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When curative and life-extending therapy is felt to be futile, hospice has a great deal to offer patients, as well as their families and caregivers, with palliative therapy and end-of-life care. More than 1.3 million patients in the US had received services from hospice in 2006, a 162% increase from 1996, with a median length of stay of 20.6 days.1 Nearly three fourths of hospice patients will die in a private residence, nursing home, or other residential facility, compared with the general population, where close to 50% die in acute care hospitals.2 Forty-four percent of the hospice population is made up of patients with cancer.1 Reports have shown that median lengths of stay in hospice are shorter in the population of patients with cancer than for those with other diagnoses. This may be in part due to some barriers to hospice referral by clinical oncologists until the end of a disease trajectory is clearly obvious. This article is written to review the eligibility criteria for entry to hospice, to describe the process of hospice referral, and to suggest the characteristics to evaluate when choosing a hospice.
Hospice care may be appropriate for any person who has a life-limiting or terminal diagnosis. For a patient to be eligible for hospice, most payers require a prognosis of 6 months or less, if their illness would run its normal course. Though accurate prognostication may be challenging, the concepts of and potential for hospice and palliative care are best brought up early after the establishment that an illness may be terminal. If a patient is competent, then it needs to be the patient's decision to make if hospice is to be chosen. The patient should be educated to understand that the choice for hospice care is not irrevocable, and that they may change their mind about staying in hospice if circumstances should change, or, in fact, for any reason at all. The referring physician needs to certify, in her best estimation, that if a patient's disease follows its expected course, her life expectancy would be 6 months or less. Hospice care can go on for longer than 6 months, but for eligibility issues, one simply needs to consider the normal trajectory of a patient's disease process. Two independent physicians are needed to certify a patient's appropriateness for hospice. If a patient has not seen a physician for several years, then the hospice physician may certify a patient's eligibility for hospice on her own. A Certification of Terminal Illness form needs to be filled out for Medicare eligibility. Currently, there are two initial 90-day benefit periods followed by an unlimited number of 60-day periods, with each period requiring physician re-certification.
Oncologists often overestimate the life expectancy of their patients. Many patients also perceive a recommendation for hospice as a sign that their medical team has given up, or has nothing more to offer. A physician should educate their patient about their prognosis, and to accentuate that there is something more to offer—that hospice care includes assertive treatment aimed at relieving symptoms and promoting comfort. The framework of the Hospice Medicare Benefit has also acted as a barrier between the specialties of oncology and hospice and palliative care. Although the benefit allows a per diem of around $130 for the hospice to provide all necessary home care (including nursing visits, medical supplies, and medication), active oncology treatment often costs multiple thousands of dollars. There is an obvious monetary disincentive for hospice programs to refer patients for anti-cancer systemic therapy or radiation therapy. Being mindful of this situation, some oncologists may try to have their patient's full course of active treatment completed before enrolling them in hospice.
The steps involved in the referral process to hospice are straightforward. The patient, her family or caregivers, and/or physician, would identify that a hospice referral might be appropriate. If the patient lives in a geographic area with access to more than one hospice, the patient needs to be given information to make an informed choice about the various hospice providers. The health care provider will usually contact the hospice program to initiate the referral process, and then an initial evaluation is performed to assess needs and create a care plan.
At times it is unclear as to whether a patient should be referred for home care or hospice. The criteria for hospice referral are stricter than for home care. However, there are some other important differences. Home care is billed as fee for service. Medication costs are not covered by home care, and home care providers address only the patient's needs in their visits. By contrast, if the patient is admitted to hospice, all necessary care should be covered by the per diem, including medication costs, and the hospice team provides emotional support to the family of the patient, as well as, in the case of the Hospice Medicare Benefit, bereavement care for 13 months after the death of their loved one. The hospice team generally includes nurses, social workers, aides, and commonly involves specially trained volunteers.
The circumstances that lead a patient and their family to seek hospice care are often fraught with fear and confusion. As such, the stresses that accompany choosing a hospice at the time of need may feel daunting. Choosing to enter hospice can be made easier by thorough and open discussions of all of a patient's issues and concerns at the initial evaluation. The patient and her family should inquire about the level of care available, particularly as related to the frequency and length of nursing visits. It is important to know the rapidity of response to a crises—the average and maximum times of response, as well as the far range of the nurse on call—what is the farthest distance the on call nurse would have to travel to get to the patient. Other points to consider include the provision of ancillary services, such as massage therapy, and whether the hospice will allow “open access” for outside caregivers and active treatment specific to the needs of those with the admitting diagnosis. The patient should be made aware of other environments where hospice may be delivered, such as in a nursing home or at an inpatient hospice facility. Furthermore, the hospice should be forthcoming about the financial arrangements with the patient's admission to hospice— is the hospice Medicare certified, given that the Hospice Medicare Benefit is only available through approved providers, whether insurance assignment is accepted, or whether supplemental payments are required. (Five out of six hospice patients are served by Hospice Medicare.) Hospice care provides an opportunity for a milieu that promotes expeditious symptom control and emotional support for patients with terminal illnesses. Families of those who have died in hospice consistently rate their acceptance of that loss as much more tolerable than if hospice was not involved. The full benefits of hospice may be enhanced when the option for entering hospice is made earlier; when the futility of active care is realized. There are significant advantages to having hospice initially involoved in a controlled situation rather than a crisis. It is better to have an ongoing working relationship with the hospice team than to expect them to make their assessments and interventions on an emergent basis.
Hospice referral is an important part of oncology care. It is a skill that all oncologists should master.
Examples of sources of information on the Internet:
For professionals:American Academy of Hospice and Palliative Medicine: www.aahpm.org
For professionals and patients: National Organization of Hospice and Palliative Medicine Organization: www.nhpco.org.
For further lay information on how to choose a hospice: www.hospiceblog.org.