Since 1982, when Congress created the Medicare Hospice Benefit, home hospice has been broadly available in the US for the care of patients with advanced illnesses who have about 6 months left to live. National guidelines have consistently suggested that referral for hospice care is the best approach for medical management of patients with end-of-life needs, yet only about half of all cancer patients who die are ever referred for such care.[1-3] Patients referred to hospice often live for only a few days, thereby undermining the potential benefits to patients and their families of a concerted approach to care by the hospice team over a lengthier period of time.
How can it be that hospice care is beneficial for cancer patients nearing the end of life but remains underutilized? The purpose of this article is to examine this quality-of-care conundrum. First we will review the patterns of cancer care near the end of life in the US, focusing particularly on the behavior of oncologists. Then we will contrast this approach with what patients and their families say they want from their oncologists during this period. We will then review what an oncologist needs to know to determine the right time to refer a patient for hospice care and what this service can offer patients with cancer and their families. Finally, for oncologists who may need to hone this skill, we will describe an approach to structuring the physician-patient conversation regarding hospice care.
Patterns of End-of-Life Cancer Care in the US
The overall pattern of care at the end of life for patients with advanced cancer has not changed much since the war on cancer was first declared in the early 1970s. While it is true that overall mortality from cancer has gradually declined in recent years, this improvement is mostly due to prevention (smoking), early detection of surgically removable malignancies (eg, breast cancer), or early detection of malignancies that, if left undetected, would not have affected mortality (eg, prostate cancer). For cancer that has recurred, or is surgically unresectable, the overall mortality curve is unchanged.
What has changed is the amount of chemotherapy and the increased sophistication of radiotherapy administered to patients prior to death. While a great number of newer chemotherapy agents can yield a temporary radiological response in a wide array of tumors, there has been little change in clinical status or overall mortality. The existence of those agents has increased the complexity of treatment-goal discussions for this patient group, however. Whereas there may have been only a single chemotherapy for certain clinical situations in the past, there may now be a series of "salvage" regimens available. These agents are often reported by the media or advertised to patients (on television, via the internet) as a promising new advance in cancer care. Even when their clinical status has begun to wane, patients will pursue salvage regimens with the hope of response. Sadly, for patients with extensive disease, there is generally a low response rate and no change in life expectancy with most salvage regimens. Some oncologists point out that the very act of delivering chemotherapy eases the psychological pain of many patients, and that patients will seek out a physician who will pursue their continued wish to fight cancer. In other words, the path of least resistance for some oncologists may involve delivery of chemotherapy as a type of "placebo" rather than engaging in a lengthy, honest, and emotionally draining discussion about prognosis with the patient and family. Further, oncology training in the US lacks instruction about how to have these difficult conversations, though they are so common in routine practice. Patterns for the delivery of radiotherapy near the end of life are similar.
Many oncologists wait until the patient becomes "symptomatic" before discussing explicit aspects of end-of-life care, even when it is clear that the cancer will be life-limiting. As shown in Table 1, for the majority of patients with chemotherapy-refractory solid tumors, the period between "becoming symptomatic" with poor performance status and the death of the patient is 4 to 6 weeks. These poor-prognosis patients have always been excluded from clinical trials. Patients appear to be unwilling to "give up" chemotherapy unless the oncologist is explicit about prognosis and the likelihood that chemotherapy or radiotherapy will change the prognosis.[10,11] When therapy risks might outweigh the benefits, patients say they want to know.[12,13]
Patients need accurate information about whether the treatment will help them to achieve their goals near the end of life. Patients have described five domains of quality end-of-life care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. These goals may be met only when the prognosis is fully disclosed. Cancer prognostic factors are not easy to find; the standard textbooks do not codify that information in predictable, easy-to-find ways. However, Table 1 includes prognostic facts about patients with advanced cancers.
What Hospice Care Offers in the United States
Hospice care is enhanced palliative care for patients with advanced cancer as they approach the end of their lives. In the US, this is conventionally defined as a likely life expectancy of 6 months, if the disease runs its usual course. In the US, about 80% of hospice care is paid for by Medicare, the federal system of healthcare coverage for the elderly and the disabled. The MHB pays for comprehensive medical, nursing, counseling, and bereavement services provided to patients living with advanced illness and to their families (Table 2). These services are provided by an interdisciplinary team which meets at least every other week to review the plan of care and its effectiveness in advancing the goals expressed by the patient, family, and other caregivers. As a generalization, about 95% of hospice care is provided where a patient lives (either at home or in a long-term-care facility). These services can also be provided in an inpatient hospice unit or a hospital.
Although hospice provides end-of-life care, referral for hospice care does not shorten life expectancy. For certain diagnoses, hospice enrollment is actually associated with longer survival times. For instance, patients with newly diagnosed non–small-cell lung cancer show a longer median survival time, increased quality of life, decreased chemotherapy use, and longer hospice stay when palliative care is instituted early in their disease trajectory.
In addition to benefits to patients, the Center to Advance Palliative Care (www.CAPC.org) summarizes benefits to physicians for referral of patients for hospice care. These include fewer disruptions to their schedules for the management of patients at home, reduced conflict with patients and families, and avoidance of the need to learn new codes and bill for the necessary prolonged medical services. Importantly, hospice care, with its special expertise, has been demonstrated to be superior to standard end-of-life care.
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