Dancing with Death
It is a war in which enormous strides have been made, with countless victories large and small.
The enemy is death. The avenger is medicine. And the war is going very poorly indeed.
In many ways, the gains of modern medicine against death and disease are truly impressive: longer life expectancies; progress and cures against heart disease, cancer, and diabetes; surgical and procedural marvels hard to imagine even 15 or 20 years ago. Yet, it is these very advances which seem to lie at the heart of a growing problem. We are so engaged in the battle, so empowered by our growing capabilities, that we have lost sight of the bigger picture. While pushing back the adversary of death, we are ever so steadily being destroyed by the very battle itself.
Several recent experiences have driven this dichotomy home for me. Last week, I was asked to evaluate a man who had been hospitalized for a over a week. A nursing home resident in his late 80's, his overall health was fair to poor at best, and he suffered from severe dementia. He was unable to communicate in any way, and could recognize no one -- not even his wife of many years, who remained in possession of her full facilities. He was admitted to the hospital with a severe urinary tract infection with a highly resistant bacteria, and septic shock. When he arrived at the ER, the full extent of his dementia was not apparent to the physicians there, and his wife insisted that all measures be engaged to save him. Aggressive medical care was therefore initiated -- intensive care unit, one-on-one nursing care, hemodynamic monitoring, drugs to support blood pressure, intravenous nutrition, and costly antibiotics. After nearly two weeks of such intensive therapy, the patient largely recovered from his life-threatening infection -- returning to his baseline of profound dementia. Yet the underlying risk factors which led to it -- his age, a chronic bladder catheter and bacteria-harboring stones, diabetes, -- remained in place, lying in wait for another, inevitable opportunity, in a matter of weeks or months. The cost of his hospitalization was easily in 6 figures.
In another situation, an elderly women presented to the hospital with signs of a serious, life-threatening infection in her abdomen. A healthy widower, she lived independently with her sister prior to her illness. Emergency surgery was performed, and an abscessed kidney removed. Her medical condition deteriorated after surgery, with coma due to stroke and failure of her remaining kidney brought on by the infection.
The patient's sister and living companion communicated the clear final wishes of the widower: a women of strong faith, she wished no extraordinary measures, such as ventilators or dialysis, to extend her life needlessly. She was comfortable with death, and not afraid. The staff prepared to allow her to die gracefully, comfortably, and in peace.
But such was not to be. There was no living will, and the sister did not have legal authority to make such decisions. But the widower's daughter, a nurse living out-of-state with little recent contact with her mother, arrived in town demanding that aggressive measures be taken to save her. A nephrologist (kidney specialist) was called in. A superb physician, compassionate and dedicated, he had been successfully sued in a similar case after recommending that dialysis be withheld in a patient with a grim prognosis. This was a mistake he would not make twice: the widower was transferred to another hospital, placed on dialysis, and died 3 weeks -- and a quarter of a million dollars -- later, in an ICU. She never woke up.
The issues which these two cases bring up are numerous, complex, and defy easy answers. They touch upon the subjective measure of quality-of-life and what it is worth; the finite limit of economic health care resources; the relative responsibilities of physicians, patients, and their families in end-of-life decisions; the pressures placed on the health care system and its practitioners by after-the-fact second-guessing in an aggressive tort environment; and a host of others greater or lesser in weight and substance, up to and including the meaning of life itself.
All the players bear responsibility in this passion play. Physicians excel at grasping what they can accomplish, but are woefully inadequate for the task of deciding whether such things should be done. In the urgency of acute care, delay to consider the ramifications of a decision to treat may cost an opportunity to save a patient for whom such treatment is desirable; better always to err on the side of salvage. Pressured by family, potential litigation, or instinct, the path of least resistance is to follow your training and use your skills. And physicians themselves are uncomfortable with death, though inundated in its ubiquity.
Family members naturally resist the agonal separation of their loved ones, often harboring unrealistic hopes and expectations of recovery in the face of inevitable death. A curious dance of denial often ensues between physician and family, as each, unwilling to face the unpleasantness of the inevitable, avoids the topic at all costs. The physician hides behind intellect, speaking of blood counts, medications, and ventilators, or at best tiptoeing around the core issue with sterile terms like "prognosis." Family members hesitate to ask questions whose answers they already know. Too rarely are the physician and family willing to place the subject squarely on the table, in all its ugliness and fearfulness. Decisions which need to be made are put off, unspoken and deferred. The clock ticks on, the meter is running, and only the outcome is not in doubt.
The tort system provides a ready outlet for the anguish and anger of death of a loved one. In such a period of intense emotional turmoil, the real or perceived indifference of physicians (often a mechanism of detachment by which doctors deal with the horrors of death and illness); the parade of unfamiliar medical faces as no-name consultants come and go during the final days; the compounding burden of crushing financial load from the extraordinary costs of intensive terminal medicine; the Monday-morning quarterbacking by the tort system of complex, often agonizingly difficult medical decisions in critically-ill patients: all present a toxic and intoxicating brew which impels the health care system forward to leave no avenue untravelled, no dollar unspent in prolonging life beyond its proper and respectful end.
This march of madness is not without resistors. Seizing on the high costs, the futility, and especially the lack of personal control fostered by impersonal, highly technical terminal care, the euthanasia movement is maneuvering into the gap. Cloaked in slogans of personal autonomy and "Death with Dignity", active euthanasia proponents seek to replace the sterile prolongation of a now-meaningless life with the warm embrace of Death herself. Terrified by an out-of-control dying process, an end of a life which embodies all meaning, they seek to control death as their final act of significance. But Death will not be controlled, and those who dance with Death are seduced by her siren. Euthanasia starts with compassionate intent, but ends with termination of the useless. Man does not have the wisdom to control death; The Ringbearer is corrupted by its power.
Our discomfort with death is our confusion about life. Man is the only species cognizant of his coming demise -- who then, in the ultimate paradox, lives his entire life pretending it will not happen. Our Western culture, enriched with a wealth of distractions, allows us to pass our living years without preparing for the inevitable. When the time arrives, we use all the weapons at our disposal -- wealth, technology, information, law -- to resist the dragon. We drive it back for a time -- at enormous cost, personal, financial, physical and emotional. Death always wins -- always.
I am not of course yearning for a return to the past, a passive resignation to the inevitable anabasis of disease and death. The benefits of medicine and the forestalling of death are precious and powerful gifts, which have greatly benefited many. But like all such great powers, they are useful for good or ill. When the defeat of death becomes an end in itself, detached from the meaningfulness of life lived, it has great destructive energy.
We must learn how to die. And to learn how to die, we must learn how to live -- how to seek the transcendent, the power of love, and sacrifice, and giving which makes life rich and enduring. The selfish, the superficial, the transient all gratify for a time, but when this is all we possess, we grasp desperately to their threadbare fabric when beauty and health give way to weakness, fear and death. All great religions understand this: the meaning of life transcends life. In the Judeo-Christian view, life is an opportunity to draw ourselves and others closer to the light and goodness of God, with the promise of an even greater life and deeper relationship after death. Yet even for the agnostic or secular among us, service to others -- personal and social -- has the potential to endure long after us. None of us will be remembered for our desperate clinging to life in its waning days, but rather for the lives we touched, the world we made better when we lived.