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Dying with Dignity

Contact Hours: 2.5

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Contact Hours: 2.5

This online independent study activity is credited for 2.5 contact hours at completion.

Course Purpose

To provide healthcare professionals with knowledge on dignity, how it is affected by death anxiety and spirituality, and to review patient-centered care for the terminally ill patient. 

Overview

Human dignity is the core of nursing. It manifests when a nurse respects a patient when providing care. The nurse must provide care to the dying patient and their family members that conforms with cultural beliefs and habits. Because death is an unavoidable phenomenon that everyone will experience regardless of health care that is provided, human dignity with respect to end-of-life care must be appreciated. Helping terminally ill patients and their families manage decisions regarding death is a central responsibility of nursing, and it is essential that nurses be given better tools with which to deliver spiritual care. The nurse must provide dignified, spiritually astute (outside of the religious realm), comprehensive care to the dying patient to allow death with dignity to occur. 

Objectives

Upon completion of the course, the learner will be able to:

  1. Define human dignity as it relates to the dying patient
  2. Describe attributing factors to death anxiety, and ways to assist the patient and supporters in mediating the effects.
  3. Review the six attributes to spirituality, and how they influence the patient’s and supporter’s perceptions of death.
  4. Review the American Nurse Association Code of Ethics stance on assisted suicide.

Policy Statement  

This activity has been planned and implemented in accordance with the policies of FastCEForLess.com. If you want to review our policy, click here.

Disclosures 

Fast CE For Less, Inc. and its authors have no disclosures. There is no commercial support. 

Fast Facts: Dying with Dignity

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Introduction

Dignity is a human right and it is a core nursing value. Death is inevitable, and it is something that we all will eventually experience. For the terminally ill, the realization of a drastically reduced life span can bring about death anxiety. Death anxiety, which is described as concerns and fears related to the process of death and dying, and lack of spirituality are the main factors that can cause a loss of dignity. ¹ This course seeks to define dignity and death anxiety and recognize attributes of spirituality to better prepare the healthcare professional to care for the terminally ill patient.

Dignity

Dignity is derived from the Latin word dignities, which means originality and value. ⁴ Familial and cultural aspects are involved with the formation of dignity, which is synonymous with vocation, goal, and value.

There are two types of dignity⁷: social dignity and human dignity. Human dignity is an independent concept that cannot be compared or measured, as it is an intrinsic personal value of an individual. Social dignity is a part of human dignity, but is situation dependent, awardable, comparable, and acquirable through social interactions.

There are also four aspects of dignity⁷: dignity as merit, dignity as moral stature, dignity of identity and dignity of Menschenwurde.

• Dignity as merit relies on the position and social status of the individual.
• Dignity as moral stature relies on the thoughts and actions of the individual and is composed of self-respect and respect for others.
• Dignity of identity relies on self-image and the respect for mind and body and is created by present and future social interactions with others.
• Dignity of Menschenwurde relies on the need to belong. This aspect of dignity is related to human rights without consideration of social position, race, and gender.

Human dignity is the core of caregiving, and in 1998 the Nurse Association of America identified human dignity as one of the five core nursing values. Human dignity manifests when a nurse respects a patient when providing care, and some scholars believe that maintaining dignity while providing care to the terminally ill can be more important than the patient’s failing health.

Death is an unavoidable phenomenon that all humans must experience regardless of health care that is provided, and as such, human dignity with respect to end-of-life care must be appreciated.³ Providing care for the dying patient and their family that conforms to cultural beliefs and habits is one of the professional roles of the nurse. The nurse must provide culturally competent, comprehensive care to the dying patient to allow death with dignity to occur. Maintaining dignity in the final moments of life is important, and the nurse must respect the healthcare choices and decisions of the terminally ill patient. As the end of life nears, the patient and family can be exposed to high levels of stress.

Death Anxiety

Death anxiety; concerns and fears related to the process of death and dying, is one of the main factors that can cause a loss of dignity and is also a major reason why terminally ill patients request euthanasia and assisted suicide. Death anxiety is a disorder that causes extreme levels of preoccupancy with death or death related situations that can disrupt normal life activities. Although helping terminally ill patients and their family members manage death is a central responsibility of nursing worldwide, and an increasing body of literature suggests that death anxiety contributes to important emotional and behavioral outcomes, theoretical and empirical background of the concept is limited in nursing literature.
An extensive online literature search on death anxiety was conducted and found that using the evolutionary method of concept analysis was most beneficial in describing death anxiety. Rogers inductive method of concept analysis involves identifying the concept of interest and related terms, selecting a relevant setting and sample for the data collection, collecting data related to concept attributes and contextual base, analyzing the data and identifying the concept exemplar, and finally developing implications and hypotheses for further concept development. Use of the Rodgers approach is well suited for the concept of death anxiety because it is context dependent and may be interpretable.

A review using Roger’s Method⁶ found six attributes of death anxiety which include:

Cognitive:Cognition includes beliefs about death and the death experience. One develops enduring cognitive structures as a result of life experiences, and as much as these structures are living focused, they will be threatened by the concept of death. If death is integrated or becomes a part of core cognitive structures, the fear surrounding it is reduced. Cognitive structures, which are exhibited by one’s differences in needs for order and structure, tolerance for ambiguity, and managing uncertainty, impact one’s fear and degree of death anxiety. Important cognitive components of death anxiety include:
– Attitudes
– Conceptual ability to predict and anticipate the future
– Awareness of the salience of death
Developmental:The level of death anxiety varies according to one’s developmental stage. Developmental theorists describe the life journey as a healthy, vital process with specific age-appropriate identity crises that lead to increased ego and maturation when resolved. Identity crises are characterized by high levels of apprehension and uncertainty, and unresolved self-relevant transformations. Age has been shown to be a significant factor in the perception of death anxiety. Research has shown that death anxiety is higher among the middle-aged, declines during later adulthood, and then stabilizes in old age. Research also found that middle-aged to older people experience higher levels of death anxiety as a result of differences in their desired and expected time left to live.
Emotion:Death anxiety is closely related to fear of the termination of life, and stems from fundamental limbic structures that are necessary for survival. The physiologic aspects of death anxiety include the brain system’s amygdala and related structures. These structures are involved in the development of implicit fear memories. Also, the hippocampus and related cortical areas are involved in the development of explicit fear memories. The two emotional memory systems are activated together by the same stimuli. As a result, the perception of fear that is associated with death fuses with cognitive processes and forms memory structures. Emotional memory structures, both implicit and explicit, play important roles in the signaling and regulation of fear.
Experiential:Experientially, death anxiety is typically not a part of conscious experience. Many studies that have manipulated death awareness have provoked heightened death anxiety in subjects. Furthermore, conscious death anxiety leads to active defenses, such as distractions that deal with the fear of death. The distractions attempt to lower conscious death anxiety but do little to manage unconscious death anxiety which will eventually manifest through other avenues.
Sociocultural Shaping:Cultures differ in their ways of articulating and giving meaning to death. One of the main responsibilities of culture is to provide protection against the knowledge and fear of death. Cultural protection is created symbolically in a blend of learned and shared meanings and beliefs, many of which originate in conventional religious dogma and ritual.
Source of Motivation:Death anxiety is a source of motivation and is fundamental everyone. It occurs after one can conceptualize death as a complex symbol and is usually denied or repressed.  Death anxiety often manifests after an accumulation of information or failed efforts geared towards overcoming death.

When death anxiety is aroused, it can become harmful to terminally ill patients and family members.⁹ Initially, the terminally ill patient and/or family members may respond positively to a terminal diagnosis by fully embracing life, but over time many will retreat to a more defensive thought process where they try to protect themselves and as a result lose prospective on life quality, instead focusing on insignificant issues in their lives and squandering valuable experiences. Defensive reactions to death are demoralizing and can cause cynicism, hateful attitudes, and depression. Defensive reactions include but are not limited to⁹:

Accumulation of Power and Wealth:Is a misguided belief that power and wealth are equal to invincibility. One may use the accumulation of power and wealth as a defense mechanism by attempting to control others for financial success. Death anxiety may be temporarily relieved by this method; however, fears of death still exist on an unconscious level and may intensify as more wealth and power is accumulated.
Addictive Couple Bonds:Are self-limiting fantasy bonds that form safety, security, and togetherness, but reject genuine closeness with loved ones. The terminally ill patient and or family members tend to relive childhood trauma in a current relationship, and at the same time, believe that they can escape death by progressing in the relationship. The relationship has reciprocal roles, such as dominant vs. submissive, or parent vs. child. Both participants in the relationship find it hard to disengage from it because the patterns in the relationship provide and illusion of safety and wholeness, which leads to a sense of immortality on an unconscious level.
Denial:Manifests in two forms; the pursuit of literal immortality and symbolic immortality.
• Literal immorality is sought in religion and is an unrealistic negotiation of continued life when death is imminent.
• Symbolic immorality occurs when the terminally ill attempts to live on through creative productions, such as investing in causes or in children. Investing in children only reduces death anxiety when children adopt the world view or religious beliefs of the terminally ill.
Preoccupation with Pseudo Problems:A terminally ill patient or family member may occupy themselves with melodrama and pseudo-problems to avoid real issues in their lives. They often overreact to simple, everyday events with fear, anger, and panic.
Self-Denial and Micro Suicide:A term coined from a psychologist, is the practice of ‘small suicides’ to gain mastery over death. It is a self-destructive defense against the fear of death that occurs from withdrawing feelings and ambitions from personal goals and pursuits in order to reduce vulnerability that is anticipated during the death experience. By deadening themselves in advance, the transition from living to dying is ignored.
Self-Nurturing:Substance abuse and addictive behaviors contribute to a pseudo-independent attitude of self-sufficiency. A terminally ill patient or family member uses self-nurturing habits to relieve death anxiety and emotional pain.
Vanity:Is an exaggerated positive view of oneself that compensates for feelings of inferiority or inadequacy. As a defense mechanism to death anxiety, vanity creates the feelings of specialness and feelings of immunity to the fate of death, and that death happens to others, but not to oneself.

Because death is not preventable, when fears surface the terminally ill patient and family members should take time to face the reality of identity and mortality. They should be allowed to express their emotions on fear, sadness, and anger. As a healthcare provider, the nurse should also assist the patient and family members to communicate their thoughts and feelings while maintaining cultural beliefs and respecting dignity. Nurses must be able to provide end-of-life care for patients from various cultural backgrounds because consideration of culture in caring for dying patients not only provides them with a death with dignity, but also can create spiritual peace and hope for the patient.

Spirituality

Having the ability to define spirituality in a way that is congruent for most people is crucial to end-of-life research. Unfortunately, a common definition of spirituality has not been achieved. A recent literature review attempted to define spirituality through a framework consisting of its most common attributes. By reducing spirituality to common attributes, patients, researchers, and healthcare providers can describe spirituality according to each attribute individually, which taken together can form a more comprehensive view of spirituality.³ Literature review findings revealed that spirituality within the context of attributes was prevalent to the terminally ill and family members.

The following were identified as spiritual attributes:

Beliefs:Beliefs include religious and spiritual views about life and the afterlife. Belief systems are individualized as to the degree to which one believes or engages in religious practice. One person may use prayer and faith to cope with a terminal illness, and another may have no religious experience. Beliefs are often dynamic after learning of a terminal illness diagnosis, and depending on the belief system, the thought of after life can be comforting or frightening.
Connections:Spiritual connections include valued relationships or newly experienced events that the terminally ill have with themselves, nature, others, or a transcendent being or realm. Most often, spiritual connections have to do with relationships that are shared with family members and focus on how those relationships are impacted by the impending loss of life, and the need to repair damaged relationships before death occurs.
Meaning:Meaning includes the meaning of life and significant events, the illness itself, or dying. Often, in search for meaning the terminally ill or family member will revisit old memories and reinterpret them to answer current questions or find strength. The process of searching for meaning is dynamic and ongoing because it can change as new information regarding the illness or personal situations is introduced.  As a result, meaning is rarely resolved until death.
Values:Time, traditions, and relationships are things taken for granted but become more valuable after learning of a terminal illness. The terminally ill and family members often long for more time to create valuable memories. Time for a final family vacation or a family photo can produce valuable memories that surviving family members can hold onto after the death of the terminally ill.
Self-Transcendence:The process of self-transcendence is the ability to move toward growth, acceptance, and enjoyment despite impending death. Self-transcendence is linked to meaning-making and enhanced connections with others. Successful self-transcendence appears as a positive emotional experience.

Spirituality is an important part of one’s day-to-day experiences. The five spiritual attributes can frame the essence of spirituality. Framing spirituality according to common attributes that can be discussed individually offers one creative way of reducing the complexity of spirituality into manageable increments, which can greatly improve the delivery of spiritual care.

Assisted Suicide

Suicide consideration in the general population is often treated as a symptom of mental illness. Assisted suicide as a reasonable choice for the terminally ill however, is a subject of ongoing debate. Although legal and policy descriptions vary by state, nurses continue to care for patients who express the desire to die. Nurses who accept that assisted suicide can be a rational act must take great care that requests do not arise from depression or from another mental disorder that might be alleviated by treatment and alter one’s desire for a hastened death. Careful assessment of mental functioning when a patient expresses a desire to die is essential. Oregon law, which allows a physician to assist a patient in dying, requires a physician to examine a patient if he/she believes a mental disorder is influencing the patient’s decision, and then a referral must be made for patient evaluation. ²

Clinical assessment of the terminally ill patient’s mental state following a request for assistance in dying resembles the assessment of suicide risk in depression, which includes patient demographics and health characteristics, observation of the patient’s behavior, reports from family members and people close to the patient, and an assessment of symptoms. Like the suicide risk assessment, the clinical assessment also relies heavily on the patient’s self-report of feelings and intentions. Death itself is often not the primary goal, but it is perceived as the only way to end psychological or physical suffering. Uncovering whatever mixed feelings, a terminally ill patient might have about wishing for assistance in dying can help the nurse identify and explore other ways of addressing the problem the patient is trying to eliminate.

There are many arguments for and against assisted suicide. The main justification for assisted suicide is that the terminally ill patient is considered rational in concluding that death is the only way to achieve a reasonable goal. ⁶ Respect for patient autonomy and the prevention of unnecessary, unwanted suffering are the two main justifications identified in the literature for allowing assisted suicide to occur. The main argument against assisted suicide is the sacredness of life and the injustice in deliberately ending it. Likewise, saving and improving lives are among the core values of health care, and health care professionals are morally bound to the preservation of life. Many argue that health care providers should not assist in deliberately bringing about a death. Five states (California, Colorado, Oregon, Vermont, and Washington) and Washington, DC currently have laws allowing physician assisted suicide, while 37 states have laws prohibiting assisted suicide. When confronted with a request for assisted suicide from a patient, nurses must formulate a plan of care regardless of whether assisted suicide is legal in their state. The nurse must make an overall assessment which includes the patient’s mental condition and social supports, as well as physical condition and prognosis. Nurses must also be careful to consider the patient’s cultural background and spiritual beliefs since all faith traditions consider the passage from life to death a critically meaningful process.

While nurses continue to create and carry out care plans for patients, from an ethical perspective it remains unclear what role assisted suicide should play in a plan of care. The American Nurses Association (ANA) however, takes the position that participation in assisted suicide is a direct violation of the ANA Code of Ethics. The American Medical Association holds a similar position, while the American Public Health Association supports the terminally ill patient’s right to request and receive support from healthcare providers in pursuit of assisted suicide in states where it is legal.

The ANA position statements on Euthanasia, Assisted Suicide, and Aid in Dying acknowledges that some nurses work in states where assisted suicide is legal, and states that nurses ‘can choose to be involved in providing care to a patient who has made the choice to end his/her life or may decline to participate based on personal moral values and beliefs.’ ⁸For nurses who decline to participate, the ANA position statement refers to the Oregon Nurses Association guidelines, which state that the nurse can ‘conscientiously object to being involved in delivering care , but the nurse is obliged to provide for the patient’s safety, to avoid abandonment and withdraw only when assured that alternative sources of care are available to the patient.’ ANA guidance is clear that even where assisted suicide is legal, individual nurses can opt out of involvement based on personal conscience, so long as the patient’s needs are accommodated through referral.

Patient-Centered Care

Care coordination is the organization of events that center around the patient. It involves all healthcare providers involved with a patient’s plan of care to accomplish safe and effective outcomes. A nurse’s coordinated approach to patient care supports patient-centered care as the patient transitions between different settings, such as the transition to hospice where palliative care; the compassionate and comprehensive practice of alleviating suffering from physical, psychosocial, and spiritual symptoms for terminally ill patients and their family members occurs.

Discussion

Confronting death and the anxiety created by knowledge that it is inevitable is a universal psychological quandary for everyone. For health care providers, death is an ever-present reality despite increases in technologically advanced health systems, longer patient survival rates, and cures from life-threatening diagnoses. Helping terminally ill patients and their families manage death is a central responsibility of nursing worldwide and it is essential that nurses be given better tools with which to deliver spiritual care. Framing spirituality according to common attributes that can be described individually offers one creative way of reducing the complexity of spirituality into manageable increments, which could greatly enhance delivery of spiritual care.

Conclusion

Dying with dignity is an important aspect of clinical practice and nursing care. Caregiving is the basis of the nursing occupation and is a very general concept and encompasses all aspects of patient care, especially maintaining the dignity of the patient at the end of life. Dying with dignity has a positive impact on the reduction of fear and psychological distress in terminally ill patient and their family members, and respecting the dignity of the patient through spirituality, and with the use of pain control, relaxation, and creating a sense of peace results in the reduction of the terminally ill patient’s suffering and prepares them for a comfortable, peaceful death. Based on this positive impact, the clinical aspects of patient dignity at the end of life in conjunction with cultural beliefs should be practiced by all healthcare providers who provide care to the terminally ill patient.

References
  1. An, E., Lo, C., Hales, S., Zimmermann, C., & Rodin, G. (2018). Demoralization and death anxiety in advanced cancer. Psycho-Oncology, 27(11), 2566-2572. doi:10.1002/pon.4843
  2. Firestone, R. W. (2018, May 18). Death anxiety. Retrieved from https://www.psychologytoday.com/us/blog/the-human-experience/201805/death-anxiety
  3. Gerber, L. (2018). Understanding the nurse’s role as a patient advocate. Nursing, 48(4), 55-58. doi:10.1097/01.nurse.0000531007.02224.65
  4. Hamric, A. B., Schwarz, J. K., Cohen, L., & Mahon, M. (2018). Assisted Suicide/Aid in Dying. AJN, American Journal of Nursing, 118(5), 50-59. doi:10.1097/01.naj.0000532831.78142.40
  5. Hemati, Z., Ashouri, E., AllahBakhshian, M., Pourfarzad, Z., Shirani, F., Safazadeh, S., … Ziyaei, M. (2016). Dignity and Assisted Dying. Journal of Clinical Nursing, 25, 1218-1228. doi:10.1111/jocn.13143
  6. Lau, B. H., Wong, D. F., Fung, Y. L., Zhou, J., Chan, C. L., & Chow, A. Y. (2018). Facing death alone or together? Investigating the intgerdependence of death anxiety, dysfunctional attitudes, and quality of life in patient-caregiver dyads confronting lung cancer. Psycho-Oncology, 27, 2045-2051. doi:10.1002/pon4773
  7. Scott, P. A. (2017). Key Concepts and Issues in Nursing Ethics. Basingstoke, England: Springer.
  8. Snyder Sulmasy, L., & Mueller, P. S. (2017). Ethics and the Legalization of Physician-Assisted Suicide: An American College of Physicians Position Paper. Annals of Internal Medicine, 167(8), 576. doi:10.7326/m17-0938
  9. Solomon, S., Greenberg, J., & Pyszczynski, T. (2015). The Worm at the Core: On the Role of Death in Life. New York, NY: Random House.
  10. Tong, E., Deckert, A., Gani, N., Nissim, R., Rydall, A., Hales, S., … Lo, C. (2016). The meaning of self-reported death anxiety in advanced cancer. Palliative Medicine, 30(8), 772-779. doi:10.1177/0269216316628780
  11. Ulrich, C. M., & S., L. (2018). Nurses’ Role in Assisted Suicide/Aid in Dying. AJN, American Journal of Nursing, 118(9), 10. doi:10.1097/01.naj.0000544953.52249.c6
  12. Vogelstein, E. (2017). Evaluating the American Nurses Association’s arguments against nurse participation in assisted suicide. Nursing Ethics, 26(1), 124-133. doi:10.1177/0969733017694619
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