The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 21: Patient-Clinician Communicationrarely elicited information about patient goals and values, avoided discussing uncertainty, andrarely asked patients to explain why they had specific treatment preferences or what wasimportant to them about their quality of life after treatment. There is also some data to suggestthat non-physician26 picasprimary care providers such as nurse practitioners or physicians’ assistantsare no better than physicians at communication about end-of-life care. 13 In summary, thesedata suggest that the quality of patient-clinician communication about end-of-life care is poorand unlikely to improve under our current system of health care delivery and medical education.These studies challenge us to develop better ways to teach end-of-life communication skills toclinicians in training and in practice. 26THE ROLE OF THE PATIENT’S SIGNIFICANTOTHERS IN COMMUNICATION ABOUT PALLIATIVE CARE■ The western ethical principle of patient autonomy dictates that patients should be involvedin decisions about their medical care and that communication about a patient’s care shouldoccur with the patient. However, it is important to recognize that many patients would like theirsignificant others to be directly involved in discussions and even decisions about their care. Infact, when patients are asked for their preference in a circumstance where they could notcommunicate and where their advance directives differed from what their loved ones would likedone, most patients stated they would rather that the wishes of their loved ones be followed. 41This study shows the importance of involving patients’ significant others in end-of-lifedecisionmaking. The importance of including the patients’ significant others becomes evenmore important when patients are from cultures that focus on the family as the decisionmakingunit. Clinicians working with patients from cultures that focus decisionmaking on the familyunit must develop the skills and expertise in communicating with the entire family. 42 (SeeChapter 14: Culture and Care.)If a patient can no longer communicate his or her wishes for medical care, the legal surrogatedecisionmaker is usually identified in a hierarchical fashion. First priority usually goes to anindividual named in a durable power of attorney for health care and then to family members. Inmost States and countries, the family members primarily responsible for decisionmaking are, inorder, legal spouse, parent, adult children, and siblings. If there is more than one individual ata given level in the hierarchy, such as occurs in the family with several siblings, many States andcountries require that the decision be based on group consensus. Although the law may specifya legal decisionmaker, in most cases the actual decisionmaking process occurs in a series ofconferences and individual meetings with all individuals who have strong ties to the patient. 43Decisionmaking is usually facilitated if all interested individuals are involved early and completely.THE ROLE OF THE HEALTH CARE TEAMIN COMMUNICATION ABOUT PALLIATIVE CARE■ The health care team is made up of a number of health care professionals, including physicians,nurses, social workers, and others. Different team members may play varying roles in differentsettings. It is important that all team members who are directly involved in communicationwith patients and their significant others be aware of all communication about end-of-life care.Consensus within the team is an important step in the process of making decisions aboutwithholding or withdrawing life-sustaining therapy regardless of whether the setting is anintensive care unit, hospital ward, or outpatient setting. Of the few legal cases brought against434U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau