Hospice Guidelines for End-Stage HIV & AIDS

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Are you a patient, family member, or caregiver? Learn about how VITAS can help patients with end-stage HIV and AIDS.

The development of new antiretroviral agents and the ability to better control opportunistic infections have shifted AIDS from a terminal to a chronic illness. More patients are living with HIV/AIDS. Even patients who present with low CD4 counts and high viral loads who have never been treated with antiviral therapy should be evaluated by an HIV specialist rather than referred to hospice. A medication regimen can change the progression of the illness.

End-stage HIV/AIDS patients are, in general, younger than the typical hospice patient but often have the diseases that are seen in older HIV-negative patients; they are said to have “early aging.” The co-morbidity that has been designated as the terminal illness could be anal or cervical cancer, lymphoma, advanced coronary disease, etc. But either long-term HIV or a side effect of the antiretroviral medication has put the patient at higher risk for developing the terminal illness.

What are the hospice eligibility guidelines for patients with end-stage HIV/AIDS?

Patients are considered in the terminal stage of their illness (life expectancy of six months or less) if they meet the following (1 and 2 must be present; factors from 3 will add supporting documentation):

1. CD4+ count <25 cells/mm3 or persistent viral load >100,000 copies/ml, plus one of the following:

  • CNS lymphoma
  • Untreated or not responsive to treatment; wasting (loss of 33% lean body mass)
  • Mycobacterium avium complex (MAC) bacteremia, untreated, unresponsive to treatment or treatment refused
  • Progressive multifocal leukoencephalopathy
  • Systemic lymphoma with advanced HIV disease and partial response to chemotherapy
  • Visceral Kaposi's sarcoma unresponsive to therapy
  • Renal failure in the absence of dialysis
  • Cryptosporidium infection
  • Toxoplasmosis unresponsive to therapy
  • Cytomegalovirus (CMV) infection

2. Decreased performance status of <50 as measured by the Karnofsky Performance Status (KPS) scale

3. Documentation of the following factors will support eligibility for hospice care:

  • Chronic persistent diarrhea for one year
  • Persistent serum albumin <2.5
  • Concomitant, active substance abuse
  • Age >50 years
  • Absence of antiretroviral, chemotherapeutic and prophylactic drug therapy related specifically to HIV disease
  • Advanced AIDS dementia complex
  • Toxoplasmosis
  • Congestive heart failure, symptomatic at rest

Some patients who do not meet the above guidelines may still be appropriate for hospice care because of other comorbidities or rapid decline. Coverage for these patients may be approved on an individual consideration basis.

The cause of death of HIV-infected patients in the HAART era is increasingly likely to be a chronic medical condition such as hepatic failure or malignancies, with traditional opportunistic infections (OIs) declining in importance.

In late-stage HIV-infected patients in an HIV palliative care program, the following three characteristics were more predictive of mortality than traditional HIV prognosis variables:

  • Decreased performance status as measured by the Karnovsky Performance Status scale
  • Impairments in activities of daily living (ADLs)
  • Age >65

Comorbid medical conditions and factors associated with shortened life expectancy:

  • Hepatitis B
  • Hepatitis C
  • Increasing age
  • History of smoking
  • End-stage organ failure
  • Diabetes
  • Non-AIDS-related cancers (such as lung cancer, Hodgkin's lymphoma)
  • IV drug use
  • Heart disease
  • CD4 persistently low (<25 cells/mm3)
  • High viral load despite combination therapy
  • Failure of optimized therapy and multi-drug resistance or failure
  • Desire to forgo more therapy
  • Significant wasting
  • Progressive multifocal leukoencephalopathy (PML)
  • Unresponsive Kaposi's sarcoma involving an organ
  • End-stage organ disease
  • Persistent diarrhea >1 year
  • Desire of patient for death

Diagnostic studies:

In the pre-HAART era, CD4 cell count <25 cells/mm3 and HIV viral load higher than 100,000 copies/ml were associated with higher mortality. In the post-HAART era, the proportion of deaths attributable to non-AIDS diseases has increased.

Patients dying from non-AIDS causes have been shown to have higher CD4 cell counts and longer time spent receiving HAART.

It is important to make sure that HIV-infected patients have had an opportunity to be seen by an HIV specialist and have been offered antiretroviral medications.

VITAS provides these guidelines as a convenient tool. They do not take the place of a physician's professional judgment.


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