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 TransitionTHE TRANSITION OF FOCUS FROM CURATIVE TO PALLIATIVE CARE■ Attention to alleviation of suffering, be it physical, emotional, or spiritual, is consistent withthe highest26 picasaspirations of all health care professions. The integration, therefore, of palliativecare with its broad clinical, social, and spiritual support into the care of someone living withHIV/AIDS can promote quality of life and realistic life planning at any time in the course of theillness. There is, however, often a time in the course of care when a formal transition fromcurative to palliative care is made. In the U.S., because of the peculiarities of financing palliativecare services, most often this involves a transition from traditional medical care to hospicecare. Traditionally, palliative care was ‘saved’ for hospice care. With the advent of highly activeantiretroviral therapy (HAART), new theories of resistance, and re-sensitizing clinical trials, allcategories of patients can be considered equally eligible for palliative care as well as more disease-specificcare. Integrating palliative care, clinical, social, and spiritual support servicespromotes quality of life and realistic life planning.Discussions with patients and families about palliative and hospice care can be difficult for eventhe most experienced providers. Provider communication issues are discussed in depth in Chapter21. Some providers find it useful to keep in mind a sequence of facilitating questions thatlead into a discussion of palliative care, first blending discussion of disease specific therapieswith palliative care, moving toward exclusive focus on palliative care, and eventually introducinghospice care (see Table 22-1). It is also helpful to give patients and families a description ofhospice that explains how the care addresses their stated wishes and concerns before the term“hospice” is used, to reduce risk of rejection (see Table 22-2).Planning for the transition into palliative care must begin with an understanding of the patientand family’s desires, expectations, and understanding of the patient’s illness. In our society, manybelieve that hospice care means giving up all medications and getting ready to die. Therefore, it isoften a mistake to jump directly into a discussion of hospice per se because patients and familiesunfamiliar with contemporary hospice approaches may attach negative connotations to the term.If the health care provider begins a conversation about hospice care or palliative care without firstlearning the patient’s perception of his or her status, there is a great chance of the patient refusingsuch care. It is important that providers assess immediate needs and priorities as stated by thepatient and family rather than assume that a problem that is obvious to the providers is of immediateconcern to the recipients of care. 10 The most important goal of intervention at this point is tofacilitate discussion so that the patient and family’s responses are as honest and realistic as possible.(See Chapter 21: Patient-Clinician Communication.)Advanced End-of-Life Planning DiscussionsEach member of the interdisciplinary team must be able to initiate and discuss palliativecare, end-of-life care, and hospice services. Understanding the patient and family’s perspectiveon their current and future needs and desires will help guide this planning and referral process.The following questions provide a guide for initiating a discussion about end-of-life-related experiences,desires and planning.Begin by sitting close to the patient (preferably at eye level). Explain that you know he or shehas been living with HIV for some time and that you would like to learn more about how he or sheis doing. Explain that understanding more about his or her needs will help you advocate for the452U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau