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 BereavementAfter the death of a patient, families appreciate general expressions of condolence and sympathy.Telephone calls, cards, and notes are all appropriate responses from the health care team.An acknowledgment of the death and expression of sympathy are meaningful, but another waythe health care professional can help the bereaved accept the reality of the death (Worden’sTask I) is by providing details and information about the illness, as appropriate. Many familiesdo find it helpful to meet with the physician or members of the health care team after the deathof a loved one to review the course of treatment or ask questions about the plan of care. Thebereaved need reassurance and affirmation that they did everything possible to help their lovedone and they did not hasten the death of their loved one (perhaps by administering the “lastdose” of medicine or providing inadequate care). Malacrida reported survivors are often notsatisfied with the information provided about the cause of their loved one’s death. 30 It appearsthat the communication and information provided to the bereaved by the palliative care teammay also influence their bereavement recovery. 31Some people may not need, or want, further contact with the palliative care team. It may be apainful reminder of the illness and death, especially if they have not accepted the reality of theloss. Take cues from the bereaved before assuming they wish to remain in contact.Educating about the grief process and normalizing appropriate grief responses can lessen someof the stress and anxiety experienced by the bereaved as they face Worden’s second task ofmourning—experiencing the pain of grief. Often the image used to describe the grief process isthat of a “roller coaster ride.” This image highlights that those moving through grief do notnecessarily feel better and stronger each day but experience “ups and downs” and “twists andturns” that are normal for the ride. The bereaved need to learn what typical physical, emotional,spiritual, cognitive, and social responses they can expect, but also be allowed to experienceand express their own process.• Reassure them that it is normal to experience upsurges of grief related tosignificant days or events such as birthdays, anniversaries, and holidays, aswell as some upsurges that will occur at random.• Educate them that anticipation of the significant day is usually worse than theday itself.• Encourage them to divert the energy from worrying about the significant dayinto making plans for how to spend the day.• Remind them that the grief journey takes as long as it takes; there is no timeframe for grief.Tables 16-4a and 16-4b suggest techniques for supporting the bereaved during the grief process.Good self-care is a significant part of learning to adjust to the loss (Worden’s Task III). Remindthe bereaved the grief affects their entire person: physically, emotionally, cognitively, and spiritually.Encourage physical exercise (as appropriate), proper diet, and proper rest. Explore theirspiritual responses to their losses and accompany them as they search for meaning. Know thatthey are not looking for external answers; they need to find their own answers, or learn how tolive with the questions. Help them develop the creative aspect of their beings by encouragingthem to keep journals or incorporate art and music techniques as part of working through theirgrief. 32 Strengthen their support systems and be aware of the community resources in the area.Nord notes that “social support, community involvement, and fostering a sense of purpose areuseful” in learning to accommodate a loss. 33342U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau