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 Issues2. Living Will (Directive to Physicians)A living will (also known as a “directive to physicians” or “advanced directive”) is a legaldocument authorizing the removal of artificial life-support systems for an individual who hasbeen diagnosed with brain death or whose condition has been deemed terminal and irreversible.The living will is directed to an individual’s physician, and constitutes written evidence of theindividual’s intent not to be kept alive by artificial means. A living will may also specify that apatient elects to forego other life prolonging treatments, such as artificial hydration and nutritionvia IV, antibiotics, and in, some cases, blood transfusions. Exceptional care should be takenwhen explaining these options and their effects to a terminally ill patient, so that the living willprecisely represents the patient’s intent with respect to these life-prolonging treatment options.People living with HIV who are opposed to being placed on prolonged life support despite theoccurrence of brain death or a terminal diagnosis are advised to execute a living will that clearlycommunicates their opposition. In the absence of a living will evidencing a clear intent, physicianscan find themselves both ethically and legally bound to do everything they can to keep a personalive – even if the person is clinically brain dead and being kept alive solely through technologicallife support measures. By the same token, many physicians, particularly those experienced inworking with people with HIV, are familiar with and generally respectful of the intent expressedby those who choose to execute living wills. It is a good idea for an individual’s treating physicianto be aware of the existence of a living will when one has been prepared.Bear in mind that some hospitals with particular religious affiliations may be reluctant to honora patient’s expressed wishes even if a living will has been prepared and presented to the medicalstaff. In some cases, particularly where there is no law or statute authorizing the creation of aliving will, the religious institution that participates in setting hospital policy directs medicalstaff not to recognize living wills. Thus, people living with HIV who are strongly opposed tobeing placed on prolonged life support should consider where they receive their care, and whetherthe religious affiliation of their provider is likely to affect that provider’s willingness or ability tohonor the living will.Laws in this sensitive area vary widely from State to State, and, in many States, there is nostatutory authority for living wills. There have been, however, many important legal cases involvinga person’s right to be taken off artificial life support and those cases have generally favoredhonoring a person’s desire to terminate life support when it can be proven that the desire wasclearly expressed in advance. Still, it is advisable to work with someone familiar with the law inyour particular state when preparing and executing a living will.State-specific forms for living wills and for health care proxy (assigning power of attorney forhealth care) can be downloaded free from the web site of Partnership for Caring. ContactPartnership for Caring on the web at www.partnershipforcaring.org/Homepage/index.html orby phone at 1-800-989-9455. Five Wishes is a document that helps patients express how theywant to be treated if they are seriously ill and unable to speak for themselves. Five Wishes canbe ordered for $5.00 from Aging With Dignity, P.O. Box 1661, Tallahassee, FL 32302-166,www.agingwithdignity.org or 1-888-594-7437.376U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau