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

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 16: Grief and Bereavementgrieving recent AIDS-related deaths, there are different preventability issues to be faced: medicationnoncompliance, accessibility of treatment, and efficacy of treatment. 7 If the bereavedbelieve the death could have been prevented, the risk for a complicated grief process increases. 2Length of illness is another important factor. Now that living with AIDS is often a chronicillness, there is a longer period of uncertainty about the future. Trends seem to indicate thatdeath from AIDS is now met with disbelief rather than as an anticipated fact. 7 Chronic or prolongedillness often means the entire family structure is changed in order to accommodate care.People may have to rearrange work schedules or not work at all; they may need to find additionalcaregivers and/or financial support. These stressors on the family system can also complicatethe grief process. 2 As treatment advances, health care professionals may find that their anticipatorygrief and bereavement period are affected by closer bonds that have developed as a resultof patients who are living longer. 7Symptoms and side effects of the disease may also affect the grief process. Doka identifies twosymptoms that correlate positively with complicated grief: disfigurement and mental disorientation.11 The challenge of coping with these symptoms can create ambivalence and prematuredetachment from the patient. People with AIDS are at risk for both symptoms.Unfortunately, an AIDS-related death is still a disenfranchised death in most societies (alongwith deaths from homicide, suicide, and drugs). Patients sometimes choose not to inform familymembers or friends of their diagnosis and AIDS is often not mentioned in obituaries or atfunerals. The social stigma associated with AIDS-related deaths can lead to complicated griefresponses. 14The time of death experience is an individualized factor. Some may experience increased guiltif they were not able to be present at time of death; some may experience increased distressdepending on their perception of the dying experience.Social VariablesA key indicator in how the bereaved will cope is the availability and use of a good supportsystem. The support system may include family, friends, coworkers, neighbors, religious communities,pets, and professional support. Many families come to rely on the support of thehealth care team during the patient’s illness; in fact, due to the disenfranchised nature of thedeath, other typical sources of support may be lacking. Once the patient has died and the healthcare team is no longer regularly involved, the family is coping with not only the death of a lovedone, but the loss of their main support as well. Reinforcing or feeding into the anger felt by thebereaved at the lack of family and community support only further distances them from potentialsources of future support. Rather, encourage and strengthen connection with family, friends,and the community.Cultural and religious beliefs and practices may provide comfort for the bereaved but may alsointensify grief responses. Regardless of cultural and ethnic background, the family of originplays a significant role in how the beliefs inform the bereaved’s coping style. (See Chapter 14:Culture and Care.) Familiarity with the beliefs and practices of other cultures and religiousgroups will provide a general framework for the palliative care team. 15 Cultural differences shouldbe considered before judging a person’s grief style as “abnormal” or “pathological,” but stereotypinggrief responses of an individual based on a cultural group can be inaccurate and offensive.16 It is best to ask the individual person how their beliefs and practices are affecting theirgrief process.332U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau