End-of-Life Care Planning in Diverse Individuals Across Age Groups

Abstract

Background:

End-of-life planning helps nurses meet the needs of their patients at a crucial time of life.

Purpose:

This article presents a conceptual model of end-of-life care planning for nurses, especially those in palliative and hospice care, focusing on holistic nursing views.

Methods:

Based on a literature review, we developed a new conceptual model illustrating the concepts and dimensions of end-of-life care planning among diverse individuals across countries, life spans and age groups, ethnographies, and residential statuses.

Results:

This conceptual model includes 3 concepts: personal factors, stakeholders, and environmental and social factors. Each concept encompasses multiple dimensions. The concepts are interrelated and directly related to end-of-life care planning.

Conclusion:

This work addresses the need for a comprehensive end-of-life care planning model and can help enhance the quality of end-of-life care. This article identifies implications for nursing education, practice, and research.

End-of-life care planning, also known as advance care planning (ACP), is an opportunity for individuals to prepare for medical decision making in the last stages of life.1,2 End-of-life planning provides people with tools to manage their health care decisions when they cannot do so themselves. Research reports indicate positive impacts of end-of-life care planning, such as higher utilization of supportive care, which can improve patients' and family caregivers' satisfaction with care and decrease their distress and grief.3–5 Unplanned end-of-life care can leave family members and caregivers with the burden of last-minute decisions, often with no or little knowledge of the patient's desires. There are debates in the medical literature regarding the failure of ACP in modifying the type of medical interventions and reducing medical expenditures.6 However, in challenging conditions, end-of-life care planning and discussions can help patients, their families, and providers understand the prognosis and reflect on their hopes, priorities, and treatment preferences to choose a transition to comfort care or medical interventions.4,7,8 In addition, public concerns regarding people, such as Terri Schiavo, who spent years in a vegetative state before death,9 have augmented discussions about the advantages of ACP. End-of-life care planning can improve person-centered and value-based decision making,1,2,7 which are imperative to improve the quality of palliative and hospice care.

End-of-life care planning is a complex concept usually intertwined with socioeconomic status (eg, age, race/ethnicity, geographic location), nature of the illness, health system, caregiver, family, and community.4,5,10,11 These factors can influence a person's willingness to engage in end-of-life care planning both directly and indirectly.10 Based on a review of current literature, we propose a conceptual model for end-of-life care planning that applies to diverse populations and across countries and life spans. Current literature verifies the variety and complexity of factors involved with end-of-life care planning and describes a need to explain factors related to this concept.4,5

In this article, we describe the conceptual model of End-of-Life Care Planning (EOLCP), its concepts and propositions, and identify the implications of the model for nursing research, education, and practice. Conceptual models are structured by abstract and general concepts and include propositions. Propositions describe the concepts, explain relationships between concepts, improve understanding of the concept, and provide a framework for reflection, observation, and interpretation.12 The EOLCP aims to guide nursing research, education, and practice regarding the quality of care especially in palliative and hospice care.

DEFINITION OF END-OF-LIFE CARE PLANNING

End-of-life care planning refers to an ongoing process of care planning for terminal conditions. It includes formal documents and verbal discussions. Advance care planning is “a process that supports adults at any age or stage of health in understanding and sharing their values, life goals, and preferences regarding future medical care.”1^(p14) This definition reflects ongoing, individualized support and preparation for communication and in-the-moment decision making.2 However, this definition focuses on “medical treatments” and lacks holistic views of caring, which is the primary focus of nursing. The EOLCP addresses all aspects of care, such as the importance of spirituality and value systems, and the quality of life and the end of life for the person and how that may affect significant others.

Theoretical framework

The theoretical framework for the present work is the Peaceful End-of-Life Theory.13 Its focus is the family unit, which consists of the patient and others involved in end-of-life care.13 This theory addresses the nursing interventions that enhance positive outcomes for patients with terminal illnesses: relieving pain; providing emotional support; improving patient comfort, dignity, and respect; being at peace; and being with loved ones at the end of life. Dignity and respect are defined as meeting the person's expressed needs and preferences.13

The EOLCP addresses individuals with different health statuses, from healthy to serious advanced illnesses. For this model, end-of-life care planning is defined as all types of formal/written and informal/verbal methods of end-of-life care planning. Relevant literature uses both terms, end-of-life care planning and ACP, to describe measures of planning for the end of life. We use these terms interchangeably.

REVIEW OF LITERATURE

The literature review included research across the life span, from high- to low-resource countries and those with varied political and health systems. Key words and subject headings were used: end-of-life care planning, advance directive, ACP, care preferences, and decision making. Studies published in nursing and nonnursing journals were retrieved from CINAHL, Web of Science, PubMed, and PsycINFO. Searches were filtered to studies written in English and published in a peer-reviewed journal between 2016 and 2022 to include more recent publications. Studies that addressed factors related to end-of-life care planning in their results were included. A total of 599 citations were retrieved, of which 356 were duplicates (Figure 1). We reviewed the titles and abstracts of 243 studies to determine whether they addressed vital components and factors related to end-of-life care planning. From these studies, 76 were selected, and 11 additional ones were included on the basis of a review of reference lists. From 87 research reports that were evaluated, 73 studies were not relevant for the purpose of this study as they did not address factors involved with end-of-life care planning. A final group of 12 studies was selected. Two studies14,15 were combined in our report as they came from a single research project (see Supplemental Digital Content Table 1, available at: http://links.lww.com/JNCQ/B93). Studies in diverse populations by seeking research across populations with different ages, rural and urban settings, and countries beyond the United States were selected.10,16–21

Figure 1.

Flow diagram of study selection.

Reviewed studies

The review includes studies from Europe, Asia, and North America with representation from rural and urban settings and participants in different age groups. Studies in the United States sampled immigrant populations from different regions, such as the Middle East, the Caribbean, and Central and South America. In this section, we categorized the findings of the reviewed studies based on their participants' characteristics, such as their age and role in end-of-life care. Supplemental Digital Content Table 1, available at: http://links.lww.com/JNCQ/B93, summarizes the reviewed studies.

Reviewed studies indicated that it would be challenging to involve children and adolescents in end-of-life care planning and equally challenging to plan for end-of-life care for newborns.18,21 Hein et al21 identified components of pediatric ACP through direct discussions with bereaved parents, health care providers, and members of care networks. These components included discussions, documentation, implementation, timing, and participation of children and adolescents. Participants indicated that parents need to engage in discussions with persons of trust. Barriers to implementation included stakeholders' emotional status, conflicts between parents and professionals, and difficulties with emergency medical services. For discussion timing, parental readiness was crucial. Piette et al18 identified barriers and catalysts experienced by parents in making end-of-life decisions for infants, including clinical knowledge and prognosis, information quality, emotional regulation, and psychosocial environment. The catalysts included knowing whether the prognosis causes long-term poor quality of life, knowing all possible treatment options, receiving information according to health literacy level, being able to control intense emotions, and having counseling and support. The main barriers included a lack of general medical knowledge and being unprepared for a poor prognosis.

Two studies addressed young and middle-aged adults.16,22 Rahemi and Parker22 found that of 251 young and middle-aged Iranian-American adults, 57% preferred hospitalization and intensive care; 41% chose comfort care in a hypothetical incurable condition. Those who preferred comfort care mostly preferred care at home compared with institutions. Those who chose hospitalization mostly preferred intensive and curative treatments. Attitudes were positively associated with acculturation, age, and duration of living in the United States and negatively associated with spirituality. Knowledge about ACP was significantly low. In Croatia, another study on adults, Borovecki et al16 found that of 1203 participants, 38.1% favored withholding and 37.8% favored withdrawing life-prolonging treatments, and 77% indicated that the procedures should be regulated by law because of a concern about abuse. Younger and middle-aged respondents with higher levels of education, living in large cities, and with a more liberal worldview were more likely to favor euthanasia than others. Assisted suicide was not an acceptable practice. About 52% reported that they would support the dying person's autonomous decisions.

In 5 additional studies, the primary focus was on older adults.5,14,15,17,23 In a survey of ACP preference in Hong Kong, the results showed that of 282 older adult respondents, only 17% preferred ACP, even after receiving relevant information. The participants were more likely to trust physicians rather than family. Younger people in the sample (55-69 years of age) and participants with no major chronic illnesses were more likely to engage in ACP.17 In South Korea, Kim et al23 studied end-of-life planning across the dementia trajectory (mild to advanced stages). For persons with mild dementia, interventions consisted of documentation of discussions focused on participants with dementia sharing their preferences while the surrogates' role was to listen. In advanced dementia, interventions were structured discussions, often using educational materials with follow-up interactions to help surrogates make informed, shared decisions to promote quality end-of-life care for persons with dementia.23 In a systematic review, factors related to differences in end-of-life care preferences and planning between the general population and multiple ethnically diverse older adults were identified.5 Significant factors related to differences in end-of-life care preferences and planning across the populations were age, gender, education, knowledge, technological resources, spiritual beliefs, health status, personal experience with the death of significant others, and prior belief and communication about end-of-life care. A younger age, a higher level of education, and multiple chronic conditions were predictors of end-of-life discussion across racial/ethnic groups. Certain factors were unique to culturally diverse groups: (a) race, ethnicity, and immigrant status; (b) family network; (c) mistrust of the health care setting; (d) acceptance of death; and (e) acculturation and language barriers.5 In a study of attitudes toward advance decision making and end-of-life preferences for home and hospital care in Iranian-American older adults (n = 135), half of the participants had expressed their wishes for end-of-life care via written documentation and verbal discussions.14,15 About 84.8% preferred hospital-based care, while the remaining participants preferred home-based care. Predictors of home care preferences were a higher level of social support and number of cohabitants. Positive attitudes and the experience of a loved one's death were predictors of higher levels of end-of-life care communication. The stronger the level of spiritual belief, the more likely it was that an individual would have a negative attitude toward advance decision making.

Two more studies addressed the views of other stakeholders involved in end-of-life care.19,20 Fu and Glasdam19 studied the understanding of “good death” among authorities, professionals, patients, and relatives in end-of-life care settings in China. A good death was understood as a painless and symptom-free experience for patients and experiencing dignity and shared decision making. The participants' understanding of the good death and communication about death was influenced by 2 perspectives: traditional Chinese philosophy and contemporary western medicine practice. Understanding the good death was related to spiritual beliefs, such as preparation for death and the afterlife, and social and financial issues.19 Tuesen et al20 explored patients' and physicians' perspectives about conversations for life-sustaining treatment based on the Danish version of the American Physician Orders for Life-Sustaining Treatment (POLST). The interviews indicated that the conversation could be influenced by patients' knowledge, needs, and medical requirements. Family members were considered vital in ensuring the understanding of treatments and advocating for the patient. Most participants reported that the conversation could enhance patient autonomy. However, the timing of the conversation for shared decision making was reported as the main challenge.

Nelson-Brantley et al10 analyzed the literature on ACP in primary care, focusing on implications for rural settings. Four steps to ACP were identified: identification, conversation, documentation, and follow-up. Determinants in the identification step included behavioral regulation (eg, electronic reminders for patients); in initiating conversations, professionals' role and identity, environmental context and resources, and emotion; and in the documentation step, environmental context and resources. Smaller health care networks, adjustable professional roles, trusted relationships, and close community ties might be essential for ACP in rural primary care settings.

Synthesis of the findings

In the review of studies, we found that various factors were associated with end-of-life care planning and preferences and the use of end-of-life care services. These included personal factors (sociodemographic, health, health literacy, cultural factors, belief systems, acculturation, and emotional regulation), family and home (number of cohabitants, support, and potential burdens to family), health care system and providers (trust or distrust and providers' knowledge and attitudes), community and environment (social support and network), insurance coverage, the role of a person in planning, and ACP methods. For example, older adults from racial minority populations are more likely to spend the last days of life at hospitals and undergo intensive interventions, creating financial burdens for families and the health care system.

Across the globe, particularly in countries with aging populations, consumers, professionals, and governmental agencies recognize the importance of end-of-life care planning. The growing number of older adults living longer augments a need for medical interventions and methods to express personal values. Technological advances lead to demands for end-of-life interventions from neonatal to adult care settings. The EOLCP Model can help structure who, what, where, when, and how to design interventions and discussions, documentation of preferences, and follow-up interactions to ensure a peaceful, planned, and dignified end-of-life experience.

THE CONCEPTUAL MODEL

As described in this section, end-of-life care planning is complex and intertwined with multiple concepts and dimensions.5 To explain these concepts and dimensions—and the relations between them—we need a conceptual framework for end-of-life care planning. The EOLCP emphasizes the centrality of nurses in end-of-life care planning while acknowledging the role of other health care professionals, families, and providers.

Concepts

Our literature review demonstrates that end-of-life care planning is intertwined with multiple factors. To identify the EOLCP's concepts, 3 overarching factors related to planning were identified: (1) personal factors, (2) stakeholders, and (3) environmental and social factors (see Supplemental Digital Content Table 2, available at: http://links.lww.com/JNCQ/B94). Each factor is multidimensional. Personal factors include sociodemographic characteristics and living environment5,16,19,22; culture, acculturation, and language5,14,22; value systems, lifeways, and attitudes and mindsets5,14–16,19,22; autonomy and dignity16,20; knowledge, awareness, and health literacy5,18,20,21,23; life stories and experiences5,14,15; emotional regulation and psychological conditions10,18,21; health-related factors5; timing and readiness18,20,21; and prognosis and needs.18,20 Stakeholders are persons/patients, family/surrogates,5,20 communities,10 clinicians/providers, health systems,16,17 policy makers, and researchers. Environmental and social factors include social networks and support,5,10,14,15,18 caregivers and roles,10,17,20,21,23 environmental contexts and resources,10,18,21 health care setting, network and trust,5,10,17,20 technological factors and contemporary western medicine practice,5,19 involvement, and conflicts of stakeholders and shared decision making19,21,23 (see Supplemental Digital Content Table 2, available at: http://links.lww.com/JNCQ/B94).

Propositions

The definitions and dimensions for EOLCP concepts are included in Supplemental Digital Content Table 2, available at: http://links.lww.com/JNCQ/B94. To develop the model, we need to define its propositions, which make clear the concepts (3 overarching factors) and their relationships.12 The EOLCP model's proposition indicates that personal factors, environmental and social factors, and stakeholders are (1) interrelated and (2) related to end-of-life care planning (Figure 2). Based on the Peaceful End-of-Life Theory13 and the review of literature, these relationships are essential for being prepared for undesirable, impeding conditions, reaching control and fulfillment even with illnesses and frailty, and experiencing connectedness to loved ones and the community.

Figure 2.

End-of-Life Care Planning (EOLCP) model.

DISCUSSION

Based on EOLCP, health care professionals and policy makers can allow other care stakeholders to participate in care planning compatible with their values and goals. In unplanned end-of-life care, the person is vulnerable to losing dignity and autonomy. To avoid this vulnerability, the person should have the opportunity to become more than a passive recipient of care.24 This conceptual model informs the modification of available care planning models, such as advance directives and American Physician Orders for Life-Sustaining Treatment, to improve person-centered and culturally congruent end-of-life care.

Implications for nursing education

As the population ages and medical interventions and options improve, end-of-life care decisions will be increasingly important for care providers and stakeholders. Nursing students should be supported in learning the critical role and responsibility they have in providing culturally responsive end-of-life care. This includes participating in the planning, developing, and delivering evidence-based educational programs and activities that increase their own and others' awareness. Students can also grow in understanding the political process involved and become engaged in creating policies or that advocate for culturally appropriate end-of-life planning and care. The content of the EOLCP and its implications can be offered in nursing courses, especially gerontological nursing, as a learning strategy to facilitate learning regarding end-of-life care.

Implications for nursing practice

Multiple sources of oppression can hinder practice changes, including mandated government and insurance policy regulations, opposition from other provider groups, and employers and institutional requirements.25 These barriers often discourage nurses from seeking solutions to the health care system's problems. Politics are important in the scope of practice as they regulate licensing procedures, design reimbursement structures, and allocate funding for health care services.25 However, nurses are well positioned to initiate and lead proactive conversations with patients and families regarding end-of-life planning within the scope of their authority. Nurse-led end-of-life care practices can be designed to create shared decision making among the care stakeholders and provide personalized, patient-centered, and culturally sensitive end-of-life care.

Implications for nursing research

The EOLCP can be used in research with different methodologies: in qualitative research to expand the understanding of the EOLCP concept and its meaning; in quantitative research to develop or improve instruments related to the EOLCP concept; and in concept analysis to articulate a more comprehensive definition of EOLCP concepts toward a caring model or theory development. The EOLCP can be a valuable guide to studying health disparity in end-of-life care and culturally appropriate designs of care planning. In this conceptual model, the personal and environmental factors have been considered important elements of end-of-life care planning. Nurse researchers who specialize in end-of-life care can incorporate EOLCP model concepts in their studies to generate new knowledge and disseminate their work.

Limitations and strengths of the model

Conceptual models are formed using abstract and general concepts and propositions and cannot be directly tested. However, conceptual models are frameworks for generating new theories and testing existing theories.25 We proposed EOLCP as a nursing research, practice, and education guide. This model addresses the gap in existing end-of-life theories and concepts as it is developed to emphasize personalized applications for diverse groups and individuals. The EOLCP expands the understanding of end-of-life planning from focusing only on medical treatments in terminal stages of adults' life to broader life spans and emphasizes holistic nursing views to ensure a peaceful, planned, and dignified end-of-life experience for diverse individuals. The development of the EOLCP is based on literature across countries and life spans, and the EOLCP can be applied to different populations. As most reviewed studies were conducted in the United States, further research is needed to evaluate the utility of the EOLCP in diverse populations and health care settings. Definitions of the factors and dimensions require further elaboration and critical examination. For example, the use of technology, which is progressively an essential aspect of care, was not adequately addressed in the literature and needs further investigation. A comprehensive theoretical formulation of the model should be developed and tested, and implications of the model should be specified for nursing practice, administration, policy, education, and research.

CONCLUSION

The end-of-life care field needs a shift to culturally appropriate and multifaceted planning designs via collaborations between different stakeholders involved in end-of-life care. This shift requires modifications to educational programs, a collaboration between multiple disciplines, professions, and institutions, as well as improvements in practice through research and political efforts. The EOLCP conceptual model can provide a guide and framework for nursing education, research, and practice in the field of end of life.

Supplementary Material

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