Palliative Care: A Concept Analysis Review

Abstract

Introduction

Palliative care is critically important for the world’s aging population and can change illness trajectories and promote advances in health care technologies. As health care team members, nurses have the most contact with palliative care patients. However, misconceptions about which patients need to receive palliative care may be an obstacle to meeting patients’ needs for palliative care.

Objectives

This study aimed to describe preceding events, characteristics and outcomes of patients in palliative care according to current concept analysis studies.

Methods

A literature review was conducted. Inclusion criteria were: (1) concept analysis studies, (2) use of the term palliative care or palliative nursing care, (3) palliative care explanation including antecedents, attributes, and consequences, and (4) articles written in English published between 2004 and 2021.

Results

Four concept analysis studies on palliative care were included in this review. Palliative care was described as an approach to alleviating physical and psychological suffering and improving patients’ and families’ quality of life in the early stages of diagnosed illness. Terminal illnesses, acute or chronic diseases, and actual or potentially life-threatening illnesses were confirmed as the events preceding palliative care. Characteristics of palliative care include holistic care, interdisciplinary teamwork, and compassionate, patient- and family-centered care. Improved patient and family quality of life, enhanced human dignity, improved self-care, and strengthened coping abilities are outcomes of palliative care.

Conclusions/Implications for Practice

Palliative care is a concept that is related to the early stage of an illness, the timing of illness diagnosis, and the onset of symptoms. Including palliative care terms in nursing education and training and developing palliative care models in clinical practice are recommended to ensure nurses understand the services of the palliative care needs of patients and their families. Future reviews, including grounded qualitative studies on the concept of palliative care, are recommended.

Introduction

Palliative care interventions have increased worldwide. Studies have predicted the future global burden of serious health-related suffering will increase (Sleeman et al., 2019), 87% patients will need palliative care interventions by 2060 (Clark et al., 2020). Palliative care is critically important for the world's aging population and can change illness trajectories and promote advances in health care technologies (Cruz-Oliver, 2017). One study reported that palliative care is predicted to be utilized by 20 million people annually, of which 69% will be adults over 60 years old and 6% will be children (Connor & Sepulveda, 2018). To address the needs of a wide range of patients for whom the term “dying” is inappropriate yet require concerted effort to reduce the suffering they experience and improve their quality of life, palliative care is highly needed (Ferrell et al., 2017; Hawley, 2017; Krakauer et al., 2021). The three times at which palliative care is best implemented have been recommended, and they include the early stage of the illness, the time of the illness diagnosis, and the onset of symptoms (Howie & Peppercorn, 2013).

Studies have reported the most common interventionists who meet with palliative care patients are nurses, as a health care team members (Fliedner et al., 2021; Schroeder & Lorenz, 2018). Studies reported nurses, as health care team members, have the most contact with palliative care patients (Dobrina et al., 2014; Head et al., 2018; Hickman et al., 2020). Palliative care is a subspecialty in nursing practice that continues to evolve as the art and science of nursing evolves (Figueredo Borda et al., 2019).

Professional knowledge and person-oriented competence are highly intertwined in the palliative nurse's role (Filej et al., 2018; Sekse et al., 2018). However, many health care professionals have misconceptions about palliative care antecedents, attributes, and consequences, which may be an obstacle to assuring their patients’ needs for palliative care are identified and met in a timely fashion (Buss et al., 2017). In addition, the multidisciplinary palliative care approach requires gaining confidence in performing palliative care and the ability to explain palliative nurses’ role (Dobrina et al., 2014).

On the other hand, palliative care service needs are a dynamic concept that constantly changes following the initial stage of a patient's illness and family needs. Therefore, comprehension of the disease and evaluation of what constitutes quality of life and death for people with serious illnesses are needed (Cruz-Oliver, 2017). Evolution necessitates that every health professional understand the dramatic changes in the concept of palliative care (Ryan et al., 2020). Therefore, this paper presents a review and an update of the palliative care concept, including antecedents, attributes, and consequences, based on recent developments in this field, especially in the recent update on palliative care in concept analysis studies.

Research Design and Methods

As the researchers sought to identify gaps in knowledge and trends in a particular research area and to map the literature, the literature review method was considered suitable to meet this need (Kim et al., 2020). Therefore, the palliative nursing care concept of this review applied the classical stages by Arksey and O’Malley (Arksey & O’Malley, 2005; Peters et al., 2015a, 2015b) to understand palliative care, consisting of (1) identifying questions, (2) identifying relevant articles, (3) article selection, (4) data charting, and (5) discussion and conclusion.

Identifying the Research Question

The terms palliative care, hospice and end-of-life care are sometimes used interchangeably (Mollica et al., 2018); bearing some similarity, the concepts actually are not the same (Krau, 2016). Misconceptions about palliative care are due to the lack of understanding about palliative care, which is often confused with other terms possibly creating an obstacle to ensuring the care needs of patients. Health care providers often list palliative care as the last option after knowing that there is little hope of recovery or until all treatment options have been exhausted (Avanzato, 2017). Providing palliative care services require a clear comprehension of the current concept of palliative care. Therefore, clarification of the palliative care concept, including antecedents, attributes, and consequences, is needed.

Identifying Relevant Studies

Searching electronic databases

In January 2022, comprehensive searches were conducted in the PubMed, ProQuest, and Medline databases and grey literature was searched in Google Scholar to look for a leading and clear concept of “palliative nursing care” were retrieved using the following keywords: “palliative” OR “palliative care,” AND “concept” OR “concept analysis” OR “concept analysis” AND “nursing” OR “nursing care” OR “nursing intervention.” The inclusion criteria of the study were as follows: (1) concept analysis studies, (2) using the term palliative care or palliative nursing care, (3) clearly discussed concept and/or definition of palliative care including antecedents, attributes, and consequences in the texts, and (4) full texts in English published between 2004 and 2021. The study excluded letters, commentaries, theses, books, and opinion articles.

Article Selection

The data filtering process employed a PRISMA flowchart. The criteria were applied during the screening stages (title, abstract, and full text content screening). PRISMA was considered appropriate for use due to its function in improving the published report quality (Peters et al., 2015b) (Figure 1). The articles’ titles, abstracts, and full texts were examined by two researchers to check their eligibility. After that, the researchers screened the full texts of some potential studies to determine the eligibility of the texts to be included in the review. Whether the studies were ultimately included in the review were decided by the third and fourth researchers. As a result, four studies were included in the review (Table 1). All the included studies clearly presented the concept of palliative care, including antecedents, attributes, and consequences.

Figure 1.

PRISMA flowchart.

Table 1.

Descriptive Characteristics of the Included Articles (n = 4).

Authors (year)	Title	Purpose	Methods	Presentation of concepts analysis			Researcher definition of palliative
				Antecedents	Attributes	Consequences
Guo, Q., Jacelon, C., & Marquard, J. (2012) 22	An Evolutionary Concept Analysis of Palliative Care	Reporting a concept analysis of palliative care in the United States	Rodgers's evolutionary concept analysis	Inability of the curative medical treatment to meet the needs of the clients, in which the cure was not possible; 1. Terminal illnesses (cancer and HIV-AIDS) 2. Chronic Conditions (lung disease, heart failure, degenerative neurological diseases, demented) 3. Severe acute illnesses (intensive care settings) congenital injuries, chronic and life-threatening injuries from accidents or other forms of trauma at any age.	(1) Medical specialty, (2) Holistic care, (3) Patient- and family-centered care, (4) Interdisciplinary team work, (5) Effective communication, (6) An integrated approach.	Improving the quality of life of the patients and their families’ dignity	Palliative care is a kind of care that addresses the multifaceted needs of the patients, provides thorough symptom management and relief of the physical and psychological suffering, meets the family caregiver needs, and provides clear communication among patients, families, and interdisciplinary palliative care team workers;
Kirkpatrick, A.J., Cantrell, M., & Smeltzer, S (2017)23	A Concept Analysis of Palliative Care Nursing:	Clearly defining the palliative care nursing	The Walker and Avant model	Patient Acute or chronic, progressive, life-threatening conditions resulting from illness or injury Nurse Palliative care nursing includes palliative care nursing competence, self-competence, knowledge, experience, and self-awareness	(1) Compassionate (therapeutic and trusting relationship), (2) Holistic (inter professional Collaboration) (3) Attentive, (being Present) (4) Adaptable (nurse should be responsive to the dynamic nature of the illness trajectories and adjust the care strategies) (5) Realistic/resolute (purposeful) (6) Moral (humane approach)	Improving self-care, symptom management, and overall quality of life	Palliative care is a treatment and prevention of suffering for patients with progressive disease or serious injury, but they are not necessarily dying.
Meghani (2004) 3	A concept analysis of palliative care in the United States	The analysis is to trace the evolution of the concept of palliative in the United States	Rodgers’ evolutionary method	Patients with cute or chronic, actually or potentially life-threatening illness.	(1) Total, active and individualized patient care, (2) Support for the family, (3) Interdisciplinary teamwork (4) Effective communication (patients, families, and the interdisciplinary team).	Patient Improving the quality of life, reducing the suffering and the enhancing human dignity Families Improving how to cope, decreasing psychological distress, reducing the feelings of guilt, and improving bereavement outcomes	The scope of palliative care has growth and covers a wide range of patient populations who may not be appropriately termed as ‘dying’ but those who need to alleviate the suffering and the improve their life quality.
Stayer, D. (2012) 24	Pediatric Palliative Care: A Conceptual Analysis for Pediatric Nursing Practice	Providing a concept analysis of pediatric palliative care	The Walker and Avant model	Children/families with an acute illness that progresses to a life-limiting illness, Children/families with a chronic illness that progresses to a life-limiting illness,	(1) Mitigating physical and psychological suffering associated with the disease process through effective management of all symptoms which is assessed frequently and comprehensively throughout the illness including in the end-of-life (2) Providing effective and developmentally appropriate open communication regularly with the child and family is essential concerning prognosis, planning, and treatment. (3) Providing individualized and holistic pediatric palliative care at the time of the diagnosis along with the curative treatment throughout the trajectory of the illness and through bereavement (4) Incorporating an interdisciplinary health care approach to treatment/therapies throughout course of illness by respecting the child and family's wishes.	Child Improving the meaning/quality of life, relief of suffering, respect them as a unique individual, the discovery of new possibilities, the strength to deal with the illness, and the strength to deal with the closure of life. Family Ability to make advanced planning, strengthen the coping abilities, enhance the strength to assist their child in dealing with their illness and closure of life, pay respect as parents, and relief stress	Palliative care is offered as care that increases the life quality through the use of an interdisciplinary health team approach to address, respect, and support the needs of the child and family as one unit of care by providing developmentally appropriate individualized care and holistic relief of suffering for children at the time of the diagnosis and throughout treatment with a life-limiting disease process regardless the outcome.

Data Charting

The data were extracted from four articles that fulfilled the inclusion criteria of the review (see Table 1). The researchers extracted the following variables: (a) authors/year; (b) title; (c) purposes; (d) methods; (e) presentation of concepts (attributes, antecedents, and consequences), and (f) authors’ definition of palliative care in each included article. Attributes, antecedents, and consequences and the researcher's palliative care definition were summarized to make a strong conclusion of the palliative care definition and the characteristics of the patients in the context of palliative care.

Results

A primary search of the databases resulted in 29,358 studies. Twenty-nine thousand three-hundred forty-three studies were excluded because the titles did not contain the concept of palliative care, and the remaining 15 abstracts were screened. Six full-text articles were considered appropriate for a full review. Of the six, four fulfilled the criteria to be reviewed (Figure 1).

Characteristics of the Included Studies

The four included studies were focused on the palliative care concept analysis. Two studies analyzed general palliative care (Guo et al., 2012; Meghani, 2004). One study focused on palliative care nursing concept analysis (Kirkpatrick et al., 2017), and one study focused on the concept analysis for pediatric nursing practice (Stayer, 2012). Two studies used the Walker and Avant model of concept analysis (Kirkpatrick et al., 2017; Stayer, 2012), and two others used Rodgers’ evolutionary concept analysis (Guo et al., 2012; Meghani, 2004). All the included studies presented antecedents, attributes, and consequences and provided definitions of palliative care.

Definition of Palliative Care

All of the included studies explained as an approach to relieving physical and, psychological suffering or suffering alleviation and, improving the quality of life of patients with a progressive disease or serious injury (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004; Stayer, 2012). Palliative care is caring to whom the term “dying” is inappropriate to apply (Kirkpatrick et al., 2017; Meghani, 2004) and, their families.

Antecedents

Antecedents are the events preceding the occurrence of a concept (Walker & Avant, 2005). The antecedents of confirmed palliative care are (1) terminal illnesses such as cancer and Human Immunodeficiency Virus-Acquired Immunodeficiency Syndrome (HIV-AIDS) (Guo et al., 2012), (2) acute or chronic diseases, and (3) actually or potentially life-threatening illnesses (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004; Stayer, 2012).

Attributes

Attributes are characteristics of a concept that occur most frequently (Walker & Avant, 2005). The attributes of palliative care reported are holism (Guo et al., 2012; Kirkpatrick et al., 2017; Stayer, 2012), interdisciplinary teamwork (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004; Stayer, 2012), effective communication (patients, families, and the interdisciplinary team) (Guo et al., 2012; Kirkpatrick et al., 2017; Stayer, 2012) or compassion (therapeutic and trusting relationship) (Meghani, 2004), individualized patient care (Meghani, 2004; Stayer, 2012), and patient- and family-centered care (Guo et al., 2012; Kirkpatrick et al., 2017; Stayer, 2012).

Consequences

The events or incidents that occur due to the occurrence of outcomes of the concept are known as consequences (Walker & Avant, 2005). All of the studies reported that palliative care improved the patients’ and their families’ quality of life (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004; Stayer, 2012). Other consequences reported were the enhancement of human dignity (Guo et al., 2012; Meghani, 2004), improved self-care, symptom care management, and strengthened coping abilities (Kirkpatrick et al., 2017; Meghani, 2004).

Discussion

This review was designed to provide an extensive overview of the palliative care concept defined by concept analysis studies and the characteristics of patients in palliative care based on their antecedents. An approach to clarifying and defining concepts into clear and understandable language is known as concept analysis (Walker & Avant, 2005). This review study identified four (concept analysis) studies in the literature that examined the concept and characteristics in terms of palliative care.

The included studies defined the term palliative as an approach to relieving physical and psychological suffering or suffering alleviation and improving the quality of life of patients with a progressive disease or serious injury (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004; Stayer, 2012), not only those who are termed “dying” (Kirkpatrick et al., 2017; Meghani, 2004), and their families; the focus is not only on cases of advanced cancer patients (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004; Stayer, 2012). World Health Organization (WHO) provided the first definition of palliative care: to comfort patients experiencing distressing symptoms of advanced cancer is the focus of palliative care (Relief, Active Supportive, & World Health, 1990). In 2002, the WHO defined palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with a life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual” (Iwase & Mori, 2013; Organization, 2002). Consensus study informed palliative care is holistic care to improve the quality of life of patients, their families and, their caregivers (Radbruch et al., 2020). It is implied that palliative care is an approach to alleviating the suffering from incurable illness or disease symptoms and to improving the patient's and family's quality of life.

The characteristics of palliative care patients were confirmed by the antecedents of the studies included in this review. The occurrence of a concept must be preceded by events that are known as antecedents (Walker & Avant, 2005), in this case implying the characteristics of palliative care patients. Terminal illnesses such as advanced cancer and HIV-AIDS (Guo et al., 2012), acute or chronic diseases, and actually or potentially life-threatening illnesses (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004; Stayer, 2012) have been confirmed as characteristics of patients in the context of palliative care. All terminal care qualifies as palliative care, but not all palliative care can be classified as terminal care (Meghani, 2004). Terminal condition is a condition resulting from injury, disease, or illness from which, to a reasonable degree of certainty, health cannot be restored and natural death will inevitably be caused in the absence of artificial life-prolonging procedures (Hui et al., 2014). There is no set list of illnesses that are terminal. People who are terminally ill may have a single disease or a number of conditions, for example, advanced cancer, dementia (including Alzheimer's), motor neuron disease, lung disease, neurological disease such as Parkinson, or advanced heart disease. Another study defined terminal illnesses as irreversible fatal illnesses and unfavorable prognoses involving limited life expectancy ranging from 24 months or less (Hui et al., 2014). Meanwhile, chronic diseases are diseases that are long-lasting and generally show slow progression, without any specification about functional limitation and the need for ongoing medical treatments and care (Pizzoli et al., 2019). Another study explained that chronic diseases refer to diagnoses that are classified in the biomedical system according to etiology, pathophysiology, signs, symptoms, and treatment, which also implies an expected long duration and lack of cure (Martin, 2007), including both non-communicable diseases, such as diabetes, heart disease, chronic obstructive pulmonary disease, cancer, and depression, and communicable diseases such as AIDS (Martin, 2007). On the other hand, severe acute illnesses (whose patients are in intensive care settings), congenital injuries, life-threatening injuries from accidents, or other forms of trauma at any age have been (Guo et al., 2012; Kirkpatrick et al., 2017) confirmed to be accounted for in the characteristics of palliative care.

Palliative care approaches, including holistic (Guo et al., 2012; Kirkpatrick et al., 2017), interdisciplinary (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004; Stayer, 2012), effectively communicative (Guo et al., 2012; Kirkpatrick et al., 2017; Stayer, 2012), compassionate (Meghani, 2004), individualized (Meghani, 2004; Stayer, 2012), and patient- and family-centered care (Guo et al., 2012; Kirkpatrick et al., 2017; Stayer, 2012), are identified in this review. A study reported that palliative care best practices apply patient-centered methods and an interdisciplinary teamwork approach (Dobrina et al., 2014). In communicating the patient's prognosis and condition (as determined by a medical or advanced practice provider), the nurse must be clear, accurate, and honest and must express genuine empathy for the patient's situation (Kirkpatrick et al., 2017). How the nurse communicates must be therapeutic, kind, and appropriate to the patient's age and developmental stage (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004). Empathy to understand the patient's suffering should be combined with willingness to help and promote his or her wellbeing (Perez-Bret et al., 2016). The delivery of emotional support for the patient and the family in coping or grieving, both before and after death, is also required in palliative care nursing (Desbiens & Fillion, 2011; Galatsch et al., 2017). Multifaceted therapies that incorporate physical, developmental, functional, psychological, sociocultural, spiritual, and safety needs as complementary and alternative therapies may also be necessary to meet the patient's and the family's needs (Kirkpatrick et al., 2017).

The enhancement of the patient's and the family's quality of life and human dignity as a favorable outcome or consequence of palliative care (Guo et al., 2012; Kirkpatrick et al., 2017; Meghani, 2004; Stayer, 2012) is found in this review. The focus of quality of life is on the aspects of the physical and mental health of an individual who is being affected by the occurrence of a disease or by a treatment (Karimi & Brazier, 2016); quality of life has been an important and subjective clinical parameter that is used to evaluate the effects of an illness and the treatment outcomes (Shyu et al., 2004; Wantonoro et al., 2020). Dignity is an individual condition related to well-being that is formed by relationships with others, affected by the physical world, and framed in terms of values, accommodating the priorities of both individualistic and communitarian cultures (Mattson & Clark, 2011).

Limitations of the study: Several limitations in this review study, such as limited number of databases and unknown biases in the studies being reviewed, may have reduced the validity of the findings. Future reviews, including grounded qualitative studies on the concept of palliative care, are suggested.

Implication for Clinical Practice

Including palliative care terms in nursing education and clinical practice training and developing palliative care models in clinical practice are recommended to ensure the palliative care needs of patients and their families.

Conclusion

Changing illness trajectories, advances in health care technologies, and aging population trends highlight the increasing need for palliative care. More importantly, the findings of this review study have several implications. Patients who have actual or potentially life-threatening illnesses, as well as their families, need to have comprehensive care that aims to maintain and increase their quality of life.