Physicians and nurses experience death all too often. We recognize the gray hue, the fetid odor, and chill of a body that has been failing for days or months. In hospital halls, we hurriedly pass families as they struggle to deal with the loss of their loved ones. In healthcare there seems to be little time for grief. The drama of one life lost is quickly replaced by another whose life remains to be saved. Likely, each of us remembers tragic, untimely loss of life as well as a merciful, peaceful, and exhausted passing. But because of the pace of the work we do, we may fail to minister to the emotional needs of a patient, their loved ones, or to ourselves as the patient embarks on his last days.
Modern medicine rarely considers the concept of a “good death.” To a physician, the death of a patient is characteristically a medical failure. Logically, we understand that our patients all must eventually die, yet we reject discussions of this outcome with patients with serious and chronic diseases. As clinicians, we are taught to heal, resuscitate, and sustain, and our attention to this focus often delays discussion of alternatives to curative care until the last possible moment. By failing to discuss all clinical outcomes with patients and families, we miss an opportunity to encourage a necessary dialog. In order to improve the quality of technologically-advanced care and even to mature as physicians, however, it requires a more thoughtful examination of what it means to expand the quality of the patient’s days as well as the quantity.
Despite superficial differences, perceptions of death transcend ethnicity, race, and perhaps, species. Many early civilizations saw death as an opportunity to prepare the deceased for the next step in the life cycle. Accordingly the ancient Egyptians often took weeks to prepare the deceased for this journey. The arrangements made ready the body through a sophisticated embalming process and provided the traveler with the earthly possessions necessary for their travels. For royal funerals, a beloved slave was often sacrificed so that the deceased master would not voyage alone. The Chinese buried terra cotta armies with royalty, ostensibly for protection during their everlasting travels. The Vikings sent their dead to Valhalla in burning ships.
Even modern society continues to view the end of the body’s biological function as something more than just the individual’s terminus. We embalm the body and provide the dead a casket. We tell stories, sing hymns, and pray for our loved one’s safe passage to the “other side.” Now as in ancient times, the soul is a traveler to Heaven, Valhalla, or other undefined great beyond. For many, the death of a human represents the final separation of two entities—the finite body and the eternal soul. Almost all religions recognize this dichotomy of body and soul, and neuroscientists believe that this concept may be hardwired into our consciousness. The concordance of behaviors surrounding the death of our loved ones across culture and human history suggests a profound need for the completion of the process in its totality. As physicians, we should develop a more realistic approach to the limitations of modern, technologically-sophisticated medical care and assist patients with planning for what they see as their next journey. Recognition of impending death should function as an integral part of the care plan as important as the third round of chemotherapy or the NIH protocol.
We grieve whenever there is a death, and it is appropriate that we grieve. Grief may also be hardwired into our collective genome as even animals display grief. It is important to recognize grief as necessary psychological work that must be completed to reconcile loss. It is a part of the healing process for both the families of our patients and for ourselves. It is common in medical practice to suppress appropriate grief behaviors, to conceal and deny them. Again, this behavior has followed our civilization and culture. It is observed across our collective experience. The fact that grief has been present for millennia or more suggests that families and loved ones need to be allowed to grieve for their losses.
As we approach the death of a loved one, a child, or a patient, physicians are frequently confronted with the question, “When is it all right to die?” When can we consider “I’ve had enough” to be appropriate for a patient who is losing a long battle with cancer? When is “I’ve gone through this day after day, and I don’t want to go through it anymore” an acceptable sentiment from a patient with intractable and untreatable pain? When is a crushing depression, a terrible burn, or the severe disfiguring traumatic injuries of war an adequate reason for someone to end his life? Individually and culturally, we are ill-equipped to determine who should make such a decision. Should this be a personal or community judgment? Should we rely on a panel of experts, an ethics committee, a group of wise men and women? Is it morally or ethically appropriate to impose the beliefs of the community on those who suffer? Given that it is not possible to know the extent of the suffering of those who are dying, how can we place limits on the individual’s ability to choose?
Current social conventions effectively deny an individual the right to choose a time and a place that is right for them. Physicians, bound by oath to do no harm, often fear retribution for assisting suffering patients. Fears about the use of narcotics limit analgesia. Increasingly, compassion becomes secondary to the application of modern technology. In terminal cases, therapy often focuses simply on the extension of biological function with little acknowledgement that such measures effectively prolong patient suffering while contributing little to the quality of their final days. Even though doctors are called to treat and heal, the battle is not ours to call. Patients should have the last word, and medical professionals should provide their patients with the knowledge to determine whether or not a technological struggle is how they wish to frame the end of their lives.
Many of us have been unenthusiastic participants in futile efforts to deter a patient from the inevitability of death. Our current focus on life extension at all costs is very different from the realities that faced the majority of Western society just over a century ago, where the period between recognition of disease and death was short, where patients died at home, and where the inability to extend life allowed individuals to prepare for their final journey. Medical technology in many ways has been a great blessing, with the potential to relieve pain and suffering that is still endemic to much of the world. At the same time, our ability to prolong life has eliminated many positive traditions surrounding death. Many of us no longer die in our homes surrounded by our loved ones, but in ICUs, on ventilators, with monitors and infusions, far from most of the people we call family. The atmosphere is sterile and cold rather than warm and comforting, exclusive rather than inclusive, and uncomfortably public rather than private.
Is this what we want for our family, our friends? Can we call it progress when we embrace every known technological advance and apply it to the last moments of life? As the candle flickers, is it the extra minute or the extra day that matters? Or is it the gathering of our families and friends in our homes that will define “the good death”? Can we provide technologically-sophisticated care without providing profoundly compassionate care? Will we encourage patients and their families to understand the real consequences of aggressive medical treatment, especially as treatments become less curative and increasingly experimental? Alternatively, can we look back over the millennia of our human experience and study the history of thought surrounding death, retrieving that which is right and good? Or will we ignore the suffering of the many, in some misdirected drive to protect the few? The answer to these critical questions will, in part, define the continued progress of our civilization. We can only hope that wisdom prevails and that life-sustaining technology does not hinder, or, worse, prevent a good death.
RAEFORD E. BROWN, MD, FAAP is a Professor of Anesthesiology and Pediatrics at the University of Kentucky / Chandler Medical Center. As a physician writer, he has a growing interest in the humanistic qualities demonstrated by a good physician.