By Charlie Mach
Although recent healthcare reform in the United States aimed to cease rapidly increasing medical costs, the final legislation failed to adequately address one of the greatest contributors to such high costs: excess care received towards the end of life (EOL). Those in their last year of life account for only five percent of patients, yet they account for nearly one third of all healthcare expenditures (Wennberg et al. 2008). While much of these costs derive from life sustaining measures such as resuscitation and continuous aggressive treatment of terminally ill patients, some hospitals and regions spend more on this care than others, despite little evidence that amount spent translates to beneficial outcomes. Rather, aggressive treatment at the EOL greatly decreases patients’ quality of life (QOL) due to the frequency and duration of hospitalizations (Wright et al. 2010). Even with the knowledge that much unnecessary care is provided, it can be nearly impossible for physicians to distinguish between patients who will benefit from treatment and those who will not. This uncertainty of treatment results makes it increasingly important to tailor care according to patient preferences when determining a treatment path. Distraught and sometimes unable to grasp imminent death, patients, family members, and caregivers often fail to formulate a plan that actually serves the true desires of the patient, which may include hospice care, pain management and preservation of mental awareness, or exhaustion of treatment options. In many cases, higher healthcare spending does not fulfill its intended purpose of actually improving care, nor does higher spending equate to improved quality of life for the patients. In order to curb excessive costs associated with the EOL and to improve patients’ quality of life, patients and their families must be encouraged to confront death earlier, engage in discussions regarding the preferences of a near-death patient, and be thoroughly informed about potential benefits of hospice care.
Healthcare costs in the United States are the highest in the world and continue to increase, thereby threatening the economic stability of families and employers (Fisher et al. 2009). Costs at the EOL make up the greatest majority of these expenses as patients in their last two years of life account for 32% of all Medicare spending, with costs stemming from treatment fees and repeat hospitalizations (Wennberg et al. 2008). Considering seven out of ten people eventually die from chronic illness, (nearly all from a just a few illnesses including congestive heart failure, renal failure, and cancer) it is not surprising that the EOL is the source of greatest healthcare burden (Wennberg et al. 2008). Throughout the progression of chronic disease, “the amount of care delivered and the costs associated with this care increase dramatically” (Fisher et al. 2009, p. 1). Arguably, however, much of these costs are excessive and arise from unnecessary hospitalizations, tests, and procedures performed to prolong life as much as possible. Although it is clear that more spending occurs at the end of life, the relationship between the amount spent and the beneficial outcomes remains uncertain.
While it is commonly held that more tests and treatments, thus higher spending, would likely result in greater prolongation of useful life, this relationship is not necessarily the case. Instead, geographic spending differences show little correlation between amount spent and beneficial outcomes. The 2008 Dartmouth Atlas’s report on care of patients with chronic illness revealed that higher EOL spending in certain regions was explained by the increased amount of optional care provided, not accounted for by price variation or rates of certain illnesses as claimed by some hypotheses (Wenneberg et al. 2008). In areas where medical resources, particularly physicians and hospital beds, were in greater supply per capita, patients were hospitalized more often and received more diagnostic tests than identical patients in lower spending regions (Fisher et al. 2009). This is evident by comparing the differences between Los Angeles hospitals, which rank nationally among the highest in spending, and the Mayo Clinic hospitals in Minnesota. For example, one LA hospital cost Medicare an average of $98,315 per patient in their last two years of life, which was 96 percent more expensive than Mayo’s $50,273 per patient. At the most conservatively spending LA hospitals, patient visits, days spent in the hospital, and days spent in ICU during the last six months of life exceeded the Mayo’s standard by 161 percent, 53 percent, and 144 percent, respectively. Even these hospitals, which are considered efficient by regional standards, “are providing more care (higher volume) than necessary according to the practice patterns and per patient utilization of resources set by some of America’s most prestigious organized health care systems” (Wenneberg et al. 2008, p. 90). In addition, higher spending in LA hospitals was correlated with higher mortality rates after myocardial infarction, hip fracture, and colorectal cancer diagnosis (Wenneberg et al. 2008). Evidently, elevated spending on care does not result in improved health outcomes, but instead, often results in more distress at the end of life from aggressive treatment and prolonged hospital stays.
Critics of the Dartmouth Atlas’s report devalue the study because it solely analyzes the survival time and costs of patients who have died, but ignores the smaller populations who survive longer. This critique follows reasoning that physicians must look at cases in which patients survived for extensive periods in order to recognize whether it might be reasonable to spend more on certain cases over others. Studies seeking to test this hypothesis indeed showed that survival times were increased when more money was spent on one faction of patients: those with heart failure. Institutions that spent “the most on heart failure patients had one-third fewer deaths after six months of an initial hospital stay” (Abelson 2007). While in certain cases, more spending undoubtedly can result in better outcomes, more similar research is needed to examine specific illnesses as hospitals have yet to show that, in general, more spending results in more successful care (Abelson 2007).
In most cases, not only does higher healthcare spending not fulfill its intended purpose of improving care, but it is also correlated with a worse quality of life in patients nearing death. Patients who spend more on care tend to follow aggressive treatment plans by visiting many specialists, receiving more experimental therapies, and more frequently utilizing life-prolonging interventions such as electrical defibrillation and ventilators. Studies show that patients receiving this type of care experience more severe pain, anxiety, and discomfort leading up to death than patients not receiving such interventions. In addition, these patients are much more likely to die in a hospital or ICU, unable to experience the comfort of family members (Wright et al. 2010). Interviews with families and caregivers of patients post-death revealed that those who died in either location had worse QOL and more physical and emotional distress at the EOL than those who died at home (Wright et al. 2010). Dying in the place of one’s choice is considered an important measure of the effectiveness of EOL care. Currently, between 56-74% of the population prefer to die at home (Bowers et al. 2009). However, few actually do as chronic diseases can cause swift and unexpected organ failure, often when it is too late to address specific priorities of patients. Instead, over half of terminal patients who wish to not die in the hospital still do (Bowers et al. 2009). Moreover, studies show that the family members and caregivers of patients who have died in a hospital or ICU setting are at increased risk of developing major depression or other psychiatric related illnesses (Wright et al. 2010). More money spent on life-prolonging care, likely from following aggressive treatment plans, often prolongs the uncomfortable process of dying by worsening patients quality of life and imposes more stress on the families and caregivers involved.
Despite possible negative impacts of undergoing aggressive treatment, it is difficult for patients and physicians to decide when the focus of treatment should transition from curative to palliative. The inaccuracy of doctors’ survival time estimates is a strong indicator of this challenge. In a study examining these estimates, physicians overestimated survival time 63 percent of the time and underestimated 17 percent of the time; the average estimate being 530 percent too high (Gawande 2010). Because of the noticeable uncertainty in predicting the length of a patient’s remaining life and the potential suddenness of death, it is difficult to gauge when curative treatments are more likely to diminish health than restore it and whether these therapies should be administered regardless. Doctors may recognize when curing a disease or prolonging life is no longer a reasonable goal, but often continue to offer treatments, despite possible dangerous side effects and unexpected efficacy. This practice is particularly evident in the treatment of cancer as nearly 40 percent of oncologists report having offered a therapy they believed was unlikely to subside tumors or cure the disease (Gawande 2010). Doctors provide such treatments because they are reluctant to devalue patient optimism. Similarly, patients who are sometimes unable to grasp the probability of death, frequently endure aggressive treatments in hopes of fighting off their disease. Many patients view undergoing chemotherapy and experimental therapies as representations of tenacity and hope. As a result, they are hesitant to reduce curative therapies in favor of pain management therapies, which represent a more ominous prognosis. Some patients may also be influenced to continue treatment as to not disappoint family members, thus increasing likelihood of death in a hospital or ICU#. In situations where doctors have closer personal relationships with their terminal patients, they often provide an array of curative treatments , revealing that doctors also struggle to accept imminent death. The inability of caregivers and patients to recognize when care is detrimental significantly contributes to the excessive use of aggressive treatments.
Despite little evidence of improved outcomes, terminal patients are receiving increasingly aggressive care at the EOL, often resulting in increased pain, anxiety and discomfort. Using palliative care instead of aggressive curative procedures, a set of services called hospice care can alleviate some of these problems (Wright et al. 2010). Often, the type of care patients prefer changes as their diseases progress. Those who decide that further curative attempts are unreasonable switch their focus to minimizing suffering and maximizing remaining lifetime. Although these needs can be somewhat addressed in a hospital setting, hospice care is specifically designed to help dying patients cope with the EOL and satisfy their wishes. This type of care, also referred to as palliative care, addresses the physical, psychological, and spiritual needs towards the end of life. While hospice care traditionally strives to control pain resulting from terminal illness and to control anxiety associated with death, it is often misunderstood as abandoning treatment in favor of high doses of narcotics. However, it ideally consists of frequent contact with doctors, nurses, and social workers who track individual treatment pathways and adjust care according to changing needs (Bowers et al. 2009). These caregivers focus on lessening pain and discomfort, maintaining mental awareness for as long as possible, and performing regular activities with family (Gawande 2010). Hospice care serves patients so that they can live more normally outside of medical centers.
Aside from lessoning pain and increasing comfort, a major objective of hospice programs is to enable patients to die at home if they desire to do so. This is accomplished through integrated services in which hospice teams provide home symptom management. This includes anticipating pain or other complications, providing “just in case” drugs, delivering home crisis intervention via on call nurses, and offering psychosocial support during one of the most difficult and emotionally demanding phases of the patient’s illness (Bowers et al. 2009, Carlson et al. 2010). Without these services, patients end up paying for unnecessary hospital visits for care they may not even want because they are unable to manage their illness at home. After surveying families of patients, it was determined that patients who died at home with hospice services had fewer unmet needs at the end of life (Wright et al. 2010). These elements of hospice care alleviate much of the care-giving burden placed on family members and reduce patients’ anxiety.
Hospice care teams are not particularly concerned with extending life, nevertheless this may be inadvertently accomplished. In one study that followed 4,493 Medicare patients with either terminal cancer or congestive heart failure, researchers found no difference in survival time between hospice and non-hospice patients. Surprisingly, hospice patients with lung cancer and congestive heart failure actually outlived their non-hospice counterparts by six weeks and three months, respectively (Gawande 2010). In addition, even for patients who outlive the norm, costs associated with hospice care are much lower than those from hospitalization. This is evident in the expenditures of patients who disenroll from hospice. Between 11-15% of cancer patients, for example, disenroll for varying reasons from dissatisfaction with care to admission to hospitals lacking hospice contracts. Per day expenditures for patients who stop hospice care were $124 higher on average than patients who remained in hospice. The average expenditures for individuals who stayed in hospice were $6,537 while the expenditures for those who disenrolled were $30,848 (Carlson et al. 2010). These large spending differences were due to significantly higher healthcare usages, as disenrolled patients were 40 percent more likely to be hospitalized and more frequently died in the hospital. Hospice utilization has the potential to enhance patients’ quality of life, minimize stress on family members, and decrease costs associated with the EOL.
Despite the apparent benefits of hospice care over aggressive treatment, it, too, has its limitations. Generally, to qualify for hospice, a doctor must certify that a patient has six months or less to live. However, because determining how long a patient will survive is an inaccurate estimation, inevitably there are patients who do not qualify, but could have benefited from hospice, and others who survive longer than expected. Although patients who outlive the requirement have the ability to get their eligibility re-accredited, hospices themselves are punished financially when they have too many patients exceeding the six-month limit. As a result, hospices are sometimes hesitant to reinstate these patients (Harding 2008). Another concern with hospice care is that patients often enroll too close to the end of life. As its care focuses on social services in addition to administration of symptom managing drugs, it takes persistent effort over time to manage anxiety or depression and sort through family related issues. Studies show that many patients enter hospice programs very late into the progression of their disease as “one-quarter of patients were in hospice for seven days or less, which is too brief to maximize the benefit of enrollment” (Harding 2008, p.1). While emphasizing the importance of enrolling in hospice earlier, this shows that patients often do not opt for hospice until their symptoms are unmanageable near the end of life. Strict hospice care requirements may hinder its potential ability to aid patients.
Although choosing between treatment paths (aggressive versus palliative) is ultimately not up to doctors, patients’ decisions are greatly influenced by their discussions with doctors. Commonly, patients undergo aggressive treatment for longer than they desire because their goals at the EOL are not clearly articulated. In fact, many patients report not even having conversations with their doctors about the end of life, suggesting