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 Transitionmost appropriate services. Focus on the patient’s perspective on his or her condition, and makesure that you allow the patient to answer the questions rather than giving directive informationas you begin this assessment conversation. The following questions are also listed in Table 22-1.Question 1What has your medical team told you about your condition? What does this informationmean to you?This question is essential to assessing the accuracy of the patient and family’s understandingof the current medical status and prognostic factors. Often a patient may state that he or she isgetting worse, or not getting better, but that the medical team is telling him or her that he or sheis going to get stronger. If the patient responds with little emotion or simply restates the medicalteam’s words, ask, What is your body telling you about how you are doing? This questionprompts a more introspective response that is always revealing of inner concerns and feelings.Question 2Tell me about your good days...What are you able to do on those days?The response to this question is equally revealing. The responses of the patient and familywill let you know what gives them pleasure. By hearing about unique points of enjoyment andmeaning, the team can learn whether and what pleasure activities are available to the patientand family. It is also a way for them to face the realities of how long it has been since they havehad several of “those” good days in a week. Such information helps provide a perspective on thespeed of loss of strength and other changes.Question 3When is the last time you had a day like that in the past two months?This assesses the degree of changes in physical strength, independence, and endurance. Themost recent holiday is often a period of time that stands out memorably for families. They canrecall where they were, what they wore and ate, and how they felt at the end of their activities.Because shortened prognosis is often connected to increasing weakness, assisting the patientand family to answer this question aloud helps them state in their own words how and in whatways things may be different now. This begins the patient and family’s personal process of selfdisclosureabout important changes in current energy and needs in the present tense, whichenhances realistic planning.Question 4Have you had any bad days lately? What makes them bad?Health care providers so often are concerned with a patient’s viral load, adherence to medications,and weight stability that we forget to ask the patient what defines his or her hard times.Listening carefully to the patient’s response, we learn about not only the patient and family’spriority concerns but under-managed symptoms impairing the patient’s quality of life that wemay have been unaware of before. Patient and family responses also help to identify areas inwhich the family may need outside assistance, such as on-call nursing support, child care andrespite assistance.XXIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 453