Editor’s note: The preceding articles by members of the Resident and Associate Society (RAS) focus on the leadership skills young surgeons will need in the coming years. This article serves a different function. It introduces Bulletin readers to the topic that will be discussed during the RAS Symposium at this year’s Clinical Congress, titled “Surgery at the End of Life: For Love or Money?” The panel discussion will take place 1:00–4:00 pm on Sunday, September 30, in McCormick Place West. The symposium will feature the winners of the RAS Issues Committee Essay Competition. Those winning entries will be published in a future issue of the Bulletin.
A total of 18 percent of Medicare beneficiaries undergo a major operation in the last four weeks before their death.1 The discussion regarding risks and benefits of operative interventions in an end-of-life situation can be emotionally charged and ethically complex. Perception, expectations, and care plans often differ among patients and families, surgeons, and other physicians involved in a patient’s care. In a time of health care reform, outcomes tracking, and cost awareness, this becomes an even larger challenge.
A recent survey of patients found “hope” to be among the most important aspects of care. According to the survey, “Patients are uncomfortable with uncertainty about diagnoses and prognoses and often request tests to help alleviate those anxieties.”2 Guilt may play an important role in decision making if all care options are not pursued. However, considering that as much as 30 percent of health care costs are associated with unnecessary tests, procedures, and treatments, how do surgeons make decisions regarding end-of-life surgery and care?3 What factors are important to discuss with patients and families faced with difficult surgical decisions? And how do the costs and outcomes of end-of-life surgery affect the health care system?
Surgeon’s stake in the game
Autonomy is one foundation upon which all the health care decision making is built. With respect to patients, autonomy refers to their rights to make decisions related to the care of their bodies. The physician’s respective autonomy—their freedom to provide the best care to their patients based upon their best judgment—is often overlooked or simply ignored. In a viewpoint written by Ezekiel J. Emanuel, MD, PhD, and Steven D. Pearson, MD, MSc, and published in the Journal of the American Medical Association, the author appropriately defined physician autonomy as “the freedom to determine both the conditions of practice and the care delivered with the principal goal that care decisions are aimed at promoting the patient’s well-being.”4
In fact, some health care professionals are concerned that the impending changes resulting from health care reform may restrict or enhance surgeons’ autonomy. It is surgeons’ commitment to a high standard, a drive for intellectual excellence, and the role of stewards of society that place them in a unique position to use evidence-based clinical judgment to balance and effectively address a patient’s desire for optimal health care.
Optimization of health care resources has gained increased popularity in recent years and is the founding principal of accountable care organizations (ACOs), the end goal of which is to reduce wasteful spending. Economists define waste as any expense from which profitable gains are not recuperated, such as the performance of unnecessary interventions. It has been estimated that a human life has a value of at least $3 million and that medical care that results in one year of good quality life should cost less than $100,000.5 If the costs of care delivered outweigh the medical and quality of life benefits, then it is wasteful from an economic perspective.5 Along those same lines, a surgeon could potentially define waste as performing an operation from which the patient will never recover to a reasonable and meaningful quality of life.
How might optimization of health care resources translate into patient care? For example, should a patient who presents with critical limb ischemia undergo primary amputation rather than a “costly” endovascular intervention? In this case, a primary amputation might appear to be economically sound, but a closer look provides cause for reconsideration. After accounting for the cost of hiring home health aides, modifying an amputee’s home, and providing long-term care, the cost-effectiveness of a cheaper medical intervention is less clear. In fact, after taking into account the economic impact on the patient’s family, time off from work, decreased work productivity, and so on, amputation becomes an even more unattractive option. In fact, the contrary argument holds more truth—interventions, which are more aggressive in salvaging critical limb ischemia, have been shown to be associated with lower complication rates and costs.6
Surgeons, at some point, are patients, too. If surgeons evaluate themselves, what type and level of care would they prefer, particularly at the end of life? Many health care professionals and surgeons opt out of medical care in this situation. This decision may be surprising to the public, but not to most physicians. Many surgeons can recall a conversation regarding a critically ill, elderly patient lying on a proverbial mattress grave in the surgical intensive care unit (ICU) during which a physician or colleague has stated, “Don’t let that happen to me.” Retired physician Ken Murray, MD, captured this reality in an essay titled “How Doctors Die,” which describes the story of an orthopaedic surgeon who chooses not to undergo any treatment for a newly diagnosed pancreatic cancer but rather to spend his final months with friends and family. After receiving his diagnosis, he never stepped back inside a hospital.7
This story sheds light on how physicians react to the life and death situations to which they are exposed more than any other profession. The futility of cardiopulmonary resuscitation (less than 85 percent survival rate even if witnessed cardiac arrest in a hospital), emergency department thoracotomies, and various other heroic measures are best appreciated by the physician community, who experience it every day. After all, medicine is just a form of palliation, and every human being has a 100 percent mortality rate; surgeons have frequent and firsthand experience with this truism. However, the complexity of health care and its delivery makes this simple understanding become quickly complex.
Surgeons are not alone when faced with decisions regarding surgery at the end of life. Patients and their families are also caught in the midst of these decisions. For them it is often a foreign and confusing experience, as they are forced to make life-altering decisions about themselves or a loved one under extreme stress. This situation is made even more extreme in the U.S., which has a culture that is focused on rescue care.
What do families mean when they ask physicians to “do everything” they possibly can to save a loved one? Do they expect major operations to be performed with little chance of success? Do they envision the harsh realities of tracheostomies, feeding tubes, central lines, dialysis catheters, and epinephrine infusions as part of a last-ditch effort to treat the patient? Some may, but several studies among families of critically and terminally ill patients suggest otherwise. These studies show that what patient families truly want includes: a trusting relationship between physician, patient, and family; emotional support and mutual respect; avoidance of treatments lacking real benefit; relief of discomfort and pain; and good communication between all involved parties.8,9 Are there explanations for the difference between these needs and the real-life situation that is frequently encountered in ICUs throughout the country?
In his essay “Letting go,” Atul Gawande, MD, FACS, concluded that modern medicine, with its ability to maintain organ function in critically and terminally ill patients for weeks and months, has fundamentally changed the meaning of death.10 The process of dying has become a concept that can be hard to understand and no longer follows traditional knowledge and customs. Terminally ill patients and their families have to make treatment decisions regarding a disease process they may not understand, procedures they may be unable to pronounce, and survival statistics that may be disputed even among medical experts. Quite often, families must decipher terms and phrases, such as “full code,” “do not resuscitate,” “do not intubate,” “chest compressions,” and “vasopressors only.” They are expected to make decisions about tube feeds and other end-of-life procedures, and the reality is that all they want is what is “best” for the person they love.
Even physicians—guided by years of medical training and personal experience—are often wrong when estimating the prognosis of critical patients. Christakis and colleagues found that a mere 20 percent of physicians were correct in their prognosis for terminally ill patients, with physicians commonly overestimating survival by 530 percent.10 The closer physicians were to their patients, the more optimistic and incorrect they were in their prognosis.10 How, then, can families and relatives be expected to make rational and correct estimations in these situations?
Families tend to rely less on medical facts and more on their feelings and subjective impressions of a patient’s current state.12 Even when faced with dismal numbers about a patient’s prognosis, relatives tend to overestimate the chances for recovery, and frequently focus on individual reports about cases, in which prognosis and actual survival differed substantially.13 Depending on religion and spirituality, a significant number of people retain hope for a miracle that may alter their loved one’s clinical course.
Distrust and disbelief are common initial reactions when families are faced with a poor prognosis, and patients tend to believe that physicians offering a futility prognosis simply find the case beyond their scope of knowledge.14 This lack of trust may be exacerbated by today’s health care environment, where life-long physician-patient relationships and the presence of a single, trusted family physician are rare. More often, families face multiple, rotating ICU physicians who may give divergent explanations and opinions about a patient’s prognosis.
The consequences of treatments rendered in end-of-life care go beyond individual physicians, patients, and families. Health care resources are increasingly scarce, and interventions with little or no benefit impose a financial strain on an already heavily burdened heath care system and, eventually, on our entire society.
Outcomes and cost
Surgery is a costly treatment option. When employed in dire situations with little hope for longer-term success, such as in end-of-life-care, it often results in prolonged critical care, additional invasive interventions, and extensive rehabilitation. In younger patients, “heroic interventions” may be justified given the potential gain in remaining years of life, but are they justified for patients in their eighth, ninth, or tenth decade of life?
The remarkable advances of medicine in the last century have substantially increased life expectancy. This increase has produced new and challenging medical and surgical situations. At the same time, the population is aging, and there are fewer young people to contribute to the increasing cost of care for the elderly.
Nearly a third of Medicare beneficiaries undergo a major surgical procedure in the last year of life, and 18 percent undergo an operation in the last month of life.1 The provision of this level of care places a huge burden on the health care system and the national economy. Furthermore, these cases often require large resource use, which adds to the expense while offering potentially little benefit in terms of quality of life gained. An important factor to consider in these situations is the patient’s quality of life prior to surgical intervention. Although the term “elderly” typically applies to people 65 years or older, there can be a very big difference between a 65-year-old and an 85-year-old patient in terms of quality of life. Outcomes are going to vary based upon this age difference as evidenced in a study of colorectal cancer surgery in elderly patients. The patients classified as “oldest old,” age 85 or greater, had worse outcomes (specifically, 10-day mortality and length of stay) than elderly (age 65–85) and non-elderly patients, less than 65 years.15 (These results were for patients undergoing both elective and emergent surgery.)
Like all other patients, the elderly undergo operations in elective, urgent, and emergent situations. Each setting poses different clinical challenges for the surgeon, patient, and family. In emergent and life-threatening situations, the patient may be unable to participate in the decision-making process, and the family or surrogate decision maker may be unprepared to make life-or-death decisions on the patient’s behalf. A “do everything” mentality and plan often emerges in these situations, and subsequently 20 percent of Americans die in an ICU.16
Are there identifiable factors that the surgeon can use to predict whether the patient with an emergent surgical problem is likely to survive the procedure and, equally important, to determine the postoperative hospital care and possibly the long-term rehabilitation associated with survival? Lissauer and colleagues found a surprising answer to this question: severity of illness was not linked to care decisions made by family members in a surgical ICU.17 The patients that were either the sickest or the most likely to survive did not necessarily have corresponding decisions made by family members. These findings suggest that physicians and families have different criteria regarding care decisions at the end of life. Physicians assess clinical factors to determine likelihood of survival, while family members rely on other criteria not necessarily linked to the clinical condition of the patient. These factors are important, because nearly one-third of patients admitted to a surgical ICU will face an end-of-life decision.17
To better gauge the risks and benefits of surgery at the end of life, more data are necessary regarding patterns of care, cost of care, outcomes related to patient factors, and expectations of patients and their families. In the meantime, an honest and realistic conversation about the appropriateness of costly care to patients near to the end of life is crucial, and will, in turn, encourage additional data on this topic.
The armamentarium of modern medicine has provided physicians with the ability to treat even the most severe diseases and conditions. However, it has also created difficult ethical situations in which there is a discrepancy between what could be done and what should be done for patients with critical surgical conditions. Physicians, patients, and families may have differing perceptions of disease severity, prognosis, and plan of care. These situations represent a tremendously stressful and frustrating experience for patients, families, and health care providers. Decisions about end-of-life care touch the core values of medical care. Physicians involved in the care of severely ill patients need to find a balance between the principles of autonomy, requiring a physician to follow patients’ and families’ wishes, and beneficence, requiring a physician to explain why a treatment is unlikely to benefit a patient.
Advance care planning, an open dialogue about the goals of care, and early introduction of palliative care are key issues in the discussion about surgery at the end of life.18
- Kwok AC, Semel ME, Lipsitz SR, Bader AM, Barnato AE, Gawande AA, Jha AK. The intensity and variation of surgical care at the end of life: A retrospective cohort study. Lancet. 2011;378(9800):1408-1413.
- Detsky AS. What patients really want from health care. JAMA. 2011;306(22):2500-2501.
- Wennberg JE, Fisher ES, Skinner JS. Geography and the debate over Medicare reform. Health Aff (Millwood). 2002; July-Dec. Suppl Web Exclusives:W96-114.
- Emanuel EJ, Pearson SD. Physician autonomy and health care reform. JAMA. 2012;307(4):367-368.
- Brook RH. The role of physicians in controlling medical care costs and reducing waste. JAMA. 2011;306(6):650-651.
- Alonso A, Garcia LA. The costs of critical limb ischemia. Endovascular Today. 2011;2011(8):32-36.
- Brownlee S. What doctors know and we can learn about dying. Time. Available at: http://ideas.time.com/2012/01/16/what-doctors-know-and-we-can-learn-about-dying/. Accessed June 19, 2012.
- Heyland DK, Dodek P, Rocker G, Groll D, Gafni A, Pichora D, Shortt S, Tranmer J, Lazar N, Kutsogiannis J, Lam M; Canadian Researchers End-of-Life Network (CARENET).What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. CMAJ. 2006;174(5)627-633.
- Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R, Mor V. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291(1):88-93.
- Gawande A. Letting go. The New Yorker; August 2, 2010. Available at: http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande. Accessed May 30, 2012.
- Christakis NA, Lamont EB. Extent and determinants of error in doctors’ prognoses in terminally ill patients: Prospective cohort study. BMJ. 2000;320:469-472.
- Boyd EA, Lo B, Evans LR, Malvar G, Apatira L, Luce JM, White DB. “It’s not just what the doctor tells me”: Factors that influence surrogate decision-makers’ perceptions of prognosis. Crit Care Med. 2010;38(5):1270-1275.
- Lee Char SJ, Evans LR, Malvar GL, White DB. A randomized trial of two methods to disclose prognosis to surrogate decision makers in intensive care units. Am J Respir Crit Care Med. 2010;182(7):905-909.
- Zier LS, Burack JH, Micco G, Chipman AK, Frank JA, White DB. Surrogate decision makers’ responses to physicians’ predictions of medical futility. Chest. 2009;136(1):110-117.
- Al-Refaie WB, Parsons HM, Habermann EB, Kwaan M, Spencer MP, Henderson WG, Rothenberger DA. Operative outcomes beyond 30-day mortality: Colorectal cancer surgery in oldest old. Ann Surg. 2011;253(5):947-952.
- Angus DC, Barnato AE, Linde-Zwirble WT, Weissfeld LA, Watson RS, Rickert T, Rubenfeld GD. Use of intensive care at the end of life in the United States: An epidemiologic study. Crit Care Med. 2004;32(3):638-643.
- Meissner A, Genga KR, Studart FS, Settmacher U, Hofmann G, Reinhart K, Sakr Y. Epidemiology of and factors associated with end-of-life decisions in a surgical intensive care unit. Crit Care Med. 2010;38(4):1060-1068.
- Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.