Family members had poignant, unresolved emotional needs stemming from their loved one's illness and nursing home placement. Participants were unprepared to make end-of-life treatment decisions and lacked the informational and emotional support of a consistent provider to help with decisions. Family members need assistance in processing difficult and painful emotions, understanding the trajectory of disease, what decisions might impede a natural death, and comfort or palliative care options.

We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in ‘normalizing’ the discussion of death.

Findings from this qualitative study indicate that family members of nursing home residents hold themselves responsible for overseeing the care of their loved one, representing the resident's perspective and history, and keeping the family connections. These role expectations can be assets to nursing homes. Nursing and social work staff are called on to be leaders among all staff to maximize constructive family involvement and minimize the stress families may experience if they are not able to fulfill their role expectations.

The purpose of this descriptive study is to report findings from a nationally representative mail-in survey of nursing home social service directors (n = 1,071) who were asked if they had received at least one hour of training in six different areas of cultural competency in the past five years. Of the six areas, the lowest percentage of directors reported having training in homophobia. Three-fourths of the sample had not received even one hour of homophobia training over the past five years. Directors who were more recently educated were more likely to report having received homophobia training, as were directors with a college degree, and those who worked in nursing homes located in the West and South regions of the United States. Directors with the most experience were less likely to report having received training. Findings call for immediate development and dissemination of heterosexism and homophobia training of social service staff, policy changes within the nursing home, and policy advocacy priorities for social workers.

More than one-half of the 2.4 million deaths that will occur in the United States in 2004 will be immediately preceded by a time in which the likelihood of dying can best be described as "ambiguous." Many people die without ever being considered "dying" or "at the end of life." These people may miss out on the opportunity to close important relationships and make financial and legal arrangements that can benefit themselves and their survivors. They may inadvertently forgo palliative care that is available to comfort them physically, emotionally, and spiritually. This article calls for a broader conceptualization of the end of life to include not just the time when death is foreseeable, but also the time when people are at a greatly increased risk of death, although the timing is highly uncertain. Social workers have much to offer people affected by the "ambiguous dying syndrome."