AIDS guidelines altered as drugs change prognoses
NHO warns of potential limitations
In recent years Health Care Financing Administration (HCFA), the funding arm for Medicare and Medicaid, has cast a watchful eye over hospice admissions to determine whether patients truly fit the six-month terminal diagnosis criterion. Now, as hospice managers struggle to predict uncertain deaths for many patients, a new drug therapy for AIDS patients is further complicating the issue. From case managers to physicians, almost everyone agrees that determining how long an AIDS patient taking protease inhibitor drugs will live is virtually impossible.
Responding to industry and HCFA concerns, the National Hospice Organization (NHO) in Arlington, VA, recently revised its medical guidelines for prognosis in non-cancer patients. The new guidelines include criteria for AIDS patients.
"The will of the patient is the most important variable," maintains Carla Alexander, MD, medical director of the Johns Hopkins Home Hospice Program in Baltimore and a member of the NHO standards and accreditation committee that developed the guidelines. The guidelines should be viewed in a general sense only, and should not be used as a definitive reason for either admitting or not admitting an AIDS patient to a hospice program, she cautions.
The guidelines for prognosis in patients with HIV disease include a list of life-threatening complications, with median survival time for each. The following HIV-related opportunistic diseases all are associated with prognoses of less than six months. Note that prognoses may be longer for certain conditions if the patient elects treatment. The diseases and prognosis are as follows:
• CNS lymphoma 2.5 months;
• progressive multifocal leukoencephalopathy 4 months;
• cryptosporidiosis 5 months;
• MAC bacteremia, untreated less than 6 months;
• visceral Kaposi’s sarcoma unresponsive to therapy 6 month mortality 50%;
• renal failure, refuses or fails dialysis less than 6 months;
• advanced AIDS dementia complex 6 months;
• toxoplasmosis 6 months.
The following factors have been shown to decrease survival significantly and should be documented if present:
• chronic persistent diarrhea for one year, regardless of etiology;
• persistent serum albumin less than 2.5 gm/dl;
• concomitant substance abuse;
• age greater than 50;
• decisions to forego antiretroviral, chemotherapeutic, and prophylactic drug therapy related specifically to HIV disease;
• congestive heart failure, symptomatic at rest.
The prognosis criteria for HIV disease should be used together with general guidelines for determining prognosis and whether a patient is appropriate for hospice care and/or eligible for the Medicare/Medicaid hospice benefit. These general guidelines refer to all patients referred to hospice and are summarized as follows:
• The patient’s condition is life-limiting, and the patient and/or family have been informed of this determination.
• The patient and/or family have elected treatment goals directed toward relief of symptoms, rather than cure of the underlying disease.
• The patient has either a documented clinical progression of disease or a documented recent impaired nutritional status related to the terminal process.
Guidelines must be applied cautiously
In making the revised guidelines for prognosis, the NHO committee emphasizes that the guidelines are limited in nature and practice, and should be applied to individual cases cautiously. Clinical judgment must always be applied in individual cases to supplement the guidelines.
The following is a synopsis of potential limitations:
• The six-month definition of terminal illness adopted for the Medicare hospice benefit is not proven in large populations of hospice patients.
• Any individual who meets criteria may respond in an unpredictable way and experience unexpected outcomes. Guidelines must be applied upon admission and at intervals throughout the course of the patient’s stay in hospice.
• Prognosis is based on studies that pool patients in all stages of diseases, as well as patients who received standard medical therapy when they became acutely ill. Therefore, the results are not totally conclusive.
• The course of most non-cancer disease is inherently difficult to predict. Hospice intervention may bring about a prolongation of the terminal phase due to improved patient compliance, symptom control, and prevention of complications.
• Hospice often extends the life of the non-cancer patient in the act of palliating symptoms. Conditions can stabilize and the patient may survive longer.
Finally, the NHO report says: Frequent clinical reassessment decisions concerning recertification versus possible discharge from the Medicare/ Medicaid hospice benefit, thorough documentation of medical evidence of continued disease progression and cooperative review of appropriateness of care with intermediaries are all important ongoing considerations.
Source: National Hospice Organization. Medical Guidelines for Determining Prognosis in Selected Non-cancer Diseases. Second edition, 1996. To order a copy of the complete guidelines, contact: NHO Store at (800) 646-6460. Item No. 713008. Cost: $11.85 plus shipping and handling.
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