AMERICA'S UNPARALLELED MEDICAL PROWESS has made us the envy of the world. But our strides in medical treatment and technology have presented us with a terrible dilemma, as well. Because our doctors, nurses, and hospitals—with their advanced training, complex procedures, and sophisticated equipment—can now rescue people from death in so many cases, we seem to believe they can perform this miracle in every case. Our optimism has obscured the need to improve care for people who cannot be rescued. They need services that ease their pain, relieve their symptoms, comfort their spirit, support their loved ones, and instill in their family the hope of a peaceful death. These services may be provided to patients in hospitals, but are just as necessary for people being cared for at home, in nursing homes, and in other settings.

One hundred, fifty, even thirty years ago, we were more realistic. Death might be feared, it might be a tragedy, it might be a blessing. But we recognized it as an inescapable part of life.

Today, care of a critically ill patient in the hospital often is best characterized with imagery from the battlefield, with death the enemy to be vanquished. Just as in a shooting war, communications are chaotic. Sometimes patients and families heed the battle cry when doctors and nurses know the war is lost; sometimes the medical team mounts an assault when the family would surrender. In the worst cases, an array of machines and procedures separate patients from their loved ones, subject them to treatments that are futile or of marginal value, undermine their dignity and autonomy, and cause them to spend their last days trapped in a mechanical nightmare from which there is no awakening.

This is the mental picture of a mechanical death that most of us fear. It isn’t the only—or even the most likely—scenario, however. Changing patterns of hospitalization mean more of us now die in nursing homes or at home than in the hospital. What kind of care do we receive in these settings? Does the nursing home provide sufficient pain and symptom control? Do families have enough help? Are we tending to patients’ bodies, minds and spirits, or do they feel abandoned?

No doubt in every individual case we—the medical professionals, the family, and even the patient—think we are following the course that offers the most benefit. We may think we are doing what would have been wanted, if the patient is not able to tell us. Too often, we have never discussed with our families or with our physicians how we feel about "heroic measures" or end-of-life issues generally, and a medical emergency is an almost impossible time to start. Many elderly Americans—men and women—have no family with whom to discuss such things, even if they wish to.

Unless we have had such conversations, the advance directives that some of us have signed usually do not help. They rarely address the decisions relevant to the medical circumstances or emotional state in which we actually find ourselves near the end of life. A great many of us will be in a coma, or confused, or in severe emotional distress. Just when our families most need to ask us questions, just when they need a deeper understanding of our wishes, they can’t obtain it. And they cannot know what we would or would not want done without such discussions. Cultural and religious background influences our choices. So do past experiences and specific circumstances. One of us might do anything to survive a little longer to see a first grandchild, while another might want to do nothing that would drain the meager family purse. Often we pick up cues from the health professionals and others around us, because we don’t have any fixed preference.

If the patient and family cannot give guidance, physicians must turn to their own beliefs and consciences and to the standards of care that prevail within their hospital or other facility. These policies vary, and administrators can receive poor advice from their attorneys regarding end-of-life services. This is true even for issues that already have been decided by the courts, such as when treatment may be withdrawn. Recent federal circuit court decisions approving physician-assisted suicide, instead of merely making things easier for those few who want such a procedure, actually cloud the issue of withdrawing treatment—something that potentially affects a much larger group of us.

Other recent trends and events confuse the situation further. The advent of managed care and competition among insurance plans makes us wonder about the care we will receive if we become critically ill or injured. We want reassurance that the decisions about our care will keep our welfare—not the health plan’s bottom line—uppermost. In theory, managed care could end some of the fragmentation in the system and make it easier to obtain the array of services we are likely to need, were we critically ill. But will it? For some time, surveys of Americans have suggested that we are dissatisfied with end-of-life care as we have seen and experienced it in our families and with friends and neighbors. The dignity of the deaths of Jacqueline Onassis, who chose to die at home, and Richard Nixon, who died in the hospital but without aggressive treatment, struck a responsive chord in many of us.

The overriding need to change the kind of care dying Americans receive was driven home by the results of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), the largest study of its kind ever undertaken. The eight-year study involved nearly 10,000 critically ill patients in five leading medical institutions. Funded by The Robert Wood Johnson Foundation, the study found that efforts to prolong life too often merely prolonged dying. Almost 40 percent of the study patients spent at least 10 days in intensive care, where aggressive treatment is the norm. More disturbing, pain was common: half the patients able to communicate in their last three days of life had serious pain, their families said.

The study also graphically documented the discrepancies between patients’ desires—as expressed to the researchers—and their actual treatment. One of the problems was inadequate communication between medical professionals and patients. On one hand, physicians did not always clearly convey patients’ chances for survival or understand patients’ wishes; on the other, patients and families tended not to discuss dying until someone was just days—or hours—from death.

Almost half of the physicians in the study did not know their patients’ preference was not to be resuscitated. Many other patients and their families failed to plan in advance for terminal episodes, even though the patient was known to be very seriously ill: for example, 46 percent of do-not-resuscitate orders were not written until a day or two before death.

A second phase of the study revealed even more disturbing findings. The researchers designed a special intervention using nurses to facilitate communication between patients and health care professionals, provide more accurate assessments of how long a terminally ill patient might live, and provide the patient and family with a means of expressing their wishes regarding treatment—including pain control and heroic measures such as resuscitation.

Despite the diligence of the nurses and other members of the health care team, the intervention failed to change the circumstances of death. For example, the amount of time patients spent in the intensive care unit before dying was unchanged, and reports of pain did not decrease. About a third of the families lost most or all of their savings caring for the patient.

SUPPORT confirmed the worst fears of many Americans. Correcting our course without abandoning the benefits of modern medicine will require new partnerships among patients, families, and providers. It must involve the entire spectrum of the health care delivery system, from doctors and nurses to bioethicists; from hospital and hospice administrators to insurance executives. But the health sector cannot do the job alone. Consumer and religious organizations, advocacy groups and policy makers—all must recognize their important roles. Together, we must seek creative new approaches to improving care at the end of life.

A national leadership conference was held on March 12, 1996, called "Last Acts: Care and Caring at the End of Life." This conference brought together 140 leaders from important health care, advocacy and interest groups. Their common link was a commitment to improving the care of dying Americans.

Presentations in the conference’s morning sessions arrived at a broad consensus that the status quo is not acceptable, and, although the problem is daunting, it is not hopeless. There are pockets of success. The participants’ afternoon discussions were structured around the following broad themes:

improving communication and decision-making;
changing health care and health care institutions; and
changing American culture and attitudes towards death.
These themes emerged from an essay by Daniel Callahan, PhD, in a special supplement to the Hastings Center Report of November-December 1995, commissioned by the Foundation in response to the unexpected and striking results of SUPPORT.

What follows are the three key themes, the challenges associated with each, and opportunities for meeting these challenges, as identified by participants in the leadership conference. The list is evolving, as organizations and communities continue to discuss the issues and develop creative approaches to meet their needs.


Challenges and Opportunities

Next Steps — An Invitation

Conference Participants