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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
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
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
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.
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
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
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
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,
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
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
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
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
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 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
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.
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Appendix
Empirical Referents
(Brokel & Hoffman, 2005, p. 40)