End-of-life HIV & AIDS: What to Expect

End of life in individuals with HIV and AIDS can present unique challenges, both physically and emotionally. As the disease progresses to its advanced stages, patients may experience a range of symptoms and complications. Common symptoms at end of life for individuals with HIV and AIDS include severe fatigue, unintended weight loss, chronic pain, persistent infections, recurrent fevers, night sweats, and gastrointestinal issues. Moreover, as the immune system becomes severely compromised, opportunistic infections and certain cancers may arise. Emotional distress, anxiety, depression, and social isolation are also common during this stage. The combination of these symptoms and the progressive decline in overall health can greatly impact the quality of life for individuals with end-stage HIV and AIDS.

During this difficult time, hospice care offers invaluable support for individuals with end-stage HIV and AIDS and their loved ones. Hospice teams specialize in managing the complex physical and emotional needs associated with advanced HIV and AIDS. They provide expert symptom management, such as pain control, medication adjustments, and supportive therapies to alleviate discomfort and enhance quality of life. Hospice professionals offer compassionate emotional support, counseling, and guidance to address the psychological challenges that arise during this stage. They also collaborate closely with the patient’s healthcare providers to ensure coordinated care and appropriate medical interventions.

Hospice care extends its support to the family as well, providing respite care, bereavement services, and assistance with practical matters. They help facilitate open communication, assist in end-of-life planning, and offer guidance on complex medical decisions. By addressing the physical, emotional, and practical needs of individuals with end-stage HIV and AIDS, hospice care helps enhance their comfort, dignity, and overall well-being. Hospice teams work tirelessly to ensure that individuals and their families receive the necessary support and resources to navigate this challenging phase with compassion and respect.

Hospice Eligibility Guidelines for Individuals with HIV and AIDS

We understand that navigating the complexities of hospice care can be overwhelming, especially with HIV and AIDS. This page aims to provide you with a comprehensive guide to the eligibility guidelines for hospice care specifically designed for individuals facing HIV and AIDS.

Disease Specific Guidelines

Patients who meet the following criteria will be deemed to be in the terminal stage of HIV and AIDS, with a life expectancy of six months or less if the illness runs its course. Criteria 1 and 2 should be present, while criteria 3 serves to provide additional supporting evidence.

  1. CD4+ count < 25 cells/mm3 or persistent viral load > 100,000 copies/mL, in addition to at least one of the following:
    1. Untreated or persistent loss of lean body mass of at least 10% despite treatment
    2. Progressive multifocal leukoencephalopathy
    3. CNS lymphoma
    4. Systemic lymphoma with advanced HIV disease and partial response to chemotherapy
    5. Renal failure in absence of dialysis
    6. Visceral Kaposi’s sarcoma unresponsive to therapy
    7. Cryptosporidium infection
    8. Toxoplasmosis, unresponsive to treatment
    9. Mycobacterium avium complex (MAC) bacteremia, untreated, unresponsive to treatment, or treatment refused
  2. Decreased performance status as measured by a Karnofsky Performance Status (KPS) of ≤ 50%
  3. The following factors support eligibility for hospice:
    1. Chronis persistent diarrhea for one year
    2. Concomitant, active substance abuse
    3. Greater than 50 years of age
    4. Persistent serum albumin < 2.5gm/dl
    5. Advanced AIDS dementia complex
    6. Absence of, or resistance to effective antiretroviral, chemotherapeutic and prophylactic drug therapy related specifically to HIV disease
    7. Congestive heart failure with symptoms at rest
    8. Advanced liver disease
    9. Toxoplasmosis

Non-Disease Specific Guidelines

  1. Physiologic impairment of functional status demonstrated by a score < 70% using either:
    1. Karnofsky Performance Status (KPS)
    2. Palliative Performance Score (PPS)
  2. Dependence on assistance for two or more of the following activities of daily living (ADLs):
    1. Feeding
    2. Bathing
    3. Dressing
    4. Toileting
    5. Ambulation (walking/moving)
    6. Transfer


Although not the primary hospice diagnosis, the presence of certain co-morbidities should be considered in determining hospice eligibility, as the severity of these conditions is likely to contribute to a life expectancy of six months or less. These co-morbidities may include:

  • Chronic obstructive pulmonary disease
  • Congestive heart failure
  • Ischemic heart disease
  • Dementia
  • Renal failure
  • Diabetes mellitus
  • Liver disease
  • Acquired immune deficiency syndrome (AIDS)
  • Neurologic disease (CVA, ALS, MS, Parkinson’s)
  • Neoplasia

Disclaimer: Please note that the information provided on this page is intended for general guidance purposes only and should not replace professional medical advice. Each individual’s situation is unique, and eligibility for hospice care should be assessed by qualified healthcare professionals.


Benefits of Hospice Care for Individuals with HIV/AIDS:

Hospice care offers numerous benefits tailored to the specific needs of individuals with HIV and AIDS. Some of these benefits include:

1. Pain and Symptom Management: Hospice care focuses on alleviating pain and managing distressing symptoms associated with HIV and AIDS.

For those with HIV and AIDS  this can include managing symptoms commonly experienced which may include:

  • Severe fatigue
  • Pain
  • Unintentional weight loss
  • Recurrent infection
  • Fever
  • Night sweats
  • Nausea and vomiting
  • Diarrhea
  • Abdominal pain and cramping
  • Shortness of breath
  • Cough
  • Cognitive decline
  • Skin breakdown
  • Psychological distress

The interdisciplinary team, including physicians, nurses, respiratory therapists, social workers, and chaplains, work together to develop a comprehensive plan that addresses the unique needs of each patient.

2. Medication and Equipment Support: Hospice provides medications, oxygen therapy, and other necessary equipment related to managing the symptoms that may arise with end stage lung disease. This ensures that patients have access to the resources they need to maintain comfort and improve their quality of life. All medications and durable medical equipment related to the terminal condition are covered under the hospice benefit.

3. Skilled Nursing Care: Hospice care includes skilled nursing services provided by specially-trained hospice nurses who have expertise in managing the complexities HIV and AIDS. These skilled nurses assess and monitor the patient’s condition, manage medications, provide wound care if needed, and collaborate with other healthcare professionals to ensure comprehensive care.

4. Emotional and Psychosocial Support: Hospice care extends support not only to patients but also to their families and caregivers. Social workers and counselors are available to provide emotional support, counseling, and resources to cope with the challenges that arise during this difficult time.

5. Assistance with Activities of Daily Living (ADLs): Nurse aides, also known as certified nursing assistants (CNAs), are an integral part of the hospice team. They provide hands-on assistance with activities of daily living (ADLs), such as bathing, dressing, grooming, and toileting. For individuals with HIV and AIDS that may experience extreme fatigue, pain, and physical limitations, nurse aides help maintain personal hygiene, promote comfort, and preserve dignity.

6. 24/7 Access to Care: Hospice care offers round-the-clock access to the hospice team, providing peace of mind for patients and their families. This availability ensures that assistance is available whenever it is needed, even outside regular office hours.

7. Spiritual and Bereavement Support: Hospice care acknowledges the importance of spiritual and emotional well-being during end-of-life care. Chaplains or spiritual counselors are available to provide spiritual support, and bereavement services are offered to help families cope with grief and loss after the passing of a loved one.

8. Self-guidance: An individual is allowed to receive care in their preferred setting and have input on their care allowing for an increased sense of comfort.

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Not sure if you or a loved one are eligible to receive hospice care?

Contact the Honor Hospice team for an evaluation to determine if hospice is an appropriate care option.

If you have any questions regarding hospice eligibility guidelines for individuals with HIV and AIDS, please feel free to contact us. Our compassionate team at Honor Hospice is dedicated to providing information, support, and personalized care during this challenging time.

Take the first step towards compassionate care and learn how hospice can make a difference in your life or the life of your loved one.