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 Transitionexpertise, on-call availability, support services and anticipatory grief work prior to active phasesof dying. In these cases we must evaluate the degree to which we have given the patient andfamily the freedom to choose between home care and hospice with their full understanding ofthe differences.Because of the terminal nature of hospice care, young people are often comforted by knowingthat if hospice care does not feel right for them, they can go back to standard care. We mustremind patients and family that HIV is an unpredictable disease, and that at this time we believehospice care is best to meet their needs, but if in the future they get stronger, or they no longerneed or wish the hospice’s services, they may be discharged. Giving patients and caregivers thepermission to think of hospice as a specialized care for their current condition and advancedcare needs provides great relief since they may have only known hospice as a “last stop beforeyou die,” and with HIV that is not always true. A gentle personalized explanation of hospice as acare option can often improve acceptance of such services. Care providers must recognize thatacceptance of hospice is not the absolute goal of care planning. Assuring patients and familiesof viable care options that match their values, resources, and desires remain our main priority.HOSPITAL DISCHARGE PLANNING■ The decision to formally engage home care and hospice care services often occurs during thecourse of a hospitalization. Although eligibility for palliative care can be determined across anystage in the spectrum of HIV disease, HIV-related inpatient hospital admissions are frequentlyone of the clinical markers of advancing disease. Prior to each hospital stay, the patient hasdeveloped chronic disabling symptoms or new onset symptoms that indicate advancing HIVdisease. Increasing fatigue, changing social support, and complex home-based care needs requirereassessment during each hospital stay. Comprehensive discharge planning is an essentialtask for promoting the continuum of care. Integration of HIV palliative care services need not bepostponed until patients are in the most terminal phase of life.Elements of comprehensive discharge planning from the hospital setting require an array ofassessment, education, support, and community referrals. Some of these care elements includeunderstanding the patient and family’s adjustment to illness; understanding the unpredictablenature of HIV; sensitivity for the patient witnessing other patients’ declining status; sick and coinfectedpartners; sudden acute, life threatening illnesses; fear of the unknown; dependence onothers; and uncontrolled pain or other symptoms. Interdisciplinary participation in the educationof patients and caregivers on important aspects of the patient’s condition, disease trajectory,prognosis and direct care are predictors of improved patient and family satisfaction. 11Patients’ resources may have drastically changed since their most recent hospital admission.The patient may no longer be able to care for himself and live independently. He or she may haveexperienced a loss of housing, income, insurance benefits, and/or family support. Caregiversawaiting the patient’s discharge may need increased assistance at home for extensive care. Thisis why it is important to make a comprehensive assessment of new needs and any adjustments tothe plan of care prior to discharge. The revised discharge plan must be communicated to outpatientprimary care providers and case managers so that they can reassess patient and caregiverneeds once the patient is home.Families need to understand the seriousness of advancing disease and the implications of limitedlife span for their loved one. One of the major discharge planning problems for families isthat it is not always clear when someone is dying. Sometimes, even if a loved one has been inXXIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 457