Quo Vadis ICU Hospitalization for End-of-Life Care?
Author Affiliations: Dr. Finestone is Director, Institute on Aging, Adjunct Professor of Medicine, Associate Dean, CME, Emeritus at Temple University School of Medicine, and Consortium Project Director, Geriatric Education Center/PA; Ms. Inderwies is Medical Director of Keystone Hospice, Wyndmoor, PA.
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We all recognize the 100% mortality in this world. Care for the dying is a complex enterprise that must involve multiple professionals and nonprofessionals. The physical, emotional, and social needs of the dying person are addressed by acknowledging the fear, anxiety, loneliness, and isolation that is experienced during an end-stage illness.
The association of hospice with death is a major impediment to hospice enrollments, as fear of death is a pervasive human emotion. Palliative care and hospice patients are often not capable of engaging in the types of interactions required to make end-of-life choices independently, and the influence of others is crucial both physically and psychologically. The role of family in the choice of, and evaluation of, hospice care has long been recognized.1
However, next to the influence of friends and relatives, healthcare professionals are logically the most influential group during end-of-life decisions. It has been suggested that quality of end-of-life care results when, among other things, healthcare professionals promote shared decision-making.2 Advising hospice by a physician in many instances is an admission of failure. In addition, at times, morbidity and mortality conferences evolve into “Why did the patient die?” Many years ago during my fellowship in Pathology, I (AJF) would carefully look for a patch of pneumonia for a cause of death. The concept of multiple-organ failure was not in current use then. It is still difficult for many physicians to say that death is coming and that hospice is a good choice.
The hospice concept was pioneered in 1967 by English physician, nurse, and social worker Dr. Dame Cicely Saunders. In the United States, the hospice movement emerged in the mid-1970s. In 1982, Congress initiated the hospice benefit under the Tax Equity and Fiscal Responsibility Act (TEFRA), a landmark public policy decision to include hospice care in the Medicare program. Hospice core services include professional nursing care, personal assistance with activities of daily living, various forms of rehabilitation therapy, dietary counseling, psychosocial and spiritual counseling for both patient and family, volunteer services, respite care, provision of medical drugs and devices necessary for palliative care, and family bereavement services following the patient’s death. Hospice care is provided by an interdisciplinary care team comprised of nurses, social workers, pastoral counselors, nursing assistants, and other healthcare professionals under the management of the patient’s own primary care physician or one affiliated directly with hospice program.
There is ample evidence to support a higher quality of life in hospice patients as compared with terminally ill patients in the hospital setting. Numerous studies evaluating quality of end-of-life in settings other than the hospital show that family members are consistently more likely to report a favorable dying experience of the decedent when hospice or palliative care is chosen as compared with hospitalization.3-6 There is growing evidence that hospice provides high-quality care with high consumer satisfaction.7 Research has suggested that for certain diagnoses such as congestive heart failure, when compared with patients who do not choose hospice care, hospice patients live longer for an average of 29 days,8 and hospice care may be associated with a modest cost savings.9
Most elderly patients are eligible for Medicare Hospice Benefits. For an individual to be elected for hospice care, a physician must certify that the patient is likely to die within 6 months if the terminal disease follows its anticipated course. The patient or the patient’s representative in turn agrees to waive all other Medicare coverage related to the terminal illness under Part A, which is Medicare Hospital Benefits. A hospice patient’s primary physician can bill under Medicare Part B. Hospice patients may be hospitalized for a brief period of time. Medicare payment for hospice requires that a patient be reassessed periodically, initially after each of the first two 90-day periods, and then 60 days after that to document continued decline in condition and to determine whether hospice care continues to be appropriate.
Despite the clear advantages in quality of life for terminally ill patients, and the cost benefits associated with palliative and hospice care, the decision to utilize hospice is made by only an estimated fraction of the patients who stand to benefit. Only approximately 20-25% of people who die in the United States utilize hospice services.10-11 The median utilization of hospice is only 22 days, and more than one-third of hospice patients receive fewer than 8 days of services.12 Ten percent of hospice patients are enrolled in the last 24 hours of their life (National Hospice and Palliative Care Organization, 2006; National Trend study, 2004).13 More than one-third of patients receiving hospice care in 2002 were over age 85 years, and the overwhelming majority (82%) were white.13 There is, therefore, clear evidence that hospice is poorly utilized in the United States, and that this underutilization is at least partially dependent upon demographic factors that include race or ethnicity, misconceptions of financial and eligibility requirements, and difficulty in discussing or accepting hospice as a treatment option.
Many studies report the observation that minority groups are less likely than white Americans to benefit from hospice or palliative care. African Americans and Latinos are more likely to die at home than European Americans, but are significantly less likely to receive hospice care.14 During the period 1995 to 2001, the use of hospice services by African Americans and Latinos was significantly less than by European Americans, and, though European American use of hospice increased during this period, African American use actually decreased.15 The difference appears to be when end-of-life decision-making is initiated. When ethnic groups who choose to use hospice were compared in one study, there were no differences between European Americans and Latino patients in average duration of hospice use; African Americans utilized hospice, on average, longer than either of the other groups. Furthermore, there was no greater likelihood that services would be terminated prematurely among ethnic minorities when compared with European Americans.16
An important recent report by Kapo and co-investigators17 suggests that the return rate to hospice may be lower in African Americans as compared with all other users. Regarding elderly minorities, this group was more likely to die in an inpatient setting than their European counterparts.16
A large number of factors have been identified for the underutilization of hospice by ethnic minorities and greater utilization of inpatient settings by elderly minorities. Some of the differences in the making of end-of-life decisions may be related to associated or indirect factors, such as differences in the availability of a full-time caregiver, marital status, general economic or educational status, or language use.15 However, a large number of cultural and social factors that are race- or ethno-specific have also been identified as possible determinants of hospice underutilization. These include a lack of knowledge of hospice, cultural or religious beliefs about end of life and death, the desire for autonomy, and, importantly, perceptions and mistrust of healthcare and healthcare professionals (especially among African Americans).18-25
These ethnic, social, and cultural complexities in end-of-life perceptions place a burden on healthcare professionals to remain sensitive to diverse factors during clinical decision-making. However, it is poorly understood how physicians, nurses, and other healthcare professionals working specifically within racially diverse, low-income communities view their roles in this process.
Because life expectancy for patients with most end-stage diseases cannot be predicted with specificity, there has been a recent focus on how the Medicare-mandated assignment of a 6-month timeframe, as discussed previously, has itself become a barrier to care.7
As previously noted, the culture of medicine is that physicians and other healthcare professionals are trained to prolong life; therefore, referral to hospice may be viewed as a medical failure or as depriving patients of hope. There are consumer barriers to access to hospice, with various attitudes and misinformation, including that they must forgo all treatment. The National Hospice Foundation reveals that 75% of Americans do not know that hospice care can be provided in the home, and 90% do not realize that hospice care is fully covered through Medicare.
Finally, a recent study reported in The New York Times finds that New York City hospitals differ on care at life’s end.26 Most elderly patients in their last two years of life have more intensive treatment, more tests, more days of hospitalization, and more out-of-pocket costs at private teaching hospitals than their counterparts at the city’s municipal hospitals. In this same article, studies are cited that, in general, less-aggressive treatment does not change the outcome, but spares the agony of unnecessary tests and reduces the risk of hospital-borne infections—another compelling argument against end-of-life care in the ICU.
Conclusion
Providers and patients must recognize that death is inevitable. Hospice should not be viewed as care of last resort but rather as an alternative option that comes after aggressive treatment of the terminal illness has failed. Unfortunately, many Americans have their access to hospice and other forms of palliative care blocked by lack of information, misunderstanding, financial limitation, and other less tangible factors, including fear. This summary has addressed some of the issues preventing more wide-spread use of this valuable palliative and hospice care option.
The authors report no relevant financial relationships.
