1. The Experience of Loss, Death, and Grief
Chapter 36
The Experience of Loss, Death, and Grief
Loss and grief are experiences that affect not only patients and their families but also students and health care professionals.
Patients and families have great difficulty accepting and managing loss and death.
Nurses play a vital role in helping patients and families cope with things that cannot be changed and facilitate a peaceful death.
You need to know that you are capable of providing the asset most valued by patients and family members at the end of life: a compassionate, attentive, and patient-centered approach to care.

2. Scientific Knowledge Base: Types of Loss
Developing a personal understanding of your own feeling about grief and death will help you better serve your patients.
Actual losses
Necessary losses
Maturational losses
Situational losses
Perceived losses
Knowledge of the types of grief helps nurses identify appropriate interventions.
Necessary losses are a part of life. These cause us to undergo some type of change. When a loss occurs, oftentimes it can be replaced by something different or better.
Maturational losses are a type of necessary loss and include those changes that occur across the life span.
Unnecessary losses are uniquely defined by the person experiencing the loss and are less obvious to other people.
A situational loss is sudden and unpredictable.
An actual loss occurs when a person can no longer feel, hear, or know a person or object.
A perceived loss is defined by the person experiencing the loss. This is often less obvious to others but is real to that person.
Death is the ultimate loss, and it is part of the continuum of life.
[Ask students to reflect on their own understanding about grief and death in preparation for helping their patients.]
[See also Table 36-1 on text p. 709 Types of Loss.]

3. Case Study
Mrs. Kelly is 79 years old and is in end-stage heart disease secondary to diabetes mellitus. Her mobility has declined greatly because of shortness of breath, poor food intake, decreased strength, and lack of oxygen. She takes pain medication for severe back and joint pain and has trouble with constipation.
She is now in the intensive care unit for chest pain and congestive heart failure.
Mrs. Kelly no longer wants to be hospitalized for her medical conditions, and she wants to go home to die. Mrs. Kelly is being evaluated for home hospice care and will temporarily receive home care.
[Discuss with the class: Mrs. Kelly seems to have accepted that she will die soon. What support could you offer to her?]

4. Scientific Knowledge Base: Grief
Grief = An emotional response to a loss, manifested in ways unique to an individual based on personal experiences, cultural expectations, and spiritual beliefs.
Normal (uncomplicated)
Complicated: exaggerated, delayed, masked
Anticipatory
Disenfranchised (aka marginal or unsupported)
Coping with grief involves a period of mourning. Bereavement involves both grief and mourning.
Normal grief is uncomplicated. This type of grief has a known cause and can help the person to mature and develop coping methods to deal with future losses.
In complicated grief, a person has a prolonged or significantly difficult time moving forward after a loss.
Anticipatory grief occurs before the actual loss or grief occurs.
Disenfranchised grief occurs when a relationship to a deceased person is not socially sanctioned and cannot be openly acknowledged or publicly shared. Examples of this include the death of a very old person, an ex-spouse, or a gay partner.
Ambiguous loss, a type of disenfranchised grief, occurs when the lost person is physically present but is not psychologically available, as in cases of severe dementia or severe brain injury.

5. Grieving
When caring for patients who have experienced a loss, facilitate the grief process by helping survivors feel the loss, express it, and move through their grief.
Loss comes in many forms based on the values and priorities learned within a person’s sphere of influence.
The type and perception of the loss influence how a person experiences grief.
[Ask the class: What are some influences on grieving? Discuss family, friends, religion, society, and culture.]

6. Case Study (cont’d)
Mrs. Kelly lives with her husband of 54 years. Her daughter, Lilly, lives near her parents and visits them every day. Lilly does not agree with the plan to begin hospice care. She cannot accept her mother's plan to “give up.”
Mr. Kelly does not understand hospice and is not sure if he will be a good caregiver.
As we go through the chapter, consider grief and loss as they pertain to Mrs. Kelly’s husband and daughter.

7. Quick Quiz!
1. You are caring for a patient who is depressed because the only child has gone away to college. The nurse will assess this type of depression as A. Actual loss. B. Perceived loss. C. Situational loss. D. Maturational loss.
Answer: D

8. Theories of Grief and Mourning
Kübler-Ross’ Stages of Dying (DABDA):
Denial
Anger
Bargaining
Depression
Acceptance
Although most grief theories describe how people cope with death, they also help to explain responses to other significant losses.
Kübler-Ross developed this theory in 1969.
Survivors move back and forth through a series of stages and/or tasks many times, possibly extending over a long period of time.
Theorists describe grief as stages, tasks, and processes undertaken by survivors to successfully complete their bereavement and adapt to life with a loss.

9. Bowlby’s Attachment Theory
Numbing
Protects the person from the full impact of loss
Yearning and seeking
Tearing, sobbing, and acute distress
Disorganization and despair
Person examines loss and expresses anger
Reorganization
Person begins to accept change, new role or skills
Bowlby’s theory, developed in 1980, describes the experience of mourning. It has four phases, and people can move in and out of each phase.
Numbing lasts from a few hours to a week or two.
Yearning and seeking can last from months to years.
In disorganization, a person endlessly examines how and why the loss occurred or expresses anger at anyone who seems responsible for the loss. This stage gradually gives way to acceptance of the loss.
Reorganization may require a year or longer.

10. Case Study (cont’d)
Nursing student Jennifer Brown will be caring for the Kelly family as she learns how to give care in the home. Before Jennifer meets the Kelly family for the first time, she reviews the information essential for making a thorough assessment.
Jennifer worries that she will be asked questions for which she has no answer. She feels more comfortable talking about heart disease than about end-of-life decisions and care.
[Ask the class: What are some strategies for dealing with questions for which we have no answer? Ask open-ended questions to explore the family’s concerns.]
It is important to listen carefully and validate the family’s feelings.
Above all, Jennifer should honor patient and family preferences, culture, and religious traditions during this meaningful event in the Kelly’s family history.
[Ask the class: What other concrete steps can Jennifer take to support Mrs. Kelly and her family? Discuss.]

11. Worden’s Grief Tasks Model
Task I: Accept the reality of the loss
Task II: Experience the pain of grief
Task III: Adjust to a world in which the deceased is missing
Task IV: Emotionally relocate the deceased and move on with life
This model was developed in It suggests that persons who mourn are able to be actively involved in helping themselves. Outside interventions can assist them.
This model suggests that it may take 1 year to work through the grief process.

12. Additional Grief Theories
Rando’s “R” Process Model: grief as a series of processes instead of stages or tasks
Recognizing the loss, reacting to the pain of separation, reminiscing, relinquishing old attachments, and readjusting to life after loss
Reminiscence is an important activity in grief and mourning.
Dual process model: moving back and forth between loss-oriented and restoration-oriented activities
Post modern grief theories
Rando’s R Process Model (1993) describes a process for mourning and is applicable to many types of loss.
In the dual process model, the extent to which an individual engages in loss or restoration-oriented processes depends on factors such as personality, coping styles, and cultural practices.
More recent grief theories take into consideration that human beings construct their own experiences and truths differently and make their own meanings when confronted with loss and death.
No one’s grief follows a predetermined path.

13. Nursing Knowledge Base
End-of-Life Nursing Consortium (ELNEC)
American Nurses Association (ANA)
Hospice and Palliative Care Nurses Association
American Society of Pain Management Nurses
American Association of Critical Care Nurses
Nurses need to develop a plan of care to assist patients and family members who undergo loss, grief, or death experiences. Organizations have information readily available to assist nurses with this planning.
The End-of-Life Nursing Consortium (ELNEC) provides basic and advanced curriculum for loss, grief, death, and bereavement.
The American Nurses Association (ANA) has developed the Scope and Standards for Hospice and Palliative Care Nursing.
The other two associations listed offer evidence-based practice guidelines for managing clinical and ethical issues at the end of life in many health care settings.

14. Factors Influencing Loss and Grief
Human development
Personal relationships
Nature of loss
Coping strategies
These are the first four of eight variables that affect how a person will react and respond to loss.
Depending upon the developmental stage the person occupies, reactions will vary considerably. For instance, illness or death disrupts the young adult’s future and establishment of an autonomous sense of self, whereas some older adults show resilience after a loss as a result of their prior experiences and developed coping skills.
[See also Box 36-1 on text p. 712 Focus on Older Adults: Grief Considerations in Older Adults.]
•Personal relationships will be disrupted when grief occurs. Family and social relationships may help the person who is grieving. When patients do not receive supportive understanding and compassion from others, grief becomes complicated or prolonged.
The nature of the loss will affect how the person reacts. Many will react differently to a sudden loss as compared with the loss of the elderly or one who has had a long illness.
Coping strategies will be shaped by previous life experiences. One tool is to have people write about their feelings in letters to lost loved ones or in personal journals to facilitate emotional disclosure.

15. Factors Influencing Loss and Grief (cont’d)
Socioeconomic status
Culture and ethnicity
Spiritual and religious beliefs
Hope
Socioeconomic status will influence a person’s ability to access support and resources needed for coping.
A person’s culture will influence how the person interprets loss and grief, as well as the customs that surround these events.
Spiritual resources include faith in a higher power, communities of support, friends, a sense of hope and meaning in life, and religious practices. Spirituality affects the patient’s and family members’ ability to cope with loss.
Hope is a multidimensional component of spirituality that energizes and provides comfort to individuals experiencing personal challenges. Spirituality and hope play important roles in the patient’s adjustment to loss and death.

16. Critical Thinking Listen carefully to the patient’s perceptions.
Use culture-specific understanding.
Use Professional Standards:
Nursing Code of Ethics
Dying Person’s Bill of Rights
ANA Scope and Standards of Hospice and Palliative Nursing
Use Clinical Standards: American Society of Pain Management Nurses’ Guidelines
Grieving people use their own unique history, context, and resources to make meaning out of their loss experiences. Listen as patients share the experience in their own way.
When developing a plan of care, make sure to access current practice guidelines for assistance.
Remember to incorporate culturally correct strategies, as well as developmental stage–appropriate care.
[Discuss Box 36-2 on text p. 713 A Dying Person’s Bill of Rights.]

17. Nursing Process and Grief
Assessment
Nursing Diagnosis
Planning
Implementation
Evaluation
The same nursing process applies, even though grieving is not a “disease” entity.
Knowing the commonly experienced reactions to grief and loss and grief theories guides your critical thinking and assessment skills.

18. Assessment
Conversations about the meaning of loss to a patient often lead to other important areas of assessment:
Patient’s coping style
The nature of family relationships
Social support systems
The nature of the loss
Cultural and spiritual beliefs
Life goals
Family grief patterns
Self-care
Sources of hope
A trusting, helping relationship with grieving patients and family members is essential to the assessment process.
Assess the wishes of the terminally ill patient and family for end-of-life care, including the preferred place for death, desired level of intervention, and expectations for pain and symptom management.
Anticipate common grief responses, but allow patients to describe their experiences in their own words. Open-ended questions such as “What do you understand about your diagnosis?” or “You seem sad today. Can you tell me more?” may open the door to a patient-centered discussion.
Most grieving people show some common outward signs and symptoms.
Loss takes place in a social context; thus family assessment is a vital part of your data gathering.
[Review Figure 36-1 on text p. 713 Critical thinking model for loss, death, and grieving assessment; Box 36-3 on text p. 714 Nursing Assessment Questions; and Box 36-4 on text p. 715 Symptoms of Normal Grief.]

19. Diagnosis Anticipatory grieving Risk for complicated grieving
Compromised family coping
Death anxiety
Fear
Impaired comfort
Ineffective denial
Grieving
Complicated grieving
Risk for complicated grieving
Hopelessness
Pain (acute or chronic)
Risk for loneliness
Spiritual distress
Readiness for enhanced spiritual well-being
In addition to numerous diagnoses related to physical symptoms at the end of life, nursing diagnoses relevant for patients experiencing grief, loss, or death are listed on the slide.
[Discuss possible “related to” factors for some of the diagnoses.]
[See also Box 36-5 on text p. 715 Nursing Diagnostic Process Hopelessness Related to Deteriorating Physical Condition.]

20. Planning Care plans for the dying patient focus on
Comfort
Preserving dignity and quality of life
Providing family members with emotional, social, and spiritual support
Give priority to a patient’s most urgent physical or psychological needs while also considering his or her expectations and priorities.
Nurses provide holistic, physical, emotional, social, and spiritual care to patients experiencing grief, death, or loss.
The use of critical thinking ensures a well-designed care plan that supports a patient’s self-esteem and autonomy by including him or her in the planning process.
The goals of care for a patient experiencing loss may be short or long term, depending on the nature of the loss and the patient’s condition. Some nursing care goals for patients facing loss or death include accommodating grief, accepting the reality of a loss, and maintaining meaningful relationships.
Encourage patients and family members to share their priorities for care at the end of life.
Patients at the end of life or with advanced chronic illness are more likely to want their comfort, social, or spiritual needs met rather than pursuing medical cures.
A patient’s condition at the end of life often changes quickly; therefore maintain an ongoing assessment to revise the plan of care according to patient needs and preferences.
When a patient has multiple nursing diagnoses, it is not possible to address them all simultaneously. If pain is present, often it must be the first focus.
A team of nurses, physicians, social workers, spiritual care providers, nutritionists, pharmacists, physical and occupational therapists, patients, and family members work together to provide palliative care, grief care, and care at the end of life.
[See also Figure 36-2 on text p. 716 Critical thinking model for loss, death, and grief planning; Nursing Care Plan on text pp ; and Concept Map on text p. 718.]

21. Case Study (cont’d)
Jennifer will ensure that Mrs. Kelly's pain is well managed before asking about her other priorities for care. Jennifer knows that many families have never given end-of-life care, so she plans to provide teaching for their priority concerns.
[Ask the class: What concerns do you have about end-of-life pain management? Discuss.]

22. Nurse’s Presence
A nurse’s presence and active listening affirm the patient’s dignity and worth.
Establish a caring presence and use effective communication strategies to encourage patients to share to the degree they are comfortable.
[Shown is Figure 36-4 from text p. 720.]

23. Implementation: Health Promotion
Providing palliative care in acute and restorative settings
Providing hospice care
Using therapeutic communication
Providing psychosocial care
Managing symptoms
Promoting dignity and self-esteem
Ensuring a comfortable and peaceful environment
Promoting spiritual comfort and hope
Protecting against abandonment and isolation
Supporting the grieving family
Assisting with end-of-life decision making
Facilitating mourning
Palliative care focuses on the prevention, relief, reduction, or soothing of symptoms of diseases or disorders throughout the entire course of an illness, including care of the dying and bereavement follow-up for the family. Palliative care allows patients to make more informed choices, achieve better alleviation of symptoms, and experience a higher quality of life through an illness or death experience.
Hospice is not a place but rather a philosophy of family-centered, whole-person care at the end of life and a model for the care of terminally ill patients and their families.
Establish a caring, trusting relationship with a patient and family by using an “open-hearted,” nonassuming communication style.
Patients at the end of life experience a range of psychological symptoms; providing psychosocial care is essential.
Managing the multiple symptoms commonly experienced by chronically ill or dying patients remains a primary goal of palliative care nursing.
A sense of dignity includes a person’s positive self-regard, an ability to invest in and gain strength from one’s own meaning in life, feeling valued by others and by how one is treated by caregivers.
[Ask the class: What are some ways to promote a sense of dignity? Discuss.]
A comfortable, clean, pleasant environment helps patients relax, promotes good sleep patterns, and minimizes symptom severity.
Help patients make connections to their spiritual practice or cultural community.
Patients feel more hopeful when others are nearby to help them.
In palliative care, patients and family members constitute the unit of care.
Patients and family members need time and careful explanations by nurses and other health care providers to make decisions.
Nurses who work with grieving family members often provide bereavement care after the patient’s death.
[See also Box 36-6 on text p. 719 Patient Teaching: Maintaining Self-Care; Box 36-7 on text p. 722 Evidence-Based Practice Patient and Family Member Satisfaction with End-of-Life Care; and Box 36-8 on text p. 723 Physical Changes Hours or Days before Death.]

24. Case Study (cont’d)
Intervention
Rationale
Involve the Kelly family in a discussion about symptom recognition and management.
Even with poor prognosis, social supports and prompt symptom relief improve quality of life.
Offer the Kelly family a chance to ask questions.
Clarifying expectations better prepares individuals to face changes.
Explain that setting easily achievable goals helps give hope.
Restructuring goals to be more short term and achievable helps to give hope.
Talking with the patient’s family, involving them in the caretaking process, and educating them about what to expect from the experience will improve the quality of life of the patient and family.
Nursing interventions involve reinforcing patients’ successful coping mechanisms.

25. Implementation: Care After Death
Federal and state laws apply to certain events after death.
Documentation
Organ and tissue donation
Autopsy
Postmortem care
Documentation of a death provides a legal record of the event. Follow agency policies and procedures carefully to provide an accurate and reliable medical record of all assessments and activities surrounding a death. Physicians or coroners sign some medical forms such as a request for autopsy, but the registered nurse gathers and records much of the remaining information surrounding a death. Nurses also usually witness or delegate the signing of forms.
Federal and state laws require institutions to develop policies and procedures for certain events that occur after death: certifying and documenting the occurrence of a death, requesting organ or tissue donation, performing an autopsy, and providing safe and appropriate postmortem care.
Family members deserve and expect a clear description of what happened to their loved one, especially in cases of sudden, unusual, or unexpected circumstances. Give only factual information in a nonjudgmental, objective manner, and avoid sharing your opinions.
Nursing documentation becomes relevant in risk management or legal investigations into a death, underscoring the importance of accurate, legal reporting. Documentation also validates success in meeting patient goals or provides justification for changes in treatment or expected outcomes.
In accordance with federal law, a specially trained professional (e.g., transplant coordinator, social worker) makes requests for organ and tissue donation at the time of every death. The person requesting organ or tissue donation provides information about who can legally give consent, which organs or tissues can be donated, associated costs, and how donation affects burial or cremation. In extremely stressful circumstances created by the loss of a loved one, grieving survivors usually cannot remember all they were told. Nurses provide support and reinforce and clarify explanations given to them during the request process. Be aware that the laws governing who to approach for organ donation may not be acceptable in other cultures.
Follow legal guidelines for documentation and sharing of medical records.
Family members may give consent for an autopsy, the surgical dissection of a body after death to determine the exact cause and circumstances of death or to discover the pathway of a disease. In most cases, a coroner or medical examiner determines the need to perform an autopsy. Law sometimes requires that an autopsy be performed when death is the result of foul play; homicide; suicide; or accidental causes such as motor vehicle crashes, falls, ingestion of drugs, or deaths within 24 hours of hospital admission. Unattended deaths and those that occur in the workplace or during incarceration also usually require an autopsy.
When a patient dies in an institutional or home care setting, nurses provide or delegate postmortem care—the care of a body after death. Above all, a human body deserves the same respect and dignity as a living person and needs to be prepared in a manner consistent with the patient’s cultural and religious beliefs. Death produces physical changes in the body quite quickly; thus postmortem care should be performed as soon as possible to prevent discoloration, tissue damage, and deformities.
Usually the physician or other designated health care provider asks for autopsy permission while the nurse answers questions and supports the family’s choices. Inform family members that an autopsy does not deform the body, and that all organs are replaced in the body.
Maintaining the integrity of cultural and religious rituals and mourning practices at the time of death gives survivors a sense of fulfilled obligations and promotes acceptance of the patient’s death. The ability of families to mourn in a manner consistent with cultural values helps survivors experience some predictability and control in an otherwise uncertain and confusing time. Become familiar with applicable policies and procedures for postmortem care because they vary across settings or institutions.
[See also Box 36-9 on text p. 724 Documentation of End-of-Life Care; Box on text p. 725 Cultural Aspects of Care of the Body After Death; and Box on text p. 726 Procedural Guidelines: Care of the Body After Death.]

26. Evaluation
Questions to help validate achievement of patient goals and expectations:
What is the most important thing I can do for you at this time?
Are your needs being addressed in a timely manner?
Are you getting the care for which you hoped?
Would you like me to help you in a different way?
Do you have a specific request that I have not met?
The success of the evaluation process depends partially on the bond that you have formed with the patient. Patients are more likely to share personal expectations or their wishes if you form a trusting relationship with them.
A patient’s responses and perceptions of the effectiveness of the interventions determine whether the existing plan of care is effective, or if different strategies are necessary.
Continue to evaluate the patient’s progress, the effectiveness of the interventions, and patient and family interactions. Even when a patient is not seeking care specifically related to a loss, be alert for signs and symptoms of grief. They provide the criteria for evaluating whether a patient is coping with a loss and how he or she is moving through the grief process.
The short- and long-term outcomes that signal a family’s recovery from a loss guide your evaluation.
Short-term outcomes indicating effectiveness of grief interventions include talking about the loss without feeling overwhelmed, improved energy level, normalized sleep and dietary patterns, reorganization of life patterns, improved ability to make decisions, and finding it easier to be around other people. Long-term achievements include the return of a sense of humor and normal life patterns, renewed or new personal relationships, and decreased inner pain.
[See also Figure 36-5 Critical thinking model for loss, death, and grief evaluation.]

27. Quick Quiz!
2. As a first-year nursing student, you are assigned to care for a dying patient. To best prepare you for this assignment, you will want to A. Complete a course on death and dying. B. Control your emotions about death and dying. C. Compare this experience to the death of a family member. D. Develop a personal understanding of your own feelings about grief and death.
Answer: D

28. Case Study (cont’d)
Jennifer asks Mr. Kelly and Lilly about any changes they see in Mrs. Kelly. They report that Mrs. Kelly has less activity tolerance, that she is able to rest with oxygen in place, and that Mrs. Kelly’s family asks about her pain before Mrs. Kelly states it.
Jennifer observes family members’ caregiving and level of comfort and involvement. She notes that after 1 week, Mrs. Kelly’s family is more at ease with caregiving activities.
Each part of the evaluation process achieves a goal.
Asking about the changes lets the nurse know that Mr. Kelly and Lilly are skillful in recognizing subtle symptoms in Mrs. Kelly’s status and are proactive about controlling symptoms.
Observing the family after 1 week provided an understanding of the family’s increased knowledge and ability to provide palliative care.

29. Case Study (cont’d)
Jennifer asks Mrs. Kelly to describe her feelings after sharing stories and life review with family.
After 2 weeks Jennifer notices that the Kelly family has begun to look forward to sharing these stories, and they are becoming at ease with Mrs. Kelly’s decision and their role in palliative care.
Family sharing helps to develop and strengthen relationships within the family.

30. Care After Death Federal and state laws require institutions to:
Request organ or tissue donation
Perform an autopsy
Certify and document the occurrence of a death
Provide safe and appropriate postmortem care
In accordance with federal law, a specially trained professional (e.g., transplant coordinator, social worker) makes requests for organ and tissue donation at the time of every death.
Usually the physician or other designated health care provider will ask for autopsy permission, but the nurse might answer questions and support the family’s choices.
Documentation of a death provides a legal record of the event.
Some medical forms, such as a request for autopsy, must be signed by a physician or coroner, but the registered nurse gathers and records much of the remaining information surrounding a death.
Above all, a human body deserves the same respect and dignity as a living person and needs to be prepared in a manner consistent with the patient’s cultural and religious beliefs.
Health care providers need to understand the makeup of a family network and to know which individuals should be involved in end-of-life decisions and care.

31. Importance of Nurses’ Self-Care
You cannot give fully engaged, compassionate care to others when you feel depleted or do not feel cared for yourself.
Frequent, intense, or prolonged exposure to grief and loss places nurses at risk for developing compassion fatigue.
Being a professional includes caring for yourself physically and emotionally.
To avoid the extremes of becoming overly involved in patients’ suffering or detaching from them, nurses develop self-care strategies to maintain balance.
Sometimes, nurses elect to work in areas where the incidence of death is low.
Nurses in acute care settings often witness prolonged, concentrated suffering on a daily basis, leading to feelings of frustration, anger, guilt, sadness, or anxiety.
Compassion fatigue, described as physical, emotional, and spiritual exhaustion resulting from seeing patients suffer, leads to a decreased capacity to show compassion or to empathize with suffering people.
Research indicates that nurses maintain hope and a positive outlook when they have adequate resources to care for patients, believe they are making a difference, and feel supported by team members.

32. Importance of Nurses’ Self-Care (cont’d)
Nurses participate in self-care to maintain the balance needed for compassionate caregiving.
Because of the ongoing demands of professional caregiving, set limits on how much you do, and spend time enjoying your favorite activities.
Practice self-care, ask for and accept help, and reflect on the meaning of nursing experiences of caring for the dying patient and family.
Pay attention to the people who nurture you.
[Shown is Figure 36-6 on text p. 727.]