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 TransitionTable 22-3: Assessment of the Home Environment (continued)10. If the patient is bedridden, is someone available to answer the door, or can a keybe provided to the home care providers?11. How safe is the home for patient, caregiver, and visiting health personnel?12. Is durable medical equipment such as hospital bed, commode chair, wheelchair, oroxygen needed in the home, and should they be in place prior to discharge?13. Is the home setting appropriate for the patient’s stage of illness?(See also Table 22-5.)14. What are the financial resources of the patient and family, and have thoseresources changed dramatically since prior hospitalizations?15. Have legal issues such as guardianship, living wills, health care proxies beenaddressed and are they current? (See Chapter 18: Legal and Financial Issues.)16. What care options are there for children during illness and after death of theparent?Having someone in the role of primary care provider in the home is necessary for patient safetyand assistance as well as to coordinate care with the home care or hospice agency, and assessand deal with changing aspects of patient care. Ideally, the primary care provider must be wellenough physically and mentally to provide personal care, food preparation, safety supervision,errand running, and household management, as well as be the primary contact for health careproviders.Additional considerations arise when planning for home care for infants or children who requirepalliative care; see Table 22-4.Table 22-4: Considerations in Planning Home Care for a Child1. Parents may lose social support from other parents of hospitalized children whentheir child is discharged.2. Parents may experience significant guilt for transmission of the virus to theirchild.3. When parents are infected themselves, questions of guardianship, custody, andfinancial planning are more difficult.4. Parenting skills may need to be refined. Often, for example, parents experiencinganticipatory grief need help in learning how to discipline their children.5 There is reduced cost of care at home.6 Pain is the most common symptom across the spectrum of pediatric HIV disease.XXII7 There are forms of suffering other than pain in the dying child such as otheruncontrolled physical symptoms, guilt for making loved ones sad when they getsicker, and lack of ability to mirror the activities of healthy peers.8 Care of the dying young is often complex and requires an interdisciplinaryapproach to care. 6U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 459