While watching the training seminar and the trial of the Final Exit Network members, I was vividly reminded of the Gray Panthers, the activist organization that began in 1970 and continues to agitate and protest over health care, the environment, and the war in Afghanistan. It is heartening to see elderly citizens who are committed and determined to continue changing the world. Whether or not you agree with the actions of the Final Exit Network, it seems surreal for law enforcement to be using the RICO Act­­– the federal anti-racketeering law originally enacted to prosecute the mafia and organized crime syndicates — against a volunteer group of 80- and 90-year-olds.

Through my research on palliative care, I’ve come to know several remarkable patients who suffer despite our best efforts to care for them.  Medication such as morphine can help the terminally ill manage pain, but it can’t ameliorate their agony at no longer being the same people that they were before the illness.

Similarly, in my work as a psychiatrist I’ve encountered families who have been devastated by suicide. Yet I’ve also encountered families that have been uplifted by the “final exit” of a loved one.

I was one of the initial founders of the Massachusetts Death With Dignity ballot initiative. Before ever studying this subject, I always imagined myself as emotionally prepared to help a family member or patient to hasten death if they were terminally ill and suffering. I thought that it was all right to keep such decisions private. The more I’ve researched the issue, though, the more I’ve come to believe that this practice should no longer remain a transaction shrouded in secrecy.

Nowadays, I still would like to help the people who are dear to me, but I am more appreciative of the risk, and this is underscored by The Suicide Plan. I no longer think that these should remain confidential matters ungoverned by legislation without explicit built-in safeguards. It is time that we confront the taboo of death with dignity and openly debate the legitimacy of our laws around the issue and the actions of groups like Compassion and Choices and the Final Exit Network. I anticipate that this episode of FRONTLINE will, as it did for me, stimulate others to question their own initial reactions to this highly emotional, life and death topic.