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End of Life Communication & Collaboration “Care of the Actively Dying” Cheryl Vahl MSN AOCN ACHPN Adapted from Clinical Review for the Hospice and Palliative Nurse Program Objectives • • • • • • 3/23/2010 Describe palliative care, hospice care, and end of life care Identify end of life symptoms and management options Identify regulatory, institutional and personal barriers impacting palliative care and end of life care Discuss the referral of patients to community palliative and end of life care and support services Describe the process of working with patients and families to define goals of care and use of advanced directives Examine ways to collaborate with hospice care providers within long-term care facility settings Iowa Cancer Consortium & CChange 2 Identifying the Dying Patient • Progressive, incurable, chronic medical condition – Progressive disease that no longer responds to lifeprolonging treatments • Heart failure or COPD • Metastatic cancer • Chronic aspiration pneumonia – Progressive decline in functional ability – Psychological acceptance of imminent death – CAPC: A Guide to Building a Hospital-based Palliative Care Program, 2004. 3/23/2010 Iowa Cancer Consortium & CChange 6 Identifying the Dying Patient • Syndrome of Imminent Death – Early Stage - bedbound, loss of interest/ability to eat/drink; cognitive changes; either hypo/hyperactive delirium, or sedation – Mid Stage - further decline in mental status (obtunded); ‘death rattle’ or inability to manage oral secretions; fever – Late Stage - coma, cool extremities, altered respiratory pattern; fever – Time Course - varies from less than 24hrs to 14days; difficult to predict time course; family distress as patient ‘lingers.’ – CAPC: A Guide to Building a Hospital-based Palliative Care Program, 2004. 3/23/2010 Iowa Cancer Consortium & CChange 7 Ensuring Good Care • • • • • • Make environment comfortable Attentiveness, compassion and concern Avoid burdensome care Respect values Working as a team Encourage family to be with, touch, speak to the patient; support them as needed to do this 3/23/2010 Iowa Cancer Consortium & CChange 8 Self-determined Needs & Goals • Assist patient in meeting end-of-life goals - Who? - What? - Where? 3/23/2010 Iowa Cancer Consortium & CChange 9 Cultural Influences • Determine beliefs and values • Respect need to “die on his or her own terms” • Never impose own beliefs • Avoid judging how family members cope 3/23/2010 Iowa Cancer Consortium & CChange 10 Family Needs • • • • Do patient’s and family’s goals conflict? Is there unfinished business? Promote patient – family communication Reassess patient goals and priorities 3/23/2010 Iowa Cancer Consortium & CChange 11 Assist Patients & Family in “Reframing Hope” • Hope may begin with hope for a cure, but can evolve into many things as patient and family goals change • There are many facets to hope. It’s the desire and the expectation that something is obtainable • Caution to not to promote “false hope” 3/23/2010 Iowa Cancer Consortium & CChange 12 Care Environment Physical Environment • • • • • “Sacred space” Objects and views Lighting Sound Family space 3/23/2010 Iowa Cancer Consortium & CChange 13 Care Environment Staff behaviors and attitudes • • • • Privacy and support Sit, listen, convey compassion, concern Importance of presence Model behavior 3/23/2010 Iowa Cancer Consortium & CChange 14 Symptom Management • • • • Anticipate the patient’s decline Reduce polypharmacy Change medication routes Plan to manage “Expected Symptoms” – Pain, dyspnea, delirium, secretions 3/23/2010 Iowa Cancer Consortium & CChange 15 Plan to support Family • Offer Spiritual, Cultural, Psychosocial Support • Teach the signposts of Dying Process • Provide Educational materials 3/23/2010 Iowa Cancer Consortium & CChange 16 Physical Comfort - Pain • Patient’s priority; often greatest fear • Handle gently with respect • Signs of discomfort in the non-verbal patient 3/23/2010 Iowa Cancer Consortium & CChange 17 Patient with significant pain, entering final days • Assume pain will continue to be present until death • Do not discontinue pain meds as mental status declines – Dose reduction may be considered in liver & renal failure (especially when there is no urine output) • Use nonverbal indicators of pain to judge analgesic needs 3/23/2010 Iowa Cancer Consortium & CChange 18 Patient without significant pain, entering final days • New severe pain due to dying process is unlikely – Discomfort from immobility can occur • Trial of analgesics for suspected pain 3/23/2010 Iowa Cancer Consortium & CChange 19 Agitation - Delirium • • • • • • • Types Reversible physical causes Emotional or spiritual causes Non-verbal signs of discomfort Provide calm quiet environment Minimize sleep interruptions Medications if distressed – Neuroleptics (haldol) – Benzodiazepines (ativan) 3/23/2010 Iowa Cancer Consortium & CChange 20 Dyspnea “I can’t get my breath” • Different from Tachypnea (rapid breathing) or Apnea (pauses in breathing) • Medications for perception of breathlessness – Morphine – Lorazepam (Ativan®) • Environment – Change position – Fan 3/23/2010 Iowa Cancer Consortium & CChange 21 Noisy Respirations • “Death rattle” • Caused by relaxation of throat muscles and pooling of secretions • Environment – Reposition – Minimize fluids • Medications – Scopolamine patch; Atropine drops; Glycopyrrolate • Avoid deep suctioning 3/23/2010 Iowa Cancer Consortium & CChange 22 Nutrition/Hydration • Provide family support when patients stop or are unable to eat by mouth • Small sips for conscious patients who express Hunger or Thirst • Avoid fluid overload • Tube feedings – do not initiate or continue • Dehydration may provide comfort • Mouth care 3/23/2010 Iowa Cancer Consortium & CChange 23 IV Fluids • Increased discomfort due to – – – – Repeated venipunctures Iatrogenic infections Worsening of edema Increasing respiratory secretions 3/23/2010 Iowa Cancer Consortium & CChange 24 Elimination Management • • • • Absorbent pad/adult protection Moisture barrier Indwelling catheter Assess for underlying causes of fecal incontinence 3/23/2010 Iowa Cancer Consortium & CChange 25 Skin Integrity & Loss of Mobility • Reposition frequently • Medicate prior to movement • Special mattresses prior to decline 3/23/2010 Iowa Cancer Consortium & CChange 26 Terminal, Palliative, or Respite Sedation? • What is the “intent”? • Use of sedative to provide relief of refractory and intolerable symptoms at the end of life • “Time limited trial” • Not euthanasia • Indicated in <2% of patients 3/23/2010 Iowa Cancer Consortium & CChange 27 Psychosocial Support for Patient • Allow control • Maintain dignity • Fears of unknown, abandonment, burdening • Communication 3/23/2010 Iowa Cancer Consortium & CChange 28 Psychosocial Support for Family • • • • • Listen Allow control Determine who is the decision-maker Respect preferences Address concerns 3/23/2010 Iowa Cancer Consortium & CChange 29 Grieving • Emotional responses to loss • Types – – – – 3/23/2010 Anticipatory Disenfranchised Public Normal vs. Complicated Iowa Cancer Consortium & CChange 30 Risk Factors for Complicated Grieving • • • • • Enmeshed relationships Multiple losses Child’s loss of a parent Death of a child Substance abuse 3/23/2010 Iowa Cancer Consortium & CChange 31 Grief Interventions • • • • • • Education and preparation Keep family informed Provide information Prepare family for death Allow family to participate in caregiving Permission to take breaks or leave 3/23/2010 Iowa Cancer Consortium & CChange 32 Grief Coaching • • • • Encourage communication with patient Saying goodbye Provide resources for bereavement support A “good death” is sad, but hopefully will ease their grief 3/23/2010 Iowa Cancer Consortium & CChange 33 Spiritual Needs • • • • • Suffering, meaning, and hope Cultural influences Clergy support Patient-family conflict of values/beliefs Unresolved issues/relationships 3/23/2010 Iowa Cancer Consortium & CChange 34 Spiritual Needs Intervention • • • • Chaplain/Clergy Goal attainment Forgiveness Permission to die 3/23/2010 Iowa Cancer Consortium & CChange 35 Request to Hasten Death • • • • • Origin of suffering Physical or existential Who is suffering? Compassionate, non-judgmental response Elicit team for support 3/23/2010 Iowa Cancer Consortium & CChange 36 Other Issues of Dying • • • • Final rally Symbolic language Visions Dying alone 3/23/2010 Iowa Cancer Consortium & CChange 37 Signs of Imminent Death • • • • • Changes in mentation Loss of eyelash reflex Changes in breathing patterns Decreased urinary output Cooling and mottling of extremities 3/23/2010 Iowa Cancer Consortium & CChange 38 The Death Event • Signs of death • Rituals and family support • Post-mortem care 3/23/2010 Iowa Cancer Consortium & CChange 39 Professional Coping • • • • Importance of self care View of dying Personal feeling about patients who die Recognize limits 3/23/2010 Iowa Cancer Consortium & CChange 40 Conclusion • • • • • • Assist patient to meet goals Individualize the environment Anticipate symptom management Anticipate spiritual care needs Facilitate grieving Recognize importance of self care 3/23/2010 Iowa Cancer Consortium & CChange 41 References • • • • • • • Bednash G, Ferrell B. End-of-life Nursing Education Consortium (ELNEC). Washington, DC: Association of Colleges of Nursing; 2005. Wagner B, Ersek M, Riddell S. Artificial Nutrition and Hydration Position Statement. Pittsburgh, PA: Hospice and Palliative Nurses Association; 2003. Corless IB. Bereavement. In: Ferrell BR, Coyle N, eds. Textbook of Palliative Nursing. 2nd ed. New York, NY: Oxford University Press, 2006:531-544. Emanual L, von Gunten CF, Ferris FD, eds. The Education for Physicians on End-of-Life Care (EPEC) Curriculum. The EPEC Project, The Robert Wood Johnson, Foundation, 1999. Berry P, Griffie J. Planning for the actual death. In: Ferrell BR, Coyle N, eds. Textbook of Palliative Nursing. 2nd ed. New York, NY: Oxford University Press, 2006:561-577. Berry PH, ed. Core Curriculum for the Generalist Hospice and Palliative Nurse. Dubuque, IA: Kendall/Hunt; 2005. Martinez J, Wagner S. At the end of life: hospice and palliative care. In Groenwald SL, Hansen M, Goodman M, Yarbro M, Jones C.H. Cancer nursing: Principles and Practices (5th ed). Boston, MA: Bartlett Publishing;2000 3/23/2010 Iowa Cancer Consortium & CChange 42