Later Life Care Planning Conversations for Older Adults and Families

Abstract

While most older adults have thought about their future care needs, few have discussed their preferences with family members. We interviewed older persons (24), adult children (24), health professionals (23), and representatives of stakeholder associations (3) to understand their views and experiences on later life care (LLC) planning conversations, in terms of (a) their respective roles, and (b) barriers and facilitators that should be taken into account when having these conversations. Roles described included that of information user (older persons), information seeker (family members), and information provider (health care providers). The study identified practical and emotional considerations relevant to LLC planning conversations. This study found strong support for planning for LLC before the need arises, as well as important potential benefits for older adults, family members, and health professionals. There is interest in, and need for, resources to guide families in LLC planning.

Keywords

retirement caregiving long-term care intergenerational relations

Introduction

While the majority of older adults have thought about their future care needs, few have discussed their preferences for later life or end-of-life care with family members. Accordingly, few have made any concrete plans (Kulys & Tobin, 1980; Sörensen & Zarit, 1996). For example, planning ahead for a time when independent living may no longer be possible will help families to avoid making hasty, and possibly inappropriate, decisions in times of crisis. Specifically, preparing for a stressful event, preferably when the older person is relatively healthy (Malcomson & Bisbee, 2009), may help individuals cope with the stressful event once it occurs (Aspinwall & Taylor, 1997), and may avoid difficult decisions having to be made by distressed family members who may not agree on the preferred options (Carr & Khodyakov, 2007). Older persons may often incorrectly assume that their preferences are known to their family members and friends (Malcomson & Bisbee, 2009; Whitlach, 2008). This information is important, as adult children often help their parents to navigate complex later life care (LLC) decisions relating to financial, legal, housing, medical, and end-of-life choices (Carpenter & Mulligan, 2009).

While there are countless brochures, booklets, guides, and other informal literature available that provide older persons and their family members with information and tips on how to have conversations surrounding the multiple facets of LLC decisions, limited peer-reviewed research on LLC planning is available. In a qualitative study that examined how seniors make decisions about advance care directives, Lambert and colleagues (2005) found that seniors primarily used their personal experiences with death and illness (rather than other sources of information) to make decisions about advanced care. Carpenter, Lee, Ruckdeschel, Van Haitsma, and Feldman (2006) found that adult children are often not able to accurately predict their aging loved one’s preferences for everyday matters or more important health care issues, and as a result, the authors advised that families discuss LLC issues before the need arises. A study by Carpenter and Mulligan (2009) recognized challenges associated with adult children collaborating to coordinate care for their parents. It was recommended that the family be able to talk with each other using good communication skills to facilitate conversations (Carpenter & Mulligan, 2009) that are inclusive, respectful, and direct so that thoughts and feelings can be shared openly (Olson, 2000). To facilitate this discussion, Carpenter and Mulligan developed a workbook-based intergenerational intervention, used to engage multiple family members in developing LLC communication skills. The workbook consists of four chapters: issues families may face, talking with each other about aging issues, making decisions together, and sharing your family’s opinions. Families acknowledged the intervention to be an eye-opening experience, informing and teaching them how to talk about sensitive issues with each other. Finally, a number of books have been published that discuss how to have LLC conversations with a loved one, and while they have made important contributions to the literature, they lack substantiated empirical findings (Piver, 2004; Solie, 2004).

Several models and theories have been suggested that might underlie LLC conversations, including affective forecasting, implicit decision making, normative affective model, hierarchical compensatory theory, task specificity theory, and patterns in “Ways of Dying.” Wilson and Gilbert’s (2003) theory of affective forecasting describes the potential for older adults and family members to communicate poorly during LLC discussions, based on their predictions of each other’s emotional responses. Implicit decision making among caregivers might also help to explain some of the behavioral intricacies that underlie an older adult–family member relationship during LLC planning. For example, Pecchioni (2001) found two implicit mechanisms to explain why mother–daughter pairs had not had explicit discussions about LLC preferences. First, daughters felt that as they knew their mother well and observed their mother caring for an earlier generation, they felt they understood their mother’s preferences; second, the pair did not want to consider planning for the mother’s mental or physical decline. Therefore, the reasons and assumptions that adult children make about their parent’s care preferences are important to consider when studying LLC conversations. A further model that underlies LLC conversations is the normative affective model. A study by Roberto (1999) examined the commonalities and differences among older adults and their family members using this model to explain individual decision making. Specifically, it was suggested that people make decisions based on emotionally charged values and commitments (Etzioni, 1988), and in this study, it was found that the health status of the older adults influenced their responses as well as their family members. In an additional study by Cicirelli (2006), 60 mother–daughter and mother–son pairs were studied. The findings inform how adult children respond to their caregiving role during LLC, as it was found that adult children tended to dominate the decision-making process, while the mothers took on a subordinate role (Cicirelli, 2006). The closeness of the parent–child relationship influenced the decision-making process, expected outcomes, and regrets (Cicirelli, 2006). The hierarchical compensatory theory and the task specificity theory are two additional models to potentially explain decision making for LLC (Penning, 1990). The former model suggests that patterns of assistance follow a selection process based on an individual’s preference and reflects the primacy of relationships, whereas the latter model recognizes that older adults often elicit help from family, friends, and professionals as needed, depending on the task. These two contrasting models may help to inform the role of family members and health care providers in LLC conversations and decision making. Finally, Glaser and Strauss (1970) identified obstacles that family members experience when discussing issues about end-of-life care, including preparing for death and working together as a family to distribute responsibilities.

Based on these models and theories, conversations about LLC planning are likely to be emotionally charged, and based on implicit and potentially incorrect assumptions. Previous research and theoretical work also point to the importance of tailoring supports for LLC conversations based on individual family dynamics and the health status of the older adult.

While studies have identified the merits of LLC planning for the aging loved one and their family members (Barrett, 2001; Fowler & Fisher, 2009; Pinquart & Sörensen, 2002; Pinquart, Sörensen, & Peak, 2004; Sörensen, Duberstein, Chapman, Lyness, & Pinquart, 2008), there is limited research on how to actually have these conversations and the tools that may help to support these conversations. In particular, there is a lack of literature that combines the three primary perspectives of LLC planning: older adults, their family members, and health care providers or stakeholder associations. This qualitative study aimed to answer the following research question:

Research Question 1: What are the views of older persons, their adult children, health and social service professionals, and other interested stakeholders toward LLC planning conversations, specifically in terms of (a) their respective roles, and (b) barriers and facilitators that should be taken into account when having these conversations?

Method

Participants

Over a 4-month period, a total of 74 individuals from five Ontario communities participated in key informant interviews. Interviews were conducted with 24 older persons (current or potential care recipients), 24 family members (current, potential, or previous caregivers), 23 health and social service professionals, and 3 representatives of key stakeholder associations (see Table 1).

Table 1.

Study Participants (N = 74).

Type of participant	Location/description
Current care recipients (older adults)	From for-profit retirement homes: 10 (6 females, 4 males)
	From for-profit LTC homes: 4 (4 females)
	From not-for-profit LTC homes: 1 (female)
	From the community: 2 (females)
Potential care recipients/informal care recipients (older adults)	From the community: 7 (4 females, 3 males)
Previous caregivers (adult children)	Family members of retirement home (residents): 5
Previous caregivers (adult children)	Family members of LTC residents: 5
Current or potential caregivers (adult children)	Family members of older persons in community: 14
Health and social service professionals and other stakeholders	Family physician: 1 (male)
	Health professionals in retirement homes (for-profit): 8 (females)
	Health professionals in not-for-profit LTC home: 4 (females)
	Health professional in for-profit LTC home: 1 (female)
	Health professionals from not-for-profit retirement and LTC home: 2 (females)
	Parish nurse: 1 (female)
	Community care case managers: 4 (females)
	Health professional from specialized geriatric service: 2 (females)
	Seniors association representative: 1 (female)
	LTC association representative: 1 (female)
	Community care association representative: 1 (female)

Note. LTC = long-term care.

This study was focused on the Waterloo–Wellington region, and study sites were selected to span small and large communities within the surrounding region. Researchers selected a purposeful, convenience sample of older adults, family members, health care providers, and stakeholder association representatives connected to the identified sites. The aim of the sample was to collect data from a variety of individuals, including older adults and family members, who were planning for LLC or had recently made LLC decisions. Researchers selected individuals and sites to enable the collection of a diverse range of experiences based on family structure and dynamics, health status, and housing or service arrangements or affiliations.

Three recruitment strategies were utilized to invite older adults and family members to participate: (a) notices providing study background information were posted in seniors’ centres; (b) potential participants were identified and contacted by long-term care (LTC) or retirement home staff; and (c) researchers connected with personal acquaintances. Additional family members were recruited from interviews with older adults using a snowball sampling approach. Therefore, about half of the older adults in the study were linked with a family member in the study sample. Finally, health care providers and stakeholder association representatives were recruited from LTC homes, retirement homes, and the community who had experience working with older adults and their families during LLC decision making. Often, these individuals were directors of care, social workers, and Community Care Access Centre (CCAC) case managers.

Most interviews were approximately 30- to 45-min long (range = 15-90 min). When distance or other circumstances precluded the possibility of meeting with a participant in-person, the interview was conducted over the telephone. The mean age of the older persons interviewed was 81 years.

The interviews followed a semistructured interview guide that included a scenario about a 65-year-old widow named Doris who lives alone in a two-storey house, and who has one adult son and one adult daughter, who both live out of town, and is experiencing increased pain from arthritis. Her daughter is concerned about her mother’s ability to manage at home independently. The study participants were asked about what advice they would give to Doris and her family. The scenario served as a catalyst for discussion of LLC planning. Vignettes have been used in previous research to present respondents with a detailed, concrete stimulus to elicit real-life decision making and judgments (Alexander & Becker, 1978). This research technique has also been used to facilitate discussions about LLC with older adults and caregivers (Cicirelli, 2006; Horowitz, Silverstone, & Reinhardt, 1991). Participants were asked to reflect on their personal experiences, and to adopt a third party or outside perspective to comment on other experiences. For example, following the vignette, the researcher asked, “What would you do if you were Doris’ daughter?” and then later, “Have you spoken to your parent(s) about their changing needs as they get older?” and “How might you/did you start the conversation?”

Interviews were audio-recorded and transcribed verbatim, which resulted in over 1,000 pages of transcribed text (double-spaced). Two researchers conducted independent thematic analyses of the data, following the Braun and Clarke (2006) step-by-step guide to thematic analysis. While one analyst was involved in the study development and data collection phase, another analyst became involved in the study during data analysis, and brought an outsider perspective to the process. Interviews were conducted for the sole purpose of this research, allowing the inductive thematic analysis to be data-driven (Braun & Clarke, 2006). This approach involved the development of themes from the bottom-up, and meant that the themes were strongly linked to the data. First, researchers familiarized themselves with the data, which included repeated rounds of reading, and then generated initial codes to label the data. Categorizing the data into initial codes made it possible to derive the themes from the data themselves, rather than from prior theory or research (Braun & Clarke, 2006). Next, they gathered and condensed the initial codes and combined them to form overarching themes. The themes were refined through repeated investigation of patterns of commonality among the initial codes. Finally, the researchers reviewed and defined the overarching themes to describe the specifics of each theme and how they are linked to demonstrate the overall experience of the participants. Any disagreement between the two researchers that arose during analysis was resolved through discussion.

Initially, interviews with older persons, caregivers, and health care professionals and representatives were kept in distinct groups for analyses, recognizing needs and preferences across the groups may be very different. Then, the findings from each of the three groups were contrasted to understand the commonalities and differences of the perspectives on how to have and support LLC conversations. Thematic saturation was reached within each participant group when no new themes were discovered from the data (Daly, 2007). Direct quotes from participants are used where appropriate to promote the trustworthiness of the findings (Hsieh & Shannon, 2005). The availability of the informants’ verbatim accounts allows the reader to critically assess the interpretation of the findings from the direct quotations (Krefting, 1990).

This study received ethics clearance from the Office of Research Ethics at the University of Waterloo.

Results

Themes from the interviews with older adults, family members, health care providers, and stakeholder association representatives are presented in Figure 1. The themes are presented to explain the role of each participant group in LLC conversations, and to describe the practical and emotional considerations that should be taken into account when having these conversations.

Figure 1.

Themes from interviews with older adults, family members, health care providers, and stakeholder associations.

Theme 1: Role Considerations

Perspectives of older adults

Older adults as information users

Older adults want to have adequate information to make informed LLC decisions and attributed difficulties managing their LLC planning to a lack of information. Older adults reported lacking key information about the health care system and available resources and services to make informed decisions about their LLC.

Each interview highlighted information gaps related to various aspects of LLC planning, such as the health care system, available services, financial expectations and advice, housing options, and legal advice on how to coordinate family decision making. One senior explained the challenge regarding where to find the information they needed to make an informed LLC decision,

. . . the first thing I think of is, who do I call? Besides family, who do I call? Trying to look up anything in the phone book is, you know, what government, it’s taken a lot of practice . . . and I would like to know immediately who the heck would I call . . . because if I know that, then I can find my way through a maze . . .

Another senior in the community stated, “I’m wishing now, the situation that I’m in, that I had done some planning 10 years ago for where I am now.” This statement also suggests an opportunity to increase awareness of planning for LLC before needs arise in the older adult’s life.

Perspectives of family members

Mutual partnerships

Effective LLC conversations need to be positive, respectful, and be guided by concerns for the older adult’s well-being. Caregivers felt that the full involvement of the older adult was key to these discussions. A family member commented on the benefits of having the older adult involved in the decision-making process:

I think for my parents to know that they have choices. I think they don’t have to live with a sense of anxiety around thinking about something they don’t want . . . like I think there’s a sense of knowing that whatever happens we will work through it together and that we’re committed to that as a family. That this is not their problem to resolve—this is our family’s, you know. And that we want to be able to respect whatever our parents want and I think they have a very strong sense of that because of the conversation.

Another family member explained what could happen if an older adult was not actively included in these discussions:

Sometimes they (the senior) just shut down. They just—they don’t feel a part of the whole situation, things are out of control, they’re angry.

Family members as information seekers

Caregivers desire information and are comfortable mobilizing health care providers in LLC conversations with their loved ones to provide information necessary to make informed choices. It was evident that few older adults or their loved ones know where or how to access information about the options for LLC. One family member of parents in a LTC home stated,

I don’t always know the questions to ask, so I would have loved to have more resources for me to know what to ask and what to consider because I really feel I- I’ve used the word stumble a few times- I’ve been stumbling along this whole process. But then I’m sure everyone does.

This feeling was echoed by another family member: “We kind of stumbled along and learned stuff as we went . . . this was a struggle for all of us.” These quotes point to the need and desire for information regarding LLC planning to aid in the conversation with their loved ones. Examples of the types of information family members mentioned they would find useful included housing options, legal advice, communication strategies, changing roles in their relationship with an older adult, community services and resources, helpful websites, and modifications that can be made to the home to allow their family member to live there as long as possible. Overall, these findings speak to the benefits of a proactive approach to providing families with the information they need for LLC decisions.

Perspectives of health care providers and stakeholder association representatives

Older adults as directors of care

Older adults, who direct their own informed LLC decisions, are more comfortable with their decisions, adjust easier to transitions, and remain engaged and positive about their care. Health care providers made several comments about LLC planning conversations having a positive impact on older adults moving to residential care, for example, translating into smoother transitions for family members and for staff in general. These health professionals recognize that seniors who have discussed and been involved in planning before a crisis experience a smoother transition to their new home, easier adjustment, better mental and physical health, more positive attitudes, and greater involvement with programs in their new setting. In addition, planning before a crisis results in family members feeling more reassured, comforted, and less guilty about the decision. It is also translated to reduced stress for staff working with the older adult. Several health professionals echoed these observations about those who plan ahead:

The residents settle in much easier. They make friends much easier. The transition is just very smooth. And families tend to come in and take them back home without feeling that they are going to get put in the situation where they’re going to have trouble getting them back here. Because it’s their parent’s “decision to come.”

I think it’s less stressful for everybody. It’s less stressful for the person that’s moving here . . . If anyone is in the situation where it’s the unknown for them if you kind of have someone there who is a little bit confident—what’s the word I’m looking for—it’s reassuring for you . . . It’s less stressful for the staff too and for a lot of people—it’s overload, mentally, emotionally, physically, and maybe if it was a little less stressful they could take it in stride a little bit easier, and some people do.

The health care providers who were interviewed offered unique perspectives because they could compare and contrast older adult and caregiver experiences from numerous LLC transitions they were involved in.

Family members as advocates

Caregivers need to be proactive and advocate for their family, but require access to information to assist in making clear LLC decisions. Health care professionals described that “those who plan have a level of calmness.” These participants also stated that planning helps in establishing a sense of control for the older adult and allows everyone in the circle of care to be informed of the individual’s wishes and which options are appropriate for the individual and his or her family. A quote from a physician describes his experience with families who have not had the conversation:

It’s just awful. Decisions don’t get made. Decisions are delayed. That necessitates other decisions that are forced that they didn’t want, even though they didn’t know what they wanted. So there’s a lot of anger. I think the patient or client suffers as a result because nothing happens. I mean, there’s no order to what happens. I think the conflict between the family, it just means everybody’s in a turmoil and it’s very hard to recover from that because you can’t backtrack. So it becomes a situation that is virtually intolerable to everybody including the other caregivers. I mean the nursing home people or the hospital people or whatever because you can’t get someone to make a decision and you have conflict among people and you’re dealing with too many people.

Health care professionals felt that caregivers have a responsibility to encourage their loved ones to plan ahead, and echoed the benefits associated with LLC preparation, in the short term and long term.

Health care providers as information providers

Health care providers are responsible for informing older adults and their families about LLC options. Older adults and families without prior experience with LLC may not understand the LLC options that are available, or how to access them. The health care providers suggested their involvement would be in helping to prepare and inform individuals of the available resources and options. Few older adults and family members stated that they would visit their family physician for information on LLC planning, even though some agency representatives and health professionals wished the “family physician would take on a more active role” in this area.

Health care providers as conversation facilitators

Providers can facilitate conversations due to their objectivity and understanding of differences in family dynamics and cultures. As mentioned previously, health care providers readily recognized their potential to become involved in LLC discussions if dictated by family dynamics. An area where skilled facilitation would be helpful was in terms of how culture influences LLC planning. It was noted that Asian cultures often keep their older family members together in the same household with younger family members, and some European cultures (Greek, Italian, and Portuguese), Jewish families, and East Indian families “struggle with placement” and have the hardest time having a parent placed in LTC. There is a “complete dependence on children” in some of these cultures. This is associated with significant levels of guilt on behalf of the adult child who typically feels embarrassed or ashamed in needing a LTC home for his or her parent. They tend to use LTC as “a last resort.” As one health professional noted, “It’s gotten quite serious if they’ve placed a parent in a long-term care home.” It was also noted that families of these cultures are often more reluctant to access services in the community. One health professional commented that “they don’t plan ahead, they wait until the very last minute and come in crisis and it’s very, very stressful for them.” Health care providers felt that they could take on the role of facilitating or mediating the conversation when necessary.

Theme 2: Practical Considerations

Perspectives of older adults

Health care providers as conversation facilitators

Outside health care providers could facilitate or mediate LLC discussions with family and provide LLC information and links to resources. Older adults recognized the role of their health care provider as a facilitator for difficult LLC discussions with families. One older adult thought it might be appropriate to “use a health care person to mediate if there is disagreement among siblings, having the conversation can be emotional for all involved and ‘tear families apart.’”

Perspectives of family members

Initiate conversations early

Initiating conversations early could reduce barriers to effective decision making. Although some caregivers expressed concern about initiating conversations when the older adult was not ready, the overwhelming message from family members, upon reflecting on their experience, was to start early. A family member stated, “Have [the conversation] before a crisis. That’s number one.” Another family member recommended that families should talk “before it becomes a resentment [to talk].” One benefit to planning is that family members and the aging parent become aware of their options. This awareness leads to greater calmness, helps to alleviate doubts, and eliminates some of the stress and potential conflicts with family members down the road. As one family member stated,

Well I think that one of the things, she would have sort of a feeling or notion that things weren’t as bad as she thought they might be, that this happens to everyone and that there are things in place for her. She won’t be left alone and hurting or disabled or anything and that there are lots of options out there, some for her to stay in her own home if she wants to.

From the perspective of the family member, they tended to advise that they themselves should be responsible for initiating the conversation because, “it’s not easy for elderly to admit their limitations.” As one family member put it, in reference to the Doris scenario, “it’s [the daughter’s] obligation as a responsible family member to be looking out for those in her family.”

Use everyday occurrences to start the conversation

While most family caregivers felt it was important to initiate the conversation early, their advice varied in terms of how to initiate the conversation. One recommendation reiterated by several participants included using naturally occurring opportunities to raise the topic. One family caregiver stated,

Use a situation that has come up with someone else as starting point and then approach it lightly and with care.

Some participants also advised that the discussion be direct, while others recommended an indirect approach, but a common piece of advice was to keep the conversation informal.

Do your homework

Family caregivers felt that it was important to do background research so that when it came time to have a LLC planning conversation with the older adult, they had the information available to make an informed decision:

. . . perhaps it might be a good idea to do some background research so that when it is time I think going by my mom and some of her friends there are concerns about things like cost, what it cost to go into a care facility and what’s available whether it’s . . . I didn’t really realize the difference between a retirement home and a long-term care facility and what that’s all about until I actually did some research . . . So I think probably having a lot of information ready before you start the conversation.

As a possible solution to improve access to information, one family caregiver stated,

Frankly, if there was a form or something that might help guide our search and help us make some of these decisions, have some questions to ask . . . that would have helped. Oh yeah, absolutely.

These findings reiterate that family members act as information seekers and have the need and desire for information regarding LLC planning to aid in having these conversations with their loved ones.

Record the conversation

Family members recommended keeping written summaries of LLC planning conversations with their loved ones as a means to “keep a checklist on parents’ health (slips, falls, driving, etc.)” and to assist with decision making in the longer term; however, their views on the expected degree of formality of the records varied. Participants who advocated for informal record-keeping acknowledged that, “if this is done, it should be done from a planning perspective (not a historical perspective), and should be done informally, and not too often.” It was suggested that the guide needs to be clear that decisions are not carved in stone, but can change as needs change.

Participants who advocated for more formal record-keeping recommended that these summaries act as more of a contract between the older adults and their family. For example, one family member suggested,

Have a spot where everyone could sign it maybe like a legal document, um, I think that would be good, because even if you have, it doesn’t matter how many kids, 1, 2, 8, if you have everyone’s signature on it and it’s legal then there is no bickering when the time comes, not even at their death, about where they have to go, and then you could say to the parents, “hey, you signed this when you were in sound mind kind of thing” . . . if you have it down on paper and have discussed it during a calm time in your life it makes it easier, having people say, “oh yeah, I did sign that one time and I probably decided for a good reason” and some people do realize that they do have dementia or they do have Alzheimer’s and they will slip back and it will just make it easier to break down those walls of hesitation.

Perspectives of health care providers and stakeholder association representatives

Initiate conservations early

Similar to family members, health care providers acknowledged the importance of initiating LLC planning conversations early, before a crisis:

I think that having a conversation in general terms is important but those conversations probably need to happen earlier in life . . . Most people don’t understand all of the implications for personal care and support anyway and so I think just a conversation in general terms.

Another health care provider explained,

I think the big thing that we see is that they have no history. They have no history of those discussions so they’re in a crisis. And the crisis is way worse because they are trying to make decisions . . . they have no background, they have no relationship to do that and they have no skill or history in making those kinds of decisions. And they haven’t preplanned so they don’t know what to do. And then they’re really . . . so they’re trying to . . . in what is a life crisis they add the stress of it being totally . . . they’re going into the black hole. Whereas people who have done the planning, done some discussions, at least know what their options are.

Use everyday occurrences to start the conversation

Health care providers felt it was important to consider the environment in which you have the conversation. For example, one health care provider discussed having this conversation over an informal dinner:

For some families having this conversation around the dinner table after everyone’s shared a meal together and had a few glasses of wine and they’re amenable to approaching this with humor and compassion.

I think you probably need to have things, consider the environment in which the conversation is to be held, consider that you might want to do this when you’re taking a drive in the car, for example again, my teenagers have lots of good conversations with me in the car as opposed to sitting around the table or going to a bar or having a family meeting or any of those kind of things because the conversation just . . . kind of take advantage of the moment and I think that that’s also something families might need to be helped to identify. Sometimes the moment will feel right. If it feels right, go for it.

Do your homework

Older adults and their families need to be informed about all aspects of LLC to ensure they are confident in their decisions. To prepare, participants advised families to become educated about the options for care, and about any illnesses affecting their aging loved one (e.g., Alzheimer’s disease). Older adults and family members described becoming aware of the options through the telephone book, word of mouth (from people they know), and through agencies they were aware of such as the Alzheimer Society, Red Cross, and the CCACs that coordinate access to home care and LTC services in Ontario, although the latter was less common. An agency representative stated, “[Older adults and their family members] can start exploring what’s out there so you can link what you know with what you need.” Having direct experience in a care environment was seen as being especially helpful in LLC decision making. A health professional commented,

The people that make the easiest transition are the ones that perhaps have volunteered in this environment, have looked around, know what the expectations are and made decisions. Things like deciding what to keep, what not to keep, just knowing that, where they’re going, it makes an easier transition . . . so they have studied all the different types of support that are available . . . they seem to assert themselves, are involved with the programs, come with a different attitude.

Health care providers described the information they thought that family members and their loved ones should be aware of regarding LLC planning conversations:

I think that it would be helpful for kids to know what are some of the problems, functional, cognitive, emotional, and medical that can be associated with aging but to clearly lay them out so I’d love to see that so they can . . . that will help them to be able to anticipate discussion in a timely manner.

So I’m just thinking that if this were an online guide, you could create clips that actually show families having . . . engaging in this kind of dialogue. It could be scripted so my general feeling from a pedagogical perspective that people often learn best when they see something in action and they can mimic it or model it if you will. I think that that would be critical particularly the one you know about how people learn and how they actually apply it, having something static like a written document without that kind of assistance might be problematic.

Record the conversation

Health care providers expressed differing views on whether LLC discussions should be recorded or summarized. One health professional stated, “I think it’s best to get things down on paper, even if it’s just a little piece of paper ‘Mom, you remember when we talked about this?’ so at least you have a reference.” Some participants advised against keeping a written record because that was “too formal,” and “too official.” One health professional described why she was not in favor of a written record:

I’m thinking of my mother in this instance . . . she would get very paranoid and she would be worried, “why are you writing that down, everything I say you’re going to throw it back in my face,” and you know, they just—I don’t think she’d think of it as open conversation.

Theme 3: Emotional Considerations

Perspectives of older adults

Emotional barriers

LLC conversations challenge older adults to overcome their fears of loss of control, mortality, and role changes, and increase their comfort in making important decisions. Older adults described LLC discussions as difficult because of the many changes that are happening in their lives. One older adult shared that, “people are often afraid to face their own mortality,” suggesting that having this conversation may make the older adults aware that they can no longer take care of themselves as well as they once could have, and that with their children getting older they will become increasingly responsible for taking over their care.

Family dynamics

All of the older adults interviewed wanted family members to be part of LLC discussions. However, some expressed concern with how this could impact family dynamics. An older adult reflected on his or her experience moving into LTC:

Families with good, frequent communication: They never seem to get into crisis, it’s a lot easier on children—they don’t feel as guilty, it’s a lot easier on the parent—their transition into the retirement home or long-term care home is smoother and quicker.

This statement depicts the significant influence of the family relationship, including adequate communication, on an older adult’s experience with LLC planning. Interestingly, several older adults recommended that they should take control and initiate the conversation rather than the adult children, so that the responsibility is not placed on the family, and because

Parents don’t want to be bossed by their children.

The parent needs to bring up the issue because kids are worried about offending [their] parent.

Thus, it would seem that the decision to initiate LLC discussions from the perspective of the older adult may be to reduce the potential for conflict to arise within the family, thereby ensuring the maintenance of favorable family dynamics.

Perspectives of family members

Heightened emotions of older adults

Caregivers recognize that emotions are heightened for older adults during LLC choices and focus needs to be placed on being sensitive to the changing needs and emotions of the older adult. A consistent message from family caregivers was their concern for the emotional experience of their aging loved ones as they plan for LLC. One family member shared, “The elderly are very good at hiding these things (things they are no longer able to do), not only out of denial but as a measure to preserve some dignity.” Therefore, the majority recommended having LLC conversations prior to their decline to enable clear decision making. A caregiver reflected on her experience planning LLC with her parent:

Trying to talk about things [in a crisis] when you’re least able to think clearly about the options and I think talking about it sooner than later also helps everybody to be really clear about where they’re coming from and why they feel the way they do . . . in a stressful situation it’s so much harder to hear what people are saying . . .

Need for gentle conversation

Family members discussed the importance of taking a gentle and respectful approach to the discussion so as not to undermine their loved ones:

I think if you do it in a respectful way you know, I don’t think, I think if [the daughter] brings it up for example with her mother and does it in a respectful way and is really clear about why she’s talking about it then I don’t think that that’s patronizing or insulting to the mom or making you know assumptions that she can’t take care of herself and I think if the mother brings it up I think she can just be really clear about I feel I need to talk about this as I look ahead.

I think ideally it would be better to talk about it now. Once there’s an issue then it becomes more difficult but I think you have to make it clear that this isn’t putting pressure on her that this isn’t an imminent thing but that it’s something that should be thought about.

Perspectives of health care providers and stakeholder association representatives

Family dynamics

On several occasions, health care providers discussed the influence of family dynamics on LLC conversations. It was acknowledged that the ability of family members to communicate plays a key role in the success of the conversation. As one health care provider explained,

Okay, so when the situation is good, when communication is good, when the relationship is good, there are no down sides [to having the conversation].

The past nature of the family relationship may also affect the quality of LLC conversations:

Some families seem to be . . . if they’ve had clear and direct relationships amongst each other their whole lives and have had clear and direct parents, somehow they have those conversations. And so there are some families who seem to do that. They seem to be organized and logical and more pragmatic I guess. And then other families who have never had that kind of relationship or maybe it’s the kids have never had an adult relationship with their parents . . . and I think that that’s more difficult because they’ve never had adult conversations with their parents where it’s an equal participation.

Finally, one health care provider explained the effects of poor family dynamics on LLC planning and decision making:

What happens is that they end up arguing with each other because they don’t know how to . . . they haven’t figured out how to work through whatever dynamics they have with each other and then nothing ends up getting done because it just often ends up in an argument with bad feelings and then life continues you know it’s not as though they harbor ill feelings but life just carries on and then when . . . if an adult child makes another attempt usually it’s not a good outcome. They need professional involvement at that point.

Heightened emotions of older adults

Similar to family members, health care providers acknowledged that emotions are heightened during LLC planning conversations and that this may influence their desires to engage in such discussions:

They don’t want to discuss. It’s a fear. It’s a fear of acknowledging aging, mortality, a fear of dependence. It’s all of that. Denial.

To start and sustain the conversation in a healthy manner, one health care provider recommended,

I would say to families just be aware of you know what your parents’ defense mechanisms are and if you know they can understand what the defense mechanisms are, they should try to figure out how to talk with the parents around that so that they can have as smooth as possible a discussion. The other thing is that adults need children need to be educated on what to even look out for in order to anticipate problems. They don’t even . . . they don’t even know that.

Need for gentle conversation

Conversations should be gentle, honest, and directed by the older adult. Health care providers acknowledged the possibility that if the older adult is not ready to have the conversation, it could be “overwhelming” for him or her, and could elicit feelings of anger or frustration. To facilitate this discussion, different strategies could be used to accommodate varying family dynamics and structures. One health care provider commented on the importance of balancing encouraging and forceful conversations, and the impact these conversations have on the older adult:

Sometimes they (the older adult) just shut down. They just—they don’t feel a part of the whole situation, things are out of control, they’re angry, um you know, they almost become rebellious. And that’s not, generally speaking, their nature. It’s just that things are out of control. They’re anxious, they’re afraid. They think their families are cutting them off.

Another health care provider shared, “For families that have never been able to talk, they will probably find themselves in a crisis situation without being able to talk about it.” However, her suggestion in this case, which was echoed by each perspective, was to have a professional mediate these conversations, to facilitate better communication strategies and to share valuable information about LLC processes.

Perspectives across all three groups

Initiating LLC conversations prior to when the needs arise allows for clear, informed decision making. Across all perspectives, the need for education and information was acknowledged as important in facilitating these challenging conversations.

Our findings also suggest that family size and dynamics play an important part in determining how to summarize and record the conversation. Some participants felt that if family dynamics were good, there was no need to write things down, but if there was a history of conflict, or if family size was large, having a written record of conversations would be helpful. Several participants also advised against keeping a written record because it was “too formal” and “too official” as described in the earlier quotation about a mother potentially being paranoid about a record being thrown back in her face.

Advice about how to have the conversation also varied, but similar elements were reiterated by several participants, and the strategy of using naturally occurring opportunities to raise the topic was popular. Whereas some participants advised being direct, others recommended an indirect approach. One common piece of advice was to keep the conversation informal. Other pieces of advice or recommendations about how to have the conversation and to be sensitive to the emotions of older adults included be straightforward, be honest, be respectful, be a good listener, be sensitive to the older adults and do not undermine their confidence, express love and concern, focus on what is best for the parents and not what is best for the children, make decisions in a step-by-step fashion, ensure it is a mutual exchange, and enlist the help of a health care provider or outside mediator.

While most participants stated that either the aging loved one or adult family members could initiate the conversation, it was interesting to find that some seniors said that they should take control and initiate the conversation rather than the adult children so that the responsibility is not placed on the family, and that “parents don’t want to be bossed by their children.” They also mentioned that “[The older adult] should [be the one to bring it up], she’s the one that’s going to have to make the change.” Other participants (family members) tended to advise that adult children should bring it up because “it’s not easy for elderly to admit their limitations.” As one family member put it in reference to the case scenario, “it’s [the daughter’s] obligation as a responsible family member to be looking out for those in her family.”

Older adults and family caregivers expressed differing views on the role of health care providers throughout the LLC planning process; older adults viewed them as facilitators or mediators, while family caregivers viewed their role as providers of information. As well, health care providers were able to comment on a range of LLC planning experiences with numerous older adults and their families, whereas older adults and family member participants were limited to their own experience. This further supports the role of health care providers as mediators throughout the LLC planning process. Health care providers were also more apt to emphasize the role of the family member in initiating LLC conversations compared with older adults and family caregivers themselves. Finally, family caregivers tended to focus most heavily on the impact of LLC planning and being sensitive to the older adults about health decline and loss of control compared with health care providers and older adults themselves.

Discussion

The results of these interviews support and extend available literature about why, when, and how to have a conversation about LLC planning. There was overwhelming support for having the conversation before the need arises, and great interest in, and need for, resources to assist and guide families as they plan for later life. The study has identified the roles likely to be played by older adults, family members, and health care providers in LLC planning discussions and decision making, as well as a number of factors, both practical and emotional, that should be taken into consideration when having these conversations. We believe the results of this study complement and support previous theoretical and empirical work on patterns of communication within families and family dynamics. For example, our work reinforced the potentially emotionally charged nature of these conversations (Etzioni, 1988; Roberto, 1999), as well as the need for explicit discussions to challenge implicit assumptions (Wilson & Gilbert, 2003) and for awareness of implicit mechanisms (Pecchioni, 2001) such as a reluctance to face one’s own mortality. Consistent with Penning (1990), our work found support for the hierarchical compensatory theory in the importance given to relationships and family dynamics, and for the task specificity theory, in the participation in LLC planning conversations to undertake tasks related to information sharing and decision making.

Available literature has consistently recognized the positive association between future care planning and an older adult’s psychological well-being (Pinquart & Sörensen, 2002; Pinquart et al., 2004). Specifically, it has been evidenced that preparing for future care needs may result in greater subjective well-being as preparation may increase control over the progression and outcome of negative or difficult life events and transitions (Pinquart & Sörensen, 2002). The findings of the present study are consistent with this literature, as it was found that although older adults were challenged during LLC conversations in terms of confronting their fears of loss of control, mortality, and role changes, for the majority, their overall level of confidence in making important future care decisions was increased.

Despite the established benefits of LLC planning, a small proportion of participants within the present study advised against planning ahead before a crisis. Although they were the minority, the reasons behind their choice should be considered, and could potentially include feelings of denial surrounding their current health status (Pinquart & Sörensen, 2002), anxious and worrisome feelings associated with thinking about future risks without an established solution (Skarborn & Nicki, 1996), individual personality traits (e.g., avoidant decision style, poor ability to cope, and external locus of control; Pinquart et al., 2004), and varying family dynamics and structure (Carpenter & Mulligan, 2009). This finding highlights the notion that a “one-size-fits-all” solution is likely to leave some people unsatisfied, and therefore, to some degree, the process of later life planning needs to be responsive to individual preferences and values regarding a desire for planning, information needs, and decision-making styles. For these individuals, raising awareness of the need to consider later life choices may not be helpful if supports and resources are not provided to encourage planning. This study has confirmed the need for resources to assist and guide families in LLC planning.

Family support was another important factor that emerged from the present study, as older adults expressed a desire for their family members to be involved in their LLC discussions; however, they expressed concern regarding how such discussions could impact family dynamics. This finding is consistent with current literature, as it has been identified that although adult children often coordinate care with their parents, collaboration among family members and preparation for caregiving can be challenging (Carpenter & Mulligan, 2009; Sörensen, 1998). Two important factors that encourage and facilitate care coordination and that should be considered when engaging in LLC planning discussions include communication and decision making. Specifically, older adults and their family members must be able to converse in a way that is inclusive, respectful, and direct (Miller, Ryan, Keitner, Bishop, & Epstein, 2000; Olson, 2000), and they must be willing to openly share and listen to the input of all members of the family circle (Olson, 2000; Skinner, Steinhauer, & Sitarenios, 2000). With respect to decision making, families need to be able to create different options, weigh these options, reach consensus on the decisions, and evaluate their choices (Carpenter & Mulligan, 2009). For families with strained relationships, one possible solution to ensuring a successful LLC planning discussion could include the addition of an outside health care provider within the circle of care. Not only could a health care provider help to facilitate such discussions due to their objectivity and understanding of differences in family dynamics and culture but they could also act as a primary source of information surrounding LLC planning and decision making for the older adult and their family members. Although health care providers did not explicitly state that they had the skills necessary to facilitate or medicate LLC discussions, they mentioned that they had previously been involved in these discussions and did not seem to possess any reservations about doing so. This would be interesting to examine in a subsequent study.

Across all three perspectives, access to adequate information and resources to support LLC planning and decision making was viewed as vital. This is consistent with current literature that describes the association between higher levels of social and financial resource availability and better preparation for future care needs (Pinquart et al., 2004). It is imperative that older adults are adequately informed about all aspects of LLC to ensure that they are confident in their decisions, and that families are provided with the necessary resources to support their loved ones in proactively planning their LLC, and to act as an advocate for their care. Literature on future care planning conducted within the United States highlights the possible role of social workers as a strategy for increasing older adult’s preparation for future care needs. Pinquart and colleagues (2004) described how social workers have the potential to interact with older adults and to initiate conversations surrounding LLC planning across multiple contexts, including (a) educational settings (e.g., senior centres), (b) direct referrals (e.g., from family physicians), and (c) discharge planning (e.g., following discharge from hospitals). There is also growing interest in the role of “patient navigators” who could support older people through transitions into and across care settings (Manderson, McMurray, Piraino, & Stolee, 2012). Another potential source of information for older adults surrounding LLC planning could include family physicians. As they are often the primary point of contact with the health care system for older adults, they have the potential to intercede and be proactive in encouraging and supporting older adults to initiate LLC discussions. With the continued push toward patient-centered care, shared decision making between physicians and older adults surrounding LLC planning can ensure that patient’s preferences are captured and that older adults and their families are provided with the necessary information and resources to support successful LLC outcomes (Ontario Medical Association, 2010).

Finally, it is important to consider the individual characteristics and attitudes of the older adults, as such factors may influence their engagement in LLC planning and decision making. Within a study by Black, Reynolds, and Osman (2008), it was found that gender, age, and functional status predicted greater planning behavior and more accepting attitudes toward LTC, whereas living alone and poor health status were associated with less advance care planning behavior and greater nonaccepting attitudes. Factors associated with a greater likelihood to have advance care planning documents and concrete plans for future care include increased age, higher educational attainment, and female gender (Black et al., 2008). It is important to consider the influence of these factors, especially when developing guides or protocols to support LLC planning and decision making for older adults.

Limitations

This research study had several limitations that may influence how the findings might be applied in the field of gerontology. First, the interviews captured only a snapshot of the participant’s experiences; researchers were not able to follow participants through transition to discuss expectations and then experiences. Second, some older adult participants were connected to a caregiver participant, but not all the data were collected in dyads. Perhaps future research might attempt to capture the triad’s experiences involved in this study, such as older adults, their caregivers, and health care providers. This study was unable to make inferences about the individual relationships between the set of three groups, which might bring further understanding to the theories and models that underlie LLC conversations. Third, we recognize that gender differences may play a bigger role than what we were able to explain in this study. Further research to parse out these differences is warranted. Finally, groups may not be representative of all older adults, family members, and health care providers as a purposive, convenience sampling approach was employed.

We also note that while many comments focused on housing transitions, the considerations identified may also be relevant to other types of decisions, for example, bringing in home supports.

Next Steps and Conclusion

This study found strong support for planning for LLC before the need arises, as well as important potential benefits for older adults, family members, and health professionals. There is interest in, and need for, resources to guide families in LLC planning. Our findings recently informed the development of a guide that supports family members in the why, when, and how of LLC planning conversations with their loved ones (Schlegel-University of Waterloo Research Institute for Aging, 2012, www.the-ria.ca).

Footnotes

Acknowledgements

We are grateful to all the individuals who participated in the interviews for this study.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by the Schlegel-University of Waterloo Research Institute for Aging and the Ontario Long-Term Care Association (University of Waterloo Office of Research Ethics Approval No. 12853).

Author Biographies

Paul Stolee, PhD, is an associate professor in the School of Public Health and Health Systems at the University of Waterloo. His current research focuses on integrating and coordinating health services for seniors, and on ways to support seniors and their caregivers through transitions between care settings.

Christine Zaza, PhD, teaches in the Department of Psychology at Wilfrid Laurier University and is an online learning consultant at the University of Waterloo. She has a doctorate in health studies and gerontology from the University of Waterloo and has completed a postdoctoral fellowship on nonpharmacological chronic cancer pain management, using qualitative and quantitative research methods.

Michael Sharratt, PhD, is president of the Schlegel-University of Waterloo Research Institute for Aging. He is also a research professor in the Faculty of Applied Heath Sciences where he was dean for 8 years. His areas of research include physical activity and plasticity in older adults.

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