End of Life Communication & Collaboration

1. 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

2. Program Objectives • 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 & C-Change

6. Identifying the Dying Patient • Progressive, incurable, chronic medical condition • Progressive disease that no longer responds to life-prolonging 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. Iowa Cancer Consortium & C-Change

7. 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. Iowa Cancer Consortium & C-Change

8. 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 Iowa Cancer Consortium & C-Change

9. Self-determined Needs & Goals • Assist patient in meeting end-of-life goals • Who? • What? • Where? Iowa Cancer Consortium & C-Change

10. 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 Iowa Cancer Consortium & C-Change

11. Family Needs • Do patient’s and family’s goals conflict? • Is there unfinished business? • Promote patient – family communication • Reassess patient goals and priorities Iowa Cancer Consortium & C-Change

12. 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” Iowa Cancer Consortium & C-Change

13. Care Environment -Physical Environment • “Sacred space” • Objects and views • Lighting • Sound • Family space Iowa Cancer Consortium & C-Change

14. Care Environment - Staff behaviors and attitudes • Privacy and support • Sit, listen, convey compassion, concern • Importance of presence • Model behavior Iowa Cancer Consortium & C-Change

15. Symptom Management • Anticipate the patient’s decline • Reduce polypharmacy • Change medication routes • Plan to manage “Expected Symptoms” • Pain, dyspnea, delirium, secretions Iowa Cancer Consortium & C-Change

16. Plan to support Family • Offer Spiritual, Cultural, Psychosocial Support • Teach the signposts of Dying Process • Provide Educational materials Iowa Cancer Consortium & C-Change

17. Physical Comfort - Pain • Patient’s priority; often greatest fear • Handle gently with respect • Signs of discomfort in the non-verbal patient Iowa Cancer Consortium & C-Change

18. 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 Iowa Cancer Consortium & C-Change

19. 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 Iowa Cancer Consortium & C-Change

20. 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) Iowa Cancer Consortium & C-Change

21. 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 Iowa Cancer Consortium & C-Change

22. 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 Iowa Cancer Consortium & C-Change

23. 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 Iowa Cancer Consortium & C-Change

24. IV Fluids • Increased discomfort due to • Repeated venipunctures • Iatrogenic infections • Worsening of edema • Increasing respiratory secretions Iowa Cancer Consortium & C-Change

25. Elimination Management • Absorbent pad/adult protection • Moisture barrier • Indwelling catheter • Assess for underlying causes of fecal incontinence Iowa Cancer Consortium & C-Change

26. Skin Integrity & Loss of Mobility • Reposition frequently • Medicate prior to movement • Special mattresses prior to decline Iowa Cancer Consortium & C-Change

27. 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 Iowa Cancer Consortium & C-Change

28. Psychosocial Support for Patient • Allow control • Maintain dignity • Fears of unknown, abandonment, burdening • Communication Iowa Cancer Consortium & C-Change

29. Psychosocial Support for Family • Listen • Allow control • Determine who is the decision-maker • Respect preferences • Address concerns Iowa Cancer Consortium & C-Change

30. Grieving • Emotional responses to loss • Types • Anticipatory • Disenfranchised • Public • Normal vs. Complicated Iowa Cancer Consortium & C-Change

31. Risk Factors for Complicated Grieving • Enmeshed relationships • Multiple losses • Child’s loss of a parent • Death of a child • Substance abuse Iowa Cancer Consortium & C-Change

32. 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 Iowa Cancer Consortium & C-Change

33. Grief Coaching • Encourage communication with patient • Saying goodbye • Provide resources for bereavement support • A “good death” is sad, but hopefully will ease their grief Iowa Cancer Consortium & C-Change

34. Spiritual Needs • Suffering, meaning, and hope • Cultural influences • Clergy support • Patient-family conflict of values/beliefs • Unresolved issues/relationships Iowa Cancer Consortium & C-Change

35. Spiritual Needs Intervention • Chaplain/Clergy • Goal attainment • Forgiveness • Permission to die Iowa Cancer Consortium & C-Change

36. Request to Hasten Death • Origin of suffering • Physical or existential • Who is suffering? • Compassionate, non-judgmental response • Elicit team for support Iowa Cancer Consortium & C-Change

37. Other Issues of Dying • Final rally • Symbolic language • Visions • Dying alone Iowa Cancer Consortium & C-Change

38. Signs of Imminent Death • Changes in mentation • Loss of eyelash reflex • Changes in breathing patterns • Decreased urinary output • Cooling and mottling of extremities Iowa Cancer Consortium & C-Change

39. The Death Event • Signs of death • Rituals and family support • Post-mortem care Iowa Cancer Consortium & C-Change

40. Professional Coping • Importance of self care • View of dying • Personal feeling about patients who die • Recognize limits Iowa Cancer Consortium & C-Change

41. Conclusion • Assist patient to meet goals • Individualize the environment • Anticipate symptom management • Anticipate spiritual care needs • Facilitate grieving • Recognize importance of self care Iowa Cancer Consortium & C-Change

42. 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 Iowa Cancer Consortium & C-Change