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Carla Hunt, RN, BSN “To live in hearts we leave behind is not to die” Thomas Campbell Realities of Care Rapidly aging U.S. population Medical care has limitations and inappropriate use of advanced technology to prolong life when death is inevitable (Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Care, 1997). Exorbitant expense is associated with futile care 2.5 million U.S. deaths have been negotiated annually while life-extending/sustaining measures were provided (Tilden & Thompson, 2009). Palliative Care Intends to improve the quality of life for patients and families faced with life-limiting illness (World Health Organization, 2012). Provides support in chronic illness: cardiac (CHF), pulmonary (COPD), renal disease, cancer, immune suppression, HIV/AIDS , dementia, traumatic injury (McLean-Heitkemper, 2011). Care or treatment that reduces or controls symptoms instead of seeking cure or efforts to delay death. Palliative Care Begins after the patient receives the diagnosis of life-limiting illness. Goals: Prevent and relieve patient suffering Improve quality of life Timeframe includes hospice, end-of-life, and bereavement. Generally precedes hospice. Hospice philosophies are the foundation of palliative care. McLean-Heitkemper, 2011 Hospice Holistic, compassionate care for the dying and their family during terminal illness. Hospice Medicare eligibility requires a prognosis of less than six months life expectancy. Provides supportive care for patients in the last phase of incurable disease. Palliative focus instead of curative. Preserves dignity and quality of life throughout the dying process. Focuses on symptom management, advanced care planning, spiritual care, family support, and bereavement. McLean-Heitkemper 2011 Hospice Addresses physical, emotional, social, and spiritual needs of patients and families. Collaborative and coordinated care via interdisciplinary team members. Care team includes: physicians, pharmacist, nurses, nursing assistants, chaplain, volunteers, social worker, and bereavement coordinator. Services offered in the home, hospital, residential care center, and nursing home. McLean-Heitkemper 2011 End-of-Life Generally refers to care in the final phase of illness when the patient is near death or actively dying. EOL care may be a few hours, weeks, or months . The timeframe from diagnosis to death varies by diagnosis and disease extensiveness. Institute of Medicine considers EOL as the time of coping with terminal illness or advanced age even if death is not clearly imminent. McLean-Heitkemper, 2011 Goals of EOL Care Comfort and supportive care for the patient and family during the dying process. Improved quality of life for the life that remains. Dignified and peaceful death. Emotional support for both patient and family. McLean-Heitkemper, 2011 Consider for a moment….. How would your life change if you learned you would die in the next 12 months, six months, or one month? (Sherman, Matzo, Panke, Grant, Rhome , 2003) What would you want to do if you were diagnosed with a terminal condition? How would you need to do to prepare? Never loose sight of how very personal this is for the patient and family! When will death occur? Prognosis is influenced by disease, desire to live, and sometimes anticipation of special events (Sherman, Matzo, Pitorak, Ferrlll, Malloy, 2005). Not all patients experience the same symptoms as there is no specific sequence (McLean-Heitkemper , 2011). Death results when all vital organ function stops (cardiac, respiratory, and brain). Brain Death No brain or brainstem function. Cerebral cortex no longer functions or is irreversibly damaged. Clinical brain death in the ICU—heart continues to beat (intubation with mechanical ventilation). Legal definition—brain function must cease for brain death to be pronounced and life support removed. McLean-Heitkemper 2011 Death Draws Near: Physical Manifestations Slowed metabolism and impaired organ function that leads to multi-system failure and organ shutdown. Respirations are usually the first to stop. Heart usually stops within a few minutes of respirations. McLean-Heitkemper 2011 Death Draws Near: Physical Manifestations cont. Sensory: Decreased sensation Decreased ability to perceive pain and touch Poor sense of taste and smell Eyes: blurred vision, absent blink reflex, sunken, glazed over, blank stare, slit eye lids Loss of hearing (last sense to loose) Inability to respond McLean-Heitkemper, 2011 Death Draws Near: Physical Manifestations cont. Respiratory: (distress and air hunger common) Rapid, slow, shallow, irregular breathing Cheyne-Stokes respirations (alternating apnea and deep, rapid respirations) Slowed respirations “terminal gasps” or “guppy breaths” Unable to cough and clear secretions Noisy, gurgling secretions audible without a stethoscope, “death rattle” McLean-Heitkemper, 2011 Death Draws Near: Physical Manifestations Cardiovascular: Increased heart rate that begins to slow Weak or absent pulses Progressive decrease in blood pressure Delayed absorption of injected medications Irregular rhythm McLean-Heitkemper 2011 Death Draws Near: Physical Manifestations cont. Urinary: Decreasing output Incontinent Inability to void Gastrointestinal: Decreased motility and peristalsis Abdominal distention, nausea, and constipation Loss of sphincter control makes incontinence common as death occurs. McLean-Heitkemper 2011 Death Draws Near: Physical Manifestations cont. Musculoskeletal: Severe weakness and inability to move Relaxed facial tone—jaw drop, difficulty/inability to speak and/or swallow Poor body posturing and alignment Impaired gag reflex Myoclonus (involuntary jerking commonly seen with high-dose opioids) McLean-Heitkemper 2011 Death Draws Near: Physical Manifestations cont. Integumentary: Cold, clammy, diaphoretic, fever Cyanosis of nose, nail beds, ears Mottling of hands, feet, toes, arms, legs, and knees Skin may have wax-like appearance McLean-Heitkemper 2011 Death Draws Near: Psychosocial Manifestations cont. Conflicting decisions Anxiety regarding things left undone Feelings of meaningless life contributions Fear of pain or shortness of breath Loneliness Helplessness Depression McLean-Heitkemper 2011 Death Draws Near: Psychosocial Manifestations cont. Anticipatory grieving Difficulty saying goodbye Reminiscent of life’s events Fear of loss of independence and functional decline Recognized condition deterioration that patient correlates with approaching death Restlessness Inability to understand communication McLean-Heitkemper 2011 Confusion-Disorientation-Delirium Management Determine etiology—Disease progression, fever, nearing death awareness, opioid effects, full bladder , hypoxia, metabolic imbalances, toxin accumulation due to liver or renal failure. Management—Assess cause and treat, safety precautions, administer sedatives, speak truthfully regarding condition, provide spiritual and emotional support, assess for caregiver fatigue. McLean-Heitkemper 2011; Sherman et al., 2005 Dyspnea Management Pharmacologic Nonpharmacologic Opioids (morphine) Oxygen if hypoxic Bronchodilators (albuterol) Fan for air circulation, cool Diuretics (furosemide) room temperature Positioning, elevate head of bead Suctioning Benzodiazpines (lorazepam; alprazolam) Anxiolytics (buspirone) Steriods (dexametasone, SoluMedrol) Antibiotics Sherman et al., 2004 Gastrointestinal Management Nausea Antiemetics NG if obstructed Constipation Stimulant (Senna) Bulk laxatives (Metamucil) Warm fluids (prune juice) Diarrhea Opioids (Loperamide hydrochloride) Bulk forming agents Somatostatin (Sandostatin) Sherman et al., 2004 Fatigue-Weakness Management Increased weakness Interventions include: Assist with ADL’s Bedrest—ROM, turning, positioning, and skin assessment. Alter medication routes—least invasive and most effective Aspiration precautions Suction McLean-Heitkemper 2011; Sherman et al., 2004; Sherman et al., 2005 Pain Management Patients fear that they will die in pain Scheduled analgesia for pain control (long/short acting) Inability to swallow—consider alternate administration routes Interventions—massage, reposition, bracing/splinting Alternative/ complimentary therapies Use standardized tools for pain assessment McLean-Heitkemper 2011; Sherman et al., 2004 Comfort Care: Actively Dying Simple patient directions Oral care—sips of fluid, mouth care, lip moisturizer Preventive skin care—manage incontinence, skin barriers. Medications to alleviate respiratory congestion, agitation, pain, and dyspnea. Antiemetics for discomfort associated with nausea and vomiting. Sherman et al., 2005 Care of the Spirit May or may not mean religion Spiritual support provides strength and decreases despair at EOL Pray with patient and family Involve pastoral services Recognize spiritual diversity and ritualistic EOL practices McLean-Heitkemper 2011 Emotional Support Provide hope, comfort, and peacefulness (Matzo, Sherman, Sheehan, Ferrell, & Penn, 2003). Reassure the patient you will not abandon them Ask yourself, “What would I do if this were my family member?” Provide realistic and honest information Prepare for emotional decline and cognitive changes Empathetic and compassionate care McLean-Heitkemper, 2011) Encourage sharing of life stories, memories, and life contributions Live your life until you die (Cramer, 2010). ( Communication Communication is 7% verbal, 38% tone, and 55% body language (Cramer, 2010) Be present, use eye contact and touch, sit at the bedside, listen more than you talk. Communicate with open acceptance (McLean-Heitkemper, 2011) Create an environment that feels safe to share feelings and express emotion. Silence is ok. Nearing death awareness: Patient may see or talk with a loved ones that have died Patient may provide instructions for those left behind Response to Loss Grief is normal, healthy process of reacting to loss and adapting to change. Bereavement is the time after death when grief and mourning occur Factors that influence grief: Personal characteristics Relationship with the deceased Life stressors Coping resources Support systems Often begins prior to death Powerful, affects all aspects of one’s life Nurse may be the recipient of anger. Do not react or take it personal. McLean-Heitkemper 2011; Sherman et al., 2003 Grief/Bereavement: Response to loss Poor concentration, persistent sadness, constant thoughts of the one who died Guilt, anger, abnormal behavior Weight loss, poor appetite Difficulty sleeping, palpitations Anxiety, fear, loneliness, hopelessness, powerlessness McLean-Heitkemper 2011 Legal and Ethical Principles in Complex EOL Care Care determined by the patient’s wishes (McLean-Heitkemper ,2011) Organ and tissue donations Advance directives Medical power of attorney or living wills Resuscitation The nurse must recognize how her/his personal beliefs, values, and expectations influence EOL care (Matzo et al., 2003). Fear of death, lack of experience , not knowing what to say, unresolved grief, and disagreement with patient wishes A nurse has an ethical responsibility to ensure everything possible is done to provide a peaceful death. Organ and Tissue Donation Any part of the entire body may be donated Decision may be made prior to death but family must consent at time of donation Usually retrieved within a few hours after death Designated requestors at every hospital McLean-Heitkemper 2011 Legal Documents: Protect the Patient’s Wishes Advance directives Written statements of medical care wishes Sometimes called a living will Directive to physicians Patient’s desire to accept or deny treatment Durable power of attorney for health care Lists the person to make health care decisions should a patient become unable to make informed decisions for self McLean-Heitkemper 2011 Common Legal Documents Do not resuscitate (DNR) Orders instructing health care providers not to perform CPR Often requested by family Must be signed by a physician to be valid Purple bracelet placed on client Push to change the term to allow natural death (AND) to more clearly describe what occurs McLean-Heitkemper 2011 Ethical Issues Beneficence—To do good without causing harm. Give effective amounts of timely pain medication. Failure to give effective pain medication and adequate dosing neglects the principles of beneficence. Nonmaleficence—To “do no harm”. To refrain from causing harm. Effective pain control that alleviates suffering in the terminally ill. Under treatment of pain may be more harmful than the presumed harmful side effects. Secondary effects that may hasten death are ethically justified. Bernhofer, 2011 Postmortem Care After patient is pronounced dead the nurse prepares or delegates preparation of the body If death is in a semi-private room—move the other patient out Considerations when preparing body: Cultural and ritualistic practices Adherence to policies and procedures Close the patient’s eyes Replace dentures Wash the body as needed Remove tubes and dressings Straighten the body Leave a pillow in place to support the head McLean-Heitkemper 2011 Postmortem Care Immediate family viewing and saying final goodbye Family should be allowed privacy and as much time as needed with the deceased loved one Body may stay on the unit 2 hours McLean-Heitkemper 2011 Special Needs of the Nurse Recognize what can and cannot be controlled It is appropriate to cry with the patient and family during the grieving process Care for the dying is emotionally challenging for everyone involved It is common for nurse to feel helpless and powerless Feelings of sorrow, guilt, and frustration need to be expressed McLean-Heitkemper 2011 Nursing Management Nursing Diagnoses: Psychosocial Acute/ chronic confusion Compromised family coping Death anxiety Disturbed thought processes Spiritual distress Ineffective denial Interrupted family processes Insomnia Nursing Management Nursing Diagnoses: Psychosocial Fear Grieving Hopelessness Impaired religiosity Impaired social interaction Impaired verbal communication Ineffective coping Readiness for enhanced spiritual well-being Risk for loneliness Social isolation Nursing Management Nursing Diagnoses: Physical Acute/ chronic pain Bowel incontinence Constipation Decreased cardiac output Diarrhea Impaired tissue integrity Impaired urinary elimination Ineffective airway clearance Impaired physical mobility Nursing Management Nursing Diagnoses: Physical Fatigue Imbalanced nutrition: less than body requirements Impaired bed mobility Impaired comfort Impaired gas exchange Impaired oral mucous membrane Impaired skin integrity Impaired swallowing Nursing Management Nursing Diagnoses: Physical Ineffective breathing pattern Ineffective thermoregulation Ineffective tissue perfusion Nausea Risk for aspiration Risk for infection Risk for injury Self-care deficit Total urinary incontinence Resources American Cancer Society (http:/www.cancer.org) National Hospice and Palliative Care Organization (http://www.nhpco.org) Hospice and Palliative Nurses Association (http://www.hpna.org) Oncology nursing Society (http://ons.org) Journal of Supportive oncology: Quality of Life/Symptom Management/Palliative care (http://www.supportiveoncology.net) End of Life Nursing Education Consortium From the American Association of College of Nursing (http://www.aacn.nche.edu/elnec/curriculum.htm) References Ackley, B.J. & Ladwig, G.B. (9th ed). Nursing diagnosis handbook: An evidencebased guide to planning care. Mosby. American Association of Colleges of Nursing. (2004). Peaceful death: Recommended competencies and curricular guidelines for end-of-life nursing care. Retrieved from http://www.aacn.nche.edu/Publications/deathfin.htm Bernhofer, E. (2011). Ethics: Ethics and pain management in hospitalized patients. The Online Journal of Issues in Nursing, 17(1). doi: 10.3912/OJN.Vol17No01EthCol01 Cramer, C. F. (2010). To live until you die: Quality of life at the end of life. Clinical Journal of Oncology Nursing, 14(1), 53-56. doi: 10.1188/10.CJON.53-56 Matzo, M. L., Sherman, D. W., Lo, K., Egan, K. A., Grant, M., & Rhome, A. (2003). Strategies for teaching loss, grief, and bereavement. Nurse Educator, 28(2), 7176. doi: 10.1097/00006223-200303000-00009 Matzo, M. L., Sherman, D. W., Nelson-Marten, P., Rhome, A., & Grant, M. (2004). Ethical and legal issues in end-of-life care: content of the End-of-life Nursing Education Consortium Curriculum and teaching strategies. Journal for Nurse in Staff Development, 20(2), 59-66. doi: 10.1097/00124645-20040300-00001 References McLean-Heitkemper, M. (2011). Palliative care at the end-of-life. In S. L. Lewis, S. RuffDirksen, M. McLean-Heitkemper, L. Bucher, & I. M. Camera (Eds.), Medicalsurgical nursing: Assessment and management of clinical problems (pp. 153-166). St. Louis, MO: Mosby. Sherman, D. W., Matzo, M. L., Coyne, P., Ferrell, B. R., & Penn, B. K. (2004). Teaching symptom management in end-of-life care: The didactic content and teaching strategies based on the End-of-Life Nursing Education Curriculum. Journal for Nurses in Staff Development, 20(3), 103-115. doi: 10.1097/00124645-200405000-00001 Sherman, D. W., Matzo, M. L., Panke, J., Grant, M., & Rhome, A. (2003). End-of-Life Nursing Education Consortium Curriculum: An introduction to palliative care. Nurse Educator, 28(3), 111-120. doi: 10.1097/00006223-200305000-00004 Sherman, D. W., Matzo, M. L., Pitorak, E., Ferrell, B. R., & Malloy, P. (2005). Preparation and care at the time of death: Content of the ELNEC Curriculum and teaching strategies. Journal for Nurses in Staff Development, 21(3), 93-100. doi: 10.1097/00124645-200505000-00003 Tilden, V. P., & Thompson, S. (2009). Policy issues in end-of-life care. Journal of Professional Nursing, 25(6), 363-368. doi: 10.1016/j.profnurs.2009.08.005 World Health Organization. (2012). http://www.who.int/cancer/palliative/en/