Dignity: a Concept Analysis

Running head: DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS1

Dignity During the Dying Process: A Concept Analysis

Nichole Potts and Megan Reid

Washburn University Running head: DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS2

Dignity During the Dying Process: A Concept Analysis

In 2009, the Division of Vital Statistics reported 2,436,7652 deaths (Kochanek, Xu,

Murphy, Minino, & Kung, 2011). Of these deaths, it is impossible to tell how many occurred with the patient’s wishes in mind and how many could be considered dignified. Dignity is a universal concept that is experienced from conception, is continual through life, and may be present or absent even after death has occurred.

Literature was systematically searched using Google, CINAHL, and Medline. Dignity, dignity and concept analysis, dignity and elderly, and dignity and death were searched. A review of literature was done to give provide insight on dignity interventions around the world, to find ways to measure outcomes related to dignity, to further define a dignified death, and to analyze the nursing phenomenon of dignified dying. Dignified death is a complex and evolving concept; a more concrete definition could provide healthcare workers with a better understanding of dignity so it may be included, if not made a priority, in their every day practice.

Defining Dignity

Looking at the actual definition of dignity itself, The American Heritage College

Dictionary defines the term as “the quality of state of deserving esteem or respect” (2000, p.

389). The origin of the word dignity comes from the Latin word dingus, meaning worthy and dignitas, meaning merit (Collins. 1994).

Dignity in Death and Dying

Death is inevitable. Whether death has occurred with dignity depends on many factors including: the patient voicing their preferences, the healthcare provider hearing, understanding, and altering care based upon their preferences, and controlling symptoms that may alter dignity.

Many adults and elderly elect to execute advanced directives in order to ensure dignity in the DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 3 event that death is imminent and they are no longer able to speak for themselves. By doing this, a patient may express individual wishes to decline or accept cardiopulmonary resuscitation, intubation, and other measures such as feeding tube placement and non-curative medical interventions.

A patient in the dying process may experience symptoms (both physical and psychological) that can result in the loss of dignity. It is up to the family and healthcare professionals to recognize these symptoms in order to reduce or eliminate them, so that dignity may be restored. Harrison’s Principles of Internal Medicine describes some of the symptoms expressed during the dying process that may contribute to impaired dignity. Based upon the illness there may be pain, fatigue, difficulty breathing, difficulty sleeping, constipation, anorexia, and dizziness. A patient may also feel anxious, depressed, hopeless, irritable, or confused (Fauci et al., 2008).

Review of Literature

Dignity in Older Adults

Anderberg, Lepp, Berglund and Segesten (2007) performed a literature-based concept analysis of ‘preserving dignity’ specific to older adults. The team discusses findings in literature for both dignity and preserving. After analyzing literature, the authors identified critical attributes as: individualized care, respect, advocacy, and sensitive listening. Antecedents for the concept of preserving dignity found by the authors were: professional knowledge, responsibility, acknowledgement of the patient’s inherent potential, reflection, an environment that allows nurses to work in close communion with the patient. Consequences for this concept were found to be: strengthening one’s life spirit and successful coping. This concept analysis can be useful to practicing nurses because they must relate to this concept in daily work. The theoretical DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 4 framework suggested in this article help to more explicitly define nursing activities aimed at preserving dignity and may be instrumental in evaluating quality of care.

Fenton and Mitchell (2002) also performed a concept analysis of ‘dignity’ specific to older adults. The concept dignity is analyzed in literature and the process and importance of analyzing dignity is explained. They discuss the unique aspects of caring for older adults and the responsibility of nurses to maintain dignity. Although this concept analysis of dignity is brief and lacks detail, it provides a quick review of the meaning of dignity related to older adults and identifies implications from a nursing perspective.

Webster and Bryan (2009) investigated the experiences of older patients who were hospitalized in order to assess their views on dignity and define factors that promote dignity. The study discusses a literature-based background of dignity and demonstrates the importance of the study. The aim of the study was to examine older people’s experiences using a descriptive phenomenological approach. Participants in this study were fifteen patients with an age range of

73 to 83 who stayed in a medical assessment ward for more the 72 hours after an unplanned admission. Data was collected by semi-structured interviews. This study found that most participants were generally satisfied with the level of care received during their hospital stay, but also discussed issues with maintenance of dignity. The following themes for maintenance of dignity were found: privacy, cleanliness, ageing and dignity, communication, independence and control. The study illustrates complexity of dignity, its importance to older adults, and the modification and maintenance of dignity during hospitalization. This study can be useful to healthcare staff because it stresses the magnitude of proper communication and identifies important themes related to dignity in the older adults. DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 5

Measuring Dignity

Frances Hoffman noticed a trend among her staff and family members of patients who passed away after admission to the hospice service. Staff members reported that they did not feel they had enough time too effectively make a difference in a patient’s life when death occurred within 48 hours of admission (Brokel & Hoffman, 2005). Hoffman worked with Jane Brokel to help identify a tool in which nurse managers could measure outcomes for those patients that died within 48 hours of admission. Dignified dying was identified as a result of maintaining personal control and comfort during the end-of-life. The Dignified Dying Nursing Outcomes

Classification (NOC) scale was selected and data was collected on all admissions where death was imminent and again as death becomes more near. After the admission assessment, nursing interventions such as offering emotional support, teaching about deterioration, and providing symptom management were applied. Data comparison of the initial admission assessment and data collected near death showed a significant increase in measureable dignity outcomes. This study is useful to healthcare professionals in assisting patients to identifying their vision of dignity so it may be maintained. However, as the dying process continues, reassessment of dignity is rarely included in protocols. The Dignified Dying Nursing Outcome tool is a valuable tool in any setting: a home death, hospital death or hospice death.

Nursing Interventions Across the Globe

Is dignified dying can occur in any place of death, but is it viewed the same in different countries? Coenen, Doorenbos, and Wilson (2007) set out to identify nursing interventions that promote dignified dying in four countries. A cross sectional survey in hospitals and clinics in

India Kenya, the United States and Ethiopia was conducted. They asked nurses from each country to complete an open-ended survey about the interventions used in their country used to DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 6 promote dignified dying. The results identified interventions and broke them down into three major categories: concerns related to illness, dignity conservation, and social-dignity inventory.

The way the interventions were carried out in each country varied slightly, but the general concept was the same. This study illustrates that dignity is a universal concept that is experienced and promoted around the world.

Nursing Interventions in the United States

Dignity can be defined much more than respect or worthiness. Coenen, Doorenbos, and

Wilson (2006) discovered this phenomenon in the United States while comparing the nursing interventions in Ethiopia, Kenya and India. Nurses in the United States were given a survey that identified nursing interventions used to promote dignity in the dying process. The interventions employed primarily consisted of increasing comfort, listening, pain control, life review and family support. With these interventions it was thought that nurses can help patients and their families have a more meaningful dying process and aid them in making choices for that goal.

Dignity in Professional Practice

Mairis (1993) performed a study with the purpose of exploring the meaning of dignity, clarifying the concept of dignity, and advancing nursing knowledge. A concept analysis was done by examining students’ personal definitions of dignity. Both relevant literature and definitions offered by professionals were reviewed. Findings in the literature, professional definitions, and student nurses’ perceptions of dignity were used to formulate the critical attributes of: maintenance of self-respect, maintenance of self-esteem, and appreciation of individual standards. Antecedents of dignity were found to be: dignity is a human quality; self- advocacy promotes dignity; dignity may be demonstrated by behavior, speech, conduct and dress; and dignity is developed by individual life experiences. Positive self-image was found to DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 7 be a consequence of dignity. The concept of dignity, based upon findings, was then theoretically defined. This study is not very current, but is useful in seeing the development and evolution of dignity. It also only provides an external view of dignity from a student’s perspective. Creating a definition based upon those who actually risk losing dignity would be more useful in practice.

Dignified Death in Children

Poles and Bousso (2011) performed a study in order to further develop the concept of dignified death of children in Brazilian pediatric intensive care units (PICUs). The Hybrid Model for Concept Development was used in order to attempt to define the complex concept. Three phases of concept development were utilized including: theoretical phase (literature analysis), field phase (data collected from interviews of nine nurses and seven physicians), and final analytical phase (synthesizing empiric and theoretical data to finalize the definition).

Antecedents identified were: excellence in clinical practice; identification of children with no possibility of a cure; acceptance of irreversibility of the clinical condition; agreement on prudent practice; communication skills; and confidence to achieve inclusion of the family. Defining attributes identified were: recognizing the benefits of the natural evolution of the illness; respecting the social-cultural aspects; establishing a partnership between team and family; providing physical comfort; and promoting well-being. Consequences identified were: minimized suffering; reciprocity in relationships; confidence of both professionals and family; and valorization of esthetic care. A final definition for dignified death of children in PICUs was created using the findings. This study is helpful to the nursing practice by providing a definition for the difficult and complex subject of dignified death in children. It could help nurses better assess children at the end-of-life and create better quality of care in PICUs.

Defining Attributes DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 8

According to Avant and Walker (2005), defining attributes are prominent characteristics that are recurring in texts and are most frequently associated with a concept.

Recurrent themes were discovered in literature over dignified death and were identified as defining attributes. The defining attributes were identified as: rights and responsibilities, individual standards, control, communication, and recognition of illness progression.

Rights and Responsibilities

Dignity is strongly associated with ethics and human justice. Formalized in 1948, the

Universal Declaration of Human Rights recognizes “the inherent dignity” and the “equal and unalienable rights of all members of the human family” (United Nations, 2011). Dignity is also considered a human right that every individual is deserving of within the nursing profession.

Dignity is explicitly mentioned in the first provision of the American Nurses Association’s

(ANA, 2001) Code of Ethics for Nurses. It states, “the nurse, in all professional relationships, practices with compassion and respect for inherent dignity, worth and uniqueness of every individual.” Healthcare professionals accept the role of caregiver and consequently also assume the responsibility to preserve dignity, especially in those cases where the patient is in the dying process and may be unable to maintain dignity on their own.

Individual Standards

Frequent use of the words individual, personal, self, and diverse was a common in relevant literature. Dignity is developed through an individual’s unique life experiences is a key aspect of dignity. Individual social-cultural aspects—background, economic status, culture, religion, spirituality, etc—can shape individual views on dignity. Due to diverse patient populations, cultural and social norms including aspects of dignity related to self-esteem, habits, DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 9 and expectations (Anderberg, Lepp, Berglund, & Segesten, 2007) should be assessed and lead to individualized care in order to meet the patient’s needs and preserve pride and dignity.

Control

Control was frequently mentioned in literature. Fenton and Mitchell (2002) suggest that dignity is promoted when individuals are allowed to perform to the best of their abilities, exercise control, make choices and feel involved. Autonomy and control encourage positive self- esteem and dignity. However, actively dying patients may not be able to exercise control over their situation. Control for these patients can be maintained when healthcare members show respect for patients and loved ones and ensure personal needs are met (Webster & Bryan, 2009).

Nurses act as patient advocates to make certain patient and family wishes are pursued. Following advanced directives gives patient’s control over their situation, even when they may not be capable of verbalizing their wishes.

Communication

Communication is an important characteristic of dignity. Anderberg, Lepp, Berglund and

Segesten (2007) address this as sensitive listening and stress the value of communication about daily life, needs and limitations, thoughts about the future and death, reorientation, and adapting to dependency. Dignity can be achieved with honest, therapeutic communication. Practitioners must be skilled with good verbal and non-verbal communication and must be assertive. Poor or inappropriate communication can detract from the maintenance of dignity (Webster & Bryan,

2009).

Recognition of Illness Progression

Healthcare professionals must be able to recognize irreversible conditions and must accept and allow the natural evolution of the illness to lead to death. Suffering for both the dying DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 10 individual and the family can be minimized by not prolonging a known irreversible situation that, without life sustaining measures, will result in imminent death (Poles & Bousso, 2011). In situations where palliative care and/or hospice have been decided upon, treatment is limited to interventions that reduce symptoms and promote comfort, especially in regards to relief from pain, dyspnea, and nausea (Coenen, Doorenbos, & Wilson, 2007) in order to promote dignity.

Model Cases: Death With and Without Dignity

Dying with dignity: the optimal death

John is an 80-year-old retired attorney. Over the past few years John has experienced forgetfulness that has gotten progressively worse. He found himself lost while driving his car one day, which scared John. Shortly after, John was sitting in the doctor’s office when the physician diagnosed him with Alzheimer’s disease. John’s physician painted a grim picture for him that often ends in a nursing facility, as he will become unable to independently dress, groom, or even eat. John took this opportunity to construct his living will and discussed it with his family and children. He included his desire not to have life-saving interventions once he is no longer able to make decisions on his own.

Five years later, John is in a local nursing facility. His disease has progressed to a point in which he is no longer able to feed himself. When his loving wife was asked to make a decision regarding artificial nutrition, she was able to decline with the guidance of John’s living will and know that she was respecting her husband’s wishes. John died peacefully in his sleep two weeks later, surrounded by his loved ones. He was laid to rest with dignity by having his final wishes carried out.

John’s death was dignified. His desires were met. He had time to put his affairs in order and experience much love and affection from his family. He was able to control and choose his DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 11 desired treatments before he was unable to make independent decisions and made decisions easier on his wife. He died in his sleep, free from symptoms and hopefully pain.

When death is not dignified

Karen is a 26-year-old female who—up until recently—lived an active life full of sports and parties. A year ago on her way home from a friend’s house late at night, her car was tragically struck by another causing a head and spinal cord injury, leaving her paralyzed from the neck down and completely dependent upon others for care. Karen’s parents took their daughter home and quickly realized that they were not able to provide adequate care. The accident left

Karen unable to eat, speak, or breathe on her own. The stress of Karen’s care weathered her parents and she was placed in a skilled nursing facility with around-the-clock care.

Karen’s parents notice when they visit that her hair is never brushed and her fingernails are always dirty. Karen’s parents do not mention anything to the staff out of fear that their daughter will be punished.

During every day care for Karen, the nurse aide rolls her on her side to change her soiled brief. Now, while Karen is completely exposed, the nurse aid realizes she must step away to grab barrier cream and leaves Karen’s bedside. Karen’s ventilator disconnects and she dies nearly naked, soiled, and alone. Karen’s parents are mortified of her untimely and undignified death.

This did not have to occur. Karen might not have had time to make her views of dignity or her wishes known, however, the staff could have been more supportive to Karen’s family so they wouldn’t fear repercussion if they advocated for her. Karen did not die with personal control or comfort. The tool used by the Hospice of North Iowa in the study conducted by Brokel and

Hoffman (2005) would have applied well to Karen’s situation regardless of her death not being DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 12 imminent upon admission and could have identified the great need of nursing interventions to provide dignity for Karen.

Antecedents

Walker and Avant (1995) stated that antecedents are events or incidents that must occur prior to the occurrence of the concept and are factors that precede or cause the concept. Four main antecedents were found: responsibility, professional knowledge and skills, personal reflection, and communication and agreement.

Responsibility

In order to maintain dignity during death the nurse must take on responsibility for the patient (Anderberg, Lepp, Berglund, & Segesten, 2007). This includes being an advocate for the patient and their family and adapting to the individual needs of a patient. To provide dignified care, caregivers must take on the moral responsibility to commit to others.

Professional knowledge and skills

Caregivers for dying individuals must be knowledgeable about the patient and the illness in order to promote patient dignity. This includes understanding the patient as an individual and about the progression of the illness. Healthcare professionals should use all available resources necessary in order to assess and cater to the dying individual and the family’s current physical, emotional, social, and spiritual needs (Poles & Bousso, 2011). Professional knowledge can also lead to acceptance when one understands that a condition is irreversible and will lead to imminent death, and that treatments may only lead to prolonged suffering.

Personal Reflection

Patients, families, and caregivers must devote time to personal reflection in order to preserve dignity. Patients and families must reflect upon their needs and wishes and must—to the DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 13 best of their ability—make these wishes known. In order to possess dignity, patients, families, and nurses must value and believe they are worthy of dignity. Patients must be willing to accept care and the likelihood of dependency on others in this time of vulnerability. In order to provide dignified care, caregivers must develop their own character, integrity, and personal dignity.

Through reflecting upon their own actions nurses are able to integrate thoughts, feelings, and actions in daily caring situations. Without this kind of reflection dignity may occur accidentally, but not as a conscious action (Anderberg, Lepp, Berglund, & Segesten, 2007).

Communication and Agreement

Communication between the patient, family, appointed decision-makers, and all healthcare providers must be effective and include agreement regarding the change from curative to palliative treatment whenever possible. Healthcare professionals must have effective communication skills to allow them to interact with families in end-of-life situations. This includes being empathetic, sensitive, and honest, and allowing the family to express their anxieties, questions, and doubts (Poles & Buosso, 2011).

Consequences

Consequences occur as result of the occurrence of the concept (Walker & Avant, 1995).

Consequences of a dignified death include: minimal suffering, reciprocal relationships, and a positive image.

Minimal suffering

“The result of a dignified death is relief, for both the child [the dying individual] and the family, from the suffering associated with suspending death when life is no longer possible without life-sustaining measures” (Poles & Buosso, 2011, p. 704).

Reciprocal Relationships DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 14

Dignity is reciprocal. Although individuals in end-of-life situations may not be able to behave with dignity, being treated with dignity by others enhances their dignity. The end-of-life experience is shared between the staff and family and reflects an ongoing exchange. A dignified death will result in a mutual feeling of trust between the family and healthcare staff. Healthcare workers feel genuine concern for the patient’s wellbeing, which leads the family to perceive that they and their loved one have been offered the best care possible (Poles & Bousso, 2011).

Positive Image

Mairis (1993) suggests that if dignity is maintained, a positive self-image may result and the individual may be described as poised or composed and experience feelings of value, worth, and pride. This cannot be applied directly to end-of-life situations, due to the dependency experienced at the end-of-life and the inevitable outcome of death. However, if death is dignified the patient’s image will be maintained, as they would like to be remembered and as the loved ones would like to remember them. A dignified death results in the memory of the individual as they once were, and not of the traumatic experience of a painful, undignified death. Poles and

Bousso (2011) reference this as esthetic care, which occurs when the treatment focus changes from the surface of the experience, to understanding the meaning of the moment.

Dignity: An operational definition

Dignity is an inherent characteristic and human right, therefore healthcare professionals have a responsibility to promote a dignified death to all individuals under their care. A dignified death is an individual experience and may be different for each patient. It involves allowing the individual and family members to experience as much control over their situation as possible.

This can be achieved when a healthcare professional with appropriate knowledge and skills accepts the responsibility of an individual at the end-of-life. A dignified death requires proper DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 15 communication, agreement, and personal reflection of all individuals involved. A dignified death results in minimal suffering, a reciprocal relationship, and a positive image.

Conclusion

It is easy to see that dignity is a concept that is vital to human life including the death process. Regardless of the patient’s age measures must be taken by health care professionals to ensure that as death draws near dignity is not sacrificed. It is imperative that the patient in the dying process maintains comfort, control and self-image. Lack of any of these characteristics can lead to suffering. It is the responsibility of the healthcare team to evaluate each patient in the dying process on an ongoing basis to ensure all possible interventions that can preserve dignity are being enforced. Health care professionals can use tools, such as the tool described in the

North Iowa Hospice study, to help identify the need and progress towards dignity. DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 16

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Appendix DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 18

Empirical Referents DIGNITY DURING THE DYING PROCESS: A CONCEPT ANALYSIS 19

(Brokel & Hoffman, 2005, p. 40)