Discussion about end-of-life healthcare choices can contribute to honoring preferences and facilitating a peaceful dying process for residents in assisted living facilities. Focus groups were used to explore perspectives on end-of-life discussion with residents, family members, and staff members in three assisted living facilities. Residents were most concerned about practical matters such as decisions about inheritance, financial matters, and funerals. They expressed that they were ready to accept death but felt that their family members were resistant to discussion. Family members were most concerned about good care for their elderly relative. Staff members expressed confidence in providing end-of-life care and supporting families but less confidence in initiating discussion about end-of-life decisions. Residents reported that physicians most often focused on illness progression and treatment. Residents and family members may be at different stages in accepting the dying process. To ensure that residents' choices for end-of-life care are honored, the perspectives of all involved, including family and staff members as well as organizational practices, must be considered in the development of strategies and resources for promoting discussion about end-of-life healthcare choices for residents in assisted living facilities.

Nurses can use information about the perspectives of residents, family members, and ALF staff members to design strategies to encourage discussion about EOL preferences. Information about EOL healthcare choices can provide families and healthcare professionals with assurance that they are following the preferences of elders, which is likely to reduce unnecessary suffering and confusion that may occur when preferences are unknown. Through discussion about what is happening, what can be expected, and what is preferred, healthcare professionals, patients, and families can be encouraged to move beyond the technological imperative to a gentler, kinder, and more natural process of dying.

PURPOSE

To obtain in-depth data about experiences and perspectives on EOL discussion, focus groups were conducted with (1) residents at three ALFs, (2) family members at two ALFs, and (3) staff members at two ALFs. The research protocol was approved by the Bethel University Institutional Review Board.

Setting

Participants were sought from three ALFs, which had capacities ranging from 83 to 169 residents. All ALFs reported the ethnicity of residents as predominantly Caucasian, with non-Caucasian ethnicity ranging from one to four residents. The ALFs did not have specific data on the rate of dementia; two of the three ALFs had memory care units for residents with severe dementia. One ALF had hospice services available within its facility if the resident desired; the other two ALFs provided hospice only through other organizations.

Focus Group Questions

TABLE 1 Resident Questions

Study Procedures

Assisted living facility directors identified residents who had the capacity to consent and participate in focus groups, identified potential family members who were available for participation, and suggested names of staff members who indicated an interest in participation in the study. A research assistant met with most of the residents on a day prior to the focus group to explain the research and obtain written consent. Focus groups were conducted by at least two of the authors who had research expertise, expertise with working with elders, and/or focus group expertise. Focus groups averaged an hour in length and were conducted in a private location in the ALF. Funding from the first author's institution supported an undergraduate research assistant and made it possible to provide refreshments for focus group participants. All participants completed written consent forms. The focus groups were audiotaped and transcribed.

Data Analysis

TABLE 2 Participant Focus Group Themes

Perspectives of Assisted Living Residents

Participants (n = 16) represented both sexes and spanned ages ranging from the early 1960s to the 1990s. Specific demographic data were not collected from participating residents. Participant numbers for the groups were six, four, and seven residents. Six themes emerged from data analysis: (1) meaning of end of life, (2) encounters with death and dying, (3) not wanting their life prolonged, (4) conversations about end of life, (5) making EOL decisions, and (6) information desired about EOL decision making.

Meaning of End of Life

When asked what end of life meant to them, residents used words such as "a stepping stone" and "the end of your physical life" to describe a transition at the end of life. They also expressed a readiness to die. One resident talked about death as a natural process.

Encounters With Death and Dying

Although they were not specifically asked, residents told stories about the deaths of others, including a spouse, a son, and other residents. Traumatic resuscitation events and generally positive experiences with hospice were recounted by the residents.

Not Wanting Life Prolonged

Participants often mentioned not wanting tubes or life support. A resident said, "Well I don't want to lie around and have them put tubes in me. I'm ready to go and any time that happens-that's fine."

Conversations About the End of Life

Many participants had not discussed their thinking about EOL care with anyone, including family members, staff, and physicians. Most conversations were about wills, divesting of belongings, and funeral planning. A few residents reported they had discussed EOL issues with their children. However, there were more comments about not talking about end of life. A resident said, "They [children] won't bring it up" and "younger people won't bring it up." Residents also indicated they did not have conversations with staff about end of life. A resident said, "They are so busy waiting on other people they don't have time" and "We won't bring it up unless you do." One resident reported talking with her physician about the negative consequences of resuscitation, but a majority had no previous conversation with physicians.

Making End-of-Life Decisions

Residents expressed concern about possible conflicts between adult children in decision making if the resident was unable to make their own decision. Comments often focused on making their own decisions about getting rid of belongings and taking care of financial issues, wills, and funeral planning rather than having someone else decide for them. They did not want their belongings and other decisions to burden their family members. When asked about staff involvement in EOL discussion, a resident commented, "It seems to me like they ask you that [about an advanced directive] on the way in. But I don't get the impression that they do any more than say that you have to get it."

Information Desired About End-of-Life Decision Making

Residents specifically mentioned they would like legal and financial information such as healthcare power of attorney, financial power of attorney, and insurance information. They also wanted to know the facts about CPR and feeding tubes. They commented that a program or small classes would give residents the opportunity to talk.

Perspectives of Family Members

Two focus groups were conducted with two and three family members. Participants included three women and two men, representing roles of adult children and a sister. Several family members expressed that their relative in the ALF had dementia. Five themes emerged from the analysis: (1) meaning of end of life, (2) care processes, (3) conversations about end of life, (4) making healthcare decisions, and (5) information needed about health status and care.

Meaning of End of Life

For family members, end of life meant the end of physical life on earth. They talked about preparing for the end of life and the experience of uncertainty about the amount of time their elderly relative had left to live.

Care Processes

Family members were most concerned about the quality and level of care that was being provided for their elderly relative. They also identified comfort as a major goal. A family member said, "One of the biggest things that we talked about once we got into this program, is comfort. We don't want to do anything invasive." Other comments focused on either satisfaction or dissatisfaction with healthcare provided by the ALF.

Conversations About End of Life

Family members expressed that disease and decline experienced by their elderly relative interfered with conversations about end of life. One family member commented, "I helped her complete an advance directive form, but her participation was less thorough than it would have been a couple years before that, so to me it was less meaningful probably than the spontaneous conversations we had before that." Conversations with physicians were primarily about illness progression.

Making Healthcare Decisions

Key components of decision making included not prolonging life, not having invasive procedures or resuscitation, having good pain control, and having an advance directive. In addition, family members acknowledged that they lacked important information for decision making. One family member said, "If she were of sound mind, I'd say it would be really important for her to have choices. But in her particular case, it's not really an option. So as a family member, you're kind of put in a role of trying to anticipate what they'd prefer."

Information Needed About Health Status and Care

Family members wanted information about their relative's health status and care options. One family member sought out information by going to voluntary agencies such as a Senior Help Line and Legal Aid. Suggestions made by family members included both one-on-one conversations and learning from others in a group. A participant commented that a group could function as a support system since "we are all in the same boat." They suggested that experts, including a chaplain, an attorney specialized in healthcare, parish nurse, or other medical persons, could provide needed information. They expressed they did not always know what to ask.

Perspectives of Staff Members

The first staff member focus group (n = 5) included the director of spiritual care, clinical administrator, a licensed practical nurse, resident services assistant, and resident services coordinator. The second focus group (n = 6) consisted of the executive director, assisted living manager, care manager, healthcare coordinator, reminiscence coordinator, and marketing assistant. The staff members had worked in assisted living from a range of less than 1 to 15 years. Analysis of focus group data revealed five themes: (1) care coordination, (2) staff roles in EOL care, (3) working with family, (4) conversations about end of life, and (5) EOL educational needs.

Care Coordination

Staff members acknowledged that all team members offered important perspectives and acted as a resource to one another. One staff member commented, "Everyone takes an active role in providing support." Assisted living facilities staff reported that they worked closely with hospice services to coordinate EOL care, but several expressed that hospice services were not always available when needed.

Staff Roles in End-of-Life Care

Staff members viewed the ALF as a home for the residents. A participant explained, "I am the nurse down the hall at the clinic that is coming into their home [horizontal ellipsis] their room is like their private bedroom in their home; it's not someplace I should casually be in." Providing presence, comfort and dignity, advocacy, and education were priority responsibilities. Care was individualized to meet the unique needs of each resident. One staff member stated, "We have to remember that we are not treating a condition, we are treating a human being and they are still a whole person." "We want to be present," expressed a staff member. Examples of strategies to promote comfort and dignity at the end of life included offering a comfort care basket to the resident/family, reading scripture, using touch, and performing a procession of honor, in which staff members followed the resident who had died as they were moved from the facility.

Participants discussed their advocacy and educational roles. "This is their death," stated a staff member. A participant said, "There is a kind of coaching with family members and then there is also a coaching process with the resident who is dying." One participant spoke about how much families do not understand, including do-not-resuscitate orders, power of attorney, and comfort care. Participants suggested education should be initiated early and include basic information about EOL care options.

Working With Family

Staff members valued involving family members. A staff member said, "We talk about family a lot just because they are so involved." They identified strategies for supporting families-ensuring availability of meals or food for family members, frequently checking in on the resident and family, providing accommodations for family to be present and spend the night, and ensuring that everyone is comfortable. However, they also commented that family and residents frequently did not talk, were not in agreement, or were not in the same place of acceptance. Two individuals described their involvement with family conflict as "awkward." A participant indicated that family stressors are difficult for staff and said, "It does distract you from what the real focus is with the resident." Another participant commented, "I have had to say I am here for your mom or your dad and whatever it is, whatever I need to do, and we need to do together to meet their needs and to make quality of life as good as it can be."

Conversations About End of Life

Staff reported that discussions about finances, selling of the property or house, and running out of money were more often a focus of discussions between staff, residents, and families in contrast to a focus on EOL healthcare decisions (advance directives) and the meaning of quality of life. One participant stated, "Usually with the residents, there is not much conversation around that [EOL care and decisions]" and the others agreed. However, participants expressed that it is crucial that conversations take place to address and clarify expectations. A staff member commented, "What seems like quality of life to them [the family] isn't necessarily quality of life to the resident." Another participant commented, "It is our biggest job to make sure that those [decisions] are held up and not altered from their wishes."

End-of-Life Educational Needs

Staff members suggested that residents and family members should be offered support groups, a reference library, and other available resources to help meet the needs for information about EOL decisions and healthcare. They also expressed that ALF staff could benefit from further education about EOL conversations. One participant suggested that a mentorship or preceptor experience for staff in EOL care delivery should be offered to learn from experienced care givers.

DISCUSSION

Differing Perspectives

Based on focus group data, few staff members initiated conversation about EOL care and decisions with residents. Residents and staff members may believe it is the physician's responsibility to initiate conversation about EOL decision making. In addition, the high incidence of dementia in ALFs reduces opportunities for meaningful conversation about EOL decisions. When nurses and other competent professionals in ALF settings do not see it as their responsibility to initiate conversation about death and feel uncomfortable about initiating conversation that focuses on planning for death, the likely outcome is that conversations about end of life do not occur very often.

Study Limitations

The study should be replicated in ALFs that serve lower socioeconomic groups and diverse residents. Also, research on interventions to facilitate EOL discussion in ALFs could identify important outcomes, such as cost-effective care and increased satisfaction for residents, family members, and staff.

Proactive discussions about EOL options and preferences will contribute to honoring preferences of ALF residents for their EOL care. The study findings demonstrate the need for system change in the protocols and practices for EOL discussions. When elders understand their health status, their healthcare options, and available resources, they will be more likely to communicate their decisions based on a reflection of what is important to them at the end of life.

Acknowledgments

The authors wish to thank Lores Vlaminck for providing the Hospice Transitional Care Plan and Sarah Powell for assisting with a staff focus group.

References