Sick To Death > Chapter 3 > Hospice

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.


America's version of hospice services arose largely as a reaction to the inadequate care of the "dying" in the 1970s and early 1980s. Rather than let doctors and hospitals dominate care for these patients, hospice relied on community-based, volunteer, and family-centered care. At a time when cancer patients' pain was rarely treated adequately, hospice offered aggressive, around-the-clock pain management in the form of adequate doses of opioids and comfort measures for other symptoms. And at a time when the suffering brought by cancer, radiation, and chemotherapy made many patients wish for early death, hospice offered patients and families the opportunity to live on the patients' own terms. The results of this strategy were dramatic, with testimonials abounding as to its merits. When Medicare began to pay for hospice services in 1983 (42 CFR Part 418), the legislation clearly structured hospice as an alternative to conventional care. For example, the law required explicit and careful consent from patients, acknowledging that they were giving up "curative" treatment. Patients who transferred to hospice, and those who cared for them, viewed the transfer as a renunciation of the chance for cure and a clear shift toward accepting death.

In the twenty years since the Medicare hospice benefit was enacted, hospice has become a routine part of health care, at least for adults with terminal cancer. In 2002, about 25 percent of Americans who died used hospice (885,000 hospice users) for a median of twenty-six days (and a mean of fifty-one days) (National Hospice and Palliative Care Organization 2003a). Hospice care often enables people to die at home, the place most Americans say they would prefer to die (Gallup Organization 1996; Fried et al. 1999; Pritchard et al. 1998; Groth-Juncker and Mc- Cusker 1983). The Medicare hospice benefit requires an interdisciplinary team including at least a physician, a nurse, and a social worker to work with patients and families to articulate a care plan. While the hospice model of care has had only a little rigorous or generalizable evaluation, the public perception of hospice is strongly favorable.

Nevertheless, few people are aware of hospice or understand its benefits. Nearly 80 percent of Americans do not think of hospice as a choice for end-of-life care. Approximately 75 percent do not know that hospice care can be provided at home. More than 90 percent do not know that hospice provides pain relief for the terminally ill, or that Medicare pays for hospice (National Hospice and Palliative Care Organization 2003b). People who are aware of hospice usually think of its services as being a blessing in a desperate situation.

Hospice programs generally receive an all-inclusive per diem rate, about $100 per day for routine home care (National Hospice and Palliative Care Organization 2003b) and more for in-patient or extensive care. At least 80 percent of days must be at the basic home-care rate. Services usually include assessment and treatment by a nurse and physician, as well as home health care, social work, spiritual and bereavement counseling, pharmacy and durable medical equipment, and other therapies as appropriate. While Medicare officially classifies hospice as a fee-forservice benefit (paying a fee for a day of service), the programs operate with many characteristics of managed care - paying for services from a pool collected from per diem payments and controlling admissions and expenses to keep an operating margin in the pool of funds.

Under Medicare, hospice programs are effectively available to Medicare beneficiaries in all parts of the country (Hogan 2001). Hospice covers prescription medications that are related to the terminal illness (with a small co-pay), which creates inducements for patients to enroll and necessitates that hospices take steps to control medication expenditures in order to remain solvent. Indeed, many hospice programs will not pay for certain costly or invasive treatments, a position that may be rooted in hospice's philosophy of care but is certainly buttressed by the need to devise a workable business plan.

As it enters its third decade of service in the United States, hospice is stabilizing after several years of serious confrontation with fraud investigations, which originated from the Medicare requirement that patients have a prognosis of less than six months. Several years ago, the Office of the Inspector General (OIG) of the U.S. Department of Health and Human Services (1997) investigated several situations in which many patients in a program outlived their six-month prognosis. The OIG alleged that the hospice should have predicted long stays on the day of admission (and therefore should not have enrolled the patients). As a result of this investigation, some hospices and physicians have become more reluctant to risk enrolling patients whose prognoses are unclear.

Despite its many merits, the current hospice Medicare benefit puts the program out of reach for most of the time that patients are seriously ill with eventually fatal illnesses, in part because their prognoses are uncertain. In 2001, 54 percent of hospice deaths were cancer patients, with the remainder of hospice deaths largely distributed among five disease categories: heart disease (10 percent), dementia (7 percent), lung disease (6 percent), kidney disease (3 percent), and liver failure (2 percent) (National Hospice and Palliative Care Organization 2003b). Because patients in the second and third trajectories toward death (organ system failure, frailty and dementia, as discussed in chapter 2) often have virtually no period when it can be determined that they are very likely to die within six months, physicians do not think to refer them to hospice care. Indeed, the patients and their families are not likely to have a period when they see themselves as being appropriate for hospice care. Thus, although hospice is a valued model for the patients it serves, it cannot serve many individuals on many of the days when they could benefit from hospice's comprehensive, home-based services.

Support for the claim that hospice improves care consists mainly of anecdotal reports. One survey of family survivors attests to the merits of hospice services for nursing-home residents (Baer and Hanson 2000). Teno and colleagues (2004) reported that family members, about one year after the patient's death, remembered the time near death as much better supported when using hospice care at home than in all other settings. While some early and methodologically limited studies indicated that hospice use might save money (Mor and Kidder 1985; National Hospice Organization 1995), a recent study indicates that hospice tends to be cost-neutral for most cancer patients and cost-adding for most non- cancer patients (Campbell et al. 2004). Understanding the interactions of various service strategies for end-of-life care (including nursing facility, home care, hospital, and hospice) and defining the structures that optimally balance costs and outcomes would require focused studies that have not yet been undertaken.

Nevertheless, hospice experience to date shows that the public can accept - and even welcome - a program of care that focuses upon dying people and tries to support patients and families in the home. Hospice repeatedly demonstrates that paid and unpaid caregivers can be recruited and that they find such work to be rewarding. Many programs now recruit teenagers and older adults to assist their neighbors (National Coalition for Health Care and Institute for Healthcare Improvement 2000). Furthermore, the financial arrangements used in Medicare hospice may provide a model for structuring a new benefit for comprehensive home-care services to all people with serious, eventually fatal chronic illness (see trajectories of achievable excellence in chapter 5).

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