Caring for a patient with acquired immunodeficiency syndrome (AIDS) or an HIV infection comes with specific challenges. Because human immunodeficiency virus (HIV) affects the immune system, advanced forms of this disease often involve concurrent illnesses. This can complicate care because the symptoms of terminal-stage HIV may include everything from renal failure to mental confusion.
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Deciding When to Start Hospice Care for Patients With HIV
The goal of Three Oaks Hospice is to provide comfort care at the end of life, so patients who enter hospice typically do so after all life-sustaining and curative treatments have been exhausted. Hospice care focuses on quality of life and symptom management to ensure patients spend their final days, weeks or months as comfortably as possible.
A doctor typically refers a patient to hospice after a terminal diagnosis, but patients and family members can also request a referral. Discussing hospice options in advance can make the decision easier when the time comes.
Various factors will support eligibility for hospice services, and some patients may be eligible based on the progression of comorbid diseases instead of the actual viral load level.
Palliative care is an option for patients with AIDS or HIV who don’t meet the diagnostic criteria for hospice care. A palliative care team offers many of the same services as hospice, but it is intended to be used in conjunction with curative treatments or before the patient’s illness has progressed to the terminal stage. Patients with a life expectancy of over six months may still meet the criteria for palliative care.
A patient with HIV/AIDS who’s on palliative care may experience a sudden rapid decline, but Three Oaks Hospice can smoothly transfer a patient from palliative care to hospice. The patient’s physician can confirm terminal status and refer the patient to hospice.
Diagnostic Criteria for Entering Hospice Care With Advanced HIV Disease
The diagnostic criteria for entering hospice include a life expectancy of six months or less and the cessation of curative treatments. This can be especially complicated with AIDS and HIV because co-occurring conditions may affect treatment options and symptom management. Medical guidelines for determining terminal status of HIV/AIDS patients involve assessing multiple criteria and documentation of specific symptoms that support eligibility.
Comorbid conditions that may affect a terminal AIDS diagnosis include:
- CNS lymphoma
- Progressive multifocal leukoencephalopathy
- Visceral Kaposi’s sarcoma unresponsive to treatment
- Systemic lymphoma that is unresponsive or partially responsive to chemotherapy
- Mycobacterium avium complex (MAC) bacteremia that is untreated or unresponsive to treatment
- Wasting that includes a loss of lean body mass of 33% or more
- Being unresponsive to treatment or having halted treatment for AIDS or HIV
- Renal failure
- Untreatable toxoplasmosis infection
- Cryptosporidium infection
- Cytomegalovirus (CMV) infection
Hospice admission guidelines for HIV-infected patients include two main criteria:
- A decreased performance status as measured by the Karnofsky Performance Scale
- A CD4 count below 25 or persistent viral load over 100,000 copies/ml and one diagnosis from the following list of specific comorbid conditions
Other factors can support eligibility for hospice, so doctors may also consider the following factors in addition to the two primary criteria:
- Age over 50 years
- Advanced AIDS dementia complex
- Congestive heart failure
- Persistent serum albumin of 2.5 or lower
- Chronic persistent diarrhea
- Substance abuse
How Hospice Care Helps Patients With HIV Disease or Advanced AIDS
Three Oaks Hospice care enables patients to remain at home while allowing family caregivers to focus on what is most important. Hospice typically takes place where the patient lives, which could be at the patient’s home, the home of a family member or an assisted living facility. In some cases, hospice services may be provided at an inpatient facility or hospital during a temporary stay.
Comfort care is provided to reduce symptoms of the primary disease and any comorbidities. Managing symptoms and reducing pain are the two main goals of comfort care in hospice. The hospice team follows standard medical guidelines for symptom management and coordinates with the primary care doctor to provide coordinated care. Some other things provided by hospice care include:
- Personal care needs, including wound and infection care
- Mental health support
- Emotional and spiritual support
- Medication and supplies related to comfort care
- 24/7 access to nursing care as needed
On-demand care helps patients stay out of the hospital because acute symptoms are quickly managed at home. This is especially important for patients with AIDS because symptoms can develop or change rapidly.
A Focus on the Patient’s Wishes
Because the main goal of hospice care is to help patients with advanced HIV disease maintain their dignity and quality of life, the patient’s wishes are a major factor. For some patients, this might mean a focus on staying in their home as long as possible or managing pain without affecting mental cognition. The hospice care team coordinates with the patient’s doctor and family caregivers to provide the right services at the right time.
Customized Care Options
Human immunodeficiency virus progresses differently in each patient. Because HIV-infected patients often have co-occurring conditions, customized care is a necessity. Care may be tailored to take into account specific symptoms and concerns. As the patient’s condition changes from day to day, care can be adjusted as needed.
Hospice care is flexible, so the provided services and timing of visits can change as the patient’s condition changes. Periodic communication with the patient’s regular medical care team helps hospice staff keep the patient’s care team informed.
Three Oaks Hospice Locations
Three Oaks Hospice has locations across the U.S., ensuring that caring, compassionate hospice and palliative care are available to patients where they live. Three Oak Hospice provides on-site care in the home or where the patient calls home, whether that’s in their residence, a family member’s, or in a medical facility.
How Three Oaks Hospice Assists Family Members of Patients With HIV Disease or Advanced AIDS
Family members caring for terminally ill patient often experience stress and burnout. Hospice care relieves some of this burden and gives caregivers a temporary break.
Hospice staff educates caregivers on HIV disease progression and best practices for caring for patients with this condition. The social worker assigned to the patient’s care team helps family members navigate the difficult decisions surrounding end-of-life care. This includes assistance with financial and insurance paperwork as well as advanced care preferences and funeral arrangements.
Family members caring for a patient with HIV disease or advanced AIDS sometimes need a break from 24-hour care. Three Oaks Hospice provides up to five days of respite care for family caregivers, including transportation services to contracted medical facilities.
Caregivers receive bereavement support before and after the death of the patient, and counselors are available for 13 months after the patient’s death, or longer.
The Hospice Care Team
Patients entering hospice receive an initial assessment to determine the specific services required. A hospice team manager coordinates care and sets a schedule for home visits by hospice professionals each week. Members of the hospice team may include nurses, counselors, and clergy members. The team also includes volunteers who can help run errands and provide companionship.
If the patient requires specific medical equipment and supplies, the hospice team can assist with the acquisition and setup of those items. Hospice staff is available 24/7 for patients enrolled in hospice care, and hospice staff is dispatched within 15 minutes of a call to ensure care is provided quickly.
Choosing Hospice or Palliative Care Services for AIDS or HIV Patients
Families and patients often have questions about how payment for hospice services works. Hospice care benefits are typically offered as part of Medicare and Medicaid services, and some private insurance providers offer a hospice care benefit. Your hospice team can help you navigate insurance paperwork and apply for Medicare or Medicaid services as needed.
Three Oaks Hospice has multiple convenient locations, and you can find out more about our services by filling out the contact form above.