528399 research-article2014

PMJ0010.1177/0269216314528399Palliative Medicine X(X)Guo and Jacelon

Review Article

An integrative review of dignity in end-of-life care

Palliative Medicine 2014, Vol. 28(7) 931­–940 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314528399 pmj.sagepub.com

Qiaohong Guo and Cynthia S Jacelon

Abstract Background: Dying with dignity is regarded as a goal of quality end-of-life care. However, the meaning of dying with dignity is ambiguous, and no comprehensive synthesis of the existing literature has been published. Aim: To synthesize the meaning of dying with dignity and to identify common aspects of dignity in end-of-life care. Design: This is an integrative review article. Methodological strategies specific to the integrative review method proposed by Whittemore and Knafl were followed to conduct data analysis. The matrix method was used to summarize characteristics of included articles. Data sources: Five electronic databases were searched in October 2012, with no date restriction: PubMed, CINAHL, PsycINFO, Academic Search Premier, and Social Sciences Abstracts. Theoretical reports, and both qualitative and quantitative empirical reports, focused on dignity in end-of-life care were included. Results: Themes of dying with dignity are as follows: a human right, autonomy and independence, relieved symptom distress, respect, being human and being self, meaningful relationships, dignified treatment and care, existential satisfaction, privacy, and calm environment. Factors influencing dignity include demographic, illness-related, and treatment-/care-related factors, as well as communication. Models of dignity in end-of-life care and instruments to measure dignity were reported. Interventions to support dignity stressed physical, psychological, and spiritual supports not only to dying patients but also to family members. Conclusion: This review clarified the meaning of dying with dignity and synthesized common aspects of dignity in end-of-life care. Further research is needed to evaluate the meaning of dying with dignity across cultures and to explore individualized dignity-based care.

Keywords Literature review, dignity, dying with dignity, end of life, palliative care, hospice care

What is already known about the topic? •• Dying with dignity is considered to be important by dying patients, their families, and health professionals, but it is still an ambiguous concept. •• Many laws state that individuals should be treated with dignity, but without a clear definition it is not possible to evaluate adherence with this requirement. •• No attempt has been made to synthesize existing literature on the definition of, and common aspects of, dignity in end-oflife care. What this paper adds? •• Patients and health professionals share similar understandings of what is needed to die with dignity, including being human, being self, achieving existential goals, having self-respect and being respected by others, maintaining meaningful relationships with others, maintaining autonomy and independence, dying in privacy with minimal symptom distress, and receiving dignified treatment and care in a calm and safe environment.

College of Nursing, University of Massachusetts Amherst, Amherst, MA, USA

Corresponding author: Qiaohong Guo, College of Nursing, University of Massachusetts Amherst, 651 North Pleasant Street, Amherst, MA 01003, USA. Email: [email protected]

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Palliative Medicine 28(7) •• Dying with dignity is a basic human right, it is a subjective experience and also a value influenced by others, and it is a dynamic concept changing over the trajectory of illness.

Implications for practice, theory, or policy •• Guided by the conceptual understanding of dignity at the end of life, care strategies can be developed along our synthesized themes of dying with dignity; these strategies have the potential to contribute to the delivery of high-quality, dignity-based care in clinical practice. •• Our findings revealed that there is a need to explore families’ perceptions of dignity and to propose patient- and familycentered models which also take families as a key part. •• Health-related disciplines have always taken dignity as a professional code or a standard for health care. Our synthesized themes of dignity could guide policymakers to develop policies directed at promoting the provision of dignified care.

Introduction Dignity in end-of-life care has recently been gaining attention. In this article, end-of-life care includes hospice and palliative care, both of which aim to improve the quality of life of patients facing life-threatening illness and their families. Scholars have explored the meaning of dying with dignity and aspects of dignity in end-of-life care theoretically and empirically.1–52 However, there has been no attempt to synthesize the meaning of dignity at the end of life across studies. The aims of this integrative review are to clarify the meaning of dying with dignity and to identify common aspects of dignity at the end of life, including the factors that influence dying patients’ dignity, models of dignity in end-of-life care, instruments that have been developed to measure dignity, and interventions to support dignity. Human dignity has become an important aspect of health and social care.53 It has been explored using several methods, including critical and philosophical thinking, analyzing the concept historically, asking or observing people to understand their perceptions of dignity, and empirically examining how certain groups of persons use the word.54,55 The Merriam-Webster Dictionary56 defined dignity as the quality or state of being worthy, honored, or esteemed. Mairis57 regarded dignity as a personal possession with the characteristics of having cognitive ability, feeling comfortable with oneself, and having control over one’s behaviors and surroundings. Mairis57 also argued that dignity means feeling important and valuable in relation to others and be treated as such by others. According to Johnson,58 dignity reflects the individuals’ choices, values, ideals, conduct, and lifestyle. Dignity is a multifaceted and complicated concept.5,59,60 The common use of the word “dignity” tends to confuse rather than to clarify the meaning. Macklin61 maintained that dignity was a useless concept, meaning no more than respect for persons or their autonomy. Pullman17 argued that it would be a mistake to replace the concept of dignity with other concepts, such as “rights” and “autonomy,” because dignity is a larger concept than any individual right. The meaning of dignity

includes all human rights that are designed to promote respect for humans.62 Autonomy means that a human being shall not be subjected to domination by others;63 it is not a synonym for dignity, but one of its attributes.64 From the above we can see that definitions of dignity are various and widely used, but unclear; this could confuse the application of dignity in care. Dignity is considered to be an attribute of a good death for terminal patients.65 End-of-life care, with the purpose of relieving suffering through intensive physical and psycho-spiritual care, is often philosophically rooted in the acknowledgment of the inherent dignity of each person.66 Researchers reported that dying with dignity has been found to be important by dying patients, their families, and health-care providers.10,67 Dignity is perceived as a basic requirement that must be met in caring for dying patients.68 The basic tenets of end-of-life care could be summarized as improving the quality of life and maintaining the dignity of the dying person.69–71 Furthermore, human dignity is an essential value embedded in nursing practice, it is a component of the International Council of Nurses (ICN) Code of Ethics,27 and it is an overarching value which shapes the delivery of service to dying individuals.20 Understanding dignity as a concept is crucial to developing knowledge in health-related disciplines; the concept will influence people’s understanding, attitudes, and behaviors toward caring with dignity in health-care situations. In summary, exploration of the issue of dying with dignity is of value to medical and nursing education as well as to clinical care. Although the definition of dignity in relation to death and dying is ambiguous,72 it deserves more attention.70

Methods The aim of this review is to provide a comprehensive understanding of dignity in the context of end-of-life care. Using integrative review strategies offers a comprehensive understanding of a phenomenon through synthesizing past empirical and theoretical literature, thus this method was identified as the most appropriate review

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Guo and Jacelon method.73 This review was conducted in accordance with the methodological strategies proposed by Whittemore and Knafl.74 A keyword search of the following five electronic databases was performed in October 2012: MEDLINE (PubMed), CINAHL, PsycINFO, Academic Search Premier, and Social Sciences Abstracts. The search terms used were “dignified dying,” “dignified death,” “death with dignity,” “dying with dignity,” and “dignity” combined with “end of life,” “palliative care,” or “hospice care.” In order to explore the evolution of thinking about dignity, no date restriction was used. Studies that were selected fit the following criteria: published in the English language; focused on the meaning of dying with dignity, model development, instruments, or interventions for dignity at the end of life; and aims of study were clearly stated or easily inferred from the text. Articles focused on the legal aspects of death with dignity, including the Death with Dignity Act, were excluded. Articles discussing patients’ dignity other than at the end of life, reviews, reports, commentaries, editorials, letters to the editor, and books were also excluded. Details of search strategy and selection process are shown in the Preferred Reporting Items for Systematic Reviews and MetaAnalyses (PRISMA) flowchart (Figure 1). According to Whittemore and Knafl,74 the inclusion of diverse data sources in an integrative review, including both empirical (qualitative, quantitative, and mixed methods) and theoretical studies, makes the process of data evaluation more complicated, and may provide little value,75 thus quality appraisal of the literature was not deemed necessary;74 therefore, data evaluation was not undertaken in this article. All studies that meet the inclusion criteria were treated equally in determining their contributions to this synthesis. We followed the data analysis processes proposed by Whittemore and Knafl.74 These included data reduction, data display, data comparison, and conclusion drawing. First, the matrix method76 was used to present a summary of characteristics of each article, including author(s), title, and journal; publication year; purpose of study; sample/ setting/country; and study design and data sources. All included articles were divided into subgroups by a predetermined conceptual classification derived from the aims of this review: (a) meanings of dying with dignity, (b) factors that influence dignity, (c) dignity-related theories or models, (d) instruments to measure dignity, and (e) interventions to support dignity. Then, reports were analyzed by topics. Data for each subgroup classification were extracted from all primary data sources, regardless of types of evidence, and compiled into the matrix. In the third step, extracted data were compared item by item so that similar data were compared, categorized, and synthesized.74 NVivo 10.0 was used to organize and manage the data. Finally, we reported our conclusions using PRISMA guidelines to frame the integrative review.

Reports identified through database searching for screening (n=3311) Reports rejected on first screen due to duplication, title or abstract (n=2998) Full-text reports assessed for eligibility (n=313) Full-text reports excluded due to inclusion/exclusion criteria (n=261) Reports meeting inclusion criteria and included in review (n=52)

Empirical reports (n=41)

Qualitative (n=18)

Theoretical reports (n=11)

Quantitative Mixed methods (n=17) (n=6)

Figure 1.  PRISMA flowchart.

PRISMA: Preferred Reporting Items for Systematic Reviews and MetaAnalyses.

Findings Characteristics of identified articles are summarized in Table 1. The main findings were reported in accordance with aims of this review: the meaning of dying with dignity, factors that influence dignity, models of dignity, instruments to measure dignity, and dignity support strategies.

Meaning of dying with dignity In total, 28 reports, including 7 theoretical3,8,15,17,25,28,48 and 21 empirical articles,2,4,5,7,9–12,21,23,24,29,30,32,34–36,39,41,46,50 were used to explore the meaning of dying with dignity. Of them, 10 articles reported the meaning from the perspectives of patients,2,4,5,9,11,12,29,34,35,41 12 reported the meaning from the perspectives of health professionals,9,12,21,23,24,30,32,36,39,46,48,50 and 2 reported the meaning from the perspectives of families and significant others.5,12 Synthesized themes are reported below and in Table 2. A human right. Pullman17 and Leung28 defined dignity as a human right, which applies to everyone equally irrespective of circumstances, and it can neither be taken away nor lost. Patients in a study by Pokorny2 stated that all human beings have the right to die with dignity. Dignity was perceived by physicians in a study by Antiel et al.50 as the inherent worth of human beings which is given by the creator. Autonomy and independence.  Autonomy and independence are commonly used by patients, families, and health professionals to conceptualize dignity.5,11,12,21,46 Autonomy refers to the extent to which patients have a sense of control over their actions and decisions2,12,29,35,36,40 and life

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Table 1.  Characteristics of literature included in review (N = 52).

Study group  Patients   Family members   Health professionals   Others (not mentioned) Country  USA  Canada  UK  Netherlands  Australia  Sweden   Other European countries   Asian countries   Mixed or others Study design  Qualitative  Quantitative  Multi-method  Theoretical Published year   Before 1995  1995–1999  2000–2004  2005–2009  2010–2012

N (%)

References (no.)

26 (50.0) 4 (7.7) 23 (44.2) 11 (21.2)

2,4–6,9–12,14,16,18–20,29,31,33–35,37,38,41–43,47,49,51 5,9,12,42 5,9,12,19,21–24,27,29,30,32,35,36,38,39,40,42,44–46,48,50 1,3,7,8,13,15,17,25,26,28,52

11 (21.2) 12 (23.1) 8 (15.4) 2 (3.8) 3 (5.8) 4 (7.7) 3 (5.8) 2 (3.8) 7 (13.5)

1–3,6,24,30,35,39,47,50,52 9–11,13–15,17,20,26,28,33,36 5,8,12,19,25,34,42,51 41,49 4,7,18 16,23,32,46 29,38,40 44,45 21,22,27,31,37,43,48

18 (34.6) 17 (32.7) 6 (11.5) 11 (21.2)

2,5–7,9,11,12,16,19,23,29,30,32,34,37,38,42,46 4,10,14,18,20–22,27,31,40,43–45,47,49–51 24,33,35,36,39,41 1,3,8,13,15,17,25,26,28,48,52

2 (3.8) 4 (7.7) 11 (21.2) 19 (36.5) 16 (30.8)

1,2 3–6 7–17 18–36 37–52

Table 2.  Meanings of dying with dignity from perspectives of patients, families, and HPs. Themes

Patients

HPs

Families

A human right Autonomy and independence Relieved symptom distress Respect Being human and being self Meaningful relationships Dignified treatment and care Existential and spiritual satisfaction Privacy Safe and calm environment

√ √ √ √ √ √ √ √

√ √ √ √ √ √ √ √

  √ √ √ √ √ √  



√ √

   

related to the level of independence, defined as the degree of reliance a person has on others.11 Studies revealed that the ability to maintain independence and a sense of independence could promote patients’ physical and psychological integrity and hence dignity.2,12,42

HPs: health professionals.

Relieved symptom distress.  Relief from symptom distress was identified as an important theme for dignified dying by patients,2,4,9,11,29,34,35,41 families,5 and health professionals.9,21,23,24,30,32,36,39,46,48 Symptom distress is the patient’s experience of discomfort and anguish related to the progress of their disease; this includes physical and psychological distress.9,11,34 Among physical symptoms, pain takes precedence.4,42 Physical distress is always accompanied by related psychological distress, such as worry, fear, depression, and anxiety.

circumstances, including diet, when to sleep or wake,5,11,50 and physical body. Thus, autonomy includes not only functional but also cognitive and decisional attributes.36 Patients and professionals agree that autonomy in dying implies being allowed to die; they stated that patients should be allowed to end their lives as they want, otherwise there can be no dignity.5,29,36 Autonomy is closely

Respect.  In defining dignity, respect is often a main feature in the views of patients, families, and health professionals. Dignified dying is a respectful dying,24 and it is important to treat the dying individual with respect until the last moment.23 An international study by Doorenbos et al.21 determined that respect is a commonly used term to describe the phenomenon of dignified dying across countries. Respect includes positive self-image and self-respect40 as

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Guo and Jacelon well as the way in which individuals are perceived and treated by others in their own eyes, the latter is defined as other-respect.40 Other-respect involves respect for the dying individual as a person; for the person’s identity, thoughts, and values; for the (deteriorating, disfigured, or dead) physical body as a human body; for the person’s privacy; and respect for both the choices, wishes, and needs of the dying person and their family.2,3,12,23,25,29,30,32,35,36,40 Being human and being self.  Patients, families, and professionals agreed that being human and being self were of fundamental importance to dignity of dying patients.5,9,12,35 Being human implies being seen and being treated as a person who is worthy of respect and has worth, value, esteem, and rights, rather than an object or a disease.2,5,12,32,35 Being self indicates the continuity of the individual self, in spite of one’s advancing illness.11,12,42 Patients, families, and professionals perceived the self through the concepts of self-image and role preservation.11,12,35,42 Self-image mainly refers to positive appearance and body image.35,12 Role preservation refers to the ability to function in usual roles, as a way of maintaining prior views of self and routine life.9,11 Being self requires the acknowledgment of individuality or personhood.12,32 For example, Dwyer et al.32 found that individualized care could promote patients’ perception of dignity, while treating them as a homogeneous group with similar needs eroded it. Meaningful relationships. Studies revealed that having meaningful relationships with others was another main theme of dignity in dying.2,3,5,12,29,36,48 Street and Kissane7 stated that dignity is subject to relationships in care; patients’ relationships with families, health providers, and significant others critically influence their sense of dignity. Having meaningful relationships means being heard, understood, and trusted; giving and receiving love; being included in decision making; not being a burden to the family; and being among and connected with loved ones.8,12,15,23,29,30,35 Maintaining familial relationships should be given considerable attention.29 Nurses in a study by Volker and Limerick30 stated that a death will be meaningful if families are present and the dying individuals are able to convey his or her final thoughts and concerns to loved ones. Furthermore, patients’ feeling of not being a burden to the family has been stated as a key factor to maintain such relationships.29,36 Besides familial relationships, patients also spoke of dignity in terms of relationships with care providers that were caring, honest, attentive, and calm.2,36 However, relationships among patients were limited by factors such as old age, decline in health, and dementia.29 Dignified treatment and care. A dignified death was described as a death with limited invasive interventions

devoid of futile examinations and treatments.3,23 Families in Gamlin’s5 study reported that it was undignified to continue futile treatment to the dying. Enes12 proposed that dignity is more about how people were treated, in which care plays a crucial role than what the treatment was. Patients in a study by Pokorny2 regarded caring care as a major attribute of dignity, which means showing empathy, believing in patients’ dignity, and being sensitive to their values, choices, and needs in care. Dignified care requires adequate care provided by competent caregivers who have adequate professional knowledge, who are confident in their professional roles, and who are trusted by patients and their families.2,29,46 However, it is hard to define adequate care, and actually, many studies have revealed that increasing need for care represents a major threat to dignity.1,10,14,20,29 Furthermore, providing dignified care to patients extends to the family, friends, and even the community.2,15 Existential/spiritual satisfaction. Existential/spiritual satisfaction is another overarching theme addressed by patients and health professionals as an attribute of dignity.11,12,24,30,35,40,42 Professionals in a study by Enes12 stated that a spiritual dimension to dignity refers to dignity in relation to the immortal soul given by God. Accordingly, seeking existential/spiritual satisfaction refers to “the dignity-sustaining effect of turning toward or finding solace within one’s religious or spiritual belief system (p. 439).”11 Several scholars listed the implications of spirituality, including preserving the patient’s hope,11,36,40 helping the patient find meaning in life and death,36,40 and helping the patient maintain a fighting spirit.11,36 For patients nearing death, hopefulness is important, and it is associated with their ability to see life as having sustained meaning.11 Fighting spirit is explained as “the mental determination that some patients exercise to overcome their illnessrelated concerns or to optimize their quality of life” (p. 438), and it was reported by patients as having potentials to bolster their sense of dignity.11 Overall, existential/spiritual satisfaction could foster dying patients’ feeling of completion and satisfaction during dying and help them get ready to detach from the physical world and go on to the next journey.36 Privacy.  Patients and professionals spoke about privacy in terms of privacy of the patient’s body, the need for personal space, and confidentiality of patient’s information.2,12,32,35 However, it is difficult to maintain privacy. In a study by Hall et al.,34 patients who depended on caregivers for most of their personal care stated that the inevitable loss of privacy from having their personal space invaded during the care process diminished dignity. Chochinov et al.11 used the term “privacy boundary” to denote “the extent to which dignity can be influenced by having one’s personal environment encroached upon during the course of receiving care or support (p. 439).”

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Safe and calm environment. Environment is a factor addressed mainly by health professionals. According to Swedish medical students in Karlsson et al.’s23 study, a dignified death is a death without fear, in a safe environment. A safe environment includes not leaving the patient alone to die, and dying in a calm and private environment. Nurses and medical residents in other studies also stated the importance of providing a comfortable care setting and dying in a quiet and non-chaotic environment.30,36

Factors that influence dignity Many factors influence dying patients’ dignity. Some of these factors include demographic factors, illness-related factors, treatment- and care-related factors, communication, and others. Demographic factors. Compared with older patients, younger patients tended to have a fractured sense of dignity.10,20 Women were more likely to relate more factors to their perceptions of dignity than men.20 Individuals with more education tended to assign dignity implications to more factors than individuals with less education.20 Cultural and socioeconomic status also affected dignity.15,20 Finally, people who are more religious are more likely to consider a meaningful spiritual life significant in relation to dignity.15,20,50 Illness-related factors.  Factors that are related to the illness, such as symptom distress, especially pain, change in appearance, or change in functional status, may threaten patients’ sense of dignity.4,10–12,14,20,35,49 Symptom distress negatively affects patients’ dignity.11,12,14 Change in appearance caused by the illness is associated with higher levels of fractured dignity.10,12 Loss of functional capacity and loss of ability to make choices have an effect on patients’ dignity.11,35,49 Treatment- and care-related factors.  Treatment and care are important issues that influence dying patients’ dignity.2,41,49 Poor symptom management, or treatment without empathy and affection, combined with the effects of illness, can result in diminished dignity.12,35,39 Poor medical care diminishes dignity at the end of life,16,35 while appropriate and qualified care maintains and improves it.9,12 However, as the illness progresses, the increasing need for help and care represents a major threat to dignity.1,10,11,14,20,29 Attitudes and behaviors of families and care providers toward patients and their relationships with patients can affect patients’ dignity.16,20,35 Additionally, compared with outpatients, hospital patients are more likely to indicate that dignity was violated while in the hospital.10,11,19 Communication. Communication is another important issue that influences dignity.41 Honest communication,

providing and explaining information to patients, gave a sense of being valued and in control; this could contribute to patients’ dignity.2,12 Effective communication was taken as the basis for meaningful relationships.5 Poor communication with health-care providers could lead to patients’ uncertainty regarding their treatment and illness; this has a negative influence on patients’ dignity.11,12 Other factors. Lack of resources and poor organization, including insufficient time to provide care, lack of competent staff, and lack of teamwork, can erode a dying person’s dignity.12,32 A safe, calm, and private living environment promotes the patient’s sense of dignity.9,23,25 Social support from a helpful community of friends, family, and health-care providers was identified as a factor that positively affected patients’ dignity.9,11,14,16,20,35,42

Dignity models Several theoretical models of dignity in end-of-life care have been developed. The Dignity Model, which was developed by Canadian scholars Chochinov and colleagues9,11 and based on patient data, indicated three primary resources that affect patients’ sense of dignity: illness-related concerns refer to physical and psychological symptoms that derive directly from the illness;9,11 dignity-conserving repertoire refers to the internal resources that patients bring to the illness, based on their past experiences, psychological states, and their spiritual life;9,11 and social dignity inventory includes factors within the social environment that affect patients’ sense of dignity.9,11 This model has been well tested and validated10,14,20 and has been widely used by scholars to evaluate care,22,34 to produce dignity-related interventions,9 and to develop instruments in palliative care settings.31 Based on the Dignity Model, Chochinov26 further proposed the ABCD (Attitude, Behavior, Compassion, and Dialogue) of dignityconserving care. Together the models provide a framework to guide health-care practitioners toward maintaining patients’ dignity.9,11,26 Dignity was explained in terms of its intrinsic and extrinsic components in two other models.29,39 Pleschberger29 developed the Dignity Conceptual Model based on the perspectives of older nursing home residents in western Germany regarding the meaning of dignity with regard to end-of-life issues. Dignity in this model was differentiated into personal dignity and relational dignity. Personal dignity was defined as including personal beliefs, values and wishes, and aspects of the body.29 Relational dignity is developed over one’s life through one’s existing social relationships and encounters.29 Personal dignity is the core of dignity, but it is surrounded by and affected by relational dignity. Similarly, dignity in the Theoretical Model of Preservation of Dignity, developed by Periyakoil et al.,39 based on a survey of 100 American care providers

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Guo and Jacelon from across disciplines in geriatrics and palliative care, was classified into intrinsic and extrinsic dignity. Intrinsic dignity is a property or possession of an individual. Extrinsic dignity rests outside the person and is affected by others. Vladeck and Westphal52 applied dignity in decisionmaking process and developed the Dignity-Driven Decision-Making Model based on their efforts to develop a plan for comprehensive care of people with advanced illness in the United States. They proposed that the decision-making process should be a collaborative process in which patients, their families, and their care providers work together to continuously determine the goals of care and the ways to implement those goals.52

Measurement of dignity Several instruments have been developed to measure dignity-related issues at end-of-life, with a focus on the measurement of factors influencing dying patients’ dignity. The Patient Dignity Inventory (PDI), developed by Chochinov et al.31 based on the Dignity Model, provides health professionals with an easy way to identify a wide range of issues leading to distress among dying patients. Periyakoil et al.35,39 developed two rank-order card-sort tools: the Dignity Card-Sort Tool (DCT) and the Preservation of Dignity Card-Sort Tool (p-DCT). These can be used to evaluate patients’ perceptions of key factors influencing loss of dignity and preservation of dignity at the end of life. Another measurement tool is the Instrument to Measure Factors related to Self-Perceived Dignity which was designed to measure factors that influence dignity of patients at the final stage of life.49 All of these tools were tested and found to be valid and reliable in the context of end-of-life care.31,35,39,49 Two other tools were designed to evaluate nursing care and nursing outcomes of dignified dying. One is the Indicators for Dignified Dying, which can be used to measure nursing outcomes of dignified dying;6 another is the International Classification of Nursing Practice (ICNP) Catalogue: Palliative Care for Dignified Dying, which was developed by the ICN research team,77 under the guidance of Chochinov’s Dignity Model, to explore and evaluate nursing interventions employed to promote dignified dying. It has been used in several countries, including India, the United States, Ethiopia, Kenya, the Philippines, and South Korea.22,24,27,44,45

Dignity support interventions Strategies commonly used to support dignity in end-of-life care include recognizing patients’ vulnerability to dignity loss; respecting patients’ rights, autonomy, and needs; protecting patients’ privacy;42 and removing barriers to dignity, including sufferings in physical, psychological, and

spiritual aspects of the dying process. Strategies to promote physical comfort mainly focused on pain and symptom management.22,24,27,40,42,44 Interventions to support psychological and spiritual needs include counseling, engaging in prayer and other spiritual traditions, promoting a sense of hope, and maintaining self-esteem.22,24,27,40 Recently, Chochinov et al.18 developed the dignity therapy based on the Dignity Model to reduce psychosocial and existential distress in terminal patients by enhancing their sense of meaning. This therapy has been successfully applied to patients with advanced cancer,33,51 been implemented at both hospital-based and community-based hospice settings,18,33,43,47 and been adapted for different culture.38 Other scholars have reported developing and implementing nursing interventions to support dying patients’ dignity. These interventions were categorized as illness-related concerns interventions, dignity-conserving nursing interventions, and social dignity interventions based on the Dignity Model.22,24,27,42 Since families are part of the care unit and they play a key role in the dying process, they were often included in the dignity support interventions. Involving family in patient care was reported as a key strategy to support patient’s social dignity.22,24,42 Romanian scholars reported family-centered hospice care that integrated Christian traditions to transform patients as death approached.40 Their interventions not only addressed patients’ needs but also emphasized and promoted family function in hospice care. Vladeck and Westphal52 proposed a patient- and familycentered care for terminal patients based on the DignityDriven Decision-Making Model. They considered the experience of the patient and family as a key outcome of the care and addressed collaborations among health-care providers, patients, families, and other supportive resources as critical to the provision of dignified care.

Discussion Summary of main findings It is clear that patients and professionals have similar understandings of dying with dignity (Table 2). Based on the synthesized themes of dying with dignity and the theoretical explanations in dignity models, we propose the following definition of dying with dignity: Dying with dignity is a basic human right; it is a subjective experience and also a value influenced by others; it signifies a dying process with the following characteristics: dying with minimal symptom distress and limited invasive treatment, being human and being self, maintaining autonomy and independence to the greatest extent, achieving existential and spiritual goals, having self-respect and being respected by others, having privacy, maintaining meaningful relationships with significant others, and receiving dignified care in a calm and safe environment.

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As a subjective experience, personal preferences were generally considered as central to dying with dignity,29 even if it might be disruptive to the dying person’s family. However, there are many cultures, such as some Asian cultures, in which the predominant emphasis is on familial and social harmony as opposed to individual preference.15 Meanwhile, the intrinsic component of dignity or personal dignity17,28,78 was highly valued by both dying patients and health professionals. As dying patients move toward death, increasing dependence, and loss of autonomy, intrinsic dignity may begin to give way to extrinsic dignity, increasingly becoming a construct dependent on others.7,17,29 At the end of life, dignity is no longer defined by previous ideas of autonomy, independence, and self-control, rather maintenance of dignity is dependent on others.28 Dying with dignity is a dynamic concept changing over the trajectory of illness. Overall, human dignity is related to the human life and associated with the internal and external respect of the person in regard to cultural and social aspects.53 In order to support the dignity of patients at end of life, we suggest that the environment must be created to help patients to feel worthy of compassion and support, rather than to feel embarrassed or to feel they are a burden. This will encourage patients to spend time to accommodate to their changing status, thus enabling them to accept help and developing strategies to promote their sense of worth. Family members are important to dying patients and should be included in the plan of care.15 Health professionals need to be well prepared in knowledge, skill, and attitudes in order to be able to provide dignified end-of-life care.18,28,52

Strengths and limitations The integrative review method allows for the inclusion of deep and broad health literature using diverse methodologies74 and thus contributes to a comprehensive presentation on dignity in end-of-life care. However, the varied data make the analysis process more complicated. Furthermore, data quality of the included articles was not evaluated for this review. Articles in this review were limited to dignity in end-of-life situations, therefore the findings may be not generalizable to other situations. Although this review was drafted based on international evidence, we only included articles reported in English, thus information regarding dignity reported in other languages was missing. Most evidence comes from non-experimental studies. The descriptive nature of the findings offered an in-depth understanding of topics related to dignity in endof-life care. The evidence base is predominantly descriptive, so the standard hierarchies of evaluation of strength of evidence in medical research do not apply.

Contributions of this review Dying with dignity is considered to be important by dying patients, families, and health professionals, but

continues to be an ambiguous concept.72 This is the first integrative review to synthesize international evidence regarding the meaning of, and common aspects of, dignity in end-of-life care. The purpose is to offer readers a comprehensive understanding of the topic of dignity in end-of-life care. We synthesized the meaning of dignity in end-of-life care from perspectives of dying patients, families, and health professionals (see section “Findings”). Our findings revealed that dying with dignity is a dynamic process changing over the trajectory of illness, which implies the changing role of intrinsic and extrinsic aspects of dignity along with the progress of the disease. With the approaching of death, maintaining dignity always requires professional support, thus qualified care becomes a necessity to maintain dignity in patients at life’s end.

Implications for future practice, policy, and research This review can help health-care providers respond more effectively to dying patients and provide guidance for care near the end of life. Care strategies can be developed along our synthesized themes of dying with dignity. These have the potential to contribute to the delivery of highquality, dignity-based care in clinical practice. In order to apply the term “dignity” successfully in practice, the reliability and validity of its definition across countries and cultures should be assessed. Our results revealed that few researchers have explored the meaning of dignity from the perspective of family members, and even fewer have explored the dignity of family members as recipients of care, thus more research is needed to fill these gaps. Most existing dignity models are patient-centered and are not helpful for family caregivers, so further research is needed to explore the effect of family function on dignity support in end-of-life care and to develop patient- and familycentered care models which extend care for the family beyond the patient’s death into the period of bereavement. Health-related disciplines have always taken dignity as a professional code or a standard for health care; our synthesized themes of dignity could guide policymakers to develop policies directed at promoting the provision of dignified care.

Conclusion This review clarified the meaning of dying with dignity by identifying themes across studies that can be easily understood by readers and synthesized common aspects of dignity in end-of-life care. As a basic human right, all humans have the right to die with dignity. As a subjective experience, dignity is intrinsically constructed with a particular self and perceived in terms of personal values and standards, thus dying with dignity may mean different things to different individuals. As a value respected and influenced by others,

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Guo and Jacelon dying with dignity requires caregivers understand the socially and culturally embedded context of the patient.15 A key finding from this review is that qualified care becomes increasingly important to patients’ dignity as the illness progresses. Further research is needed to evaluate the meaning of dying with dignity across cultures and to develop individualized dignity-based care; and more research is required to explore families’ perceptions of dignity. Declaration of conflicting interests The authors declare that there is no conflict of interest.

Funding The first author (Q.G.) would like to thank the Hluchyj Fellowship for providing support for her doctoral studies.

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An integrative review of dignity in end-of-life care.

Dying with dignity is regarded as a goal of quality end-of-life care. However, the meaning of dying with dignity is ambiguous, and no comprehensive sy...
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