Assisted living (AL) communities are long-term care settings where people live, work and visit, and where social relationships and care, including end-of-life care, are negotiated. AL is fraught with uncertainty and conflict about values, especially given residents’ cognitive and physical frailty. These value-laden issues have implications for both resident and care partners’ experiences. Yet, almost no research has examined ethics in this complex care environment. In this article, we draw on and synthesize existing theory, research, and practice knowledge to offer a conceptual model and discuss case examples that highlight everyday ethical issues in AL. We conceptualize the moral decision-making process and hence, the moral landscape of AL, as influenced by a myriad of multi-level factors that shape inter-personal encounters and decision-making involving residents and their care partners, which ultimately shape individuals’ actions and experiences in the setting. We conclude by discussing implications for research, policy, and practice.
Assisted living (AL) communities are increasingly popular long-term care settings where people live, work and visit, and where social relationships and care are negotiated. In the context of daily life, residents, their family members and friends, AL care workers and other staff, external care providers, and volunteers continually encounter one another and make choices about a range of matters. As part of these decisions, uncertainty and conflict about values are bound to happen, especially given residents’ cognitive and physical frailty. Addressing these value-laden issues associated with daily life and the receipt and provision of care has important implications for both resident and care partners’ quality of life. Yet, almost no research has examined ethics in this dynamic and complex care environment.
Following the National Center for Ethics in Health Care and the U.S. Department of Veterans Affairs (2015, p. 62), we define “ethics” as “the discipline that considers what is right or what should be done in the face of uncertainty or conflict about values. Ethics involves making reflective judgments about the optimal decision or action among ethically justifiable options.” Existing literature addressing ethical approaches and decision-making frameworks focuses on acute care and clinical spaces and is less applicable to AL settings (Holmes et al., 2020; Rasoal et al., 2017). In contrast to medical encounters between a provider and a patient, the AL context straddles health care and home where values conflicts can arise among multiple stakeholders. Because no overarching model exists, regulatory bodies, such as those covering nursing homes, fail to support ethical decision making in long-term care and emphasize adherence to rules than that the promotion of moral decision-making.
Prior to the COVID-19 pandemic, the AL industry was coming under public scrutiny in the media. In the 2019 New York Times Opinion Piece, “How Not to Grow Old in America,” for instance, journalist Geeta Anand documents her experiences caring for her mother who moved to, declined, and passed away in an AL community. Meanwhile, also in 2019, Atlanta Journal Constitution journalists wrote an investigative series entitled, “Unprotected: Broken Promises in Georgia’s Senior Care Industry.” These works raise concerns about the AL industry and its ability to fulfill expectations for resident independence while simultaneously providing care to older adults with varying levels of physical and cognitive function. Rebuttals in defense of AL highlight the excellence of certain providers as well as variation within the industry (Golant, 2019).
In Georgia, this scrutiny, further magnified by the pandemic, led to sweeping regulatory changes effective July 2021, including increased maximum fines for violations, additional nursing service requirements, new certification requirements, and higher staffing level in memory care units ( Georgia HB 987 ). Georgia is not alone. Since 2015 84% of states made regulatory, statute, or policy changes affecting AL, including 27 states where changes were made between 2018 and 2019 alone; changes most commonly sought to improve resident protections (National Center for Assisted Living, 2019).
Ultimately, these debates and regulatory moves suggest that AL requires examination using an ethics lens. In light of limited research and recent increased public attention, we seek to understand the everyday ethics of AL and articulate its largely unseen moral landscape. By better understanding these phenomena, we can develop strategies to improve care experiences and outcomes for those who live and work in AL communities.
Here, we synthesize existing theory, research, and practice knowledge to offer a conceptual framework, the “Ethics in Long-Term Care Model.” This model demonstrates the factors at play in AL and guides researchers, practitioners, and other key decision-makers including residents, their family members, and care workers. We illustrate our model using case examples involving everyday ethical issues in AL communities. First, we introduce an overview of ethical principles.
In order to understand and address ethical problems, it is necessary to have clarity on what is at stake. Various theorists have highlighted a range of values, principles, and method for identifying and resolving conflicts in ethics. One well-known model of “principles” is the conceptual framework of Beauchamp and Childress (2001) who identify: (a) autonomy; (b) beneficence; (c) nonmaleficence; and (d) justice. Autonomy focuses on identifying and supporting the capacity in which residents exercise self-determination and authenticity in terms of care, activities, and preferences. Beneficence centers on promoting resident’s best interest while avoiding harm, especially when resident’s capacity is compromised due to illness such as dementia. Nonmaleficence is crucial in that care workers, administrators, and care communities should avoid actions and regulations that are likely to cause harm to residents. Lastly, justice is the idea of giving each their due by providing equal access, fair allocation of benefits and burdens and ensuring procedural fairness throughout the entire community of stakeholders (Post & Blustein, 2015). The principle of justice can apply both on the micro level (i.e., about the rights of individual residents) as well as on the macro level (i.e., how access to AL communities are often the result of socio-economic status and not resident need).
In the course of daily life, residents, staff, and family members encounter one another and make decisions, including countless with moral implications. The number of values at play in a specific decision or context varies with the complexity of the case and individuals involved. Ethical dilemmas, conflicts, or uncertainties are apt to arise and require resolution.
Our understanding of ethics in AL is informed by our synthesis of two relevant theoretical frameworks, both reflected in Figure 1 . The first, “Convoys of Care” model, shows that individuals who receive long-term care, including AL residents, are embedded in care convoys (i.e., networks) made up of a dynamic constellation of informal (i.e. family, friends, and acquaintances) and formal (i.e. paid care workers) care partners and that are influenced by multiple factors at multiple levels and affect residents’ care arrangements, quality of care, and ability to age in place (Kemp et al., 2013; 2018). The second framework comes from an ethics perspective. Glaser (1994) and Nelson (2010) conceptualize the levels at which conflict or uncertainty can occur and highlights the locus of ethical conflicts between personal, professional, institutional, and societal levels. If we consider the individual and their values nested in the center circle, within this framework, then surrounding larger concentric circles representing potential areas of conflict. For example, providers and care partners represent the next circle surrounding residents. Conflicts can easily arise between these decision-makers. The next circle is the institution where the individual resides and seeks care, such as AL. Finally, the outer-most circle represents society and its values.
Ethics in Long-Term Care Model
Using data-informed case studies, we examine how the misalignment between values decisions of stakeholders can result in conflict. For example, a resident may believe voluntary stopping of eating and drinking is morally acceptable and should be provided to those who request it. The AL provider who the resident interacts with may be supportive, but the AL institution in which they receive care and provide care does not morally permit it on religious grounds. Conflict also can exist more narrowly focus between the resident and provider/staff.
Critically, both frameworks are shaped by a social-ecological approach (Moos, 1979), which highlights the need to understand the influence of and relationships between the multi-level contexts that surround given social phenomena, in this case, ethical issues. As a result, our “Ethics in Long-term Care Model” identifies where potential values, conflicts or uncertainties can occur in AL settings and for whom.
As shown in Figure 1 , we conceptualize the decision-making process and hence, the moral landscape of AL, as influenced by a myriad of multi-level factors that shape inter-personal encounters and decision-making involving residents and formal and informal care partners, which ultimately shape individuals’ actions and experiences in the setting. These factors include influences operating at the following levels: societal; regulatory and industry; local community and care community; and care network, resident and care partner(s).
Intersecting macro-level influences, including social, demographic, cultural, economic and public health forces shape the AL residents’ experiences and enter into moral decision-making pertaining to their health, well-being, and daily life. The pandemic has privileged healthcare and public health contexts leading to an emphasis on infection control and bans on group activities and visitors, which have negative consequences for residents and care partners (see Kemp, 2021). During non-pandemic times, however, in the United States and other Western nations emphasize autonomy and independence and not being a burden to others. Yet, the likelihood of debilitating chronic conditions and adverse health events increases with age; maintaining full independence as one ages and experiences health declines is difficult. The AL industry attempts to fill the support gap for persons who want or need additional services and for whom care at home is no longer feasible.
Another component of social influence relates to who lives and works in these care settings and the potential differences that might enter into value systems and judgements. Over 80% of AL residents are 75 years of age and over; 70% are women (Caffery et al., 2012). Likewise, women comprise 84% of the AL direct care workforce (Scales, 2020). There is limited racial and ethnic variation; recent estimates show 81.4 % of AL residents are Non-Hispanic white (Harris-Kojetin et al., 2019). Unlike residents, staff are younger with nearly half being under the age of 35 years and more racially and ethnically diverse; 47.5% are non-White and nearly 20% are foreign born (Kelly et al., 2020).
A final dimension of social influence is economic considerations. Nationwide, over 80% of AL communities are for-profit; nearly 60% are chain affiliated (Harris-Kojetin et al., 2019). Typically, monthly fees are paid for privately by residents or their families, but approximately 16% have Medicaid as a payer source (Harris-Kojetin et al., 2019). In 2020, the annual cost of AL was $51,600 in American dollars (Genworth, 2020) indicating that most AL residents have access to material resources. In contrast, however, half of the AL direct care workforce has personal incomes that fall significantly below the federal poverty threshold median total personal income of $18,152 in American dollars; half are without employer-provided health insurance (Kelly et al., 2020). Further, 42% of direct care workers require public assistance due to low earnings and high rates of poverty (Scales, 2020). Overall, direct care workers’ salary and benefit compensation fail to match the extraordinary demands of the job.
Encounters between residents and care partners and accompanying decision-making processes are negotiated within the contexts of regulatory- and industry-level influences. In the U.S., AL is state-regulated, which translates into variation, including difference in values and rules that contextualize decision-making. State regulations govern licensing, hiring and training requirements, staff-to-resident ratios, and resident admission and discharge criteria.
Generally, “assisted living” is an umbrella term for non-medical residential care settings that provide 24-hour oversight, meals, and assistance with activities of daily living, and with medications (Carder et al. 2015). In theory, AL is predicated on a social, rather than medical model of care, and ideally offering holistic care in a home-like setting with an emphasis on maximizing resident autonomy and independence (Harris-Kojetin et al., 2019). In recent years, AL has outpaced nursing homes in number of individuals served, a shift that is projected to hold for the foreseeable future (Silver et al., 2018). Residents and families with sufficient economic resources choose AL because it is socially preferable and seeks to manage complex care needs through enhanced care services.
Less than 20% of communities are not-for-profit (Harris-Kojetin et al., 2019), meaning AL is a business. Residents and families are consumers and there is competition to attract and retain residents and maintain optimal census levels. Meanwhile, industry-wide issues with staff retention and turnover reflect complex social, political, and economic structures and values that pose challenges for residents, staff, and families (Ball et al., 2010; Dill et al., 2013). Turnover reduces the likelihood of consistent assignment and care continuity and is a major stressor in the care landscape, potentially influencing ethical situations.
Simultaneously meeting consumer preferences for a home-like care setting that emphasizes independence, privacy, and autonomy; addressing residents’ complex care needs; and providing a safe, secure, environment in a communal-living situation can prove challenging and potentially lead to conflicts between which values and priorities are emphasized and by whom. Consequently, these settings are environments of “negotiated risk” where autonomy and independence frequently are weighed against safety, protection, and oversight leading to a plethora of ethical issues (Barmon et al., 2017; Morgan et al., 2021; Perkins et al., 2004). Unlike acute care settings, however, AL communities are not required to have a mechanism to resolve ethical conflicts or uncertainties. Our research experiences suggest that administrators and care workers routinely face ethical questions, possibly without recognizing them as such, but also without resources to resolve such issues.
Little work exists on ethics in AL communities. Powers (2005) draws attention to the importance of identifying competing interests, asking questions, and considering the pros and cons of given ethical issues. A broader analysis of the settings of conflicts and specific unique ethical issues experienced by stakeholders in the AL setting is required. Recent work by Menio & Mathes (2020) identified what they refer to as “the five commitments of long-term care,” including: “(a) to respect the individual, (b) to preserve and promote health, (c) to project safety, (d) to ease pain and suffering, and (e) to provide opportunity and support for the continuation and completion of life story” (p. 151).
Menio and Mathes’ (2020) framework is helpful in highlighting system-wide principles. Yet, it is predicated on the notion that long-term care is “inherently an ethical undertaking because it involves fulfilling commitments to vulnerable older persons” (p. 151). A slight refocusing of the lens suggests that both formal and informal care partners also are vulnerable and ethical stakeholders (Burgess et al., 2018; Kemp et al., 2013; Kemp, 2021). Efforts to understand the moral landscape and support ethical decision-making in this and other care environments must consider power dynamics and vulnerabilities in care arrangements. Furthermore, the Meino and Mathes framework overlooks the variety of levels in which these conflicts or uncertainties can occur. For example, their exclusive focus on “care” limits understanding of the role of institutional and societal values in this setting.
AL communities are located in urban, suburban, and rural areas, large and small. These surrounding communities have different resources and characteristics. Distinct cultural influences, including the values and beliefs, and possibly differing faith traditions, shape attitudes towards care and influence interpersonal interactions and moral decision-making.
Care communities vary in size and composition ranging from small personal care homes to vast communities with multiple levels of care or supportive housing. This considerable variation in size and capacity may influence staff-resident relationships as well as home culture. Data from 2014, indicate that 60% of care communities had between 4 and 25 beds, but 70% of residents lived in AL communities with 50 beds or more (Caffrey et al., 2015). In small care settings there are fewer opportunities for privacy and more opportunity for intimacy among coresidents and between residents and staff relative to larger communities (Fitzroy, 2020).
Care communities vary in terms of the percentage who offer the following services directly or through external providers: social work (51%); therapies (71%); skilled nursing or nursing (55%); pharmacy (84%); hospice (68%); and dietary or nutrition services (83%) (Harris-Kojetin et al., 2019). These providers represent key care resources, but bring their own professional ethical and moral codes, which potentially complicates the decision-making landscape.
Care settings vary in resident characteristics, including resident level of physical and cognitive function. Although industry-wide a considerable percentage of residents have dementia, only 14% of communities have a designated memory-care area and 9% exclusively serve residents with dementia (Harris-Kojetin, et al., 2019). Over three-quarters of AL residents have 2 or more chronic conditions; high blood pressure and Alzheimer’s disease are most common (Caffrey et al. 2012). In a recent study, Kemp et al. (2018) found that over half of AL residents studied needed assistance with three or more activities of daily living, more than 80% needed assistance with instrumental activities, and three-fourths needed medication management assistance. Residents’ collective needs and abilities in each community influence the nature and number of ethical problems in the setting.
Although AL communities attempt to promote resident autonomy, a key guiding ethical principle (Beauchamp & Childress, 2001), most communities structure daily life around rigid care routines, meals, and standard group engagement activities and emphasize safety and security supporting peace-of-mind for families not necessarily resident choice. Consequently, residents may find their autonomy limited, depending on policies related to privacy, security, the observation of routines, and choices regarding care (Morgan et al., 2021). Despite emphasizing home-like environments, the physical setting along with care routines and scheduling often seem more institutional (Armstrong, 2018).
Our research shows that as AL residents’ health care needs escalate in complexity, a growing number of individuals interact and are involved in day-to-day decision-making in the settings– each with their own priorities, knowledge, resources, values, and beliefs that factor into action and everyday experiences (Kemp et al., 2019). The contributions residents make to their own care convoys, including decision-making, are highly variable, especially over time (Morgan et al., 2021). Some residents take charge of their convoys; some depend entirely on others. Most resident contributions fall somewhere in between (Kemp et al., 2018). Thus individual, dyadic, and convoy dynamics are apt to influence decision-making processes and are essential for understanding the ethics landscape of AL alongside the influence of the complex environments in which these care relationships are nested.
We use cases derived from two longitudinal qualitative studies, “Convoys of Care: Developing Collaborative Care Partnerships in Assisted Living” (R01AG044368 to Kemp) and “Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia,” (R01AG062310 to Kemp) both set in AL communities, to illustrate our model. Table 1 outlines key study characteristics. For purposes of anonymity and confidentiality, we use pseudonyms for sites and participants. These cases highlight common issues and a range of influential factors rather than illustrating the full complement of ethical issues in AL.
Select Project Characteristics by Study
| STUDY CHARACTERISTICS | STUDY 1 Convoys of Care: Developing Collaborative Care Partnerships in Assisted Living | STUDY 2 * Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia |
|---|---|---|
| Overall study goal | To learn how to support informal care and care convoys in AL in ways that promote residents’ ability to age in place with optimal resident and caregiver quality of life. | To identify best care practices aimed at recognizing, creating, and maintaining optimal meaningful engagement opportunities for persons with dementia. |
| Funding dates and source | 2013–2019 National Institute on Aging at the National Institutes of Health R01AG044368 | 2018–2023 National Institute on Aging at the National Institutes of Health R01AG062310 |
| Number of sites actual/planned to date | 8/8 | 4/12 |
| AL community locations | Urban, Sub-Urban, Small-Town USA | Urban, Sub-Urban, Small-Town USA |
| AL resident licensing capacity range | 2–99 | 6–100 |
| Duration in each study community | 24 months | 12 months |
| Participant observation hours/number of visits completed to date | 3,738/1,561 | 1,560/502 |
| Total participants | (n=219) | (n=133) |
| AL administrators and staff | 49 | 48 |
| Residents ** | 50 | 33 ** |
| Family members/friends/volunteers | 91 | 40 |
| External workers | 29 | 12 |
| Institutional review board approvals | Georgia State University: H13439 | Advarra: Pro00029867; Georgia State University: H19198; Emory University: IRB00108144 |
| Published materials to date | Kemp et al., 2018; 2019; 2020; Morgan et al., 2021 | Ciofi et al., 2021; Kemp et al., 2021 |
** Study 1 includes 15 residents and Study 2 includes 19 residents who were enrolled, observed, and talked to informally, but could not be formally interviewed.
In her 80s, Polly, a married woman, lived at The Gardens, a corporately-owned all memory-care community housing approximately 25 residents. Staff frequently left residents’ doors open based on the philosophy that residents should be able to come and go as they would in their own homes. Jerry, a 62-year old resident with early-onset dementia frequently mistook Polly’s room, which was on the same hallway, for his own. He used her bathroom and occasionally, her bed. Polly was unfazed by Jerry’s appearances in her room, simply going elsewhere and returning later. During his daily visits, Polly’s husband, Joe, expressed concerned about a man moving in and living on his wife’s hall. He became distraught upon finding Jerry in Polly’s room. Joe spoke with the care director, who in turn, encouraged staff to monitor the situation. But, Jerry and Polly lived in a far corner, out of sight from common areas making continuous oversight challenging.
After several instances of Joe finding Jerry in his wife’s room, he demanded that Polly be moved or he would find another community. Polly experienced both long- and short-term memory issues, but she knew the location of her room and navigated there regularly with confidence. For this reason, the Gardens’ management and staff discouraged relocation. However, Joe was her medical power of attorney and the paying customer and staff had limited power of persuasion. Ultimately, Polly relocated to a different hallway away from Jerry. Polly, became confused and spent much of her day searching for and asking about her room, escalating her daily anxiety.
Ninety-year old Jack was a long-term resident of Holly House, a family-owned small-town care community that was home to 35 residents. Unlike most residents, Jack did not have dementia. However, he had significant health problems and required assistance with bathing and dressing. Care staff spent a considerable time with him, including two care workers, Jan and Trudy, who consistent with the community’s care philosophy and practice, were regularly assigned to him. A people-person, Jack frequently used his time with care staff, especially Jan and Trudy, to forge close bonds. Other staff commented that the pair “spoiled” him.
Over time, Jan and Trudy began to confide in Jack about the intimate details of their lives, including their hardships, and sometimes they asked him for advice. Both women immigrated from other countries and regularly sent money to their families and struggled to pay for their children’s education. Emotionally, Jack took on many of their concerns and worried about their welfare, which sometimes caused sleepless nights. Jack knew both women could use financial help, but neither would ask. Always wanting to show appreciation and help out, Jack waited until Christmas. He gave holiday cards to all staff. Each contained a modest amount of money except for Jan and Trudy who received substantial sums.
Jane and Roger, both in their 90s and widowed, were residents of Holly House’s memory care unit. Roger, a self-described “ladies’ man,” had a form of dementia that affected his decisional-capacity. Upon move-in, Rogers’ advances were rebuffed by all female residents, which left him depressed and with unmet intimacy needs until he met Jane. In common areas, the pair sat together and held hands. Despite just meeting, she called him, “Sweetie” and believed they had a long history. Being with Roger quelled her anxiety and displaced concerns about where she was and what she should be doing. For his part, Roger’s spirits buoyed. Initially, the staff observed without interference. Rather, they gossiped about the romance. Overtime, the physical relationship between the couple escalated to kissing and touching in common areas. Coresidents expressed their disapproval by shouting or leaving the area.
Once Jane and Roger’s physical relationship escalated beyond hand holding, staff began separating them. The couple managed to reconnect in common areas or in one of their private rooms, including several times when they found Jane in Roger’s bed. Staff grew increasingly unsure about what to do, especially given Jane’s memory and confusion and Roger’s compromised decisional capacity. Staff discussed the couple’s situation with the owner who in turn, reached out to family members.
In her mid-60s, Alice moved to Parkview, a large corporately-owned care community following the progression of early-onset dementia. With the help of her ex-husband, Edward, she researched communities and found Parkview was willing to accommodate her living openly as lesbian. Staff were given sensitivity training and, for a time, Alice was able to advocate for herself, including expressing her identity. Management and staff turnover at Parkview alongside Alice’s cognitive and physical decline and relocation to a higher-care unit and meant most, if not all, of the staff who received training were no longer caring for her. And, Alice’s ability to communicate verbally was rapidly disappearing. By default, she likely began living a life that was inauthentic to her true self.
Alice’s care needs were greater than Parkview, including staff in the advanced care unit, could manage without additional help. Edward, hired Sally, a private care aide, to be with her approximately 6 hours daily. Over time, Sally grew emotionally close to and protective of Alice. She knew Alice’s sexual orientation, but worried that disclosing it or supporting her identity, including dressing her in many of her favorite t-shirts with gay pride sayings, would lead to ridicule. Over time and with the actions of her personal care aid and the lack of knowledge of staff, and her inability to express herself, Alice’s sexual identity was no longer supported and affirmed.
As shown in Table 2 , these case studies illustrate tension or conflict in ethical principles within AL settings due to the various stakeholders and institutional values. For example, in Polly’s case, the staff believed that what was in her best interests would have been to minimize her anxiety and confusion-by not moving her to another room. Viewed from the values of harm avoidance and safety, preventing the move from one room to the other appears ethically justified. Whereas, Polly’s husband, believed it was in his wife’s interest to move her. As the authorized decision maker, he had the legal authority to move her to another AL setting. One can see value conflicts with Jack’s case around boundaries and autonomy, or Roger & Jane’s case around harm avoidance and authenticity. Alice’s case demonstrates uncertainty in values surrounding her care provider and the resident. It is important to consider how the AL setting influences the emergence of these ethical issues. If any of these individuals were living in their own homes, we can imagine different ethically acceptable outcomes that might reinforce personal autonomy. Jack would have the freedom to give Christmas gifts, Roger and Jane might have unfettered physical intimacy and privacy, and Alice would have been able to wear gay pride t-shirts without censure. In these cases, we can see how multiple levels of factors influence the ethics of the situation: a care community’s polices determine gift giving; social and organizational culture and censure restrict physical intimacy and privacy; cognitive status brings decision-making ability into question; and emphasis on safety restricts the realization of long-standing preferences. Ultimately, as our cases illustrate, AL care settings have ethical uncertainties that require resolutions that consider diverse values and stakeholders and come to an ethically supportable outcome.
Case application of the framework to support ethical decision-making in everyday life
| Case | Referencing the key sensitizing factors in Figure 1 , what are the key aspects that influence the outcome of the situation being examined? | What are questions that might be asked, policy or practice revision, or education that might be provided to support resident autonomy, beneficence, nonmaleficence and justice? |
|---|---|---|
| Polly | AL care philosophy (e.g. foster home like environment) Informal care partner (e.g. sense of right and wrong) Resident (e.g. ability to navigate to current room) | • What values are reflected in the care philosophy that leads to leaving this resident’s door open? • What are the likely outcomes of each decision for the resident? • What collaboration or empowerment strategy might support better resolution? |
| Jack | Macro social, political and economic context (e.g. low job quality, low wages of vulnerable workers) AL care policies (e.g. rules about giving and receiving gifts) Resident (e.g. sense of self, empowerment, ability to contribute to community) | • What values are reflected in the job quality and pay of the direct care workers in the organization? How can these workers be empowered to reduce vulnerability? • Why does the organization have rules against gift giving? What gifts are allowed (and to whom) and which gifts are prohibited? How does this reflect the values as an organization? • What other ways might the resident be encouraged to make a difference in the community? How can the organization collaborate with the resident so that they can contribute to the well-being of community members? |
| Roger and Jane | Macro social, political and economic contest (e.g. taboos about older adults and sexual and intimacy needs) AL care practices (e.g. rules about privacy and intimacy) Informal care partner (e.g. knowledge of resident preferences, values, comfort with safety vs. risk) Resident (e.g. quality of life, decisional-capacity) | • How is resident age related to our acknowledgement of sexuality/intimacy needs? What biases enter into the discussion? • How can collaboration be fostered with residents and family to make decisions about privacy and intimacy that is in the best interest of residents and maximizes quality of life? • What clues about the residents' life story and preferences can be used to inform the situation? What do clues about behavior and mood reveal about preferences? How best to support those preferences balancing safety and quality of life? |
| Alice | Macro social, political and economic contest (e.g. implicit and explicit bias around sexual orientation in community) AL care policies (e.g. assurances of openness and affirmation policies and training) Formal care partner (e.g. beliefs, making choices based on assumptions, sense of right and wrong, justice) Informal care partner (e.g. how would knowledge of the resident’s preferences influence this situation) Resident (e.g. decisional-capacity, quality of life) | • How do the values of an AL community reflect the values and bias in the larger community? • What assurances were given to the resident when she chose this community? As a community, are they living up to the agreements with residents and families? • How has the informal care partner been involved in these decisions? What do they think about safety vs. quality of life in this instance? • How does the training of the direct care worker influence her perception of the situation? • How does this loss of identity influence the resident’s current quality of life? What can be done to support her dignity and authenticity? |
Three key lessons can be drawn from our examination of everyday ethics in AL. First, AL communities are moral spaces fraught with opportunities for uncertainty and conflict over values. Existing literature fails to frame these dilemmas in the context of ethics. As our illustrative cases show, everyday practice routinely overlooks the potential for ethical principles to explicitly influence daily decision-making. The “Ethics in Long-Term Care” model draws attention to the multiple embedded contexts and the variety of stakeholders that influence decision-making and the moral landscape of long-term care, here AL. Mapping cases to ethical principles makes explicit the underlying values of the different stakeholders in any given case and why AL communities need resources to address these ongoing challenges.
Second, being able to identify these ethical issues, and the underlying principles, can foster and promote more ethically sound practices. We acknowledge the need for AL communities to have access to resources in ethics training and access to consultation with ethics professionals. A thorough understanding and appreciation of when ethical issues occur gives staff and informal care partners the tools needed to make everyday decisions that support residents’ dignity and autonomy by maintaining high ethical standards. Our model supports a textured, nuanced understanding of ethical decision-making that includes multiple decision-makers and centers what is best for the resident.
For example, training staff on the importance of informed consent for residents can directly impact how ethical issues arise in the AL setting. Part of this education would involve teaching the team member about the components of informed consent and identifying potential challenges they may face while working with residents. For example, one particularly complex issue around consent and capacity in AL is sex and intimacy between residents. Issues of sex and intimacy are some of the most personal issues an individual can make but they are often not explicitly regulated in AL. Concerns surrounding informed consent frequently are raised by administrators and staff (Barmon et al., 2017). Given that sexual desire does not necessarily decrease with age, it is an important aspect to consider when working with AL residents, especially those with varying cognitive capacities (Bender et al., 2020; Karraker et al., 2011). Perhaps, if staff and families receive training around ethical concepts like consent, residents could be empowered to continue or remake relationships that are fulfilling and supportive while mitigating risk of harm.
Although not our intended focus, the COVID-19 pandemic underscores the centrality of ethical issues. Long-term care communities in the U.S. and across the world closed their doors to persons deemed non-essential, including residents’ family members, and prioritized safety and infection control. These measures were implemented with little attention to the context that frames the experience of care and without attending to the moral implications of these decisions. The unique experiment of the pandemic has caused long-term care residents, care partners, care communities, and others to re-examine the ethical principles that frame long-term care from regulatory to interpersonal levels (e.g., https://caregivers4compromise.com/). As an intermediary level of care, AL communities provide a useful context for developing a model of ethics.
Our model demonstrates the need for AL communities to develop resources that actively address these types of issues, namely ethics committees or ethics consultation services. In the acute care setting and some post-acute settings, we have seen these services improve the care experiences and morale amongst staff. At minimum, it may be in the interest of AL settings to create their own ethics committee or connect with a local acute care institution to partner with them as a resource. Access to a trained ethics consultant would help AL communities by providing an expert experience addressing these complex issues. An alternative model would be to develop a division of “ethics” in the long-term care ombudsman program that employs ethicists who would be available to AL communities, staff, residents, and families.
Finally, our framework can guide future research and practice. By addressing the multiple layers of ethical complexity inherent in AL, our model highlights dynamics, tensions, and factors in need of research attention. For these reasons, our model also is useful for the development of educational case studies and competency-based educational materials. Attention to ethical issues in research and practice is needed to best support residents, staff, and informal care partners and improve care experiences and outcomes in AL.
Thank you to all who participated in our research, shared their experiences, and gave generously of their time. We are grateful to our colleagues Alexis A. Bender, Joy Ciofi, Molly M. Perkins, Fayron R. Epps, Pamela R. Manley, Stephen Duong, and Andrea M. Hill. As always, thank you to Mary M. Ball, Carole Hollingsworth, and Patrick J. Doyle. We also thank Clifvette Webb for her assistance.
This work was supported by the National Institute on Aging at the National Institutes of Health (R01AG044368, R01AG062310 and 3R01AG062310–03S1 to CLK). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Conflict of Interest: We have no conflict of interest to declare.
IRB Approvals: Advarra: Pro00029867; Georgia State University: H13439 and H19198; Emory University: IRB00108144
