The Dignity Project: Mount Holyoke President, medical ethicist, Lynn Pasquerella: A challenge to idea that death is un-American
Dying is certainly not what it used to be. During my career as a medical ethicist, there has been a remarkable shift in the types of end-of-life cases I have been asked to consult on.
Today, the most common scenarios are like the one described by my family practitioner during a recent visit. While sitting on the examining table, clad in my paper gown, I waited as he finished typing notes in my record.
Without turning around, he said, “Let me ask you something. You are still on the ethics committee aren’t you? My partner has this case, and I’m wondering if the committee might help.” He described an 88-year-old post-stroke victim who was hospitalized repeatedly for congestive heart failure, diabetes, recurring pneumonia, open wounds and staph infections. Each hospitalization involved a three-to-four-week stay. Throughout these stays, the patient was intermittently conscious and incompetent to make decisions for herself. Since she was unable to swallow, she was fed using peripheral intravenous lines.
The patient’s daughter, who would leave her mother’s side only occasionally to sit in her car, insisted that everything be done to keep her mother alive. It was during the latest hospitalization, when a mass was discovered in the patient’s lung, that questions of futility arose. The daughter demanded a biopsy and wanted surgery if the mass turned out to be cancerous. The medical team was convinced that the patient should be allowed to die, yet the daughter was intent on doing everything possible to sustain her mother’s life.
“What’s frustrating,” my doctor confessed, “is that the staff feels like we are torturing this poor woman, but the last time we were able to have the next of kin declared incompetent to make medical decisions, the hospital lawyers insisted that we do everything to keep the patient alive anyway.”
As I was listening, I kept thinking about what a radical departure this case presented from the types of end-of-life issues the ethics committee dealt with when I first began practicing in the mid-1980s. Then, almost all of the scenarios involved patients or their families insisting on the right to refuse life-sustaining treatment in order to “die a natural death with dignity.”
When not to resuscitate?
One of the most compelling cases was brought to us for retrospective analysis. It involved a 60-year-old woman who had been in failing health over the previous two years. Diagnosed with multiple vague symptoms, a final panel of tests revealed terminal liver cancer. When her primary care physician met with her to discuss the diagnosis, he found the patient understandably shaken, but seemingly accepting of her fate.
She made plans for the eventuality of her death by signing a living will, expressing her wishes to have life-sustaining treatment withheld if the burdens of treatment were likely to outweigh the benefits. She made clear that she did not want to be resuscitated if death were imminent and she suffered cardiac arrest.
A copy of the patient’s advance directive was on file in her doctor’s office and in the emergency room when she was brought in by ambulance the day after she met with her doctor. Her husband discovered her in bed, unconscious and blood soaked, after swallowing a bottle of tranquilizers and cutting her wrists with a butcher’s knife.
The family physician, who happened to be on call in the emergency room when his patient was brought in, was the one who brought the case to us. He had known this patient for years and was absolutely convinced that she would not want to be resuscitated. In fact, he was concerned that if she survived, she would have him charged with battery for going against her wishes by trying to save her life.
On the other hand, he was cognizant that if he failed to treat her aggressively, he could be charged with assisted suicide, which is a felony in the state in which this occurred. He thought it might be in his patient’s best interest if he did nothing, since she likely had no good days ahead of her.
In the end, however, he knew that living wills were not binding in responding to acts of attempted suicide and took the steps necessary to try to save her life. He performed CPR when she went into cardiac arrest, had her intubated, and stitched her up.
As he suspected, when his patient regained consciousness, she was furious. She tried to rip out the tubes and demanded that all treatment be stopped. A psychiatric consult was brought in to assess the patient’s competency; she was deemed competent to refuse treatment, was extubated, and died six hours later.
Though at first he thought he’d done the right thing under the circumstances, the physician regretted his part in prolonging his patient’s suffering. In this case, he thought prolonged existence might actually bring about more harm than would death. Moreover, he wondered whether a law allowing for physician-assisted suicide would have given this woman the assurance she needed that she would not be forced to suffer needlessly if death were imminent — assurance that may have prevented her from ever having taken the steps to actively end her own life, with or without the assistance of another.
As in the previous case, moral distress arose from the fact that the doctor believed in order to meet his obligation to his patient based on a professional duty to both nonmaleficence (to do no harm) and to beneficence (to relieve suffering), he would have to go against his own self-interest in violating a legal code.
Questions for policymakers
In weighing his self-interest against the interest of another, he was forced to come to grips, not only with his patient’s, but with his own humanity. It was perhaps acknowledging the commonality of experience that enabled the physician to engage in a consideration of this case from a variety of perspectives, including a feminist perspective, when we were discussing it in the committee.
He came to understand how imbalances of power that are based on gender play themselves out in medical practice and in the theory surrounding that practice. As a result, he became aware that the patient’s autonomy needed to be considered in the broader context of a society in which women are conditioned to be caregivers and may be psychologically pressured into choosing death rather than risk being an economic or emotional burden on family members.
Side by side, these cases illustrate the type of radical change that has emerged as ethics committees grapple with end-of-life issues. Yet, while there has been a movement away from cases involving the right to refuse life-sustaining treatment toward those centering on futility, in both instances the moral distress results from a common source.
We live in a society in which technological advancements have preceded thoughtful reflection regarding the ethical, legal and social implications of the use of that technology with respect to when and how patients should be allowed to die.
In the future, Americans will not be able to continue to avoid the ethical and policy issues inextricably linked to the use of medical technology.
Thus, questions that policymakers need to address in an open discussion include:
■ How should we as a society allocate scarce medical resources?
■ Can individualism be excessive in matters of life and death?
■ How can we balance the values of pluralism and tolerance on the one hand against principles of fairness to all on the other?
■ Most importantly, should our society continue to view death as a failure and, thus, distinctly un-American?
In order to meaningfully address these questions, we need to confront two emerging trends in medicine. The first is the tendency toward interpreting patients’ autonomy rights as including the right to demand whatever treatment is necessary for sustained existence. The second is responding to such cases with a liability-driven ethic. These trends are not only interrelated, they are rooted in and bolstered by a deep-seated proclivity in American society to want to avert death at all costs and to avoid any open discussion of death.
Two concrete steps might facilitate a culture shift. First, institutional structures and policies must support physicians by recognizing and allowing the time to engage in these critical conversations.
Setting up a patient care conference with the relevant decision makers, reviewing the diagnosis, prognosis and treatment options, creating the right tone for discussion, attending to the feelings of those involved, taking a values inventory, talking about living wills and a durable power of attorney, constructing a plan for follow-up conversations, and building consensus among various constituencies is extremely time-intensive.
My pulmonologist tells me that for over 95 percent of the patients referred to him with end-stage lung disease, he is the first to bring up issues of end-of-life care. Still, he is willing to risk being scolded by some administrator down the line because he lives by the principles underlying Francis Peabody’s message to students at Harvard in his 1925 address on “The Care of the Patient” that “The secret of the care of the patient is in caring for the patient.”
Second, we need to change the way we talk about death. Replacing phrases such as “Do Not Resuscitate” with “Allow Natural Death” and “Full Code” with “Artificial Death Extension” can allay people’s fears that they will be allowed to die if they have an advance directive indicating something other than “do everything possible to prolong life.”
Nevertheless, despite what takes place in medical schools and in the corridors of hospitals, hospices and nursing homes, these efforts must extend to community conversations at the grass roots level if they are ever to take hold.
This is where bioethicists can play a crucial role by serving as public intellectuals, conducting workshops with community members around end-of-life decision making.
The community context is key. When I taught at the Brown Medical School, I used my friend Al Killilea’s book, “The Politics of Being Mortal.” One of the most important points he makes in his work is that it is not death we fear as much as it is, he writes, “annihilation and the absurdity of a meaningless life.”
For him, it is only through a recognition and acceptance of human interdependence that meaning can be given to both death and life. And, it is only through greater candor about death that the anxieties and fears of citizens will be lessened and meaningful dialogue will ensue.
Indeed, until we are willing to have a national conversation about the impact of a more open treatment of death on issues of social justice, the very kind fostered by the Gazette, I suspect that many of my doctor’s visits will continue to serve as ethics consults. For health care providers are likely to experience ever-increasing moral distress over how to abide by the Hippocratic Oath’s enjoinder to first do no harm in a society in which death continues to be viewed as patently un-American.
Lynn Pasquerella is the president of Mount Holyoke College.