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 TransitionQuestion 5What kind of assistance do you need on days when you do not feel well?In 26 general picas most individuals and families do not like to depend on other people for care andassistance. They often are concerned about being a burden, inconveniencing others, and fearingthey will use up their “personal favors” too soon. Give the patient and family permission tofantasize about what kinds of things may be helpful.Question 6If your condition worsens, do you wish to go back to the hospital?Traditionally, we tell patients, “If you get worse, go to the Emergency Room.” This is fine ifthere is an acute infection or event that will respond well to emergency attention. But the personwith advanced HIV who has been hospitalized a number of times may already have considerednot wanting to come back to the hospital. The patient’s response to this question also helpsto guide home-based care options such as referring the patient to home care or hospice. Thepatient who is sure he or she wants to return to the hospital is a better candidate for home carewhere the on-call service is designed for emergency intervention.Question 7What are your most meaningful goals at this time in your life? Is there anything wecan do to help you achieve them?Adults and children all have meaningful life goals. Some people are very open to discussingtheir goals, others have barely whispered them to their closest confidant if at all. By gaining anunderstanding of the patient’s goals, team members learn how to plan treatments and caresupports. For example, a woman who needs to complete guardianship arrangements for herchildren may benefit from the support of blood transfusions for temporary strength, whereas aperson who has settled his or her affairs might not consider it a benefit.Question 8In the event of your death, is there anyone or anything that you are worried about?When people think of the possibility of their own deaths, sometimes it is easier for them tothink of the needs of others rather than themselves. This pertains to their children and otherloved ones as well as cherished pets, plants, or any other living things that would suffer during ahospitalization, long-term placement or death. A hospital stay can provide a trial run for futurecustody or referral information. Sometimes, discussing these concerns provides a way for patientsto express their anticipatory grief for meaningful aspects of their lives and their need toknow that these will be cared for. Discussing such worries can facilitate people’s acceptance ofhospice services so that their loved ones can benefit from the social work services and bereavementfollow-up.Question 9Have you ever heard of a medical power of attorney or a health care proxy?Assignment of a health care proxy to make medical decisions on their behalf is an importantsafeguard for patients to know that their end-of-life wishes will be honored. Patients shouldselect a person who knows and understands their personal desires for quality of life decisionsthat will affect the direction of their care. Providers should inform both the patient and his or454U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau