Perspective
Ending End-of-Life Phobia — A Prescription for Enlightened Health Care Reform
N Engl J Med 2009; 361:e63December 31, 2009
- Article
Reform is coming to U.S. health care. A sense of urgency regarding the redesign of policies prevailed well before Barack Obama was elected president under the banner of change. A debate is now raging over a wide span of topics, including prescription plans, physician reimbursement, and solutions for the medical liability problem. But thought leaders have been remarkably reticent with respect to one aspect of the health care system: end-of-life care. Given that patients with terminal illness require a disproportionate concentration of expenditures, the silence is deafening. Sure, the summer's controversy over “death panels” provided fodder for late-night comedians, but just under the surface of the joking there was evidence of America's uneasiness with the hard conversations that lay ahead. Why has it been so difficult to initiate a dialogue about matters pertaining to a subject that defines the human experience?
As a cancer specialist, I am actually not surprised by this state of affairs. Patients, family members, and (yes) even many of my colleagues have great difficulty in coping with thoughts of death.1 Sophisticated mechanisms, ranging from the modern approach to dying (i.e., doing so outside the home, supported by high-tech equipment) to the use of euphemisms and gallows humor, have been developed to help us deny and sanitize death. People in general are most comfortable deferring questions that relate to their finitude.
But try as we may to avoid it, death has a way of intruding on our lives. Beyond my encounters inside the hospital, I am flooded by constant reminders of this point. Driving home from work last month, as a traffic jam began to clear, I noted that the remains from a fatal motor vehicle accident were being removed from the shoulder of the highway. The sight was horrific. As I write these words, a friend “tweets” that his uncle has lapsed into an irreversible coma. And several years ago, I was stunned to hear that a violent murder had been committed in the quiet suburban New York neighborhood where I grew up. These are dreadful developments that force me to confront my mortality.
Every human being fears death in his or her unique way. This anxiety often shunts us onto a path of least resistance, veering away from the processing of basic existential issues. But this diversion may represent a lost opportunity, since an awareness of death can catalyze positive transformations.2
Recently, a 52-year-old businesswoman who was treated for colorectal cancer in 2006 came into my office for her follow-up visit. We were just shy of the magical 3-year milestone, which connotes cure if there is no evidence of disease recurrence. Unfortunately, a routine scan disclosed widespread metastases in the liver, lungs, and bone. The woman was understandably distraught and overwhelmed by the need to choose a chemotherapy regimen. However, when she decided to tackle what she termed “ultimate issues,” such as loneliness and suffering, she was able to marshal the courage to ease up on career commitments and focus on resolving long-standing conflicts, especially her estrangement from an older brother. She concluded that they had stopped speaking because of petty concerns, and she persevered until forgiveness was found.
Many of the patients I work with uncover a profound appreciation of life after contemplating the implications of the end of life. Most people can actually be taught to turn an outright crisis into an occasion for growth. So my modest suggestion is that a willingness to ponder death can bring about renewed clarity in our thinking and our priorities.3 Once we are ready to process the feelings that death evokes, we will be better equipped to take on the challenging ramifications of terminal illness.
The high-voltage nature of the topic was clear when the “death panel” controversy first surfaced. The term — introduced on Sarah Palin's Facebook page and subsequently ranked as a finalist on many word-of-the-year lists — has come to connote a theoretical body that determines which patients deserve to live when health care is rationed. The trigger for the concept was a small provision embedded in the lengthy House bill that would permit Medicare coverage for an end-of-life consultation once every 5 years. In an op-ed piece in the New York Times, Representative Earl Blumenauer (D-OR) explained that his motivation in composing the clause was to create a mechanism to “reimburse doctors for having a thoughtful conversation to prepare patients and families for the delicate, complex and emotionally demanding decisions surrounding end-of-life.”4 These intentions seem noble, yet even this seemingly cautious and reasonable language apparently scared people.
What animates these fears? I believe that patients perceive their vulnerability when such discussions are initiated. Moreover, patients (as well as the caregivers and potential surrogates who support them) may fear that the physicians who broach the topic are striving to cut costs and compromise services. This worry is recognizable to any oncologist who has ever peered into the eyes of a patient with refractory cancer who yearns to try third-line chemotherapy. At the same time, however, policymakers are sincerely worried about a disconnect between society's expectations from its medical system and what might realistically be offered as we go forward. My concern is for the vulnerable patients, but my goal is to reach a level of maturity that enables these conversations to transpire in a manner that is indeed thoughtful.
Some people may never be comfortable with this subject, but others might welcome a dialogue, provided that three principles are affirmed: personal autonomy, the sanctity of life, and a climate of balance. The first two terms are admittedly quite subjective, but most people easily sense when these values are being respected or violated. To achieve a climate of balance, however, I believe that we will need to add some safeguards into the equation.
During my residency training in the 1980s, the concept of conservative therapy for early-stage breast cancer was gaining interest. New ground was being broken, and it had to be done gently. In many hospitals, surgeons who were enamored of mastectomy and radiation oncologists who saw a rationale for the combination of lumpectomy and radiotherapy agreed to be simultaneously present in the room as patients tried to navigate the clinical controversy and determine what was best for them. In most circumstances, tactful exchanges were carried out without rancor and without questioning of the experts' hidden agenda. In that environment, patients felt safe. If similar conversations were led by a team consisting of patient advocates (e.g., chaplains) and medical experts espousing countervailing views regarding the use of resources at life's end, perhaps we could restore the requisite trust for this essential dialogue.
As the U.S. health care system braces for reform, end-of-life concerns must be confronted squarely. Will hospice services be expanded? Should expensive experimental therapies that only slightly prolong life be deemed reimbursable? Can our profession evolve nuanced strategies for resolving questions of medical futility?5 Can we find creative ways for restoring dignity to the dying process? Should national guidelines be created for physician-assisted suicide? There is no shortage of topics that require attention.
Concerns over the end of life will never die. But denial of our mortality is no longer an option. If we muster the courage to address the last collective phobia of the Western world, we may generate ideas for truly comprehensive health care reform and better living.
Financial and other disclosures provided by the author are available with the full text of this article at NEJM.org.
This article (10.1056/NEJMp0909740) was published on December 16, 2009, at NEJM.org.
Source Information
From the Institute of Radiotherapy, Tel Aviv Medical Center, and the Tel Aviv University School of Medicine — both in Tel Aviv, Israel; and the Department of Radiation Oncology, Jefferson Medical College, Philadelphia.
- References
References
1
Shanafelt T ,Adjei A ,Meyskens FL . When your favorite patient relapses: physician grief and well-being in the practice of oncology. J Clin Oncol 2003;21:2616-2619
CrossRef | Web of Science | Medline2
Yalom ID. Staring at the sun: overcoming the terror of death. San Francisco: Jossey-Bass, 2008.
3
Rosenbaum ME ,Loas J ,Ferguson K . Using reflection activities to enhance teaching about end-of-life care. J Palliat Med 2005;8:1186-1195
CrossRef | Web of Science | Medline4
Blumenauer E. My near death panel experience. New York Times. November 15, 2009.
5
Burns JP ,Truog RD . Futility: a concept in evolution. Chest 2007;132:1987-1993
CrossRef | Web of Science | Medline
- Citing Articles (5)
Citing Articles
1
Catherine A. Marco, John C. Moskop, Raquel M. Schears, Jennifer L’Hommedieu Stankus, Kelly J. Bookman, Aasim I. Padela, Jennifer Baine, Eric Bryant. (2012) The Ethics of Health Care Reform: Impact on Emergency Medicine. Academic Emergency Medicine 19:4, 461-468
CrossRef2
Cynda Hylton Rushton, Jack Schwartz. (2011) A Legislatively Mandated Council: A Model for Palliative Care Policy Integration. Journal of Palliative Medicine 14:11, 1240-1245
CrossRef3
Nuno Madeira, Emília Albuquerque, Tiago Santos, Alexandre Mendes, Marta Roque. (2011) Death Ideation in Cancer Patients: Contributing Factors. Journal of Psychosocial Oncology 29:6, 636-642
CrossRef4
David W. Frost, Deborah J. Cook, Daren K. Heyland, Robert A. Fowler. (2011) Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: A systematic review*. Critical Care Medicine 39:5, 1174-1189
CrossRef5
Robert M. Wachter. (2010) Understanding the new vocabulary of healthcare reform. Journal of Hospital Medicine 5:4, 197-199
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