The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 22: Facilitating the TransitionHospice Care and ServicesHospice care is designed for patients living with advanced disease conditions and their families.Education, symptom management, on-call support, care focused on the end-of-life, and26 picasbereavement are the cornerstones of hospice care. Symptom management includes ongoingassessments, intervention and follow-up, education, and promoting optimal comfort.Hospice teamwork assists the patient and family to design a personalized plan for disease progression.This plan will address preventing anticipated symptoms, clarifying desires for place ofdeath, and related concerns. The focus on symptom control, education and support is to makethe patient and his or her significant others as self-reliant and comfortable as possible at homeas they plan for approaching death. Care includes skilled nursing (provided by RNs), personalcare (by home health aides), social work services, volunteer support, pastoral care and bereavementsupport for one year after the patient expires. Comprehensive support is key to hospicedesign. Assessment of and support for physical, emotional, social, financial, and spiritual aspectsof the patient and family’s lives are the priority concerns and focus of care delivery.Traditionally, only clients who were no longer interested in measures to prolong their lives wereeligible for this program. The unique challenges in predicting prognosis and symptom managementwith advancing HIV disease have pressured some changes in the definitions of HIV hospicecare. Specifically, the severity, complexity, and unpredictable trajectory of the disease have blurredthe distinction between what was previously understood as curative care and what was consideredsupportive palliative care. 18,19,20 At one time, patients were asked to give up all treatmentmedications, IVs, hospitalizations, diagnostic tests, and hopes for recovery. Today with patientsresponding unexpectedly to starting and withdrawing of aggressive antiretroviral therapies, prolongeddisease soliloquies, changing prognoses, and new hopes, hospice referrals are changingto include more blended care.Medicare Skilled Nursing Benefit versus Hospice Medicare BenefitFor patients who have Medicare or Medicaid in States with the Medicaid Hospice Benefit, choosinghospice can be very complicated. (See Chapter 18: Legal and Financial Issues for more informationabout these sources of care financing.) Terminally ill Medicare or Medicaid recipients canchoose the Skilled Nursing benefit or the Hospice Medicare Benefit. By electing the HospiceMedicare Benefit, the patient designates the hospice to assume the financial responsibility forall care related to the terminal illness. This obligation provides all the core services of hospicecare as well as durable medical equipment, palliative medications, respite care and 24-hournursing care if needed.There continues to be ongoing debate regarding the hospice agency’s obligation to continueexpensive viral suppressive therapies. Although many of these therapies may provide symptomrelief, their cost would exhaust more than the per diem rate of hospice reimbursement.Ideally, every hospice could benefit from dual licensure as a home care and a hospice agency.An agency licensed for both home care and hospice has more flexibility in care delivery strategiesfor patients who are continuing to blend palliative care and support with final treatment strategies.This allows the hospice to bill as home care skilled intermittent visits by the hospice nurse andhome health aides, as well as other therapies as ordered. Social services can be billed at the maximumnumber of visits allowed. Additional visits will not be billable, unless allowable through othersources of funding such as end-of-life care within Ryan White CARE Act Titles I or II.462U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau