5Caring Responsibly in Long-Term Care: Ethical Considerations for Psychologists

Rebecca Lalonde, Fern Stockdale, Paulette Hunter

Long-term care (LTC) is a diverse and complex setting. LTC residents are both young and old, come from a variety of cultural and socio-economic backgrounds, and have a wide array of physical and mental health conditions. Unique ethical challenges are bound to surface for psychologists practicing in such a setting. Scarcity of resources, multiple value systems, and interprofessional collaboration and conflict all combine to make for an environment in which a psychologist needs to give ongoing consideration to ethics, consult regularly, and acknowledge the limitations of any decision. All in all, long-term care is a rich environment in which to hone ethically informed practice. In this chapter, we will share our experiences of this environment from our unique perspectives as an early-career clinician (Rebecca), an experienced clinician (Fern), and an early-career researcher (Paulette). But first, let us briefly introduce ourselves.

Rebecca: As a recent graduate of a master’s program in Educational Psychology, I have been in my position as a psychologist in long-term care for about a year. I am currently provisionally registered and am continuing to obtain the supervised experience that will allow me to become fully registered. There is much to be learned over a full career in psychology, and I hope that readers (particularly those who presently are completing training or supervised practice) will benefit from my attempts to find balance during my first year of practice.

Fern: I have worked as a clinical psychologist for the past 20 years and have spent most of that time working in health psychology, with a focus on seniors. Currently, I am employed as a psychologist on an interprofessional team in a physical medicine and rehabilitation unit. I have had opportunities to consult in LTC settings, and to practise within community and acute care contexts, and have appreciated the honour of assisting individuals and family members in their personal-change stories. I also have tried to encourage system change by serving on the board of the Mental Health Commission of Canada, and by authoring Working together for change: The mental health and addictions action plan for Saskatchewan (Stockdale Winder, 2014). Advocacy for improved access to services for mental health and addiction issues, and for improved service provision for seniors in LTC facilities, is a passion that has continued throughout my career. I hope that my experiences will offer readers an opportunity to further reflect on their own experiences of interprofessional work and advocacy.

Paulette: During the years I was in graduate school, I witnessed science-driven initiatives positively influence LTC practice. These included the introduction of a system-wide brief quarterly assessment (interRAI.org, 2016), and improved attention to pain assessment and management for older adults, including those with dementia (e.g., Hadjistavropoulos et al., 2007, 2009). The success of these initiatives inspired me to follow a career in research. Now, as a clinician scientist employed in a university setting, my work includes research, teaching, and other contributions to university life. My research on quality of life in LTC brings me into contact with LTC facilities on a regular basis. I hope that my experiences will help readers to reflect on the ways they strive for strong professional relationships to enhance their efforts to provide responsible care for the clients they serve.

The Canadian Long-Term Care System

LTC is an environment that provides many opportunities for psychologists to practice responsible caring. Since many psychologists do not have much experience of LTC facilities, we would like to tell you a little more about this environment before we share our own experiences with you. Residents arrive in LTC because they can no longer live independently, and because they have outgrown the supports available to them in their own homes (e.g., family help and home care services) or in other community settings (e.g., assisted living facilities). Most LTC residents are from the oldest age segment of Canadian society; that is, over age 85 (Pitters, 2002). Still, it is possible to find people of any age from childhood through older adulthood living in this setting. Some LTC facilities are small and intimate, with just over a dozen residents. Others feel like a small town unto themselves, housing hundreds of people. For most residents, LTC will be considered home for the rest of their lives. Some find the transition difficult (Gruneir et al., 2012; Presutti, 2007; Sury et al. 2013). Others transition fairly easily and maintain a high quality of life. Increasingly, care is taken to create a homelike environment where residents are able to direct their own lives as much as possible. But these efforts do not fully ameliorate the challenges of living in LTC, which include accepting support for one’s physical and/or mental health conditions, receiving care from a revolving group of health care providers, and getting along with neighbours that one would not necessarily have chosen. The services psychologists provide in LTC often are related, either directly or indirectly, to these challenges.

Psychology in Long-Term Care

LTC residents have many mental health needs. According to Canada’s National Guidelines for Seniors’ Mental Health (Canadian Coalition for Seniors’ Mental Health [CCSMH], 2006), between 80% and 90% of LTC residents have a mental health condition at the time of admission. Dementia is the most common primary diagnosis (approximately 65% of residents; Ontario Long-Term Care Association, 2016; Rovner et al., 1990), but other psychiatric disorders, including mood and anxiety disorders, are also prevalent in LTC, affecting 40% of residents (Ontario Long-Term Care Association). Many residents have more than one mental health condition. For instance, about 40% of residents with a dementia diagnosis at admission also have comorbid depression, delusions, or delirium (Rovner et al., 1990).

In this environment, there is a great need for the services that psychologists are trained to provide, including cognitive assessments, behavioural support, and counselling or psychotherapy (CCSMH, 2006; Seitz et al., 2010). Still, the reality is that most residents do not have reliable access to these services. In the Canadian LTC system, the availability of therapeutic services averages just 14 minutes per resident per day (Berta, et al., 2006). This time is spread across all other therapies (e.g., physiotherapy, occupational therapy, behavioural support), and includes indirect service time such as travel between facilities, attending meetings, and charting.

As you can see, the current level of public resources allocated to psychosocial and behavioural support in LTC does not permit psychologists to serve all residents who have a mental health condition, nor yet all who would benefit from psychosocial support as they cope with loss or adjust to significant changes. The needs that exist in LTC, as well as a sometimes-poor match between needs and available resources, demand a broad range of skills and expertise from psychologists, including ethical decision making. In the remainder of this chapter, we hope to give you a glimpse of some of the common ethical issues we have encountered in our efforts to provide responsible caring in long-term care. The case stories you will read are amalgamated examples, in which presenting problems and circumstances have been adjusted. While not true in historical detail, these stories are representative of our professional experiences.

An Early-Career Clinician’s Perspective (Rebecca)

In my work as a psychologist in LTC, I serve a population of over 2,200 residents in 30 LTC facilities. Roughly half of the facilities to which I consult are in Saskatoon, Saskatchewan, and the others are in the surrounding rural area. Within my position, I have two major roles. The first is to provide psychological services within one large LTC facility in Saskatoon. In this role, I spend time with clients who require ongoing individualized services, including residents living with dementia, acquired brain injuries, physical disabilities, and longstanding mental health conditions. The second is to provide psychological consultation to 29 other LTC facilities in Saskatoon and the surrounding rural area. Most consultation requests are for behavioural consultation. This means that I am responsible for evaluating and advising on behaviours that convey possible distress (e.g., pacing, calling out), or may be disruptive to others (e.g., repetitive vocalizations), or are potentially unsafe (e.g., refusing support with hygiene). Typically, this includes providing information to support a better understanding of the resident’s needs, as well as advising on potential strategies to address the needs. The level of service I provide to meet each request ranges from a one-time call to multiple visits when more extensive intervention planning and evaluation are needed. More complex consultations can include several visits, including speaking with the individual, observing their environment, interviewing the person’s family members and care staff, providing education to caregivers, and following up after recommendations are implemented.

Special Considerations for Rural Settings

With a population of over a quarter million people, Saskatoon has many of the amenities of a larger city, but my work offers regular reminders of its relatively small population size. In the first few months of my position, I realized that it was not unusual for residents, families, and staff to have multiple (i.e., overlapping) relationships. For example, sometimes a staff member was also a resident’s family friend. When I began to consult to the small rural communities outside Saskatoon, such relationships were even more pronounced.

In rural communities, multiple relationships between staff, residents, and rural community members are particularly likely—even inevitable (cf. Campbell & Gordon, 2003)—and these relationships sometimes raise important questions about responsible caring. Consider the example of “Linda,” a care aide who supports a group of eight residents, one of whom is her “Aunt Ethel.” This raises a number of ethical questions surrounding Ethel’s care. For instance, might there be a difference in the way Linda provides care to Ethel, compared to her care for other residents? If so, how might other residents respond? What about Linda’s co-workers? Would either the residents or the staff treat Ethel any differently due to her familial relationship to a staff member? What pressure might Linda be under from extended family members when caring for Ethel? Could these pressures ever work against Linda’s professional judgement in her care for Ethel? How might members of the community feel about their own loved ones’ care, knowing that Ethel is receiving care from her own niece?

Psychologists are encouraged to maximize the benefits of their activities by ensuring they have a good working knowledge of the communities in which they work (Ethical Standards II.13 and II.14). In my practice, this includes developing a better understanding of relationship networks within rural communities, such as the relationships between Linda and Ethel, Linda and other staff members, and Ethel and the other residents. Multiple relationships, or situations in which professionals have multiple roles with respect to their clients, have often been discussed as ethically sensitive situations to be avoided when possible, or carefully monitored when it is not possible to avoid them, as is often true in rural work (Ethical Standards III.30–III.31). However, over time, there has been a shift toward examining the potential therapeutic benefit of carefully managed multiple relationships (Younggren & Gottlieb, 2004).

It has been my own experience that sometimes providing the best possible care for those in need (Ethical Standard II.18) is most readily achieved by making use of the benefits of pre-existing relationships. Imagine that a staff member observes Ethel, who has dementia, engaging in what seems to be a bizarre behaviour, removing leaves from indoor houseplants, and using them to wipe herself after relieving herself in an inappropriate location. Linda, who has overlapping roles with respect to Ethel, has a great deal of knowledge of her aunt’s life before LTC. Linda hears of this behaviour and recalls that her aunt spent most of her working life as a farmhand, spending nearly all her time outdoors. The only chance to relieve herself in this environment was to enter a wooded area and use a leaf instead of toilet paper. Knowing this, Linda does not see the behaviour as bizarre; rather, she realizes that it is important to watch for signs that her aunt needs the washroom and to find an effective way of directing her there. She also explains her understanding to other staff, who find the information very helpful to their care for Ethel.

Now consider an alternative possible scenario in which Linda learns of her Aunt Ethel’s behaviour and becomes incredibly embarrassed. She thinks the behaviour is inappropriate and does not reflect well on her family. In turn, she feels ashamed and guilty. These feelings lead her to scold her aunt when this behaviour occurs. Linda believes she is doing Aunt Ethel a favour by discouraging a behaviour her aunt would have been ashamed of before the onset of dementia. On the other hand, my behavioural observations show that Ethel’s agitation and confusion worsens when she is scolded, and I know that this could further contribute to problematic behaviours.

Both scenarios represent real possibilities in rural LTC facilities. In each scenario, both Linda and I have relevant knowledge—Linda about Ethel’s history and preferences, and I about behaviour management. In the first scenario, Linda and I happen to draw a similar conclusion about Ethel’s needs. In the second, we understand the behaviour differently and have identified incompatible strategies to manage it. Clearly, the second scenario is more difficult to navigate. Nevertheless, I have come to realize that in either scenario, the greater my understanding of the qualities of resident-staff relationships within rural LTC facilities, the more tools I have to intervene. In the first scenario, Linda and I see eye to eye, and the intervention I offer might be as simple as documenting the positive effects of Linda’s approach, providing a further rationale, and encouraging other staff to use this approach, too. In the second scenario, by working to appreciate how Linda understands the situation, I can describe the rationale for my proposed intervention in a way that better addresses her concerns, and this makes it more likely that my recommendation will be accepted.

Through working with residents like Ethel and family members like Linda, I have learned to be cautious when I encounter multiple relationships, recognizing that it is an area in which ethical tensions are more likely to arise (Ethical Standards III.30–III.31), and that I have much to learn (Ethical Standards II.9 and II.10). Nevertheless, I also have learned that paying attention to multiple relationships can be extremely valuable. More and more, I find myself using my knowledge of multiple relationships to “tune my dial” to potential problems with the implementation of my proposed intervention. This helps me to balance the technical aspects of behavioural interventions with more practical human considerations, such as whether the intervention is acceptable to those who will ultimately implement it.

Special Considerations for Consulting Work

In a perfect world, each LTC facility would receive far more support than I can provide. In an imperfect world, the reality is that I must be very efficient with my consulting time in LTC, always knowing that there is another LTC facility patiently awaiting my visit. Given the brevity and infrequency of many consultations, particularly in rural communities, it can be challenging to develop quality interventions and monitor the outcome of my services (Ethical Standard II.22). From an ethical perspective, if I am not able to meet requests for needed service alone, the Canadian Code of Ethics for Psychologists (Canadian Psychological Association [CPA], 2017) advises me to give reasonable assistance (Ethical Standard II.33) to find appropriate resources to meet the client’s needs. In considering this dilemma of responsible caring as it intersects my practice, I have developed a keen appreciation of the clinical knowledge of other members of the care team, including unlicensed providers (Ethical Standard II.19). Since I have only a few hours at most to spend on any given consultation, a few minutes of discussion with a consistently scheduled care aide can provide me with information that I might otherwise not have access to. For instance, many staff members can provide me with vital information about what is normal or what is an important change for a resident.

I once was asked to assist in identifying the cause of a recent increase in the agitation of a male resident with Alzheimer’s disease. Upon arriving, I was informed that one particular care aide was most informed about the resident’s care, having worked regularly with him for three years. Unfortunately, that same care aide had just begun a month-long vacation. For several reasons, including the resident’s level of distress and the urgency of the consultation for the LTC facility, I completed the consultation based on the information that was available. My recommendations helped the facility to manage the agitation while the care aide was away, but the problem was not fully resolved. When the care aide returned, I visited again, and a much better solution to the problem was identified. Although it was not documented anywhere in the chart, the resident had poor hearing, and wore hearing aids purchased a few months prior by a family member who visited infrequently. The resident had misplaced his hearing aids, and not realizing the importance of the hearing aids to the resident, none of the staff members had made a concerted effort to look for them. On the care aide’s arrival from vacation, she opened a drawer in his closet and simply stated, “Oh, sometimes he puts them in here when he comes back from church service.” With his hearing restored, the facility staff did not observe any additional increased agitation. To prevent future recurrences of the problem, I documented the reason for the behaviour in the resident’s chart and collaborated with the care aide to share her insight with other staff who were working that day. When residents cannot adequately communicate their own needs and preferences, they rely on others. Often, those who work most closely with a resident, as this care aide did, possess extremely valuable information. However, they are not always aware that they possess special knowledge. As a result, an important part of my role can be to affirm the importance of this knowledge and to support communication.

Although the above approaches do not apply to every situation, they prove very useful when they do. The biographical information that is sometimes shared by caregivers who have extensive knowledge of the residents helps me to develop my own knowledge quickly and assists me in maintaining a person-centred approach to consults (Clarke et al., 2003). In addition, it is often other team members, rather than me, who will be employing the intervention strategies I recommend, and perhaps even monitoring them for effectiveness. For this reason, I find that developing effective working relationships with LTC staff, collaborating in the development of interventions, and extending my responsibility to residents through other staff (Ethical Standard II.55) is a very efficient and caring way for me to respond to requests for service. This is particularly important for any rural LTC facilities that I cannot visit regularly.

The Needs of the Individual Versus the Needs of the Many

Interpersonal conflict exists wherever people live in close quarters. It is part of human nature. Regardless of the setting, we all can relate to the challenges of living and working in shared spaces with others. But given the vulnerability of LTC residents, it becomes critically important to find a balance between addressing the needs of one resident and the needs of others around them.

Many times, this situation presents itself as a dilemma in which respecting the well-being of one resident (Ethical Standard II.1) could potentially impact the well-being of others (Ethical Standards II.1 and II.2). For example, if John always sits at the dining table for dinner and regularly uses vulgar language in this social context, this may bother other residents and their families. It is not necessarily illegal, immoral, or wrong for John to swear, but it could have a negative impact on other residents. Consider a more serious situation, in which a person living with quadriplegia uses their motorized chair in an unsafe manner. Here, the needs of the individual (i.e., mobility, independence) and the needs of others (i.e., safety) are potentially at odds.

Dilemmas in which resident needs compete feature prominently in my work, and often involve weighing the risks and benefits of change for multiple parties. Consider Gloria, a woman living with dementia who is referred because she calls for help repeatedly. As I explore the concerns with staff, I realize they are worried about adequately meeting Gloria’s needs and also about whether her calls are compromising others’ quality of life (e.g., loss of sleep, increased agitation) and contributing to safety risks, such as the risk of another resident striking her in frustration. After obtaining consent from Gloria’s designated family member(s), I begin by reviewing any medical concerns with Gloria’s physician, assessing whether there are unmet physiological needs (e.g., hunger, rest, pain), and working collaboratively with the care team to address those needs. If I discover that the need is psychological (e.g., loneliness, boredom), I might encourage planning for more time with friends and family, or in scheduled programs. Additionally, or alternatively, I might recommend increasing the frequency of very brief check-ins and visits from staff. If this proves insufficient or unfeasible, and there are still significant risks to Gloria’s quality of life or that of other residents, I might recommend a more structured plan that is more labour-intensive to implement. For example, I might collaborate with the home’s manager to routinize 5-minute visits from staff every 30 minutes, while also emphasizing the importance of not responding to calling out in between (and still providing unobtrusive supervision to be confident that Gloria is safe). Over time, by replacing visits prompted by Gloria’s calling with frequent scheduled visits, Gloria will ideally come to trust that she will not be left alone for long, even if she does not call out. However, there can be a temporary increase in calling out during the initial period where Gloria is not feeling confident about the change. Because of the work involved, the transition period for Gloria, and the potential consequences of the temporary increase in behaviour, this approach is not typically the first choice. At every step, careful consideration of the risks and benefits to all involved guides whether and how best to intervene (Ethical Standard II.17).

Self-care in a High-Need, Resource-Scarce Context

As reflected in the above scenarios, I find that I often am confronted with the dilemma of a higher need for my services than I am able to provide. As a psychologist, I grapple with how to best serve my clients in the limited time I have available. I find myself wondering if I could do it all, thinking to myself “maybe if I just worked a bit faster,” or “maybe if I was more efficient with my time.” I sometimes think about what life would be like in a perfect world, where every person would have access to psychological support to the degree that they need.

As a new practitioner, I have found it helpful to keep the Canadian Code of Ethics for Psychologists (CPA, 2017) close at hand. In considering how it speaks to the demands of my work, I am particularly drawn to the standard that describes an ethical obligation to take care of oneself as a psychologist (Ethical Standard II.12). Practitioners are encouraged to be aware of burnout, and the potential for it to affect client care. The best approach for managing the workload is to balance providing service with care and attention while considering the limitations of the setting. In looking for that balance, I find myself asking, “Should I prioritize the number of people I see, to give my time and attention to those who have the highest need? Or do I spread myself thin, respond to every request for services, and provide the best service I can with the time I have?” In my own journey to becoming an ethical practitioner, I find it important to manage my caseload effectively to protect my mental health and the quality of the care I provide. When my skills are of value to more residents than I can serve, I must make difficult choices, allowing myself only a certain number of consultations per week, and be mindful of the temptation to push myself to do more, knowing that an unsustainable workload will undermine my effectiveness over the long run. Sometimes, I think it is easier to be aware of the potential for burnout than to take note of the subtle moments along the way that indicate the need for more attention to self-care.

As a new member of the profession, I also have found consultation with others about ethical dilemmas (Ethical Standard II.8) helpful to my professional growth and self-care. Consulting with more experienced psychologists (Ethical Standard II.9) when I experience ethical dilemmas helps me become more confident in applying ethical principles in the real world. Knowing that I am not alone in managing difficult situations also helps me to manage the inevitable stresses associated with clinical practice. In striving to be the most ethical practitioner I can be, I know that my learning will be ongoing, and I am comforted by the knowledge that I can turn to others in the profession for guidance.

An Experienced Clinician’s Perspective (Fern)

Over my career, I have had many and varied connections with long-term care facilities. When I think about those experiences, stories that involve ethical dilemmas and opportunities for learning and growth as a professional stand out. In the following stories, I share a couple of my key lessons: interprofessional respect and advocacy for residents.

“Claws In”

I love interprofessional work. I love the camaraderie and sense of team that I have with my colleagues. I appreciate the rich diversity of our views, and the fact that I learn something every day from my colleagues. I find great satisfaction in working together from different perspectives to bring about the best possible care for a patient, resident, or client. Earlier in my career I also enjoyed interprofessional work, but sometimes the differing perspectives on situations led me to believe that there were ethical contradictions in our views. This is a common experience (McCullough et al., 2002).

At one point, I was working on an interprofessional team at a facility that included physical therapists, occupational therapists, nurses, physicians, recreation therapists, and psychologists. We were all eager to work together, and to become a high functioning team. Nonetheless, I was taken aback when one of the physical therapists said to me, “I’d like to talk to you about cognitive behavioural therapy. I’ve been reading a book about it. I really like the principles of it, and I’m starting to incorporate it in my physical therapy sessions with clients.” My internal ethics alarm sounded. I had visions of this physical therapist practicing psychotherapy without sufficient knowledge or training and I was worried about potential harm to residents, in keeping with the strong admonition in Principle II (Responsible Caring) to protect the welfare of clients and to avoid doing harm (CPA, 2017). I was also worried about how I was going to confront this colleague without damaging our interprofessional relationship, or the friendship that had started to emerge.

Fortunately, at the time, I was working with a more experienced psychologist. I went in and breathlessly recounted this potentially harmful situation to him, waiting for him to tell me what I might do to address it. So, I was surprised when his initial response was just these two words: “Claws in.” “What?” I said, not at my eloquent best at that moment. “Claws in,” he responded again. The response still did not make any sense to me, and I looked at him with a blank yet earnest expression. He then very calmly explained to me that it was likely that my physiotherapist colleague had discovered some basic useful principles of cognitive behavioural therapy. He noted that my colleague was likely just trying to encourage his client to think positively about their progress in the therapy exercises, and to set reasonable goals. He encouraged me not to think of the situation as an ethical dilemma, with psychology clearly the ethical superior, but rather as a chance for a discussion and exploration of how cognitive behavioural principles could be used in a variety of situations and how we could reinforce each other’s work. I went back and talked to my colleague and discovered that it was in fact as my psychologist colleague had hypothesized. This opened a very rich discussion, and eventually led us to practicing more closely together and providing better care.

It has taken me a while, but now when an ethical flag waves in my mind in an interprofessional context, I ask myself if it is simply a difference in perspective from professional worldviews. As Burck and Lapidos (2002) state, “provider cultures have their own specific perspectives on this good [for a particular patient] and their own ideas of what the various disciplines contribute to it” (p. 44). When ethical issues arise, I now seek out how I might be able to resolve the issue with my colleague, respecting that their ethical framework is not identical to mine. This interdisciplinary respect is emphasized in the Canadian Code of Ethics for Psychologists (CPA, 2017). For example, under the Values Statement for Principle I (Respect for the Dignity of Persons and Peoples), interdisciplinary members are included in the list of those persons and peoples whose dignity we must remember to respect, and the Values Statement associated with this principle states, “In these contacts, psychologists strive to develop and maintain constructive and collaborative relationships that reflect the fundamental principle of respect for dignity” (para 2).

These collaborative, team-based relationships result in more co-ordinated and valuable services when teams are working effectively (Zwarenstein et al., 2009). Co-ordination of service is emphasized in the standards within the principle of Responsible Caring. For example, the Canadian Code of Ethics for Psychologists advises psychologists to engage in “consulting or collaborating with service-providing organizations in the community, members of other disciplines, individuals and groups relevant to the culture or belief systems of those receiving or being subject to services” (Ethical Standard II.18). It also recommends that psychologists “make themselves aware of the knowledge and skills of other disciplines (e.g., law, social work, medicine, business administration), and make referrals or advise the use of such knowledge and skills where relevant to the benefit of others” (Ethical Standard II.19). When we understand both the skills and the ethical frameworks that each profession brings to the care team, and we include the resident at the centre of the team, we position ourselves to provide more co-ordinated and responsible care.

Bulldozer at the Door

The introduction to this chapter describes the scarcity of mental health resources within LTC. Experiencing this scarcity of resources and a high level of need has also made me wonder how I might best advocate for the needs of residents in LTC. For me, this advocacy awareness came early in my career, when I had the opportunity to train with a supervisor who was keenly aware of the need for psychologists to not only work with individuals, but also to advocate for social change. We were working at a facility that was close to 80 years old, and it had not been kept up or renovated the way it needed to be to provide the best quality of care. For example, it included a ward that had been partially damaged long ago and had simply been closed up rather than repaired, and this was indicative of a state of crumbling infrastructure and disrepair in many parts of the facility. I still clearly remember the day that we learned government officials were coming to discuss the future of the facility, including the possibility of renovations, or tearing down and rebuilding. My supervisor believed that it was incumbent upon us to advocate for residents, who could not readily speak for themselves. When my supervisor was asked by government officials when he would believe they were serious about wanting to transform the facility, he replied, “When I see the bulldozer at the front door.” He was speaking out about what he saw as a violation of responsible caring of the residents of the facility. This taught me that sometimes we may need to challenge “the system” in order to advocate for needed change. My supervisor’s approach that day was a very direct one, but I have since discovered that there are many ways to approach advocacy, including a collaborative relational approach. At this later point in my career, I see government officials as part of the team for change—often, in fact, having chosen public policy or serving as elected officials in order to effect positive social change despite personal cost. But my supervisor’s bold confrontational approach has stayed with me, emphasizing the need for not just individual action, but social action.

The scarcity of resources in LTC continues to the present time, as does the lack of sufficient services for mental health and addictions issues in general (Mental Health Commission of Canada, 2013). At times it can seem that our responsibility for providing quality care to individuals rightly consumes all our professional time. In a context of substantial unmet need, there is no time left for advocating for system change. Yet, without the voices of people with lived experience (including those who work in LTC), it can be difficult for change to happen. The need for advocacy in LTC is so great that Lichtenberg et al. (1998) included it as one of the “standards” for providing psychological services in LTC facilities, and this call was more recently echoed by Karel (2009). In the language of the Responsible Caring section of the Canadian Code of Ethics for Psychologists, we are advised to “strive to provide and/or obtain the best reasonably accessible service for those seeking psychological services . . . [including, among other actions] advocating on behalf of a primary client when appropriate and needed” (Ethical Standard II.18). Under Principle IV (Responsibility to Society), we also are encouraged to “contribute to the general welfare of society . . . and/or to the general welfare of their discipline, by offering a portion of their time to work for which they receive little or no financial return” (Ethical Standard IV.12). For me, this has taken the form of volunteering personal time and/or accepting professional opportunities that would potentially help to move change forward. Examples include serving on the board of the Mental Health Commission of Canada, creating a committee of managers in my workplace to advance Seniors Mental Health across points of care (e.g., community, acute, and LTC), and supporting the work of the Canadian Coalition for Seniors Mental Health. Some of my managers supported the use of my paid work hours to advance these causes, but I also have volunteered my time. This has been a very rewarding experience that, I believe, has resulted in changes for the better in my local community and in Canada nationally.

An Early-Career Researcher’s Perspective (Paulette)

As a clinical researcher working in partnership with LTC organizations, there are many meaningful opportunities to contribute to the growth of knowledge. My research program focuses broadly on person-centred care and explores the attitudes and values of care providers (Hunter et al., 2013; Hunter et al., 2016a). It also examines the extent to which these and other factors, such as organizational factors, might influence how care is offered (e.g., Hunter et al., 2016b), and tests specific clinical interventions that might contribute to person-centred care. When I consider how my experience has intersected the domain of ethics, three things strike me: (i) research introduces new demands in a resource-scarce context, (ii) a community-based approach can extend the benefits of research, and (iii) clinical researchers must be prepared to navigate ethical dilemmas in this context.

Research in a Resource-Scarce Context

Psychologists are advised to express caring by promoting well-being and avoiding harm to those with whom they work. This includes research participants as well as other residents, family, and staff members (Ethical Standards II.1, II.2, and II.30). However, the day-to-day practice of research in busy LTC settings raises dilemmas about how best to exercise responsible caring. For instance, a long-term goal of working to improve the well-being of LTC residents through research often has shorter-term costs, such as an increase in work for LTC staff, who may feel they are at the limit of what they can give (Bowers et al., 2000; Lopez, 2006; Mallidou et al., 2013). Additionally, in an environment already taxed by low resources, there is some risk that these short-term costs might be transferred to residents (cf. Ethical Standard II.30). For example, when my research team introduced a program to enhance psychosocial support for people living with late-stage dementia, staff and family caregivers at a participating LTC home raised concern that since there were no extra resources to introduce the program, residents without dementia, or with dementia at an earlier stage, might receive less attention (Hunter et al., 2017). In the face of such concerns, research can seem an unaffordable add-on, or a risk. This is particularly true when the benefits are intangible—and unfortunately, there is seldom a guarantee that innovations in practice will succeed (Damschroder et al., 2009). In the above situation, with no way to fully mitigate the identified risks, our research partners consulted carefully with the resident and family council (Ethical Standard II.23), decided on strategies to reduce the risks (Ethical Standard II.30) and took the chance to proceed, giving priority to the most vulnerable group (Principle I Values Statement, and Ethical Standard I.11). In a resource-scarce context, questions about the relative risks and benefits of research (Ethical Standards II.13–II.17; II.30) are always at the forefront of decisions about whether or not to initiate a clinical research project.

Partnerships or Parachutes?

Given the additional demands that research presents to LTC staff, when I first began to conduct LTC research, it felt most natural to adopt a “parachute research” approach—jumping into the setting to conduct an intervention, and then leaving to analyze and publish the results. This seemed the best way to offer the potential short-term benefits associated with intervention research, while minimizing the burden of the extra work involved in research participation for LTC staff. However, as I continued to reflect on what was happening in my research practice, I began to notice that at some LTC facilities, despite very busy schedules, clinicians wanted to be more involved than my parachute-style plans allowed. By relieving them of extra work, I was preventing them from finding ways to build the intervention into their ongoing practice. Yet, other LTC facilities preferred lower levels of investment and seemed better matched to a parachute approach. I came to realize that in either case, a parachute approach made it unlikely that a successful intervention would ever be sustained locally, even if there was potential for short-term contributions to a broader momentum for change.

This dilemma came into clearer focus when I considered the residents participating in unsustained interventions. The Canadian Code of Ethics for Psychologists advises psychologists to prioritize responsible caring for those in the most vulnerable position (Principle II, Values Statement)—in this case, long-term care residents. It also advises psychologists to be reasonably assured that discontinuing a service will not cause harm (Ethical Standard II.36). This suggests that clinical interventions introduced in the context of long-term care research, and found to be effective, should ideally be sustained. Yet, translating this standard as an absolute rule within a resource-scarce context would likely limit willingness to participate in clinical research. If researchers and their clinical partners choose not to allow for uncertainty about benefits to residents or sustainability of interventions, it could be a great loss, since research has contributed to beneficial changes in LTC practice, such as improved attention to pain assessment and management, implementation of routine comprehensive assessments, and enhanced mealtime assistance (Hadjistavropoulos et al., 2007, 2009; interRAI.org., 2016; Kayser-Jones, 1996, 2003) (cf. Ethical Standards II.18, IV.1, IV.6). On the other hand, ignoring the standards is not ethically responsive. With this in mind early in my career, I began to question what it meant to care responsibly as a clinical researcher, and to wonder about the balance of risk and benefit when an intervention is introduced for a time and then withdrawn once the research data have been collected.

Engaging LTC Communities in Research

As I further considered the ongoing needs of LTC residents, and the level of interest of some clinical partners in being more directly involved in developing and evaluating new interventions, I became more aware of community-based research as an expression of responsible caring. Consider this quotation:

“I’m telling you about myself. You don’t even bother telling me about yourself, you just wanted to know about myself. I don’t think it’s fair. I would like to know about your parents, and I would like to know about other things. I am an old man now and I am curious” (Akuliaq, Inuit Elder, 1967, as cited in Bielawski, 1995, p. 219).

The Elder’s statement clearly conveys that the relationship between the researcher (whose main goal is to seek knowledge) and the community (here, the object of knowledge) was not reciprocal. Over time, an approach called community-based research developed as a way to rectify this imbalance. Community-based research emphasizes cultivating mutually beneficial partnerships to promote social change at a local level (Wallerstein & Duran, 2010). Common to all community-based approaches is the view of the community sharing responsibility for the research and having a strong voice in the research process. This naturally shifts the focus to sustainability. For instance, in the LTC context, it allows LTC communities to take fuller ownership of the research process and identify ways to sustain helpful interventions, avoiding the researcher’s parachute dilemma.

Nevertheless, community-based research is not a cure-all for ethical issues in LTC research. In fact, it creates several ethical issues of its own (e.g., Moretti et al. 2006). For instance, to ensure local acceptability of the intervention, experimental controls often are compromised, and the work is frequently evaluated using methods that are considered to represent a lower standard of evidence. This may reduce the potential for broad impact on global LTC practice, even though it may contribute to a stronger local impact (Wallerstein & Duran, 2010). Thus, it is much too simple to say that one approach to research is more ethically responsive than another. Rather, it is important for researchers to cultivate awareness of the short- and long-term risks and benefits associated with carrying out their research programs in particular LTC environments and to factor this into their decision-making (Ethical Standards II.9-10; II.13-II.17). Risks would include short-term demands on staff and long-term risk of permanent disengagement from research if research is perceived as too demanding. Benefits would include short-term therapeutic effects and long-term potential to stimulate change in practice.

Everyday Dilemmas in Long-Term Care Research

Although community-based research is intended to increase the potential that research will directly benefit local communities, it also comes with its own set of ethical challenges. Perhaps one of the biggest such challenges in my clinical research experience is that I sometimes have clinical or other knowledge that could help to relieve the suffering of a resident enrolled in the research. However, since I am not in a direct service role, there are obstacles to bringing this knowledge to bear.

Consider the following example. Ursula and Heinrich were two cognitively impaired residents participating in a clinical research program designed to promote quality of life. The two were constant companions to each other. The more time I spent completing assessments for the research project, the more I realized how much Ursula and Heinrich benefited from their relationship. Spending time together was deeply comforting to each of them. As they conversed in their mutual first language, German, they provided each other with cultural solidarity and promoted each other’s cognitive functioning. Yet, as I came to appreciate these benefits, I also began to realize how deeply distressing this situation was for Ursula’s son and substitute decision-maker, Kurt. Earlier in her life, Ursula had described Kurt’s father as her one true love. Seeing the new couple together concerned Kurt greatly. He worried that this situation was contrary to her values, and felt responsible. Because of the obvious pressures on Kurt, I began to wonder how this situation would play out for Ursula. For instance, would she ultimately be prevented from spending time with Heinrich? How would this affect Ursula and Heinrich? Since my research protocol and consent process allowed for mutual sharing of relevant clinical information to promote residents’ quality of life, I offered to share my observations of Ursula with staff members who played a key role in managing this situation. However, the offer was not responded to, and the conversation never took place. I suspect it may have been difficult to include me in an approach to care that is, often by necessity, highly routinized (Daly & Szebehely, 2012; Mallidou et al., 2013). Employees must be very efficient in order to accomplish their work, which can limit relationship-building (Mallidou et al., 2013). In addition, it is likely that staff members protected the boundary between research and clinical work for other reasons, such as feeling uncertain about mutual responsibilities for confidentiality, and wishing to prevent accidental disclosures of confidential information to me.

When I later analyzed the data my team had gathered, I learned that Ursula had once described Heinrich as her brother. By the time I learned this, Ursula had been transferred to another facility. My heart sank. Although transfers occur for many reasons, I wondered if Kurt had requested the move in an attempt to reduce his father’s distress over Ursula’s new relationship. Was the move in Ursula’s best interests at this time in her life? Given Ursula’s vulnerability, should I have been more assertive in my attempts to share my observations about her relationship with Heinrich? Should I have maintained a more consistent connection to the project data, given its potential clinical relevance? Perhaps this information about my understanding of the relationship would have been reassuring to Ursula’s family members, had it been presented earlier. Perhaps it also would have proven relevant to deciding whether relocation was in Ursula’s best interests.

Rapid action and transparent communication on behalf of LTC residents can be slowed by blind adherence to legal and ethical standards intended to safeguard their interests. In the story of my encounter with Ursula and Heinrich, a strong emphasis on patient privacy (Ethical Standard I.38) and confidentiality (Ethical Standard I.45) promoted boundary-keeping between those who had clinical responsibility and those who did not. In addition, when evaluating risk (cf. Ethical Standard II.17), I did not attend as closely to the risks associated with lack of more assertive action on my part, especially given that the LTC facility carries the primary responsibility for making and implementing clinical decisions. Ultimately, such dynamics can operate to prevent appropriate boundary crossings that involve advocating for residents’ needs.

Preparing to Encounter Ethical Dilemmas

Dilemmas about the extent of the researcher’s role are ubiquitous in LTC research (e.g., Kayser-Jones, 2003; Morse, 2005). There are inevitable tensions when third parties, including researchers, become involved in situations such as Ursula’s. Further, these tensions are exacerbated by the likelihood of encountering ethical issues in resource-scarce settings, where the needs of residents have increased at a steeper rate than funding support (Canadian Institute for Health Information, 2011; Jansen, 2010). These tensions may be especially challenging for clinical researchers to negotiate, as they often have relevant skills or knowledge to bring to bear.

Take for example the work of American LTC researcher Jeannie Kayser-Jones, who was concerned about the poor nutritional status of LTC residents with dementia, which, at the time, had been attributed in the literature to the progressive nature of dementia (Kayser-Jones, 2003). Kayser-Jones used research to demonstrate that inadequate staffing ratios in many American LTC facilities had a great deal to do with the serious weight loss of many LTC residents. Her research ultimately contributed substantially to policy changes, including the implementation of minimum staffing ratios. Yet, as Kayser-Jones interacted with people living in LTC, documenting unmet nutritional support needs, she sometimes felt compelled to act (Ethical Standards II.1, III.9). She tells the story of encountering a blind and hard-of-hearing resident who had only two lower teeth and no dentures:

One day, I stood in the hallway and observed as [Mrs. Altman] tried to eat her lunch. She struggled to get spaghetti from the plate to her mouth. Most of it fell onto her clothes and into her bed. As a research scientist, I should not have intervened. I should have observed the natural situation, but I felt compelled to assist her. “I’m in a bad way,” she said. “I’m blind and almost deaf. It’s very hard when you can’t see. I’m so hungry, I’m so hungry!” she kept repeating. I stayed to help her, and she ate her entire lunch (Kayser-Jones, 1996, p. 1397).

Kayser-Jones crossed a boundary, knowing that Mrs. Altman needed support (Ethical Standard II.1), and taking action to provide that support, even when it was beyond the scope of her role (Ethical Standards II.17, II.19, III.30, III.37, III. 39).

One might wonder whether Dr. Kayser-Jones more reasonably could have identified a fuller range of potential responses to Mrs. Altman’s expression of need (e.g., notifying a staff member; escalating her concern to the care director), particularly since most would agree this situation was not an emergency (Ethical Standards I.46, III.30, IV.18). Indeed, another experienced health researcher, Janice Morse (2005), argues that those who conduct research in LTC must resist a range of pressures that operate to censor their concerns, and act to prioritize the well-being of vulnerable residents. When they have concerns about residents’ well-being, researchers must take action (cf. Ethical Standard II.41)—ideally, collaboratively and diplomatically (cf. Ethical Standard II.8)—to ensure effective resolutions to the concerns.

And yet, Kayser-Jones’ research has illuminated that this is not straightforward in practice. Scarce resources had rendered dilemmas like the one she encountered ubiquitous in LTC, leaving it impossible to take for granted that necessary solutions would be quickly identified. When she attempted to have a staff member intervene directly (“but she is hungry” Kayser-Jones, 1996, p. 1397), she was put off (“I have to leave now”; “I have to put someone to bed”). She realized a dilemma—although acting to ensure timely support meant exceeding her role (Ethical Standards III.30, IV.18), it was unlikely, given her research experience in this setting and in general, that Mrs. Altman otherwise would receive consistent timely support, even with attempts to negotiate it (Ethical Standard II.55). In the short term, this might not result in imminent risk (Ethical Standard II.42); however, in the long term, her research had demonstrated a cumulative risk of malnutrition, dehydration, and weight loss (Kayser-Jones, 2003) (Principle I Values Statement, Ethical Standards II.43, IV.22). Although it would be easy to conclude that the facility should improve its standard of care, the very fact of the facility’s partnership with Kayser-Jones suggested that her organizational partners shared her deep concern about the inadequacy of support for residents’ needs yet felt ill-equipped to negotiate the level of resources required to adequately meet the needs.

Within this story, Kayser-Jones can seem to be a sort of Robin Hood of LTC, bending the rules to serve up dinner to those in need, and ultimately coming to the rescue with more staff for meal service in LTC. Yet surely, exceptionally few people would see it as appropriate for researchers to be serving the dinners in LTC or providing other forms of direct care. Dr. Kayser-Jones openly confesses that she exceeded her role, seemingly because of the pressures operating on Mrs. Altman, on the staff, and on her (Ethical Standards III.9, III.16). Despite Dr. Kayser-Jones’ successful advocacy for change through research, the level of need in LTC remains such that other researchers and visitors will certainly face similarly compelling ethical dilemmas. The question is, what should one do about it? Beyond taking action to prevent serious dilemmas like this from becoming normalized (Ethical Standards IV.22, IV.27), Dr. Kayser-Jones’ experience indicates that researchers need to prepare carefully for work in the LTC environment. To care responsibly, they must know what kinds of ethical dilemmas they are likely to encounter (Ethical Standards II.9 & II.10), develop strong relationships to support resolutions (Principle I and III Values Statements), engage in continuous reflection on their practice (Principle III, Values Statement), and consult actively before and during their work (Ethical Standard III.35).

Summary and Conclusion

By reflecting on the experience of responsible caring in three different roles and at three different points in our career trajectories, we became aware that each one of us had faced some distinct ethical challenges as a psychologist working in LTC. Nonetheless, we also recognized three common themes: complex relationships, scarcity of resources, and a call for advocacy.

Complex relationships abound in LTC. There will be times when residents’ goals are in competition, as in any close community environment. Psychologists also need to skilfully navigate multiple relationships with residents and other health providers, particularly in smaller or rural centres. Furthermore, they are challenged to care responsibly by collaborating effectively with health providers trained in other disciplines. All these interactions double as opportunities to develop new areas of professional competence that will contribute to LTC residents’ well-being.

The scarcity of resources in LTC caused each of us to consider how best to position our work. For instance, Rebecca attempts to strike a balance between more intensive service and brief consultations across multiple facilities, while Paulette carefully considers what type of research is most likely to provide maximum benefit in facilities that have staffing at minimal levels. As with most ethical dilemmas, there are no easy answers. These situations require an ongoing assessment of risks and benefits of each possible course of action.

Advocacy is a natural outcropping of our mutual concern about the risks induced by resource scarcity. It is an expression of our general caring, and a way that we work to maximize benefit by extending responsibility. But different opportunities for advocacy are afforded by different roles and career stages. Early in a career as a consulting psychologist, Rebecca has advocated most by encouraging other professionals to care responsibly; in other words, by extending responsibility. Early in a research career, Paulette has recognized that research can promote social change. On the other hand, Fern has found it more natural to respond to a call to advocacy later in her career, when her experience and professional relationships opened windows of opportunity for influencing policy changes that contribute to the well-being of LTC residents.

LTC residents can be very vulnerable due to such factors as health status, social stigma, and scarcity of resources. The ethical principle of Responsible Caring (CPA, 2017) asks psychologists working in this environment to attend to residents’ well-being. Internalizing and expressing ethical values such as general caring, competence, analyzing risks and benefits, maximizing benefit, minimizing harm, and extending responsibility can help psychologists working in this environment keep residents’ well-being in focus. In conjunction with the other three principles of the Canadian Code of Ethics for Psychologists—Respect for the Dignity of Persons, Integrity in Relationships, and Responsibility to Society—the Principle of Responsible Caring provides a valuable basis for making decisions about a variety of complex questions that arise in this diverse and rewarding work.

Questions for Reflection

1. Imagine you have a health condition requiring the support offered in a LTC facility. What services do you need/want? What choices do you want to have?
2. How should psychologists balance each LTC resident’s freedom to create an environment that meets the needs of all residents? If long-term care is my home, should I be able to smoke marijuana in my room? Or listen to music at the volume I prefer?
3. In rural settings, staff can share close ties with LTC residents. How might those multiple relationships across family members, residents, and care staff affect work as a psychologist? How would this influence the way you share information with interprofessional team members?
4. Interprofessional teams are essential to the care of residents. What challenges in communication might there be? What could you do to promote good communication with other professionals? How would these efforts contribute to the management of complex problems or ethical dilemmas?

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