Palliative and End-of-Life Care: Issues, Challenges, and Possible Solutions in the United States
Kashyap Patel, MD; and Mary Kruczynski
With Baby Boomers outnumbering children less than 5 years of age in the United States, society as a whole, and those in the medical field in particular, are faced with aging-related challenges moving to the forefront. While some are inevitable, others are self-created or might even be politically motivated. Yet as science evolves from the macro down to the nano level, we have had some difficulty embracing a key concept: physicians can diagnose disease by molecular rearrangements using gene microarrays, and yet we as a society are unable to come to a common understanding that death is an inevitable continuum of life. Every single living organism is destined, indeed genetically programmed, to die. And yet, despite all of our advances, neither the larger scientic community nor society as a whole is willing to initiate a sustainable debate around death—the only certain facet of existence. This lack of effort and willingness to accept, study, research, and implement appropriate intervention alongside the process of death and dying has often led to appalling quality of care in the last few weeks or months of a patient’s life, extreme financial burdens, and lasting psychological issues for caregivers.
The United States devotes more money and resources to healthcare than any other country in the world, at 16% of gross domestic product (GDP). In fact, the amount of money spent on healthcare here exceeds the total GDP of most countries in the world except for China, Germany, and Japan. Yet, despite the massive deployment of resources, we do not lead the ranking in the majority of indices for healthcare matrices. The United States lags behind 20 other nations in life expectancy and its quality-of-death index is below that of a majority of developed European nations. One-third of all expenditures from federally funded programs are spent in the last year of life and within that last year, one-third of resources are spent in the last month of life.1,2
CHALLENGES UNIQUE TO THE UNITED STATES
The United States is a unique, multicultural society: multitudes of ethnicities live side by side, each practicing and following its own distinct faith and set of end-of-life beliefs. This fact, combined with several special interest groups, scientfic advancements, and slogans like “conquer cancer,” “cheat death,” and “beat the disease” have created an environment of unrealistic expectations among the general populace, up to and including the educated elite. Our unrealistic mind-set of living forever is compounded by the fact that we see terminal and life-threatening illnesses as enemies to be conquered. The “War on Cancer,” a term coined during the Nixon administration, has morphed into modern slogans of battles against the disease.
Unfortunately, this all represents a collective loss of our sense of reality. First and foremost, the basic biological nature of cancer as a mutation of one’s own tissues has largely been ignored in the mindset of the general populace. Rather, cancer is represented as an outside enemy force that needs to be vanquished. Cries of “Conquer!,” though well-meaning, can have shocking reverberations, especially in patients who are “losing” their fight—it can darken, even demoralize the human spirit at its most vulnerable time. Rather than acknowledging cancer as a mutation in one’s body, the suffering patient feels stigmatized, as their spirit and belief in a moral strength are measured by the degree of “success” in their ght against cancer.
Almost always in terminal cases, this warlike mentality triggers an excessive pursuit of marginal improvements in life expectancy. Sadly, the only thing greater than the financial expenditure thus endured near the end of life is the pain and suffering that the terminal patient must withstand for minor, and sometimes even nonexistent, improvements in life expectancy. Instead of facing imminent death in a comfortable environment with suffering that is compassionately managed to improve quality of life, the patient experiences near-constant discomfort and lives out his final few days hooked to a drip in a hospital bed. The primary loser is the dying individual, and the secondary loser is the larger society: we bear these costs when they are virtually without benefit (and often at signicant detriment) to the individual whom they were meant to assist.
Further compounding the problem is the egotistical attitude many treating physicians develop: They count themselves as “winners” or “losers” depending on a treatment’s outcome, eventually forgetting on some level the simple fact that everyone will die at some point. Indeed, physicians and researchers alike often perceive death and dying as a failure of their efforts versus a natural process of degeneration.
Complicating the matter further, any debate about compensating doctors to address end-of-life care (EOLC) rapidly devolves into laced jargon and “death panel” terminology. The effect is so strong, and there is such implicit emphasis upon borderline immortality as an achievable goal for a physician, that fewer than 10% of medical schools offer education on the process of death and dying to their students, and fewer than 18% of medical students and residents (according to 1 survey) have received formal EOLC education. Approximately 39% felt unprepared to address patients’ fears about death, and nearly 50% felt unprepared to manage their own feelings about it. Forty percent felt that dying patients were not considered good teaching cases and that meeting the psychosocial needs of dying patients was not a core competency.3
Healthcare in the United States, in general, focuses on identifying and treating the abnormal findings within an individual rather than on the holistic treatment of a multidimensional human being. Homing in on diseased tissue has, all too often, overridden the human context within which medicine should be practiced. The typical 2-minute interaction of a patient and intensivist in the intensive care unit (ICU), where measuring electrolytes and respiratory and cardiac parameters take precedence over any other aspects of the patient’s condition, exemplies the elevation of science over humanity. As the typical ICU is structured, there is little space to explore, understand, respect, or implement an individual patient’s desire, which indicates a fundamental flaw in the culture of hospital medicine that can be addressed only by understanding and exploring hospital functional culture.4
The financial and societal consequences of inordinate end-of-life expenditures abound. Studies indicate that patients who died in the ICU had signfiicantly worse quality of life than those who died at home; their caregivers, too, have exhibited persistent psychological issues (Table).5 What’s more, there is evidence that when EOLC and advanced care planning were mentioned during physician- patient communications, acceptance of hospice and comfort care as well as palliative care was signicantly higher and, consequently, less expensive.6
Signicantly, physicians who are able to remain engaged and “present” for their dying patients—by inviting and answering questions, and by treating patients such that they feel they matter as fellow human beings—have the capacity to improve a dying patient’s quality of life.7
Physicians and oncologists also face personal issues in dealing with death and dying. As a large study conducted in 3 Canadian hospitals indicates,8 more than half of oncologists struggle with feelings of failure, self-doubt, sadness, and powerlessness. Unacknowledged grief among these oncologists has at times led to inattentiveness, impatience, irritability, emotional exhaustion, and burnout. They can distance themselves and withdraw from those patients who are closer to dying. A similar percentage of physicians reported that unaddressed grief altered the treatment decisions they made with subsequent patients, resulting in more aggressive treatment and reluctance to recommend palliative care or hospice. Such individual factors also result in some oncologists’ reluctance to initiate and address EOLC.
ISSUES AFFECTING EOLC
The World Health Organization has defined palliative care as “an approach that improves the quality of life of patients and their family members facing the problems associated with life-threatening illness, through the prevention and relief of suffering.” However, due to several factors—among them the reluctance of society to accept death as a natural process, excessive medicalization, and emphasis on defeating disease—discussions of palliative care remain all too rare. The limited research on EOLC reveals that a multifactorial approach is best to address the challenges of providing appropriate palliative care and EOLC in the United States. According to findings published in the large multicenter Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), physicians were largely unaware of their patients’ EOLC preferences (eg, do not resuscitate/do not intubate orders).9
Critics argue, at times, that embracing EOLC is akin to abandoning patients—a narrow-minded view, we feel, similar to the belief that length of life is the exclusive metric of physician success. Embracing EOLC is in no way akin to giving up on patients. Rather, it complements existing treatment protocols. If treatment fails and a patient is still terminal, appropriate EOLC should be an option presented for serious consideration. The patient needs to know they have the right to choose between extending treatment that could squeeze out a few more weeks or months of survival but have serious impact on quality of life, or to elect EOLC, designed to improve quality of life toward the end.
While patient autonomy is acknowledged as a key cornerstone of medicine, it has fallen by the wayside where EOLC is concerned. Most often, patients have neither explored the need for planning for their death nor are fully informed about the consequences of medical interventions. Although every state requires that patients admitted to hospitals be asked if they have advanced directives, it has devolved into a check-the-box exercise that is quickly fullled in the emergency department triage area. Simply passing legislation cannot bring about cultural change. Discussions about advanced care planning, palliative care, and EOLC are much more meaningful when carried out with a physician—a family doctor or subspecialist involved in chronic disease management—familiar with the patient.
THE WAY FORWARD
In summary, EOLC in the United States faces many challenges. In a recent report, the Institute of Medicine highlighted the magnitude of the problem and delivered many recommendations including those in the realms of healthcare delivery, professional education and development, policy decisions and development, public education and awareness, and payment reform. The report identified the deficit in palliative care education in medical and nursing school curricula as well as the deficit in physician communication skills.10
The foundations of suitable EOLC and improvement in quality of death are rooted in physician-patient communication. Improving the overall quality of death for a multicultural society like the United States rests on awareness among healthcare providers of cultural and ethnic preferences and of beliefs related to death and dying. Educating providers about these attitudes would result in enhanced trust, confidence, and patient acceptance of appropriate EOLC. As stated previously, improved communication about advance directives, EOLC, and comfort care result in acceptance of better EOLC, improved quality of life, and reduced healthcare expenditure.
Another necessary, significant step is to remove politics from the EOLC conversation. As much as we want to respect individual freedom and autonomy, hijacking a real debate on EOLC for sheer political gain not only causes disservice to patients, but to society as a whole. This may partially explain why, despite spending hundreds of billions of dollars, our nation still lags behind many developed countries in both quantity of life and quality of death.
Finally, we want to embrace death not as a failure for a physician, but rather as a natural process that all of us will face one day. Let us no longer stigmatize death as our failure. EBO