Optimizing Care in the Final Days of Life

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Optimizing Care in the Final Days of Life

• Jennifer A. Ramin, MSN, ACHPN, ANP, BC
• Hospice and Palliative Care Nurse Practitioner
• IPC-The Hospitalist Company
• Carondelet Hospice and Palliative Care

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Goals for this session

• Describe the Syndrome of Imminent Death
• Discuss management of common symptom complexes at
  the end of life
• Discuss opioid induced neurotoxicity
• Review nutrition and hydration at the end of life
  and common concerns
• Address requests for hastened death

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Syndrome of Imminent Death

• Time course 24 hours to 2 weeks
• Variability
• Disease process
• Physical reserves
• Hydration
• Family education and anticipatory guidance
• See EPERC guide
• Confirmation of observations
• Repetition

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Progressive Changes

• Change in mental state (confusion,
  disorientation, delirium)
• Weakness and fatigue
• Decreased oral intake and swallow reflex
• Decreased blood perfusion/Renal failure
• Vital sign changes
• Incontinence/possible retention

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Syndrome of Imminent Death

• Transitioning or the Early Phase
• Bedbound
• Incontinent
• Decrease in ability and/or interest to eat or
  drink
• Cognitive changes
• Social withdrawal, decreased interest in world
• Disorientation
• Visits from dead relatives/friends

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Syndrome of Imminent Death

• Middle Phase
• Tracheal congestion
• Further cognitive changes
• Slow to arouse
• Brief wakefulness/responsiveness
• No oral intake

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Syndrome of Imminent Death

• Late Phase
• Comatose
• Temperature instability
• Altered respiratory pattern
• Mottling and cool extremities
• Absence of peripheral pulses

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General Approach to Care

• Transition to comfort care if not already in
  progress
• Stop interventions and monitoring not
  contributing to comfort
• Treat symptoms as they arise
• Provide excellent oral and skin care
• Be present and honest, sit down, assist with
  family concerns/conflicts
• Attend to own emotional responses and support

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Dying in institutions

• Home-like environment
• Permit privacy, intimacy
• Personal items, photos
• Remove monitors and unnecessary equipment
• Continuity of care plans
• Avoid abrupt changes of settings
• Consider a specialized unit

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Communication with the unconscious patient . . .

• Distressing to family
• Awareness gt ability to respond
• Assume patient hears everything

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. . . Communication with the unconscious patient

• Create familiar environment
• Include in conversations
• Assure of presence, safety
• Give permission to die
• Touch

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Symptom Management Delirium

• Hyperactive vs. hypoactive
• Rule out reversible causes
• Bowel/bladder
• Pain
• Dyspnea/hypoxia
• Positioning
• Medication side effects
• Drug/alcohol/tobacco withdrawal

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Symptom Management Delirium

• Unresolved psychological or spiritual issues
• Permission to die
• Reassurance of survivors well being
• Dying Well by Ira Byock, MD
• Thank you
• Forgive me
• I forgive you
• I love you
• Good bye

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Symptom Management Delirium

• Non-pharmacologic approach
• Calm environment
• Safety (bed on floor)
• Dim lights
• Family/pet presence

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Symptom Management Delirium

• In cases of distressing restlessness, agitation,
  combativeness, or unsafe behavior, consider
  sedating medications
• Haloperidol /- benzodiazepine
• Chlorpromazine
• Phenobarbital
• Controlled/Palliative Sedation if refractory

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Symptom Management Tracheal Congestion/Rattle

• Most commonly secretions in the back of the
  throat the patient is unable to clear
• If distressing to patient or family, consider
• Anticholinergics
• Transdermal scopolamine
• Atropine drops sublingually
• Glycopyrrolate injection
• Oral (not deep) suctioning
• Positioning on side

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Symptom ManagementHemorrhage

• Anticipatory guidance critical
• Position with bleeding site down if possible
• Dark colored towels to minimize appearance of
  blood volume
• Plan for rapid sedation
• Elevate head

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Special Consideration AICD

• An AICD may deliver an uncomfortable shock to the
  patient during the dying process
• Deactivation is indicated when
• Patient is no longer able to take anti-arrhythmic
  drugs
• Patient is actively dying
• Family education
• Not painful to deactivate
• Will not cause death

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Complications of Symptom ManagementOpioid
Induced Neurotoxicity
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Opioid Induced Neurotoxicity

• Opioid side effects
• Constipation
• Nausea
• Pruritus
• Urinary retention
• Neuroexcitatory effects
• 3-glucuronide metabolites implicated
• Worsened with rapid titration, dehydration,
  electrolyte abnormalities, renal failure

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Opioid Induced Neurotoxicity

• Neuroexcitatory side effects
• Myoclonus
• Hyperalgesia
• Delirium
• Seizures
• Medication risk profile
• meperidinegtgtmorphinegtoxycodonegthydromorphonegtmetha
  donegtfentanyl

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Opioid Induced Neurotoxicity

• Treatment
• Opioid rotation or dose reduction
• Benzodiazepines for myoclonus
• Low dose hydration (30ml/h NS) to increase
  clearance of toxicity causing metabolites

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Controversies at the End of LifeNutrition and
Hydration
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Nutrition and Hydration at the End of Life

• Arent we starving her?
• Wont he be thirsty?
• Emotional/cultural role of feeding as
  nurturing/caring

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Nutrition and Hydration at the End of Life

• Most actively dying patients do not experience
  thirst or hunger, though dry mouth is a common
  problem and is not related to hydration status
• Patients receiving enteral artificial nutrition
  who enter the actively dying phase have increased
  residuals, aspiration, and pulmonary congestion

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Nutrition and Hydration at the End of Life

• The case AGAINST hydration at the end of life
• Parenteral fluids may prolong the dying process
• Dehydration decreases distressing edema or
  ascites
• Dehydration may provide endogenous anesthesia
  that eases dying process
• Dehydration may decrease gastric secretions,
  lessening nausea
• Hydration may increase pulmonary congestion,
  cough, dyspnea
• Infusions can be uncomfortable and limit mobility

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Nutrition and Hydration at the End of Life

• The case FOR hydration at the end of life
• Dehydration leads to renal impairment which
  causes accumulation of drug metabolites causing
  toxicity
• There is no definitive evidence that hydration
  prolongs dying process
• It may ease family anxiety

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Nutrition and Hydration at the End of Life

• Approach to family discussions
• BALANCE
• Weigh risks and benefits
• Clarify underlying disease process
• Discuss hydration as a medical intervention, to
  be undertaken only when the benefits outweigh the
  risks
• Always attend to oral and eye care/moisture
• Consider a time limited trial to assess response
• Discontinue if harm occurs

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Controlled/Palliative Sedation
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Controlled/Palliative Sedation

• Use of sedative medications to relieve
  intolerable suffering from refractory symptoms
  by a reduction in patient consciousness
• An intervention of last resort when all possible
  treatment has failed, or it is estimated that no
  methods are available for palliation within the
  time frame and the risk-benefit ratio that the
  patient can tolerate.(Cherny Portnoy, 1994)
• J Pall Care, Sedation in the Management of
  Refractory Symptoms guidelines for evaluation
  and treatment

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Controlled/Palliative Sedation

• Regimens using midazolam, neuroleptics,
  phenobarbital, pentobarbital, propofol
• Proportionality to distress, rarely use
  emergency sedation for sudden onset (as in
  hemorrhage)
• Most common indications are delirium, dyspnea,
  pain, and vomiting. Rarely solely for
  pscho-existential distress

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Controlled/Palliative Sedation

• Palliative sedation therapy does not hasten
  death results from a prospective multicenter
  study
• Maltoni, et al. Annals of Oncology 20 1163-69,
  2009.
• Doctrine of double effect not needed to justify
  its use.

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Requests for a Hastened Death
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Evaluating Requests to Hasten Death

• Not uncommon, may be veiled (Oregon, Kevorkian)
• Motivation usually multifactorial
• Physical symptoms
• Progressive debility
• Loss of sense of self
• Loss of control
• Fear of future
• Fear of being a burden

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Evaluating Requests to Hasten Death

• Clarify request and individuals intention (and
  suicide risk)
• Support patient and reinforce your commitment to
  help find relief
• Evaluate decision making capacity and presence of
  depression
• Explore components of distress and respond
  empathetically
• Intensify treatment of potentially reversible
  elements

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Responding to Requests to Hasten Death

• Brainstorm options with multidisciplinary
  colleagues
• Seek ethics consultation when appropriate
• Possibilities for intervention
• Withdrawal of life sustaining interventions
• Voluntary withdrawal of oral intake
• Sedation for severe intractable symptoms
• Assisted suicide, legal only in Oregon after
  exhaustive process to find alternative

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Responding to Requests to Hasten Death

• Balance Integrity and Non-Abandonment

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Signs that death has occurred . . .

• Absence of heartbeat, respirations
• Pupils fixed
• Color turns to a waxen pallor as blood settles
• Body temperature drops

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. . . Signs that death has occurred

• Muscles, sphincters relax
• Release of stool, urine
• Eyes can remain open
• Jaw falls open
• Body fluids may trickle internally

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References

• WWW.EPERC.MCW.EDU
• Byock, I. (1997). Dying well peace and
  possibility at the end of life. New York
  Riverhead Books.
• De Graeff, A. Dean, M. (2007). Palliative
  sedation therapy in the last weeks of life a
  literature review and recommendations for
  standards. J Palliative Med, 10, 67-85.
• Maltoni, et al. (2009). Palliative sedation
  therapy does not hasten death results from a
  prospective multicenter study. Annals of
  Oncology, 20, 1163-69.
• Morita, et al. (2001). Effects of high dose
  opioids and sedatives on survival in terminally
  ill cancer patients. J Pain Symptom Manage, 21,
  282-89.