Chapter 17 End-of-Life Care

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End-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 (contd)

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 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)

Closed awareness Suspected awareness Mutual pretense awareness Open awareness

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Question
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

Copyright 2010 Wolters Kluwer Health | Lippincott Williams & Wilkins

Answer
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 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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Question
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.

Copyright 2010 Wolters Kluwer Health | Lippincott Williams & Wilkins

Answer
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 Care
Coordinated program of interdisciplinary care, services provided primarily in home to terminally ill patients, their families

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Principles of Hospice Care

Death must be accepted Patients 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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Question
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.

Copyright 2010 Wolters Kluwer Health | Lippincott Williams & Wilkins

Answer
True. Rationale: The concept of hospice care was originally implemented in the country of England by Dr. Cicely Saunders.

Copyright 2010 Wolters Kluwer Health | Lippincott Williams & Wilkins

Barriers 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 Care

Routine home care Inpatient respite care Continuous care General inpatient care

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Communication
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 (contd)
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 patients

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Question
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, arent I? What is an appropriate nursing response?

A.This must be very difficult for you.

B.Tell me more about whats on your mind. C.I am sorry. I know exactly how you feel. D.You know you are dying?

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Answer
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 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 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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Hope
Listening attentively Encouraging sharing of feelings Providing accurate information Encouraging, supporting patients 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 (contd)
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 Responses
Patient's goal should direct care management Symptoms Pain Dyspnea Nausea Weakness Anxiety

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Question
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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Answer
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 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 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
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