end of life communication & collaboration “care of the actively dying” cheryl vahl msn aocn...

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

3/23/2010 Iowa Cancer Consortium & C-Change

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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


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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.


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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.


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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


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Self-determined Needs & Goals• Assist patient in meeting end-of-life goals

- Who?

- What?

- Where?


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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


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Family Needs

• Do patient’s and family’s goals conflict?

• Is there unfinished business?

• Promote patient – family communication

• Reassess patient goals and priorities


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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”


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Care Environment -Physical Environment

• “Sacred space”• Objects and views• Lighting• Sound• Family space


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Care Environment - Staff behaviors and attitudes

• Privacy and support

• Sit, listen, convey compassion, concern

• Importance of presence

• Model behavior


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Symptom Management

• Anticipate the patient’s decline• Reduce polypharmacy• Change medication routes• Plan to manage “Expected Symptoms”

– Pain, dyspnea, delirium, secretions


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Plan to support Family

• Offer Spiritual, Cultural, Psychosocial Support

• Teach the signposts of Dying Process

• Provide Educational materials


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Physical Comfort - Pain

• Patient’s priority; often greatest fear

• Handle gently with respect

• Signs of discomfort in the non-verbal patient


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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


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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


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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)


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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


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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


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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


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IV Fluids

• Increased discomfort due to– Repeated venipunctures– Iatrogenic infections– Worsening of edema– Increasing respiratory secretions


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Elimination Management

• Absorbent pad/adult protection

• Moisture barrier

• Indwelling catheter

• Assess for underlying causes of fecal incontinence


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Skin Integrity & Loss of Mobility

• Reposition frequently

• Medicate prior to movement

• Special mattresses prior to decline


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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


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Psychosocial Support for Patient

• Allow control

• Maintain dignity

• Fears of unknown, abandonment, burdening

• Communication


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Psychosocial Support for Family

• Listen• Allow control• Determine who is the decision-maker• Respect preferences• Address concerns


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Grieving

• Emotional responses to loss• Types

– Anticipatory – Disenfranchised – Public – Normal vs. Complicated


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Risk Factors for Complicated Grieving

• Enmeshed relationships

• Multiple losses

• Child’s loss of a parent

• Death of a child

• Substance abuse


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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


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Grief Coaching

• Encourage communication with patient• Saying goodbye• Provide resources for bereavement support• A “good death” is sad, but hopefully will ease their

grief


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Spiritual Needs

• Suffering, meaning, and hope• Cultural influences• Clergy support• Patient-family conflict of values/beliefs• Unresolved issues/relationships


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Spiritual Needs Intervention

• Chaplain/Clergy• Goal attainment• Forgiveness• Permission to die


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Request to Hasten Death

• Origin of suffering• Physical or existential• Who is suffering?• Compassionate, non-judgmental response• Elicit team for support


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Other Issues of Dying

• Final rally• Symbolic language• Visions• Dying alone


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Signs of Imminent Death

• Changes in mentation

• Loss of eyelash reflex

• Changes in breathing patterns

• Decreased urinary output

• Cooling and mottling of extremities


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The Death Event

• Signs of death

• Rituals and family support

• Post-mortem care


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Professional Coping

• Importance of self care

• View of dying

• Personal feeling about patients who die

• Recognize limits


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Conclusion

• Assist patient to meet goals• Individualize the environment• Anticipate symptom management• Anticipate spiritual care needs• Facilitate grieving• Recognize importance of self care


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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

end of life communication & collaboration “care of the actively dying” cheryl vahl msn aocn...

Documents

goals of care

end of life care

good care

palliative care program

priorities slide

family goals

palliative nurse slide

patient goals