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End of Life Communication & Collaboration

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1 End of Life Communication & Collaboration
Care of the Actively Dying 3/23/2010 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 Iowa Cancer Consortium & C-Change

2 Care of the Actively Dying
3/23/2010 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 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

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6 Identifying the Dying Patient
Care of the Actively Dying 3/23/2010 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. Who is Dying? How can this population of patients be identified? CAPC Resource: A Guide to Building a Hospital-based Palliative Care Program: one of the Appendix discusses Artificial Hydration & Nutrition in Advanced Dementia or At End of Life… It’s adapted from Guidelines for Physician Staff, Froedtert Hospital, Milwaukee, WS, one of the CAPC Centers of Excellence. They identify two groups of patients who can be thought of as dying: . 1.Patients who have a progressive, incurable, chronic medical condition. 2.Patients entering the Syndrome of Imminent Death Early Stage Patients in this category can be thought of as dying when most of the following features are present: *Progressive disease that no longer responds to life-prolonging treatments: Heart failure or COPD that is refractory to all medications Metastatic cancer that is progressing despite chemotherapy, with no further available treatments or trx burden that is too great. Chronic aspiration pneumonia in the setting of dementia where the patients/surrogate has declined use of artificial feeding. (or patient has repeated pulled tube out) *Progressive decline in functional ability: Increasing need for medical attention with little improvement in functional ability (ability to do self-care, mobility) Increasingly frequent visits to ER, hospital admissions ( 6 trips /4months) (PC Code to ER to stop revolving door) Steady weight loss *Psychological acceptance of imminent death assuming a major Depression is excluded. WOULD IT SURPRISE YOU IF THIS PATIENT DIED WITHIN THE NEXT YEAR?? 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

7 Identifying the Dying Patient
Care of the Actively Dying 3/23/2010 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. Syndrome of Imminent death or what we call the “actively dying’ Syndrome of Imminent Death- is the final common pathway to death for virtually all patients except those dying from a sudden catastrophic event (90% of us; 10% will die suddenly) 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

8 Care of the Actively Dying
3/23/2010 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 Care of the Patient and Family When Death is Nearing The major ways to ensure good care to dying patients, and support to their families are Making the environment as comfortable as possible. Giving care with an attitude of attentiveness, compassion, and concern for individual patient and family needs Working with the team to avoid any burdensome care, such as unnecessary weighing and monitoring of vital signs, or other care that may cause discomfort Respecting the patient and family’s cultural, religious, and other values without judging them, or imposing our own beliefs Working as a team member by sharing observations, reporting problems and concerns, and supporting each other When done well, care of the dying can be some of the most rewarding care we can provide 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

9 Self-determined Needs & Goals
Care of the Actively Dying 3/23/2010 Self-determined Needs & Goals Assist patient in meeting end-of-life goals Who? What? Where? 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

10 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

11 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

12 Assist Patients & Family in “Reframing Hope”
Care of the Actively Dying 3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

13 Care Environment - Physical Environment
Care of the Actively Dying 3/23/2010 Care Environment - Physical Environment “Sacred space” Objects and views Lighting Sound Family space 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

14 Care Environment - Staff behaviors and attitudes
Care of the Actively Dying 3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

15 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

16 Care of the Actively Dying
3/23/2010 Plan to support Family It is crucial that we stress “what we can do now” when the aggressive curative measures haven’t proven helpful. Teach the Dying Process: mental status changes/withdrawal; Visions, Surge of Energy; decreased PO intake; inc’d sleeping; decreased urine; changes in breathing; upper airway congestion; decreased circulation Provide Educational Materials on Physical Dying Process, Grief, and Childrens Grief (how to I talk to the kids?) Suggest support systems in their Community for Grief Support Hospital Routines at time of death - no need to hurry - allow time for goodbyes - will help with acute grief reaction Dying as Lengthy Process and Encourage Family Self-Care Refractory Symptoms: Palliative Sedation Story of “Ike” Institutional death - provide privacy, single room - more Home-like Allow family to stay; provide Attendant meal Offer Spiritual, Cultural, Psychosocial Support Teach the signposts of Dying Process Provide Educational materials 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

17 Physical Comfort - Pain
Care of the Actively Dying 3/23/2010 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 & C-Change 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 3/23/2010 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 3/23/2010 Iowa Cancer Consortium & C-Change

20 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

21 Dyspnea “I can’t get my breath”
Care of the Actively Dying 3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

22 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

23 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

24 Care of the Actively Dying
3/23/2010 IV Fluids Increased discomfort due to Repeated venipunctures Iatrogenic infections Worsening of edema Increasing respiratory secretions 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

25 Elimination Management
Care of the Actively Dying 3/23/2010 Elimination Management Absorbent pad/adult protection Moisture barrier Indwelling catheter Assess for underlying causes of fecal incontinence 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

26 Skin Integrity & Loss of Mobility
Care of the Actively Dying 3/23/2010 Skin Integrity & Loss of Mobility Reposition frequently Medicate prior to movement Special mattresses prior to decline 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

27 Terminal, Palliative, or Respite Sedation?
Care of the Actively Dying 3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

28 Psychosocial Support for Patient
Care of the Actively Dying 3/23/2010 Psychosocial Support for Patient Allow control Maintain dignity Fears of unknown, abandonment, burdening Communication 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

29 Psychosocial Support for Family
Care of the Actively Dying 3/23/2010 Psychosocial Support for Family Listen Allow control Determine who is the decision-maker Respect preferences Address concerns 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

30 Care of the Actively Dying
3/23/2010 Grieving Emotional responses to loss Types Anticipatory Disenfranchised Public Normal vs. Complicated 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

31 Risk Factors for Complicated Grieving
Care of the Actively Dying 3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

32 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

33 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

34 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

35 Spiritual Needs Intervention
Care of the Actively Dying 3/23/2010 Spiritual Needs Intervention Chaplain/Clergy Goal attainment Forgiveness Permission to die 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

36 Request to Hasten Death
Care of the Actively Dying 3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

37 Care of the Actively Dying
3/23/2010 Other Issues of Dying Final rally Symbolic language Visions Dying alone 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

38 Signs of Imminent Death
Care of the Actively Dying 3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

39 Care of the Actively Dying
3/23/2010 The Death Event Signs of death Rituals and family support Post-mortem care 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

40 Care of the Actively Dying
3/23/2010 Professional Coping Importance of self care View of dying Personal feeling about patients who die Recognize limits 3/23/2010 Iowa Cancer Consortium & C-Change Iowa Cancer Consortium & C-Change

41 Care of the Actively Dying
3/23/2010 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 & C-Change Iowa Cancer Consortium & C-Change

42 Iowa Cancer Consortium & C-Change
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: 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: 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 & C-Change


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