Concerns about how to pay for healthcare for an aging population have brought increased visibility to making choices about treatment and healthcare at the end of life. It is challenging to initiate and facilitate discussion about end-of-life (EOL) healthcare choices in a healthcare organizational culture that has traditionally emphasized treatment and cure. Without discussion between elders, family members, and health professionals, it is unlikely that preferences for EOL care choices will be honored. Elders may choose to live in assisted living facilities (ALFs) in their later years but may not have discussed their expectations and wishes for care when their care needs increase because of a decline in physical and/or mental functioning. As more ALFs provide opportunities for residents to "age in place," discussion in the assisted living setting about EOL treatment and care options will be needed to honor residents' preferences when they are terminally ill.1-8 Knowing how to talk with patients and families about dying is challenging in a culture that tends to deny aging and the inevitability of death.
BACKGROUND AND SIGNIFICANCE
Residents in ALFs may withhold their concerns and may not initiate dialogue because they make assumptions about the information wanted by nurses and physicians.9 Elders may think their family members already know their EOL care preferences, which is another potential barrier to discussion.10 In focus groups in senior centers and ALFs, participants said they were comfortable discussing EOL care issues, but they viewed others as being uncomfortable and resisting discussion about EOL decisions and expressed that a provider emphasis on cure and treatment prevented discussion.11 Demographic characteristics may also influence opportunities for and responses to discussion about EOL decisions. Daaleman et al12 found in a sample of more than 1000 deaths in nursing homes and ALFs that resident factors of nonwhite race and lack of private insurance were correlated with a lower prevalence of advance directives.
Elders are most open to discussing EOL preferences when they, a family member, or friend has experienced a serious or life-threatening illness.9,13 Analysis of focus group data from three different elder populations with ethnic and socioeconomic diversity revealed four categories of influence for their participation in advance care planning: concern for self; concern for others; expectations about how advance care planning would impact them; and their own anecdotes, stories, and experiences.14 Additional factors that facilitate EOL discussion are a straightforward approach and having someone else initiate and facilitate the discussion.13 Content for advance healthcare planning and EOL discussion can include listening to the elder's story, their fears and anxieties, the importance of family and friends, and the loss of dreams; addressing what to expect in the progression of end of life; and exploring how the elder wishes to handle decline of health when it comes. Elders need uninterrupted time and someone who is skilled in communication-active listening, encouraging disclosure and allowing silence, providing written material, and addressing inconsistency in verbal and nonverbal messages.9,15
Assisted living and long-term care (LTC) settings emphasize maintaining health and rehabilitation, which can lead to confusion about care goals for EOL care. In one study, based on interviews with LTC staff (RNs, licensed practical nurses, and social service workers), researchers suggested that staff members did not have a formal "script" or set of expectations for discussing end of life and providing palliative care.16 When death becomes hidden rather than understood as a natural and inevitable occurrence, a tension results between policies that focus on increasing independence and policies that emphasize providing supportive comfort care for dying residents.17
The palliative care needs of ALF residents may "fall through the cracks" in a model that provides palliative care only for imminently terminally ill residents.18 Elders residing in private homes, nursing homes, hospitals, and ALFs have similar experiences of symptom distress at the end of life and a need to discuss EOL preferences.5,19,20 Conflicting expectations (expecting death, not expecting death, expecting to know when death will occur) may result when there is a lack of discussion about EOL healthcare.21 In a study that compared staff and family member expectations and beliefs about factors surrounding death in ALF and LTC settings, 30% to 40% of the sample of staff/family member pairs disagreed on expectations and beliefs about the death of an elder.22
Dementia may also contribute to uncertainty for family members who make decisions about EOL care for their elderly family members. In a qualitative research study that explored EOL family decision making for elders with advanced dementia in nursing homes, data from eight focus groups showed that family members made decisions that were consistent with the life story of the elderly family member-decisions that would honor the elder's best interests and integrity of the elder's life.23 The researchers suggested that overall, family members' decisions had a pattern of moving from autonomy (what individuals choose) to beneficence (what promotes the most good) for the elder. However, family members may be left with uncertainty if they did not have an opportunity for earlier discussion about what their elderly family member preferred.
Several studies have investigated the effect of information on EOL decision making among elders. Both Caucasian and African American elders from community settings and ALFs who were given enhanced information on the risk, benefits, and life-sustaining treatment options and were asked about their responses to hypothetical medical decisions had reduced decisional conflict in comparison with a group that had no additional information.24 In a study on preferred EOL care for persons with advanced dementia, elders served by a primary clinic in a rural area were given a verbal description of dementia and were also provided with the goals of care (life prolonging, limited, or comfort).25 Participants were randomized into two groups; one group viewed an educational video, while the other group had no additional intervention. Participants who viewed the video were more likely to prefer comfort care; in addition, a higher health literacy level was associated with comfort care. In a study on family discord in EOL treatment decisions, greater family discord was associated with stronger preferences for life-prolonging treatment; the researchers suggested that counseling protocols on EOL treatment could reduce family conflict in EOL decision making.26
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.
The purpose of this study was to answer the following research question: what are the perspectives of residents in ALFs, family members, and staff members about EOL discussion and experiences. Hamilton's Contractual/Community Model27 provided a rationale and framework for investigating the viewpoints of residents, family, and staff members, as well as the context for organizational culture and societal attitudes toward death and dying. The model explains how the values of persons involved in EOL decision making and healthcare and the contextual aspects of society and culture all provide input into EOL decisions. Schaffer28 used Hamilton's framework to explore ethical problems encountered by Norwegian elders in EOL decision making from the perspectives of Norwegian healthcare professionals, elders, and family members. Based on the framework, important perspectives that contribute to EOL decisions for elders include (1) the elder's goals and values, (2) family members' goals and values, (3) healthcare team members' professional and personal goals and values, (4) the institution's goals and values, and (5) society's goals and values, expressed in laws and ethical standards. This study aimed to explore perspectives of ALF residents, family members, and staff members to identify strategies to encourage EOL discussion that are consistent with goals and values of these groups.
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.
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
For residents and family members, questions addressed the meaning of end of life, conversations about EOL healthcare decisions, the kind of EOL healthcare they would like to have for themselves or their family member, their use of advance directives, and the information and discussion they wanted about EOL healthcare. See Table 1 for resident focus group questions. Staff members were asked to describe their experience with death in their work setting; any concerns they had about EOL decision making; any conversations they had with residents, family members, or other staff about end of life; facilitators for and barriers to EOL discussion; and additional information, resources, and strategies needed to promote effective EOL discussion. Demographic data on residents and family members were not collected to encourage a more informal atmosphere for these focus groups.
|TABLE 1 Resident Questions|
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.
Each individual focus group was analyzed to identify content themes. The researchers organized the focus group data by computer to identify consistent responses that represented themes for each individual group. Next, the themes were compared and combined for each participant group-residents, family members, and staff members. Three of the researchers had expertise with EOL care or education; two had experience with hospice or palliative care, and the third was an ELNEC trainer.29 Following the analyses of each group by one of the three experts, the other two experts reviewed and validated the fit of participant comments with the identified content theme to ensure data quality.
All focus groups took place in three ALFs located in suburban, predominantly white, and middle class communities. All focus group participants were white. Table 2 summarizes themes identified for each participant group.
|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.
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.
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.
Based on Hamilton's Contractual/Community Model,27 study results highlight the differing values and goals of ALF residents, family members, and staff members about their experiences and preferences for EOL healthcare. The residents' stories about the deaths of others indicated that they had contemplated death as a reality. When residents discuss the deaths of others, it is an opportune time to initiate discussion about EOL choices because this is a time when elders are open to discussing their own preferences.9,13 However, residents in this study experienced minimal opportunities for discussing EOL healthcare choices. Most of their discussions had been about taking care of the practical preparations for end of life including financial and funeral planning, consistent with findings in the study by Malcomson and Bisbee.11 Although family members expressed a need for adequate information for making a decision consistent with the wishes of the elderly family member, the elders in this study perceived that family members were not ready to hear the elders speak about death. This discrepancy in perspectives may lead to waiting until it is too late in the elder's illness trajectory to have meaningful conversations about EOL choices.
Family members acknowledged that their goal was not to prolong life or have invasive treatment of their elderly relative, while residents made many emphatic comments about not wanting to have life prolonged. Family members were much more concerned about care processes and experienced bewilderment about what to expect regarding prognosis and care options. Residents were more concerned about possible family conflict and hoped that they could make their own decisions without being a burden to family members, which is consistent with the findings of Malcomson and Bisbee11and Schaffer28 about elders' concerns of being a burden to family.
Although staff members indicated they valued supporting resident choices for EOL care, resident comments indicated that staff members did not initiate conversations about EOL healthcare preferences other than ensuring the existence of an advance directive. Some staff members did not feel prepared to initiate EOL conversations with residents and family members. Staff members may feel more secure with providing physical comfort care for actively dying patients. The lack of discussion of wishes for EOL care with physicians is consistent with previous research findings in nursing home and community settings.10,30
All three groups identified the need to have more information about EOL decisions and care. Residents wanted information about taking care of practical matters as well as learning about CPR and feeding tubes. Family members were most focused on needing information about care options as well as knowing what to expect regarding the decline of their elderly relative. Staff members identified a need for support groups for family members and education on how to support residents and families in the dying process. Previous studies indicate that specific educational strategies reduce family conflict and promote a desire for comfort care as a care option at the end of life.24-26
Organizational and Societal Context
Hamilton's Contractual/Community Model27 provides a rationale and framework for investigating the viewpoints of residents, family, and staff members and also addresses institutional and societal values and goals that support EOL decision making and care. For staff members, ALFs supported care strategies for EOL care they provided; however, a deliberate strategy for discussing choices and educating residents and family members about care options was missing. The lack of implementation of a palliative care approach prior to imminent death is consistent with an LTC "script" or expectations for care goals that are reflective of an emphasis on maintenance and rehabilitation. Death is not acknowledged through conversation, although it is inevitable and a natural outcome.17 In contrast, a palliative care approach does acknowledge the inevitability of death and also seeks to provide quality care and comfort in ways that recognize the needs and wishes of both the patient and family.31
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.
The resident sample was limited by the frequent occurrence of dementia among residents. Although the rate of dementia was not available for the ALFs in the study, comparable settings show a high rate of dementia; 67.7% of participants in a random sample of ALF residents from 22 ALFs in Maryland were determined to have dementia based on the Diagnostic and Statistical Manual of Mental Disorders.32 For the current study, selection bias was present because directors provided names of participants who they believed would be willing and able to participate. Also, while the elders included in this study were cognitively capable of holding conversations, most family members who participated in the study had relatives whose dementia prevented meaningful conversation. The small number of family members in the sample reduced the likelihood that a variety of viewpoints of family members were represented in study findings. In addition, the sample had limited variability in ethnic and socioeconomic status.
IMPLICATIONS FOR PRACTICE AND RESEARCH
Changes in the organizational context are necessary for creating opportunities for conversations about end of life, building community acceptance and comfort with initiating EOL discussion, and providing the support and mentoring for promoting a peaceful death. The different perspectives of all involved in EOL situations should be considered when designing strategies for initiating EOL discussion to create a palliative care script that celebrates life but accepts a natural dying process through comfort and excellent holistic care. Counseling and educational strategies for residents, family members, and staff will increase knowledge about what to expect at the end of life, the available resources, and what can be done to support a peaceful death. The culture of the organization must also change to embrace a palliative care philosophy. Respecting Choices, a program developed by Gundersen Lutheran Medical Center in La Crosse, WI, provides a community model for reaching out to community groups to discuss healthcare planning and EOL decisions.6 Honoring Choices Minnesota33 showcases discussion about EOL decision making with community groups. Educating whole communities about EOL decisions and providing opportunities for dialogue have resulted in increased consistency with following preferences expressed in advanced directives. See Table 3 and 4 for strategies and resources for promoting dialogue on EOL healthcare choices. A template for a transitional plan to comfort care (Figure 1) can serve to tailor a repertoire of comfort measures that will best meet the care needs of residents who are near the end of life. Assisted living facilities can be more deliberate in developing a plan to address creating and promoting a culture that supports a palliative care philosophy. See Figure 2 for suggestions for the development of a leadership plan to move organizational culture toward a clear script of acknowledging death as a natural process.
|TABLE 3 Strategies to Promote EOL Discussion in ALFs|
|TABLE 4 Resources for Promoting Dialogue about EOL Healthcare Choices|
|FIGURE 1. Example of transitional plan to comfort care. Reprinted with permission from Lores Vlaminck.|
|FIGURE 2. Leadership strategies: developing an organizational culture for palliative care.|
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.
The authors wish to thank Lores Vlaminck for providing the Hospice Transitional Care Plan and Sarah Powell for assisting with a staff focus group.