Download Care at the Time of Dying

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
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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
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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.
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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
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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
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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
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“Sacred space”
Objects and views
Lighting
Sound
Family space
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Care Environment Staff behaviors and attitudes
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Privacy and support
Sit, listen, convey compassion, concern
Importance of presence
Model behavior
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Symptom Management
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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
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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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Iowa Cancer Consortium & CChange
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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
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Repeated venipunctures
Iatrogenic infections
Worsening of edema
Increasing respiratory secretions
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Elimination Management
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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
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Listen
Allow control
Determine who is the decision-maker
Respect preferences
Address concerns
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Grieving
• Emotional responses to loss
• Types
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Anticipatory
Disenfranchised
Public
Normal vs. Complicated
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Risk Factors for
Complicated Grieving
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Enmeshed relationships
Multiple losses
Child’s loss of a parent
Death of a child
Substance abuse
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Grief Interventions
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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
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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
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Suffering, meaning, and hope
Cultural influences
Clergy support
Patient-family conflict of values/beliefs
Unresolved issues/relationships
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Spiritual Needs Intervention
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Chaplain/Clergy
Goal attainment
Forgiveness
Permission to die
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Request to Hasten Death
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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
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Final rally
Symbolic language
Visions
Dying alone
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Signs of Imminent Death
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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
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Importance of self care
View of dying
Personal feeling about patients who die
Recognize limits
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Conclusion
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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
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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
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