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

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 18: Legal and Financial Issuesbehalf. This can include conventional medical treatment decisions, decisions to change providersor to pursue a second opinion, and decisions regarding levels of pain-relieving medications andother palliative care. The agent can also make decisions regarding the priority and extent ofvisitation26by friendspicasand family members during periods of hospitalization.It is important to note that the health care proxy document only permits the agent to makethese decisions when the individual who appointed her is either unable to make, or unable tocommunicate, those decisions herself. Indeed, a good health care proxy should contain a provisiondirecting that physicians and other health care providers make every attempt to communicatewith and solicit a response from the patient first, before relying on the agent to act on thepatient’s behalf. Of course, the patient may also choose to direct her health care providers toconsult with or defer to the health care agent even during times when the patient is able tocommunicate but finds it difficult or stressful to do so. What is critical in such a situation is thatthe choice to include the agent remains firmly with the patient, so long as she remains legallycompetent and able to communicate.In the absence of a properly executed health care proxy, decisionmaking authority regardinghealth-related matters generally defaults to a person’s “next of kin,” often the spouse or theclosest adult biological family member that can be found. The advantage of the health careproxy is that it vests control in a trusted individual specifically chosen by the patient, thusincreasing the likelihood that the patient’s wishes regarding health-related matters will behonored. A person living with HIV is free to choose any competent adult to serve as her healthcare proxy. One can also name two co-agents in the health care proxy, who can share theresponsibility for decisionmaking. A person naming two agents is advised to evaluate the abilityof the two agents to work together and to consider naming one whose decision would control inthe event of a disagreement. It is not advisable for a person to appoint his or her health careprovider as a health care proxy. The primary purpose of the appointment is to choose someonewith a strong personal relationship to the person living with HIV, who can work with the providerto make difficult health care decisions.An additional advantage of a health care proxy is that it can be specifically tailored to express aperson’s preferences, beliefs, and instructions regarding health-related matters. This has thebenefit of giving a person living with HIV an opportunity to clearly communicate her wishes tothe health care agent before a health-related crisis occurs. Such communication between thepatient living with HIV and her health care proxy is crucial, because the health care proxy’s jobis to make health care decisions that accurately reflect the preferences and wishes of the patient,and not the proxy’s own preferences.In most States, the health care proxy is authorized by statute and that statute will specify themechanical requirements that must be met in order for the document to be legally valid. Typicalrequirements include the number of witnesses that must be present for the signing of thedocument, the minimum age of the appointed agent, and the signature of the individual makingthe appointment in one or more places on the document itself. It is recommended that thehealth care proxy document be notarized, regardless of whether notarization is a formalrequirement under a particular State’s health care proxy law. Notarization lends an additionallevel of legitimacy to a document that may protect against future challenges from family membersor health care providers.XVIIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 375