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Chapter 17
End-of-Life Care
Chapter 17
End-of-Life Care
Copyright © 2010 Wolters Kluwer Health | Lippincott Williams & Wilkins
End-of-Life CareEnd-of-Life Care
• Essential part of nursing practice, patient care
• National Consensus Project for Quality Palliative Care (2004)
– Structure, processes of care
– Physical aspects of care
– Psychological, psychiatric aspects of care
– Social aspects of care
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End-of-Life Care (cont’d)End-of-Life Care (cont’d)
• Essential part of nursing practice, patient care
• National Consensus Project for Quality Palliative Care (2004)
– Spiritual, religious, existential aspects of care
– Cultural aspects of care
– Care of imminently dying patient
– Ethical, legal aspects of care
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Legislative IssuesLegislative Issues
• DNR orders
• Advanced directives
– Living will
– Proxy directive
– Durable power of attorney
• Assisted suicide legislation
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Awareness Contexts (Glaser and Strauss, 1965)Awareness Contexts (Glaser and Strauss, 1965)
• Closed awareness
• Suspected awareness
• Mutual pretense awareness
• Open awareness
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QuestionQuestion
• Which awareness context occurs when the patient, family, and the health care professionals are aware that the patient is dying and openly acknowledge that reality?
A. Closed
B. Suspected
C. Mutual pretense
D. Open
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AnswerAnswer
• D. Open
• Rationale: Open awareness occurs when the patient, the family, and the health care professionals are aware that the patient is dying and openly acknowledge that reality. Closed awareness is when the patient is unaware of their terminal state, whereas others are aware. Suspected awareness is when the patient suspects what others know and attempts to find out details about his or her condition. Mutual pretense awareness is when the patient, the family, and the health care professionals are aware that the patient is dying but all pretend otherwise.
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Palliative CarePalliative Care
• Comprehensive care for patients whose disease is not responsive to cure; care also extends to patients’ families
– Hospital setting
– Long-term care facility
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QuestionQuestion
• Tell whether the following statement is true or false:
• Palliative care is the use of pharmacologic agents at the request of the terminally ill patient to induce sedation when symptoms have not responded to other management measures.
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AnswerAnswer
• False.
• Rationale: Palliative care: comprehensive care for patients whose disease is not responsive to cure; care also extends to patients’ families
• Palliative sedation: use of pharmacologic agents at the request of the terminally ill patient to induce sedation when symptoms have not responded to other management measures
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Hospice CareHospice Care
• Coordinated program of interdisciplinary care, services provided primarily in home to terminally ill patients, their families
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Principles of Hospice CarePrinciples of Hospice Care
• Death must be accepted
• Patient’s total care best managed by interdisciplinary team whose members communicate regularly
• Pain, other symptoms must be managed
• Patient, family should be viewed as single unit of care
• Home care of dying necessary
• Bereavement care must be provided to family members
• Research, education should be ongoing
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QuestionQuestion
• Tell whether the following statement is true or false:
• The concept of hospice care was originally implemented in the country of England by Dr. Cicely Saunders.
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AnswerAnswer
• True.
• Rationale: The concept of hospice care was originally implemented in the country of England by Dr. Cicely Saunders.
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Barriers to Improving End-of-Life CareBarriers to Improving End-of-Life Care
• Cure = focus of health care establishment
• Financial criteria, reimbursement issues
• Cultural, social issues
• Discomfort with addressing issues of death (both patient, family), health care providers
• Psychological, coping responses to death, dying (denial)
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Four Levels of Hospice CareFour Levels of Hospice Care
• Routine home care
• Inpatient respite care
• Continuous care
• General inpatient care
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CommunicationCommunication
• Reflect on your own experiences, values concerning illness, death
• Deliver, interpret technical information without hiding behind medical terminology
• Realize best time for patient to talk may be least convenient for you
• Be fully present during all communications
• Allow patient, family to set agenda regarding depth of conversation
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Communication (cont’d)Communication (cont’d)
• Resist impulse to fill “empty space”
• Allow patient, family sufficient time to reflect, respond
• Prompt gently
• Avoid distractions
• Avoid impulse to give advice
• Avoid canned responses
• Ask questions
• Assess understanding, both your own, the patient‘s
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QuestionQuestion
• A patient who is dying wants to talk to the RN about fears of dying. The patient tells the RN, “I know I am dying, aren’t I?” What is an appropriate nursing response?
A.“This must be very difficult for you.”
B.“Tell me more about what’s on your mind.”
C.“I am sorry. I know exactly how you feel.”
D.“You know you are dying?”
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AnswerAnswer
• D. “You know you are dying?”
• Rationale: It is important to ask questions such as “You know you are dying?” It is important not to give advise such as “This must be difficult for you.” It is important to allow the patient sufficient time to reflect and respond without forcing him or her to talk immediately by statements such as, “Tell me more about what is on your mind.” It is important to avoid canned responses such as, “I know exactly how you feel.”
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Responding with SensitivityResponding with Sensitivity
• Responding to difficult questions
• Discussing at time issue is addressed by patient - make time
• Using open-ended statements or questions
• Seeking clarification
• Providing realistic reassurance
• Dealing with grief processes
• Assessing patient preferences, and spiritual, cultural practices
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Spiritual CareSpiritual Care
• Spirituality includes religion
– But is not synonymous with religion
• Spiritual assessment mnemonic-FICA
• Addressing spirituality: important component of care of dying patient
• Maintaining hope
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HopeHope
• Listening attentively
• Encouraging sharing of feelings
• Providing accurate information
• Encouraging, supporting patient’s control over his or her circumstances, choices, environment whenever possible
• Assisting patients to explore ways for finding meaning in their lives
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Hope (cont’d)Hope (cont’d)
• Encouraging realistic goals
• Facilitating effective communication within families
• Making referrals for psychosocial, spiritual counseling
• Assisting with development of supports in home or community when none exist
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Physiologic ResponsesPhysiologic Responses
• Patient's goal should direct care management
• Symptoms
– Pain
– Dyspnea
– Nausea
– Weakness
– Anxiety
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QuestionQuestion
• What is one of the most common and feared responses by patients to terminal illness?
A.Anorexia
B.Cachexia
C.Dyspnea
D.Pain
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AnswerAnswer
• D. Pain
• Rationale: Prevalence of pain is as high as 50% in patients with cancer of any type as well as in terminally ill patients. Dyspnea is an uncomfortable awareness of breathing that is common in patients approaching the end of life. Anorexia and cachexia are common in the seriously ill.
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Signs of Approaching DeathSigns of Approaching Death
• Refusal of food, fluids
• Urinary output decreases
• Weakness, sleep
• Confusion, restlessness
• Impaired vision, hearing
• Secretions in throat
• Breathing pattern
• Incontinence
• Decreased temperature control
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Grief and MourningGrief and Mourning
• Grief process
• Nursing diagnosis - anticipatory grief
• Interventions
• Support expression of feelings
• Assess social support
• Assess coping skills
• Assess for signs of complicated grief and mourning, offer professional referral