Dismissing the Immortality Myth: Improving Care and Incidentally Reducing Costs
Is our "death evasion fantasy" driving up health care costs? Check out this provocative commentary from our May 2013 issue. -Ed.
A major driver of health care costs that seems to be off limits for any discussion is the American trait of denying death, with a pervasive refusal to confront personal mortality, and the prevailing death rate of one per person. Consider the absurd protestations of “death panels” and “rationing” in response to the simple proposal that Medicare should pay for discussions about patients' end-of-life preferences. This dark cloud of avoidance impairs the integrity, honesty, and objectivity of the physician-patient relationship(1) and is a major cause of the use of costly,(2) sometimes harmful and futile care in the last year, weeks, and days of patients' lives. Often this care is more aggressive than patients or their families expected or desired.(3) There is abundant evidence that such care leads to the well-documented overuse of diagnostic and treatment options, contributing to unsustainable costs of medical care and associated US fiscal problems.(4) Much worse than the economic issues involved, however, is the fact that this often prevents closure with loved ones and may result in a disastrous quality of life for those with terminal illness.
This death evasion fantasy is facilitated subtly by the medical establishment with the implied promise that if enough is spent on health care and research, wars on cancer and Alzheimer's and heart disease will be won and virtual immortality could become a reality. In truth, immortality is not something to be pursued. Consider Jonathan Swift's description of the Struldbruggs in the land of the Luggnagians when visited by Gulliver.(5) They were born with the chance of becoming immortal, however, they inform him that immortality is a curse, not a blessing. As they age, their young bodies age as well and they become more disabled, chronically ill, and misanthropic, reporting that they will embrace death as an alternative to centuries of such a pathetic, painful existence.
Studies document that many physicians avoid discussions of poor prognosis, and recommend high-tech, heroic interventions rather than hospice and palliative care in obvious terminal situations.1 It is easier to order another diagnostic or therapeutic procedure than to explain that the end is near and that the clinician and system stand ready to do whatever needs to be done to help the family and patient deal with this painful reality and all the associated difficult issues, while reaffirming that the patient will not be allowed to die in pain or be abandoned. The literature on how physicians make their personal end-of-life decisions, whether anecdotal,(6) guideline oriented,(7) or personal,(8) is consistent. As physicians are faced with a terminal illness they generally focus on quality of life, utilizing hospice and palliative care. While physicians use technology regularly in their practices, they recognize its limitations, and for their late-stage care they avoid the technologic imperative of “We can, therefore we must.” They most often die at home with family, eschewing futile interventions with well-documented adverse effects. They know how to access any level of care for themselves, but most often choose to avoid prolonged intensive care unit stays, life support systems, and recurrent episodes of hopeless cardiopulmonary resuscitation.
To provide patients with the same understanding of care options in critical end-of-life situations which physicians choose for themselves requires a major cultural shift. One underlying objective should be to have Americans come to accept life as a journey, understanding that death, not immortality, is the end point. Current societal and medical opinion and medical practice clearly do not support such an approach. Patients and families are generally unprepared to face major decisions which seem to them to arise unexpectedly even while their physicians have been well aware of the grim prognostic realities for some time. In these circumstances, many clinicians may agree to “do everything” as part of a system that encourages excessive treatment as the path of least resistance. While these last-ditch initiatives may occasionally be carried out because of considerations of financial gain or be due to litigation fears, they are overwhelmingly a result of lack of prior planning discussions and poor communication.
As remedies, Callahan and Nuland(9) have proposed thoughtful changes in the priorities and organization of health care. They recommend concentrating funding on public health and social programs while promoting primary care, de-emphasizing sub-specialization and high-tech end-of-life initiatives. They advocate focusing on care rather than cure as the goal for chronic illness and having physicians explain how over-aggressive care enhances the likelihood of a poor death. As important and desirable as these systemic changes could be, involvement by all physicians at the sharp end of care will arguably be even more crucial in achieving realistic agreements dealing with the limits of medicine, life choices, and the inevitability of death. Physicians have the understanding, knowledge, perspective, skill set, experience, and cachet to do this. Currently lacking is a willingness and commitment by the profession to start the difficult negotiations to unify all the diverse attitudes and opinions of practitioners of medicine in all specialties—admittedly a difficult task.
As the concept of life as a journey becomes established as a societal standard and the immortality myth is dismissed, it will hasten early, routine discussions of patients' preferences and values. For each of them, what is most important? Is it maintaining: Cognition? Mobility? Sexual performance? Personal comfort and pain avoidance? Overall functional status? Family? Or is longevity at any cost their most important objective? The “ten year prognosis”(10) is a realistic and optimistic starting point. With an established basis of mutual trust between patient and physician, a series of collaborative, transparent deliberations become easier to initiate and more comfortable to carry out, with evidence-based discussions about options for the possible and even unpredictable eventualities. Such conversations are ideally done before the onset of a life-threatening illness, but also can be carried out in potentially terminal situations.(11)
Specific examples of such shared discussions are easy to cite: What are the expected results from this chemotherapy program; cure, improved survival, or a better quality of life for this patient?(11) In recommending this carotid artery procedure, what is the likelihood of a complete cure, versus an intermediate outcome such as a stroke? Is PSA testing appropriate for this patient? Why is a feeding tube not recommended for patients with advanced dementia? Is palliative or hospice care now the best option in this patient's situation? Such decisions are expedited once the parameters and ground rules for individual care have been established. Best of all, every patient will be made comfortable as they record their clear wishes via open discussions with their physicians, who can advise them not to give up too early when life can be enjoyed, but can help make appropriate, personalized choices when death looms.
As physicians and patients talk realistically about actions regarding prognoses including death, rather than accepting the default unspoken myth of immortality, multiple benefits will accrue. A marked reduction in overall costs of health care will occur,(2) freeing significant amounts of money to be spent on other medical and social priorities. The much more important outcome will be that patients will be better served as they receive exactly the type and level of care that they want. Physicians also will achieve greater professional satisfaction, reminding them of the reasons that they initially entered the profession.
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-- James Webster, MD, MS
This article originally appeared in the May 2013 issue of The American Journal of Medicine.
