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J Korean Gerontol Nurs > Volume 26(4):2024 > Article
Lim and Song: The components of best nursing care for well-dying in people with dementia: A scoping review

Abstract

Purpose

The aim of this study was to review the best nursing care components for the well-dying of people with dementia.

Methods

The scoping review was conducted followed by The Joanna Briggs Institute’s scoping review guidance. The search terms were “dementia,” “well dying,” “end of life,” and “palliative care” in PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of science, Google Scholar, Research Information Service System (RISS), and DBpia until April 17, 2024. Inclusion criteria were 1) written in English or Korean; 2) focused on palliative care, end-of-life care, or well-dying for people with dementia; and 3) were available in full text. Thematic analysis was performed with the selected literature.

Results

Twenty-seven publications were included. The four main nursing care components and 16 sub-components of well-dying in people with dementia for healthcare providers and caregivers were identified. The four main nursing care components of well-dying in people with dementia for healthcare providers and caregivers were advance care planning, shared decision-making, providing preferred support, and utilizing advanced technology.

Conclusion

The four main nursing care components can be used to serve as a basis for future work on policy making or protocol development to improve the lives of people with dementia.

INTRODUCTION

According to the World Health Organization (WHO), dementia is the seventh leading primary cause of mortality globally, affecting more than 55 million people [1]. The European Association for Palliative Care (EAPC) has recognized the need of palliative care for people with dementia (PWD) [2], yet PWD overall receive poor quality care in the end-of-life (EOL) [3]. Reported problems are underdiagnosis, poor pain treatment, painful or unnecessary investigations, and inappropriate use of aggressive treatments [4]. Healthcare providers for PWD find it difficult to predict the progression of the disease [5] and face communication challenges due to their patients’ cognitive impairment, which makes it nearly impossible to engage in effective discussions about advance care planning (ACP). Therefore, it is more important for PWD and their caregivers to prepare for death.
Unfortunately, there tends to be a relative lack of such preparations in PWD [6]. Although palliative care should address physical, psychological, social, and spiritual requirements, research [7] shows that PWD often do not receive adequate EOL care before approaching death. Furthermore, appropriate hospice and palliative care services should be available to allow dignified deaths. However, while 46% of adults in Korea express a desire to use hospice and palliative care services, currently available services are insufficient to meet these needs [8]. Hence, there is a pressing need for more active societal discussions and agreements on how to fulfill the various requirements for EOL care for PWD. Some scoping reviews have been done for limited part of EOL care for PWD or in a specific country; decision-making process in PWD, traumatic brain injury and frailty [9], EOL care in rural areas [10], ACP [11], definition of good death [12], good EOL care in the UK [13]. Thus, there is a research need for comprehensive nursing care for the well-dying of PWD living in Korea.
According to statistics related to long-term care insurance in Korea, it can be inferred that the country’s culture favors home care over institutional care for PWD [14]. Many PWD do not receive proper palliative care, and the COVID-19 pandemic made it even more difficult to stay by PWD’s sides at the EOL as part of the effort to provide them a dignified death. Another factor is that no specific facility visit or staff standards for nursing homes have been elucidated in regard to EOL care, although it is being recommended that these facilities provide special rooms for such care [7]. As a result, even if PWD wish to pass away in a care facility, their families may face difficulties if the facility does not offer EOL services, requiring such residents to be moved to a hospital before dying. It should come as no surprise that many studies have shown that people prefer to die at home, a familiar place, rather than in a hospital [15]. Yet in 2021, 76.8% of older people over 65 in Korea died in healthcare facilities while only 15.2% died at home [16].
“Aging in place,” a currently popular term in gerontology, is defined as “remaining living in the community, with some level of independence, rather than in residential care” [3]. People prefer to age in place because it provides continuity in the sense of connection or attachment, the practical advantages of familiarity and security, and independent and autonomous living that can strengthen a person’s sense of identity [17]. Policymakers and healthcare providers prefer individuals to stay in their homes or communities for as long as possible to mitigate the expenses associated with institutional care [18]. Despite the wish to age in place, living at home can pose significant challenges for PWD. Practical problems preventing PWD from living at home include decreased self-reliance (e.g., the inability to conduct Activities of Daily Living or to plan and structure a day), safety-related problems (e.g., the improper use of electronic devices, wandering, or injuries from falling), and informal care/network-related problems (e.g., a high burden or absence of informal caregivers) [19]. Older persons who perceive death as near are less likely to make dwelling moves that require emotionally stressful, financially costly, energy and time-consuming preparatory activities and adaptation behaviors that they prefer to die in place as well [20].
Currently, laws in Korea cannot guarantee dignified death in a preferred place. Although the act on decisions on life-sustaining treatment for patients in hospice and palliative care at the EOL took effect on February 4, 2018, only 21.3% of both cancer and non-cancer patients had used hospice services by 2020 [21]. Furthermore, although a bill to mandate EOL rooms in long-term care hospitals was proposed in November 2018, it has still not been passed [22]. In Korea, the current system does not support home deaths, making it necessary to establish a system that allows comfortable dying at home with loved ones in a familiar and comforting environment. Although palliative care for PWD is scarcely provided and no protocols or guidelines for EOL care for PWD in Korea have been developed, many studies have recognized the need for palliative care for the dignified deaths of PWD.
Our study aimed to clarify of the current state of understanding regarding EOL care for PWD and provide a framework regarding future EOL care protocol development or policy making in Korea. Since the purpose of the study is to identify knowledge gaps, scope a body of literature, and clarify concepts, a scoping review is chosen as a study method [23].

METHODS

This study is a scoping review focused on the nursing care practice components for healthcare providers and caregivers for the well-dying of PWD. The literature review process followed the research procedure outlined by Arksey and O’Malley [24], built on by Levac et al. [25], and later revised and updated by the Joanna Briggs Institute (JBI) template [26]. The five-step framework included the following: 1) identifying the research questions, 2) identifying the relevant studies, 3) selecting the studies to be included, 4) charting the collected data, and 5) collating, summarizing, and reporting the results. The outcomes of the review were documented following the guidelines of the Preferred Reporting Items for Systemic Reviews and Meta-analyses extension for Scoping Reviews (PRISMA-ScR) checklist [27].

1. Step One: Identifying the Research Questions

A scoping review can be useful in answering broad questions such as “What information is presented in the literature regarding the topic of interest?” It can be applied as preliminary research to collect and evaluate information before conducting a systematic literature review. To focus the literature review, research questions for the scoping review include the core components of Population-Concept-Context, with the aim of clarifying the focus. In this study, the Population (P) consists of healthcare professionals and caregivers caring for PWD, the Concept (C) is the provision of effective nursing care for the well-dying of PWD, and the Context (C) is defined as the specific settings of healthcare institutions and local communities. The research question is, “What are the components of best nursing care that are available for the well-dying of people with dementia?”

2. Step Two: Identifying the Relevant Studies

The databases PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, Google Scholar, Research Information Service System (RISS), and DBpia were searched. The key search terms were “dementia,” “well dying,” “end of life care,” and “palliative care.” Search strategies were tailored to individual databases, utilizing relevant subject headings and terms. The final searches were completed on April 17, 2024. Once the inclusion and exclusion criteria for each study were applied, and eligible studies were identified, a manual search of the reference lists of these studies was conducted to find any additional relevant studies. Additionally, we performed a “forward-search” on Google Scholar to discover pertinent studies referenced within the studies we included from our database searches. For a flow chart of study selection, please see Figure 1.

3. Step Three: Study Selection

Studies were included if they: 1) were in English or Korean; 2) focused on palliative care, EOL care, or well-dying for people with Alzheimer’s disease (AD) or other dementias; and 3) were available in full text. We excluded studies that: 1) were in a language other than English or Korean; 2) did not pertain to people with AD or other dementias; 3) did not pertain to palliative care, EOL care, or well-dying; 4) pertained to specific medical interventions; 5) pertained to symptom management; and 6) were not available in full text. The first author screened all records of title and abstract, followed by a screening of full text conducted independently by two authors. Any screening conflicts were resolved by discussion.

4. Step Four: Data Charting

All authors independently extracted key characteristics of the literature, including first author, year, country, study objective, study design, and key findings regarding dementia care for well-dying (Table 1).

5. Step Five: Collating, Summarizing, and Reporting the Results

Following the methodological framework of Arksey and O’Malley [24] revised by Levac et al. [25], this review integrated both numerical summary data and a thematic analysis. Included literature were collated by first author, year, country, study objective, study design, and key findings regarding dementia care for well-dying. A thematic analysis of the components of best nursing care practices for the well-dying of PWD was conducted. An inductive approach to thematic analysis was used to investigate for an iterative process for finding repeated patterns of components of best nursing care practices within the main findings of the research questions.

RESULTS

1. Characteristics of the Included Studies

The primary search returned 6,362 publications, 27 of which met the inclusion criteria and were reviewed (Figure 1). Most of the studies were conducted in the United Kingdom (n=13; 48.1%), followed by Australia (n=3; 11.1%), Netherlands (n=2; 7.4%), Ireland (n=2; 7.4%), Canada (n=2; 7.4%), Japan (n=2; 7.4%), Spain (n=1; 3.7%), Belgium (n=2; 7.4%), and the United States (n=2; 7.4%). The article types of the included articles include reviews (n=12; 44.4%), qualitative methods (n=11; 40.7%), a conference abstract (n=1; 3.7%), evidence synthesis (n=1; 3.7%), handbook (n=1; 3.7%), and Delphi study (n=1; 3.7%). As palliative care needs for PWD have been recognized recently, scoping reviews (n=5; 41.7%) comprised the majority of the review articles. Table 1 summarizes the descriptive information details of the included studies.

2. Nursing Care Components for the Well-Dying of PWD

The nursing care components and sub-components of well-dying in PWD for healthcare providers and caregivers are as follows (Table 2). Four main components and 16 sub-components were identified; the four main components were: 1) ACP, 2) shared decision-making (SDM), 3) providing preferred support, and 4) utilizing advanced technology.

1) ACP

According to a consensus paper from the EAPC, ACP refers to care planning that empowers individuals to articulate their goals and preferences for future medical treatment and care, engage in discussions about these goals and preferences with family and healthcare providers, and document and revisit these preferences as necessary [28]. Due to the terminal and neurodegenerative nature of dementia, it is important for PWD and their family caregivers to begin ACP while cognitive function is still intact.

(1) Timing of and parties involved in ACP initiation

Several articles reported on the timing of and parties involved in ACP initiation. Finding the right time for such discussions was troublesome; immediately after diagnosis was seen as too early, but other opportunities often did not occur until the PWD had become fairly severely impaired [29]. Others argued that the point of diagnosis is the right time to initiate ACP discussion, while some felt that a decrease in the patient’s general health status would be the right time to initiate ACP [30]. Determining the appropriate timing to initiate ACP was viewed as a delicate balance between an individual’s comprehension of the implications of a dementia diagnosis and the gradual decline in their capacity to make decisions [30].
There were also tensions over responsibilities for initiating ACP discussions. Healthcare professionals were identified as the most appropriate party to initiate ACP conversations, especially senior nurses, general practitioners, or service managers, all of whom had established relationships with the PWD and their caregivers and could employ an iterative approach to exploring preferences [29,30]. According to one study, there is no easy way to approach the topic, and a little by little process is usually best [29]. The involved health professionals have to build up to the conversation and support the family in talking to each other and in coming to some sort of agreement. Caregivers of PWD are also recognized as an appropriate party for initiating ACP conversations [29,30]. Discussion about the EOL were reported to be typically initiated with caregivers to clarify expectations, express their desired level of participation, specify the frequency and timing of updates, and review any existing EOL plans [29].

(2) Approaches and processes of ACP

Some studies suggested informal approaches to and simpler processes for ACP. Health professionals identified three domains for uncertainty: the legal status of ACPs, the usefulness of ACPs, and the implementation of ACPs [11]. Some professionals in one study expressed concern that ACP forms as merely a superficial “tick-box” exercise intended for use in care quality audits. These criticisms suggest a need to simplify and standardize ACP documents and to require greater clarity about individual responsibilities [11]. ACP typically includes written documents such as do not resuscitate (DNR) orders or enduring power of attorney (EPA). Evidence suggests that discussions about DNR orders may be postponed until it is too late for PWD to engage in decisions regarding resuscitation, resulting in health professionals inappropriately generalizing DNR orders to restrict other treatments [31]. As a more acceptable method for patients and their caregivers, the adoption of more informal approaches to ACPs was suggested [29].

(3) Involvement of PWD

Some of the included studies emphasized the involvement of PWD in decisions on ACP. One study suggested that ACP should involve the PWD and not just their family [2]. Another study proposed that families must make decisions for PWD based on the ordinary conversations that occur within families over the course of life [31]. Studies have demonstrated that PWD had often clearly expressed their preferences and wishes in everyday conversations within their families [31]. Such conversations were recognized and accepted as indications of what the PWD wished regarding the EOL and were assumed by family members to still be applicable [31]. When unexpected medical interventions were inevitable, families drew on their memories of earlier conversations and what they believed to be what the PWD would have wanted [31]. Thus, including the PWD was perceived as indispensable in ACP discussions.

(4) Special ACP training and education

Several studies recognized the need for special training and education for ACP. The most confident in initiating ACP were palliative care specialists and community nurses, while general practitioners and ambulance staff expressed more uncertainty [11]. Previous studies indicated that doctors in community settings required additional training regarding ACP in order to initiate discussions regarding them [11]. Core competencies, including good legal and ethical awareness, communication skills, and recognition of when ACP may be appropriate, can be integral components of initiating and completing ACP [11]. Not only PWD but also their caregivers recognized the need for additional or special training for staff providing EOL dementia care to ensure a good standard of care [32]. In terms of mental health approaches, needs for training, such as acquiring skills in communication and building therapeutic relationships, were pointed out. The inclusion of dementia trained nurses, specialist mental health nurses and the training of non-specialist nurses in aspects such as holistic care, patient dignity, responsive behavior, and peaceful death in EOL stewardship is suggested [33].

2) SDM

SDM is an approach in which healthcare providers and patients collaborate in making decisions using the best available evidence [34]. SDM respects patient autonomy that promotes patient engagement, encouraging patients to select the best course of treatment according to their preferences. Articles included in our study presented the decision-making process [7,9,35,36], parties involved in SDM [9,35], and person-centeredness [12,29,30,32,37-41].

(1) Decision-making process

Several articles mentioned what should be included in the decision-making process. According to one study, this process should include six specific areas: 1) management of difficulties with eating and swallowing, 2) management of comfort or agitation, 3) discontinuing life-sustaining medical treatment, 4) maintaining personhood, 5) providing routine care, and 6) communication between professionals [35]. Another study proposed that the decision-making process consists of seven interlinked stages: 1) identifying the decision maker, 2) exchanging and sharing information, 3) clarifying preferences and values, 4) considering and managing emotions, 5) evaluating the feasibility of options, 6) balancing preferred choices and the actual choice(s), and 7) implementing and reflecting on outcomes [10]. Another article presented three topics: 1) support with eating or feeding options, 2) place of care, and 3) goals of care [36]. Additionally, decisions regarding resuscitation, hospitalization, surgeries, feeding via nasogastric tube or gastrostomy, ventilation and drug therapies such as antibiotics, sedation, and euthanasia should be discussed [9]. The Interprofessional SDM model helps to simplify the complexity of decision-making and identify what support is needed for decision makers [7].

(2) Parties involved in SDM

A number of articles indicated who should be involved in SDM. One scoping review asserted that the decision-making process could take place dyadically with healthcare professionals and the family [9]. Dyadic conceptions frequently overlook PWD’s active contemporaneous involvement for practical reasons, such as complete patient incapacity or mortality [9]. Two studies affirmed that the decision-making process should include a triad involving the PWD, any family caregivers, and professionals from the involved healthcare systems [9,35]. Critical discussions among this triad of decision makers need to take place early while the PWD’s cognitive function is still intact.

(3) Person-centeredness

According to Brooker [42], person-centered care (PCC) values the person with dementia and their caregivers, regards PWD as unique persons rather than being solely defined by their diagnoses. It aims to comprehend the individual’s perspective and fosters positive social interactions to enhance their quality of life [42]. PCC is also one of the EAPC 11 domains of palliative care for dementia [32] and is one of the nine domains of a dementia-specific EOL model of care framework [40]. Many articles expressed the importance of person-centeredness in making shared decisions; person-centeredness was described as indispensable in planning future care for PWD [29,32,37-41]. In particular, person-centeredness was considered essential in communication [12,30,37,43]. The personalization of care expected in line with PCC had a positive impact on PWD and facilitated relationship building between decision-making triad members [37]. A primary focus of PCC has been promoting identity [37]. A good example of this is Namaste Care, which focuses attention on residents’ biographies and preferences [39]. Another study emphasized the need for person-centeredness in meeting emotional support needs [29]. Even so, because PCC at the EOL may involve interrupting routines and adapting flexibly to personalize experiences for PWDs and their families, some hospital cultures may undervalue PWD [38].

3) Providing Preferred Support

Considering the personal preferences of PWD and their families in providing EOL care is fundamental in well-dying. Notably, PWD’s preferences should take precedence over their family’s [7,44]. PWD’s personal preferences on spirituality/religion [44], types of care provided [4,7,10-12,29,30,32,33,38,40,41,44-46], types of activities [39], the place of care [47], and the place of death [13,43] should all be considered in providing best nursing practices in EOL care for PWD.

(1) PWD’s preferences over their family’s

Most importantly, PWD’s preferences should be prioritized over their family’s [44]. This is particularly important for good EOL because PWD frequently encounter challanges in maintaining autonomy as a result of cognitive decline. When PWD have limited capacity to express preferences, family members are often deemed best positioned to comprehend PWD’s preferences, and their preferences are often given priority [44]. This is why ACP initiation should happen before PWD’s decision–making capacity becomes diminished. One of the seven stages of decision-making processes include clarifying values and preferences [7].
One crucial factor to consider is that the openness and willingness to engage in ACP discussions can vary according to generational differences. For example, one study reported that an older caregiver felt their parents were reluctant to discuss death while a younger caregiver was much more pragmatic and open to discuss about what may happen in the future [7]. Additionally, Namaste Care emphasizes sensory stimulation and incorporates tailored activities that align with the preferences of PWD [39].

(2) Spirituality/religion

PWD’s spiritual and religious preferences should be respected and included in planning EOL care [44]. PWD feel a sense of peace, comfort, safety, and even pleasure when spiritual well-being is guaranteed [44].

(3) Types of care provided

Providing preferred support in types of care is mentioned in most of the articles. Future medical treatment and care should be provided based on the person’s wishes [7,10-12,29,30,32,33,38,40,41,44-46]. One study indicated that ACP is about goals and preferences for future care, future wishes, or EOL decisions [30]. In another study, numerous nurses have emphasized their practice of engaging in thorough discussions with PWD regarding these choices and considering the wishes of the PWD, despite their frequent perception of artificial nutrition and hydration as futile, and their preference not to see PWD from enduring such suffering [10]. Efficient management of hospitalizations for PWD involves preventing unnecessary admissions through suitable out-of-hours support and documenting their wishes and preferences [29]. Because the wishes and preferences of PWD and their families may differ, ACP can ensure that EOL care remains person-centered [41]. In National Health Service continuing care units in United Kingdom, some preferences were regularly discussed with caregivers and recorded at the point of admission, such as wishes regarding resuscitation or funeral arrangements [4]. While certain treatment determinations may not be feasible well in advance, there exists a distinct boundary between care environments that adopt a proactive stance toward EOL care as opposed to a reactive one. Part of the definition of a good death in one study was that PWD should be involved in decision-making about their treatment choices [12].

(4) Types of activities

Namaste Care includes meaningful activities involving all five senses and the customization of activities based on individual circumstances and preferences [39]. In Namaste Care, The staff offer a variety of activities for PWD, providing them with options in what they receive, as well as access to various forms of stimulation such as touch, auditory, olfactory, and visual stimuli. This facilitates staff in identifying activities that align with individual preferences and responses. For example, activities such as music enable PWD to develop moments of connection with a staff or family member or a memory [39]. Moreover, the utilization of a diverse range of activities enhances the staff’s capacity to address symptoms and behaviors in PWD, rather than focusing solely on individual activities [39].

(5) The place of care

Preferences for place of care for PWD should be respected [33]. All of the focus group participants in one study believed home to be the best place for EOL care [47]. Unsurprisingly, PWD prefer the place of care to be in familiar surroundings.

(6) The place of death

The preferred place of death should be also included in EOL care [13,43]. One study mentioned how important it was to arrange for a quiet and welcoming place where visitors could visit and pay their respects [47].

4) Utilizing Advanced Technology

Advanced technology can be utilized in providing healthcare in rural and remote areas [10], and integrated communication [48,49] can be employed for providing interdisciplinary healthcare and prognostication tools [40].

(1) Rural and remote areas

Various technology-assisted methods can be used not only to effectively meet the knowledge and information requirements related to dementia in rural and remote areas but also to bolster healthcare providers’ capacity for delivering improved care and to expand access for PWD to palliative or EOL care services and support [10]. In particular, remote technology allows those in rural areas to stay in their favored care setting. Telehealth or other videoconferencing methods can be used to provide specialist care, for example, electronic psychiatric consultations for staff and residents were found to allow for faster assessments, treatment reviews, and regular monitoring [10]. Providing specialized care in rural areas offers advantages such as more frequent follow-ups and enhanced provider capability in handling complex cases locally. This approach could potentially decrease hospitalizations and alleviate the burden of travel for both patients and their families [10].

(2) Integrated communication

According to one study, integrated communication tools such as Electronic Palliative Care Coordination Systems (EPaCCS) can be helpful for sharing preferences between hospitals and community clinicians [48]. For example, paramedics could access EPaCCS documents while in the field, empowering them to honor in-the-moment decisions made by surrogates to de-escalate treatments [48]. Similarly, protocolized “treatment escalation plans” and integrated communication tools support goal-concordant EOL care for older adults [48]. Clinical networks play a pivotal role in improving access to care for PWD in underserved communities [49], thereby ensuring that marginalized populations and those with poor outcomes have enhanced access to high-quality, clinically-effective health services [49].

(3) Prognostication tools

Prognostication tools such as the supportive palliative care indicators tool (SPICTTM) can be used to precisely recognize people in need of EOL care [40]. Nevertheless, tools that depend on a chronological disease progression are less applicable for individuals with advanced dementia. Recent research highlighting the inconsistency in defining EOL care in dementia advocates for transitioning from prognostication to a needs-based approach [40].

DISCUSSION

This study aimed to extract the components of best nursing care for the well-dying of PWD based on the results of a scoping review. In total, 27 publications representing the components of best nursing care practices for PWD’s well-dying were included. Due to cognitive decline, preparing for well-dying in PWD in advance was determined to be more significant.

1. ACP

Many studies acknowledged the benefits of having an advanced care plan in place. ACP is a way of improving autonomy and choice for PWD [11]. The presence of an advance directive correlated with a decreased likelihood of hospitalization and intensive care for both nursing home residents in rural and urban areas [10,41]. ACP has also been shown to improve EOL outcomes, including dying in the patient’s preferred place, increased satisfaction with care, and less physical and emotional distress [41]. Especially, advance directives in the USA, allowing PWD to express their desire to decline medical treatment, have been linked to decreased family stress [4].
Finding the right moment to initiate ACP is controversial. One study determined that the time of diagnosis is when to initiate ACP discussions; however, the author acknowledged this point in time could be a little too early [29]. Other studies chose a time when there was a decrease in the PWD’s general health status after enough time had passed to become familiar with the diagnosis and condition [30]. Most studies emphasized the consideration of PWD’s decision-making capacity at the time of initiating ACP. The studies chose two parties to be responsible for ACP initiation. The first party was healthcare professionals who have established relationships with PWD and their families. The other appropriate party was determined to be the caregivers of PWD who would clarify expectations, determine their desired level of engagement, frequency, and timing, as well as the review of existing EOL plans [29]. In terms of ACP approaches and processes, informal approaches were recommended. Health professionals requested clarity on ACP’s legal status, usefulness, and implementation [11]. Furthermore, EPA processes or DNR orders were said to require simplification, standardization, and greater clarity about individual responsibilities [11]. In discussing ACP, PWD should be involved, not just their families. Ordinary everyday conversations are highly valued because these are considered indications of what the wishes of PWD have been throughout their lives [31]. Many studies recognized the need for special ACP training and education to ensure good standard care for PWD’s well-dying. The government could mandate training for healthcare providers on how to initiate ACP discussions and let them actively exchange opinions about the timing of ACP initiation.
Despite the knowledge that advance directives may lead to a more positive attitude toward the discontinuation of life-sustaining treatment [50], the number of registered advance directives in 2021 was 1,161,794, accounting for only 2.66% of the population aged 19 and above in Korea [51]. It has been observed that decisions to discontinue life-sustaining treatment are much more often based on statements from the patient’s family (34.9%), guardianship and family consent forms (24.2%), or ACP documents (33.4%) than on advance directives (7.5%). In order to increase the completion of advance directives, the development of programs related to such documents and ACP in line with amendments to the Life-Sustaining Treatment Decision Act that target various age groups are considered necessary. Additionally, it is necessary to further expand the registration agencies for advance directives within local communities to improve accessibility for older adults.

2. SDM

The common topics in what should be included in the decision-making process were preferred support with feeding options and ending life-sustaining medical treatment. Regarding the parties involved in SDM, studies stated the decision-making process could take place either dyadically [9] or triadically [9,35]. Dyadic involvement was selected due to total patient incapacity or mortality. In other words, triads in the SDM are considered ideal if the PWD’s decision-making ability is still intact. Elwyn et al. [34] asserted that at least three conditions must be in place for SDM to integrate into mainstream clinical practice, which requires easy access to evidence-based information regarding treatment options, guidance on assessing the advantages and disadvantages of various choices, and a supportive clinical environment that fosters patient involvement. Providing PWD preferred treatment options is very much in line with person-centeredness.
SDM, involving physicians, patients, families, and decision support services, requires considerable time and reflection, as it is a process that can involve changes and withdrawals. In the actual medical field, multidisciplinary teams including physicians are often pressed for time due to busy schedules, resulting in very limited time for conversations with patients or caregivers. To enhance the quality of decision-making, in addition to the current designated fee, provisions should be made for unlimited SDM fees, aiding in the realization of the patient’s best interests and autonomy. Furthermore, establishing fees for multidisciplinary team counseling and support services linked to SDM could also contribute to enhancing the quality of communication in ACP. It is necessary to mandate medical professionals’ medical counseling skills, education, and training related to EOL decisions.

3. Providing Preferred Support

Providing preferred support is possibly a reflection of Atchley’s (1989) continuity theory [52] of normal aging. The theory posits that the past experiences, decisions, and behaviors of older adults serve as the basis for their current and future decisions and behaviors [52]. In order to prioritize PWD’s preferences over those of their families, planning for EOL care should take place before PWD’s cognitive function declines significantly. Although there are generational differences in the openness and willingness to engage in ACP discussions, including PWD’s preferences in planning EOL care is indispensable.
In total, 15 studies included in this review emphasized future medical care should be provided based on the individual’s wishes. Namaste Care provided activities adapted to individual circumstances and preferences [39]. In planning EOL care, PWD’s spiritual and religious preferences should be included [44]. The most preferred place of care for PWD was found to be the home [47]. Regarding the place of death, a quiet and welcoming location where visitors could come and pay their respects to PWD was considered important.

4. Utilizing Advanced Technology

Telehealth and videoconferencing methods can be used to deliver specialist care such as psychiatric consultations [10]. Utilizing advanced technology can not only provide access to EOL care in rural and remote areas but can also be an alternate means of non-face-to-face communication in pandemics such as the recent COVID-19 one. Decision-aid videos [10] can also be helpful in decision-making about EOL care, while integrated communication tools such as EPaCCS and prognostication tools such as SPICTTM can be used to provide better EOL care.
Some areas from the study findings can be applied to Korea. First, we could start casually mentioning ACP at the time of admission to a healthcare facility. Furthermore, the law could mandate that healthcare professionals initiate ACP discussions. In Korea, it is urgent to promote the necessity of having advance directives. It is essential to encourage citizens to reflect on their beliefs and values regarding their own death through advance directives. Additionally, policy research should focus on casually publicizing discussions about death across society and ensuring that the aggregated opinions are reflected in legislation. We also need an official protocol for the decision-making process. Family-centered culture in Korea has a tendency to have surrogate decision-making instead of SDM including PWD’s voices. It is necessary to make continuous efforts to implement and ensure a good death, as perceived by individuals, through social systems. Such efforts should involve the collaboration among researchers from various academic fields, as well as open-minded societal discussions at the academic and governmental levels, supported by relevant research. In developing EOL care protocols, we should include spiritual and religious preferences. Additionally, integrated communication tools could be very helpful in providing healthcare for PWD with impaired cognitive function.

LIMITATIONS

While the search strategy was deliberately broad, no limitations were imposed on publication year, the search was limited to studies published in the English or Korean languages. It is possible that some literature sources were missed and only 27 articles were included, which could restrict the generalizability of the findings. Another limitation is that stakeholder consultation is not included although it is not strictly required. Furthermore, no evaluation of the quality of peer-reviewed literature was undertaken, which aligns with the methodology typically used in scoping reviews. On the other hand, scoping review may be particularly relevant to disciplines with emerging evidence, such as well-dying of PWD, in which the paucity of randomized controlled trials makes it difficult for researchers to undertake systematic reviews. Our scoping review contains other scoping reviews due to this nature of the study method, however we tried to avoid potential duplication of original studies and perform thematic analysis among overlapping results of the components of best nursing care for the well-dying of PWD.

CONCLUSION

In summary, the literature integrated in this review offers insight and a comprehensive overview of the essential elements of best nursing care for PWD at the EOL. The following key components were identified: 1) ACP, 2) SDM, 3) providing preferred support, and 4) utilizing advanced technology. To the best of our knowledge, this is the first scoping review that has endeavored to investigate the components of best nursing care practices for PWD’s well-dying. We suggest including stakeholder consultation for future scoping reviews in order to include actual field experiences. The identification of these components can serve as the basis for future work on policymaking or protocol development to improve the lives of PWD; such further research is recommended. In making EOL care protocols, including these key components of best nursing care of PWD for well-dying could be promising.

NOTES

Authors' contribution
Study conception and design - SYL and JAS; Supervision - JAS; Data collection and processing - SYL; Analysis and interpretation of the data - SYL and JAS; Drafting and critical revision of the manuscript - SYL and JAS; Final approval- JAS
Conflict of interest
No existing or potential conflict of interest relevant to this article was reported.
Funding
None.
Data availability
Please contact the corresponding author for data availability.
Acknowledgements
None.

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Figure 1.
Flow diagram for study selection (PRISMA).
jkgn-2024-00479f1.jpg
Table 1.
Descriptive Information of the Included Studies
Study No. First author, year, country Study objective(s) Study design Key findings regarding dementia care for well-dying
9 Birchley, 2016, United Kingdom To better understand decision-making at the EOL for people with extreme frailty in old age, severe dementia and severe traumatic brain injury Scoping review The thematic synthesis identified three themes: the first concerned the processes of EOL decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalizing the antecedent decisions of patients.
48 Sun, 2022, United Kingdom To describe goal-concordant EoLC in older adults with ADRD Conference abstract Structured decision-making protocols and integrated communication tools facilitate goal-concordant EoLC for older adults with ADRD in the UK.
30 Wendrich-van Dael, 2020, Belgium To establish the strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia Evidence synthesis including systematic reviews and primary studies Views of ACP for PWD can be clustered around six themes; 1) timing and tailoring, 2) willingness to engage, 3) roles and responsibilities of HCP, 4) relationships, 5) training, and 6) resources needed.
45 Hashimie, 2020, United States To explore the best possible care at the EOL for patients with dementia Review The population with dementia will represent a group with specific EoLC needs that will require better access to hospice and palliative services.
10 Elliot, 2021, Canada To systematically review and synthesize the literature on palliative and EoLC for PWD living in rural areas Scoping review Five key themes emerged: 1) Knowledge about dementia; 2) Availability, accessibility, and utilization of palliative and EoLC services and supports; 3) Decision-making about care, the value of a person-centered approach and collaborative support; 4) Perspectives on artificial nutrition, hydration, and comfort care; and 5) Quality of life and death.
37 Tuijt, 2021, United Kingdom To identify and thematically synthesize the experiences of health care services reported by people living with dementia, their carers and HCP. Qualitative: thematic synthesis Six themes emerged related to the functioning of a dementia care triad: (1) involving the person living with dementia, (2) establishing expectations of care and the roles of the members of the triad, (3) building trust, (4) effective communication, (5) continuity of care, and (6) understanding the unique relationship dynamics within each triad.
11 Jones, 2019, United Kingdom To explore decisions associated with the EoLC of PWD Scoping review Our synthesis generated three main themes with a focus on decision-making and who is involved, systemic factors within and between various care agencies, and the ‘quality of death’ including the withdrawal of treatment or invasive procedures.
31 de Vries, 2019, United Kingdom To explore experiences of preparedness and support for family members of PWD, before, during and following the death Qualitative: open-ended interviews Family members may need to make decisions for the person with dementia based on ordinary everyday conversation that do take place within families and throughout life.
32 Poole, 2018, United Kingdom To compare the views of PWD and family carers of PWD (current and recently bereaved) on optimal EoLC Qualitative: interviews and focus group Our findings highlight seven aspects; (1) Being cared for ‘in place’; (2) Being comfortable at the EOL; (3) A skilled care team; (4) Making future plans: importance and value; (5) Faith in family members; (6) Trust in professionals; (7) Fitting care together: coordination and the role of families.
29 Bamford, 2018, United Kingdom To understand the factors that facilitate good EoLC in dementia in England from the perspectives of a range of stakeholders and direct observation of care Qualitative: semi-structured interviews, focus groups, discussions Seven key factors required for the delivery of good EoLC were identified: timely planning discussions; recognition of EOL and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalization; continuing care after death; and valuing staff and ongoing learning.
47 Van der Steen, 2017, Netherlands To understand what needs to be in place to develop optimal palliative care services for the terminal phase Qualitative: interviews and focus group A mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model.
33 Puente-Fernández, 2023, Spain To examine nursing professionals perceptions of the quality of dying among residents diagnosed with dementia Qualitative: semi-structured interviews Symptom management, quality of care, and EOL appearance were found to be adequate, while EOL communication was deemed insufficient.
44 Nishimura, 2022, Japan To conceptualize common cross-cultural themes regarding a good EOL in dementia Qualitative: interviews and focus group Three represent basic needs: pain and symptoms controlled, being provided basic care, and a place like home. Other themes were having preferences met, receiving respect as a person, care for caregivers, identity being preserved, being connected, and satisfaction with life and spiritual well-being.
35 Lamahewa, 2018, United Kingdom To explore difficulties in decision-making for practitioners and family carers at the EOL for PWD Qualitative: interviews and focus group Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the EOL.
36 Davies, 2019, United Kingdom To critically evaluate decision aids developed for practitioners and caregivers Systematic review Three topics across six decision aids: 1) support with eating/feeding options, 2) place of care, and 3) goals of care. Decision aids offer a promising approach for providing support for decision-making in dementia care.
38 Moon, 2022, Australia To examine perceptions of interpersonal care during EOL for PWD Qualitative An overarching theme of maintaining connections highlights the need to support patient and family bonds at EOL.
39 Bunn, 2018, United Kingdom To develop an explanatory account of how the Namaste Care intervention might work, on what outcomes, and in what circumstances Realist review Three context-mechanism-outcome configurations were identified: 1) providing structured access to social and physical stimulation, 2) equipping care home staff to cope effectively with complex behaviors and variable responses, 3) providing a framework for person-centered care.
43 Durepos, 2017, Canada To assess palliative care content in dementia CPGs to identify the presence or limitations of recommendations and discussion Systematic review Nine guidelines demonstrated the maximum level of content regarding physical, psychological, and social care. Conversely, spiritual care was either absent (three) or minimal (three) in CPGs. Six CPGs did not address loss or grief, and seven CPGs did not address or had minimal content regarding EoLC.
46 Dixon, 2018, United Kingdom To review empirical evidence concerning the effectiveness of ACP in improving EOL outcomes for PWD and their carers Systematic review ACP is likely to be relevant and applicable to PWD and that ACP may, in some circumstances, be associated with a range of positive EOL outcomes.
40 Lewis, 2023, Australia To identify best-practice models of care for people in the advanced and end stages of dementia, and their families and carers Rapid review The key issues that emerged from the findings were: referral and admission to care, integration of care, sustainability, and evaluation.
41 Timmons, 2023, Ireland To discuss the key issues in providing palliative care for PWD and their families Handbook The individual needs of the PWD and their family must be considered to provide person-centered and comprehensive palliative care.
12 Takahashi, 2021, Japan To establish agreed definition of a good death for PWD Scoping review Ten themes were identified: pain-free status, peaceful/comfort, dignity, family presence, surrounded by familiar things and people, person-centered communication, spirituality, life completion, treatment preferences.
13 O’Connor, 2022, Ireland To identify core components of extant models of palliative care for PWD and their families Scoping review While the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia.
49 Luckett, 2014, Australia To identify evidence-based models of palliative care to inform policy reform in Australia Rapid review Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers, skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time.
2 Van der Steen, 2014, Netherlands To define optimal palliative care in dementia Delphi study Eight domains identified: person-centered care, communication and shared decision-making; optimal treatment of symptoms and providing comfort; setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues.
4 Lawrence, 2011, United Kingdom To define good EoLC for PWD and identify how it can be delivered across care settings in the UK Qualitative: in-depth interviews For ‘dementia-proof’ EoLC for PWD: use knowledge of dementia to identify and respond to physical care needs; go beyond task-focused care; and prioritize planning and communication with the family.
7 Davies, 2021, United Kingdom Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia EoLC Qualitative: semi-structured interviews The model considers the contextual factors that influence the decision-making process, including: personal preferences; ACP and lasting power of attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles.

ACP=Advance care planning; CPG=Clinical practice guidelines; EOL=End-of-life; EoLC=End-of-life care; HCP=Health-care professionals; PWD=People with dementia.

Table 2.
Nursing Care Components of Well-Dying in PWD for Healthcare Providers and Caregivers
Main component Sub-component Nursing recommendations
Advance care planning (ACP) Timing and party of ACP initiation • Finding the right moment to initiate ACP as a balancing act between an individual’s understanding of the implications of a dementia diagnosis and their diminishing decision-making capacity [30].
• Healthcare professionals are consistently identified as the most appropriate party to initiate ACP conversations [29,30].
Approaches and processes of ACP • There is a need to simplify and standardize ACP documents and provide greater clarity about individual responsibilities [11].
• Adopting more informal approaches to ACP may be more acceptable to patients and carers [29].
Involvement of PWD • ACP should involve the PWD, not just their family [13].
• Families need to make decisions for PWD based on ordinary everyday conversation that do take place within families and throughout life [31].
Special ACP training and education • Education and training regarding core competencies including good communication skills, legal and ethical awareness, and recognition of when ACP may be appropriate can be an integral component of ACP [11].
• PWD and caregivers recognized that staff providing EOL dementia care should have additional or specialist training to ensure a good standard of care [32].
• Inclusion of specialist mental health or dementia trained nurses and training of non-specialist nurses in aspects such as dignity, holistic care, responsive behavior, and peaceful death in EOL is needed [33].
Shared decision-making (SDM) Decision-making process • Decision-making process should include these 6 specific areas: 1) management of difficulties with swallowing and eating, 2) management of agitation/comfort, 3) ending life sustaining medical treatment, 4) maintaining personhood, 5) providing routine care (i.e., personal care including washing, changing bed sheets and clothing), 6) communication between professionals [35].
• Decision-making process consists of seven interlinked stages: 1) identifying the decision maker or team, 2) sharing and exchanging information, 3) clarifying values and preferences, 4) managing and considering emotions, 5) considering the feasibility of options, 6) balancing preferred choice and the actual choice, 7) implementation and reflecting on outcomes [7].
• Decision aids covers 3 topics: 1) support with eating/feeding options, 2) place of care, and 3) goals of care [36].
• Decision regarding resuscitation, hospitalization, surgery, ventilation, feeding via nasogastric tube or gastrostomy, and drug therapies such as antibiotics and sedation, as well as euthanasia should be discussed [9].
Parties involved in SDM • Decision-making process could take place dyadically, with the family and the healthcare professionals [9].
• Decision-making process should include a triad involving the person with dementia, any family carers and professionals from the health and care systems [9,35].
Person-centeredness • Decision-making conversations should be held in a person-centered way, that meet people’s needs and protected their human rights [30,37,43].
• Namaste Care focuses attention on residents’ biography and preferences (person-centered care) [39].
Providing preferred support PWD’s preferences over family’s • One of seven stages of decision-making processes include clarifying values and preferences [7].
• The preference of the person should be prioritized over family preferences [44].
Spirituality/religion • PWD’s spiritual and religious preferences are respected and met [44].
Types of care provided • The care should be provided based on the person’s wishes [4,7,10-12,29,32,33,38,40,41,44-46].
• ACP enables individuals to define goals and preference for future medical treatment and care, to discuss these goals and preference with family and healthcare providers, and to record and review these preferences if appropriate [30].
Types of activities • Namaste Care is delivered, including meaningful activities involving all five senses and adaptation of activities to individual circumstances and preferences [39].
The place of care • The preferences for place of care for PWD should be respected [47].
The place of death • Preferred place of death should be included in EOL care [4,43].
Utilizing advanced technology Rural and remote areas • Various technology-assisted methods can be used to effectively address dementia knowledge and information needs in rural and remote areas and enhance the ability of healthcare providers to provide better care [10].
• Remote technology was presented as a potential means to increase access to palliative or EOL care services or supports for PWD, especially those in rural areas, which might allow them to remain in their preferred care setting [10].
• Telehealth and other videoconferencing methods can be used to deliver specialist care in rural areas such as psychiatric consultation for staff and residents allowed for quicker assessments, treatment review, and regular monitoring [10].
Integrated communication • Integrated communication tools such as EPaCCS can be helpful [48].
• The Interprofessional SDM model helps to break down the complexity of decision-making and clarify where and what support is needed for decision makers [7].
• Clinical networks facilitated access to care for people in underserved communities [49].
Prognostication tools • Prognostication tools such as the supportive palliative care indicators tool (SPICTTM) can be used to accurately identify people in need of EOL care [40].

EOL=End-of-life; EPaCCS=Electronic palliative care coordination system; PWD=People with dementia; SPICTTM=Supportive palliative care indicators tool.

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