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Advance Care Planning for the Older Adult and their Caregivers: A Literature Review

Emily Harames
Department of Nursing, Idaho State University
NURS 8826: Scholarly Writing
Dr. Gina Clarkson
December 5, 2022
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Introduction
Preparation for the end of life is an essential task for both older adults and their family caregivers.
Having an advance care plan is one way that older adults can express their wishes for treatment and
medical interventions at end of life. Caregivers are an important part of the advance care planning
process, because oftentimes, they must make decisions for the older adult when they are no longer
capable or too declined to make decisions for themselves. Although advance care plans allow older adults
to express their desires for the end of life, many older adults do not have an advance care plan.
Furthermore, caregivers may not aware of the wishes of the older adult is, making it difficult for
caregivers to make proxy decisions. Therefore, it is pertinent to review the literature and evaluate the
evidence regarding interventions that improve caregiver involvement in the advance care planning
process for older adults.
Search Description
A search (Figure 1) was conducted using PubMed and Idaho State University’s OneSearch
Health Sciences database in October and November 2022. The search was filtered to limit results to full-
text articles that were published from 2008-2022. For the sake of this review, articles were selected from
the top 50 most relevant articles resulting from this search. Articles were manually selected from the
search results based on highest relevance to the research topic.
Background
Advance care planning allows for the older adult to make decisions regarding their end-of-life
treatment plans. Older adults who participate in advance care planning interventions are more likely to
elect for less aggressive medical care at the end of life, which is associated with higher quality-of-life
measures and improvement in patient dignity and autonomy (Wright et al, 2008; Chiu wu et al., 2021).
Despite the known benefit of advance care planning, very few older adults engage in advance care
planning without formal intervention (Banner et al., 2019, Wright et al., 2008). The advance care plan
allows older adults to make decisions autonomously prior to end-of-life decline; this is important because
an estimated 70% of older adults lack the capacity to make decisions for themselves in the final days of
life (Bravo et al., 2016).
The designation of a healthcare proxy allows someone else to make decisions on behalf of the
older adult if they are unable to speak for themselves. Typically, the proxy is a family member caregiver,
such as a spouse, child, or other relative of the older adult’s choosing. These caregivers are tasked with
making specific healthcare decisions at the end of life based on the wishes expressed during the advance
care planning process. Because of this, the decisions of the older adult and their caregivers are
interconnected, and the older adult and their caregivers are frequently viewed as an interconnected dyad
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(Bravo et al., 2018, Wolff et al., 2021). Understanding the research available about advance care planning
is essential to improving end-of-life outcomes for the older adult.
Body of Review
A review of the literature was conducted to examine the available research about advance care
planning interventions for the older adult and their family caregivers. The available literature was
organized into three categories; advance care planning interventions for the older adult, the older adult
and caregiver dyad, and advance care planning interventions for caregivers. The literature highlights the
relevance of all three of these categories in the advance care planning process.
Advance Care Planning Interventions for the Older Adult
The existing literature highlights the efficacy of a variety of advance care planning interventions
for the older adult. Despite the benefits, barriers exist that prevent older adults from fully participating in
advance care planning. One significant barrier to advance care planning is a knowledge deficit among
older adults, and this deficit is greater among older adults of lower socioeconomic status (Wolff et al.,
2021; Tripken et al., 2018). Additional barriers include inadequate access to planning resources,
misconceptions regarding end-of-life options, and fear of negative emotions surrounding the advance care
planning process (Tripken et al., 2018; Tay et al., 2020).
A variety of intervention types have been tested, including conversation card games (Banner et
al., 2019; Eneslätt et al., 2021; Van Scoy et al., 2017), interviews (Wright et al., 2008, Banner et al.,
2019), and in-person informational sessions using various educational tools (Wolff et al, 2021; Bravo et
al., 2016; Huang et al., 2020). All these intervention types are shown to be effective in improving the
older adult’s knowledge and understanding of the advance care planning process while reducing
misconceptions and negative emotions. Additionally, older adults who participate in advance care
planning interventions are significantly more likely to put their advance care plan in writing following an
intervention (Chiu wu et al., 2021; Wolff et al., 2021; Van Scoy et al, 2017).
The Older Adult and Caregiver Dyad
The literature shows a strong connection between the older adult and the caregiver as a dyad. The
older adult puts their trust in their caregiver when designating them as a proxy; the caregiver is
responsible for honoring the older adult’s wishes if they cannot make decisions for themselves at the end
of life (Bravo et al., 2018; Huang et al., 2020). Because of this interdependent relationship, older adults
and caregivers should engage in shared decision-making when developing an advance care plan. This is
particularly important for older adults with conditions that anticipate cognitive decline, such as dementia,
other cognitive impairments, and advanced stages of cancer (Huang et al., 2020, Wolff et al., 2021;
Wright et al., 2008). Early advance care planning allows for older adults to share their wishes with their
caregivers and put their wishes in writing before their disease progresses (Wolff et al., 2021).
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The literature has established that advance care planning can prevent unnecessary discomfort and
medical intervention at the end of life. Despite this, both older adults and caregivers face barriers that
interfere with the advance care planning process. End-of-life discussions can result in negative emotions
for both the older adult and the caregiver, which can be distressing (Tay et al., 2021, Bravo et al., 2016).
Discussions may also be hindered by the older adult’s fear of being a burden or by cultural concerns
(Bravo et al., 2018, Huang et al., 2020). A common theme identified in the literature is concern that
caregivers will not agree with the older adult’s end-of-life decisions. A quote from an older adult in
Banner et al. (2019) states, “I don’t think they [caregivers] agree with some of the decisions I’ve made …
they appreciate who I am, but I do worry that it could be hard for them to carry out those wishes…”
Another common theme is the assumption that caregivers already know the older adult’s wishes.
Many older adults included in the research expressed their confidence in the decision-making ability of
their caregivers (Bravo et al., 2016; Tay et al., 2021). In Bravo et al. (2016), 59% of older adults at
baseline expressed high levels of confidence in their caregiver’s ability to make decisions on their behalf.
Quotes from participants in Tay et al. (2021) include “We’ve been married long enough that we can
pretty much know what each other needs and wants or our needs and our wants and so we trust one
another to make the right decisions” and “I trust you completely. You would follow my wishes”. Despite
this confidence in caregiver decision-making ability, the research shows caregivers do not consistently
make decisions that align with the wishes of the older adult. Caregivers tend to overestimate the older
adult’s desire for treatment, leading to more invasive medical interventions and discomfort at the end of
life (Bravo et al., 2016).
Advance Care Planning Interventions for Caregivers
Due to the identified barriers of the older adult/caregiver dyad, the literature explores the efficacy
of caregiver interventions to improve involvement in advance care planning. In studies involving
caregivers, interventions were not conducted independently. Caregivers participated in interventions
alongside older adult interventions. Caregivers and older adults participated in the same interventions
together, and intervention types included conversation card games (Van Scoy et al., 2017), group
educational sessions (Bravo et al., 2016, Bravo et al., 2018), interviews/facilitated discussions conducted
by nurses or social workers (Tay et al., 2020; Tay et al., 2021; Wolff et al., 2021; Wright et al., 2008;
Huang et al., 2020), and written materials (Wolff et al., 2021; Huang et al., 2020).
Although interventions are shown to improve the older adult’s understanding and implementation
of advance care planning, caregiver efficacy is mixed. Following intervention, caregivers have a reduction
in negative attitude and feel more confident and comfortable engaging in advance care planning
conversations (Bravo et al., 2018, Van Scoy et al., 2017; Huang et al., 2020; Wolff et al., 2021).
Caregivers also express greater knowledge and understanding of the end-of-life process and available
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resources after an intervention (Huang et al., 2020; Van Scoy et al., 2017). Interventions can also reduce
decisional conflict between the older adult and their caregiver (Bravo et al., 2018; Tay et al., 2020).
Although interventions can lead to positive results among caregivers, there are some areas where
interventions have not been shown to be effective. Participation in advance care planning interventions
does not improve the caregiver’s ability to accurately make proxy decisions that reflect older adult’s
wishes (Bravo et al., 2016, Bravo et al., 2018). Further, some caregivers report feeling distracted by
thoughts of their own mortality and wishes at the end-of-life during the intervention, rather than the
wishes of the person they care for (Van Scoy et al., 2017, Tay et al., 2020).
Discussion
The link between older adults and their caregivers in the advance care planning process is well-
established by research. In interventional studies conducted by Bravo et al. (2018) and Huang et al.
(2020), participants showed improvement in both end-of-life knowledge and in development of an
advance care plan following the intervention. This indicates interventions can improve advance care
planning behaviors in older adults. Improvement in advance care planning behaviors was seen across
multiple types of interventions, including card games, interviews, educational sessions, and use of written
materials (Bravo et al., 2018; Huang et al., 2020; Van Scoy et al., 2017). Bravo et al. (2018) showed that
confidence in caregiver decision-making by both the patient and caregiver increased following the
intervention. Tripken et al. (2018) conducted a correlational study, which showed socioeconomic status
can play a significant role in knowledge about advance care planning and preparedness for end-of-life
care. Those with low incomes may have greater knowledge deficits that should be addressed.
Several studies used a mixed-method approach, showing both quantitative and qualitative data
(Van Scoy et al., 2017; Eneslätt et al., 2021; Wright et al., 2008; Banner et al., 2019). The mixed-method
approach allowed for analysis of the quantitative data as well as insights into the thoughts and feelings of
both older adults and their caregivers. The research conducted by Tay et al. (2020 & 2021) gives further
insight into participants’ emotions using a qualitative design. Common themes seen in the qualitative
literature include increased compassion for each other and confidence in each other (Tay et al., 2020; Tay
et al., 2021; Wright et al., 2008). Another common theme was avoiding important conversations due to
fear of negative emotions (Tay et al., 2021; Banner et al., 2019).
One significant finding in several studies was that interventions were not as effective for
caregivers as for older adults making decisions for themselves (Bravo et al., 2016; Bravo et al., 2018; Van
Scoy et al., 2017). Interventions were not effective in helping caregivers make predictive decisions that
align with the decisions of the older adult’s advance care plan.
The overall quality of the studies on this topic could be improved. Across all the research, the
study sizes were relatively small and focused on individual communities, which makes data less
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generalizable. The studies were most frequently conducted in communities in the United States (Tay et
al., 2020; Tay et al., 2021; Van Scoy et al., 2017; Tripken et al., 2018; Wright et al., 2008; Wolff et al.,
2021), followed by Canada (Banner et al., 2019; Bravo et al., 2016; Bravo et al., 2018), Taiwan (Chiu wu
et al., 2020; Huang et al., 2020), and Sweden (Eneslätt et al., 2021). Although findings were similar
among the different studies, the results may not be generalizable to all communities and cultures. Further,
only studies conducted by Chiu wu et al. (2020) and Banner et al. (2016 & 2018) included a control arm
in the study.
Conclusion and Recommendations
Based on the body of evidence, further research is needed to identify more effective interventions
for advance care planning among older adults and their caregivers within the community. Overall,
interventions had a positive benefit among the older adult population; this was seen in the development of
advance care plans following intervention and increased knowledge and comfort in engagement with
advance care planning behaviors. Further research on these interventions should be conducted to include
larger sample sizes and control groups so that data can be more generalizable. Further research is also
needed to evaluate variation in intervention effectiveness based on socioeconomic status due to the
identified disparity of advance care planning knowledge among older adults of lower socioeconomic
status.
Further research is also warranted to identify interventions that are effective in aligning caregiver
decision-making with the older adult’s advance care desires. Although the interventions improved the
older adult’s confidence in their caregiver’s ability to make decisions, caregivers were unable to
accurately predict the desires of the older adult and opted for more invasive treatment options than the
preferences expressed by the older adult. Further research is needed in this area to identify interventions
that improve the accuracy of caregiver decision making.
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Figure 1
PRISMA 2020 Flow Diagram