Resident and Caregiver Dyads Talk about Death and Dying in Assisted Living: A Typology of Communication Behaviors

Abstract

Background:

In the U.S., assisted living (AL) is increasingly a site of death, and anxiety about dying has been identified in long-term care residents and their caregivers. Communication about death and dying is associated with better quality of life and care at end of life (EOL).

Objective:

To understand communication behaviors used by AL residents and their informal caregiver partners related to death and dying, and address communication needs or opportunities applicable to EOL care in AL.

Design:

A thematic analysis of in-depth interviews from a subsample of data from a 5-year NIA-funded study.

Setting/subjects:

Interviewees were 15 resident-caregiver dyads from 3 diverse AL communities participating in Atlanta, Georgia in the U.S.

Measurements:

Interview transcripts were coded for communication behavior. Concordances and discordances within dyads were examined.

Results:

We identified a typology of four dyadic communication behaviors: Talking (i.e., both partners were talking with each other about death), Blocking (i.e., one partner wanted to talk about death but the other did not), Avoiding (i.e., each partner perceived that the other did not want to communicate about death), and Unable (i.e., dyads could not communicate about death because of interpersonal barriers).

Conclusions:

Older residents in AL often want to talk about death but are blocked from doing so by an informal caregiver. Caregivers and AL residents may benefit from training in death communication. Recommendations for improving advance care planning and promoting better EOL communication includes timing these conversations before the opportunity is lost.

Introduction

Assisted Living (AL) is among the fastest growing sectors in long-term care in the U.S. serving close to one million residents in 2018.¹ These communities have evolved into places with increasingly frail residents who are aging in place until death.^2–5 The Institute of Medicine has identified end-of-life (EOL) discussions as essential to a good death in long-term care as well as in other care settings.⁶ Recommendations include having conversations about values, goals, and informed preferences for better EOL care. EOL discussions with medical providers are associated with many positive outcomes, including earlier hospice referral, less aggressive medical care near death, better patient quality of life at EOL, fewer adverse health effects among bereaved loved ones,⁷ and reduced cost of end-of-life treatment.⁸ To date, limited research has focused on end-of-life conversations within long-term care.⁹ In this study, we investigated the nature of EOL communication among AL residents and their informal caregivers to learn best practices for improving these discussions and promoting better resident and caregiver quality of life at EOL.

Materials and Methods

Parent Study

Participants included in the current analysis were part of a 5-year NIH-funded study that used multiple data collection methods (in-depth and informal interviews, participant observation, social network mapping, and health and sociodemographic surveys) to identify best practices for EOL and palliative care in AL. Data presented here are drawn from three diverse AL communities from phase one of the larger study in Atlanta, Georgia in the U.S. whose sites were chosen to reflect variation in ownership type, size, licensing, resident income level, resident/staff profile, and location (see Table 1). Resident participants were selected if they were 85 years of age or older, had multiple chronic conditions, were diagnosed with a life-limiting illness, and/or used hospice. In addition to residents, administrators, AL staff, external formal care providers (e.g., hospice), and informal caregivers (usually family members) were also interviewed. The study was approved by the Emory University Institutional Review Board and all participants consented to participate. If a resident lacked capacity to consent, we obtained assent and acquired informed consent from a legal representative. To protect anonymity, we identify AL communities and participants using a pseudonym.

Table 1.

Characteristics of the Study Sites

Characteristic	PARKSIDE	FAIRHAVEN	SUMMIT PLACE
Licensing category 1	Assisted Living Community	Assisted Living Community	Personal Care Home
Ownership	Corporate	Private	Nonprofit
Location	Urban	Urban	Suburban
Resident socioeconomic status	Upper income	Moderate income	Moderate-to-upper-income
Resident racial mix	Majority white	Majority African American	Majority white
Licensed beds	115	180	36
Occupancy at start of study	106	80	27
Dementia unit	Yes	Yes	No

¹In 2011, Georgia added Assisted Living Communities (ALCs) and Personal Care Homes (PCHs) to its existing licensing category to accommodate rising acuity levels among residents and to facilitate aging in place

Data Collection

We purposively selected 5 residents in each of the three communities (n=15) who were interviewed in-depth and their informal caregivers who were interviewed separately. This method of conducting separate interviews with each member of a dyad enables partners to share experiences from their own perspectives and is a common approach used in family communication research when focusing on sensitive topics.^10,11 Transcript passages relating to residents’ social support networks and EOL were of particular focus. Data also included fieldnotes.

Data Analysis

We analyzed data thematically.¹² In stage 1, transcripts were coded by the research team using the master codebook, which included codes for communication, death, dying, hospice, advance directives, and bereavement (including memorialization). In stage 2, passages relating to death communication were extracted by cross-tabulating communication codes with death-content codes for each dyad partner and then compared statements by dyads for concordances and discordances across a spectrum of death-related topics: medical directives, body after death, memorialization service, and dying process. In stage 3, these findings were presented to the full author team and were discussed, questioned, reexamined, and revised; case studies were generated and compared. In stage 4, case studies were compared across the data set for larger patterns to develop a typology of communication styles; optimal cases were selected, and ideal type descriptions were generated.

Results

Study participants included 15 residents with an average age of 89 and 15 caregivers with an average age of 61. Most residents and caregivers were female and slightly more than a third of participants were African American. Residents were less educated than caregivers and the majority were widowed (see Tables 2 and 3).

Table 2.

Characteristics of the Study Participants

Category	Characteristics	Resident (n=15)	Informal caregiver (n=15)
Age	Minimum-Maximum (Average)	80-103 (89)	50-77 (61)
Gender	Male	5	4
	Female	10	11
Race	African American	6	6
	White	9	9
Education	High School	5	1
	Some College or 2 Year Associates Degree	6	1
	Bachelor’s Degree	4	4
	> Bachelor’s Degree	0	8
	Missing	0	1
Marital Status	Married	2	9
	Divorced	2	2
	Widowed	10	1
	Never Married	1	3

Table 3.

Characteristics of the Dyads

Death Communication Behaviors	Dyad	Community	Dyad Relationships	Age	Gender	Race	Education
TALKING	1	Parkside	James (Resident/Father) Tara (Daughter)	80 53	Male Female	AA1 AA	Some College or 2-Year Associate’s Degree > Bachelor’s Degree
	3	Parkside	Sally (Resident/Mother) Sandy (Daughter)	80 50	Female Female	White White	High School Diploma > Bachelor’s Degree
	7	Summit Place	Lil (Resident/Mother) Jean (Daughter)	94 66	Female Female	White White	Some College or 2-Year Associate’s Degree Some College or 2-Year Associate’s Degree
	10	Summit Place	Henry (Resident/Father) Anne (Daughter)	90 58	Male Female	White White	Some College or 2-Year Associate’s Degree > Bachelor’s Degree
BLOCKING	2	Parkside	Viv (Resident/Mother) Paul (Son)	94 68	Female Male	White White	Bachelor’s Degree > Bachelor’s Degree
	11	Fairhaven	Ruby (Resident/Mother) Thelma (Daughter)	103 Not Reported	Female Female	AA AA	Some College or 2-Year Associate’s Degree > Bachelor’s Degree
AVOIDING	4	Parkside	Frank (Resident/Spouse) Ellen (Spouse)	86 77	Male Female	White White	Bachelor’s Degree Bachelor’s Degree
	5	Parkside	Audrey (Resident/Mother) Mary (Daughter)	83 52	Female Female	White White	Some College or 2-Year Associate’s Degree > Bachelor’s Degree
	8	Summit Place	Maria (Resident/Mother) Stuart (Son)	89 Not Reported	Female Male	White White	High School Diploma Not Reported
	12	Fairhaven	Alma (Resident/Mother) Bruce (Son)	86 63	Female Male	AA AA	Some College or 2-Year Associate’s Degree > Bachelor’s Degree
	13	Fairhaven	Ken (Resident/Father) Erica (Daughter)	88 Not Reported	Male Female	AA AA	High School Diploma High School Diploma
	15	Fairhaven	Mr. Brown (Resident/Father-in-law) Roger (Son-in-law)	92 55	Male Male	AA AA	High School Diploma > Bachelor’s Degree
UNABLE	6	Summit Place	Jean (Resident/Mother) Maria (Daughter)	87 63	Female Female	White White	High School Diploma > Bachelor’s Degree
	9	Summit Place	Melanie (Resident/Mother) Anna (Daughter)	92 63	Female Female	White White	Bachelor’s Degree > Bachelor’s Degree
	14	Fairhaven	Toni (Resident with no Immediate Family) Miss Filbert (Fellow Church Member)	98 Not Reported	Female Female	AA AA	Bachelor’s Degree > Bachelor’s Degree

¹In this table, AA refers to African American participants.

Below we present a 4-part typology of communication that emerged from our thematic analysis (See Figure 1). We discuss each dyadic communication type below with illustrative examples.

Figure 1.

Typology of death communication behaviors with examples

1. Dyad Concordance: Talking

Some dyads were concordant in talking with each other about death (n=4). Both partners were interested in discussing aspects of feelings or arrangements that needed to be made at EOL. An example of “talking” is Dyad 3; Mother Sally, an 80-year-old White resident, and her daughter Sandy had discussed advance directives and burial arrangements. They had talked less about the dying process (including hospice) than about advance directives and burial, but there was an ongoing active discussion. Discussions touched on what Sally’s late husband would think (e.g., he was opposed to cremation) with the realization that his opinion no longer mattered. Regarding this ongoing dialogue Sandy stated: “I just wanna know everything [Mom] wants and she’s totally cool with talkin’ about it (death). She doesn’t get squeamish, or weird, or anything.” A similar example of “talking” is Dyad 7; Mother Lil, a 94-year-old White resident, and her daughter Jean wanted Lil’s death to be like Lil’s mother’s death where the two were together at the end. Jean stated: “A good death is how my mother describes her mother’s death. My mother was with her mother. Just the two of them.” At the time of Jean’s interview, the two women were working through the most cost-effective option for burial as money was an issue.

Talking dyads called attention to several opportunities for talking about death, most arising naturally within the context of normal life events. For example, after a memorial service for another resident, Sandy asked Sally what she thought of it and what she would like for her memorial service. People in this group also would talk when there were changes in either one of their lives, such as the move into assisted living or during the adult child’s retirement.

2. Dyad Discordance: Blocking

In contrast, in discordant dyads, one person blocked the other from talking about death and dying (n=2). A good example of this communication behavior was Viv, a 94-year-old White resident at Parkside, a former teacher and atheist, and her son Paul, a member of the clergy with whom she was very close (Dyad 2). At the heart of their discordance were religious differences and beliefs about the existence of an afterlife, and both said that they avoid talking about death because of it. When Paul brought materials from his church about a class on death and discussed his retirement and associated signed advance directives with a researcher in the presence of his mother, she used this interaction as an opportunity to begin a conversation about death, but was blocked:

Viv: “Of course we don’t know how long we’re going to live.” [hinting that it was her death that was relevant]

Paul [walking into the next room and back, seemingly agitated]: “I didn’t know you knew!”

Viv: “Nobody knows. Well, nobody ever wants to talk about it.”

Paul: “Why do we need to talk about it?” [silence]

As these data indicate, Viv and Paul each seemed to want to talk about death but not with each other.

On another occasion, Viv asked the study researchers to create a class on death for the residents but asked that it be non-religious. Other residents suggested need for information or counseling. Paul suggested that AL communities should facilitate EOL conversations with family members and their loved ones who may be undergoing communication changes. He described his mother as “barking” at him in a way that he felt was out of character and thought it might have to do with worsening cognitive impairment. Paul viewed facilitated conversations as “kind of raising the professional bar, if you will, for all of this. I think institutions can provide better psychological and religious information to patients and families.”

Dyad 11 represented a second example of blocking where a 103-year-old African American resident Ruby tried unsuccessfully to create opportunities to discuss death by reading listings from the obituaries in her daughter’s presence. According to Ruby, these attempts to broach the subject of her own death were quickly shut down. Ruby mimicked her daughter’s typical reaction: “Oh, Mother. Come on, Mother, you know better than that.”

3. Dyad Non-Communication: Avoiding

We also observed dyads who mutually avoided talking about death (n=6). In contrast to blocking, where one partner indicated wanting to talk about death and the other denied or ignored this need, avoidant partners each independently stated that they did not talk about death because it was not something the other dyad member wished to discuss. Dyad 12, an 86-year-old African American resident Alma living in Fairhaven and her son Bruce who was very protective towards her, exemplified “avoiding.” Bruce talked to Alma nearly daily and visited for one week a month. Although Alma said she discussed her health with Bruce, she indicated avoiding EOL discussion with both him and her other son, “They [her sons] don’t want to talk about that.” As his mother’s health care power-of-attorney, Bruce said he did not ask his mother about her EOL preferences but planned to make those decisions for her when the time came: “It’s been not something that we talk about, because she doesn’t wanna talk about dying…. the way that the power of attorney works is that I can make all decisions for her about what needs to be done.”

Another Fairhaven dyad, Dyad 15, also avoided discussing dying and hospice. The 92-year-old African American resident Mr. Brown indicated that the decisions would be made for him when needed and his son-in-law Roger said that it was too soon to talk: “Now, if he was in a situation to where he was transitioning, then we’d probably go into those conversations, but we haven’t gotten to that.” Unfortunately, the resident’s eventual hospice referral was introduced late in his disease process, which led to his passing in the hospital rather than at home as he and his family had wished.

Dyad 4, an 86-year-old White resident Frank, and his third wife Ellen who did not share children, also indicated that they mutually avoided the topic of death. Frank indicated that the topic of his death was “too negative to discuss.” Ellen indicated that she did not press the issue and stated, “I’m not sure he has adjusted to this stage of his life.”

Dyad Dysfunction: Unable

We identified dyads in a fourth category who were unable to talk about death because of dysfunctional relationships or assumptions regarding a resident’s inability to engage in these discussions (n=3). An illustrative example of this communication type was Dyad 9 from Summit Place, an emotionally distant mother and daughter. Both agreed that the 92-year-old White resident Melanie distrusted her daughter Anna because her son-in-law sold her house. Anna was not even quite sure of her mother’s religious beliefs. The two fundamentally disagreed over advance directives, with Melanie wanting “anything to stay alive” and Anna, who is her healthcare power-of-attorney, wanting the option to “pull the plug.” This disagreement precluded putting anything into writing, and no advance directives were on file. They also did not discuss more intimate topics such as burial or memorial service.

Another example was Dyad 14, a 98-year-old African American resident in Fairhaven with dementia who had never married or had children and did not have living kin. Her informal caregiver was a 55-year-old member of her church who described encountering paranoia and distrust and who felt there was no longer any opportunity to discuss EOL preferences: “Maybe if I had caught her when she was in a righter state of mind, and she could have made decisions on her own, she probably would have said ‘This is what I want.’”

Discussion

Our analysis identified a typology illustrating four death communication patterns that ranged from attempts at communication (talking or blocking) to complete refrainment from this communication (avoiding or unable). These findings show that certain residents at EOL often want to engage in EOL discussions but may lack these opportunities due to discomfort around these issues or because of other communication challenges. Recognizing and understanding these barriers can assist AL providers and other stakeholders to better promote open EOL discussions.

Dyads within the talking category often found opportunities to discuss death and dying within the context of everyday life events, such as a memorial service or in the event of the death of another resident or a family member. These findings indicate that such events, including resident deaths and memorial services which are common in AL, might segue easily into meaningful EOL discussions.

Within discordant dyads where blocking was identified, one or both members of the dyad did not wish to discuss EOL with the other dyad member. Sometimes it was the case that both members of the dyad wanted to talk but not necessarily with each other. We found that some informal caregivers were stifled by social norms that denote death and dying as taboo conversational topics. Others found the topic too painful to discuss.

Among those in the avoiding and unable communication types, we identified timing of EOL discussions as a key barrier. One assumption we encountered from a caregiver included under the avoiding condition was that it is most appropriate to wait to discuss death and dying when death and dying are occurring, which often can be too late. One caregiver under the unable condition believed that the timing for having these discussions had passed.

Interestingly, we found that more dyads had discussed medical decisions than had discussed dying (including hospice use). One possible reason for this finding may be that advance directives have been scripted with structured forms to complete. Perhaps formalizing hospice decisions as an advance directive could encourage these discussions. AL providers may also need to listen carefully for cues that either residents or families have unmet communication needs. A problem with waiting to have EOL conversations at a more opportune time is that cognitive decline may render these conversations impossible as in one case highlighted under the unable condition.

In line with findings from AL reported here, research from skilled nursing homes suggests that EOL conversations among residents and their informal caregivers are often limited.¹² An unfortunate form of non-communication we identified in this study occurred when each party avoided communicating about death and dying because they wrongly assumed that the other member of the dyad did not want to engage in these discussions.

Because openness about death, death anxiety, and perceived knowledge of surrogate decision making are often rooted in family experiences,¹³ our findings suggest that an outside party may be needed to help negotiate communication among residents and their informal caregivers, particularly when these relationships are dysfunctional. Other suggestions from residents include offering EOL counseling or classes for residents. In line with previous research showing that cultural factors, including religiosity or lack thereof, can have an important influence on EOL communication,¹⁴ one resident and her son noted that some residents and their informal caregivers may benefit from additional religious resources to help address EOL whereas others may prefer resources with no religious base. The family member in this dyad also suggested that AL communities should actively facilitate EOL conversations among residents and family members particularly when residents are experiencing difficulty communicating (e.g., due to cognitive impairment). AL staff and administrators may benefit from training in death communication to help promote these conversations. In making these recommendations, we acknowledge some barriers we have previously identified to engaging direct care workers in this process. Like residents and informal caregivers in this study, we have found that direct care workers also may be uncomfortable talking about EOL and may not receive the support they need to cope with grief resulting from residents’ deaths.¹⁵ Building in the realization that these workers also need to be acknowledged for grieving may help create a more welcoming AL environment for EOL conversations among residents and their informal caregivers as direct care workers sometimes play an intermediary role in facilitating transfer of information between residents and caregivers.¹⁶

Limitations

Our study had several limitations, namely its small sample size and scope within metropolitan Atlanta. A larger and more geographically diverse sample might reveal additional communication patterns, opportunities, and barriers not identified in this study. In addition, our research question for this analysis was not a specific aim of the parent study and we used secondary data analysis to explore this question. Despite these limitations, our data sources included rich, in-depth interviews and field notes from three AL communities and 15 AL resident-caregiver dyads who were experiencing the last stage of a resident’s life. We feel that our findings from a heterogeneous group of AL communities, while not representative of all AL settings, are transferable to other similar AL environments.

Conclusions

Resident-caregiver dyads exhibit variation in communication styles when talking about EOL wishes and desires. While some dyads talk openly about death, others seem unable to engage in any discussions about EOL. Between these two ends of the spectrum, some residents in AL often want to talk about death but are actively blocked by an informal caregiver. Others assume, along with their caregivers, that communication is not desired and so avoid initiating a conversation. Caregivers and AL residents may benefit from training in death communication. Support for families in advance care planning and other forms of death communication should include recommendations for timing conversations before the opportunity for meaningful conversation is lost. Staff may need more training in death communication to facilitate such conversations.