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Modules:

  • Introduction
  • 1. Advance Care Planning
  • 2. Communicating Bad News
  • 3. Whole Patient Assessment
  • 4. Pain Management
  • 5. Assisted Suicide Debate
  • 6. Anxiety, Delirium
  • 7. Goals of Care
  • 8. Sudden Illness
  • 9. Medical Futility
  • 10. Common Symptoms
  • 11. Withholding Treatment
  • 12. Last Hours of Living
  • 13. Cultural Issues
  • 14. Religion, Spirituality
  • 15. Legal Issues
  • 16. Social and Psychological
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    Back to Module 12: Last Hours of Living
    Part I: Physiological Changes and Symptom Management During the Dying Process

    Weakness/Fatigue
    Decreasing Appetite/Food Intake, Wasting
    Decreasing Fluid Intake, Dehydration
    Decreasing Blood Perfusion, Renal Failure
    Neurological Dysfunction: An Overview Pain
    Loss of Ability to Close Eyes
    Changes in Medication Needs

    Overview of Neurological Dysfunction in the Dying Process

    • The neurological changes associated with the dying process are the result of multiple concurrent nonreversible factors, including:
      • Hypoxemia
      • Metabolic imbalance
      • Acidosis
      • Toxin accumulation due to liver and renal failure
      • Adverse effects of medication
      • Sepsis
      • Disease-related factors
      • Reduced cerebral perfusion
    • The neurological changes associated with the dying process may manifest in 2 different patterns that have been described as the "two roads to death"
      1) The "usual road" that most patients follow presents as decreasing level of consciousness that leads to coma and death
      2) The "difficult road" that a few patients follow presents as an agitated delirium due to CNS excitation, with or without myoclonic jerks that leads to coma and death. Based on clinical observation, it is likely that the risk of focal or grand mal seizures is increased along the "difficult road", particularly when cerebral metastases are present

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    Decreasing Level of Consciousness: Signs and Symptoms

    Signs and Symptoms

    • The majority of patients traverse the "usual road to death"
    • They experience increasing drowsiness, sleep most if not all of the time, and eventually become unrousable
    • Absence of eyelash reflexes on physical examination indicates a profound level of coma equivalent to full anesthesia

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    Management (Communication with the Unconscious Patient)

      1. Plan ahead to reduce family distress
    • Families will frequently find that their decreasing ability to communicate is distressing
    • The last hours of life are the time when they most want to communicate with their loved one
    • As many clinicians have observed, the degree of family distress seems to be inversely related to the extent to which advance planning and preparation occurred
    • Time spent preparing families is likely to be very worthwhile
      2. Assume the unconscious patient can hear everything
    • While we do not know what unconscious patients can actually hear, experience suggests that at times their awareness may be greater than their ability to respond
    • Given our inability to assess dying patient’s comprehension and the distress that talking "over" the patient may cause, it is prudent to presume that the unconscious patient hears everything
    • Advise families and professional caregivers to talk to the patient as if he or she was conscious
      3. Encourage families to create an environment that is familiar and pleasant
    • Surround the patient with the people, children, pets, things, music, and sounds that he or she would like
    • Include the patient in everyday conversations
    • Encourage family to say the things they need to say
    • At times, it may seem that a patient may be waiting for permission to die
      • If this is the case, encourage family members to give the patient permission to "let go" and die in a manner that feels most comfortable to them

      • The physician or other caregivers might suggest to family members other words like:

          "I know that you are dying, please do so when you are ready"

          "I love you. I will miss you. I will never forget you. Please do what you need to do when you are ready"

          "Mommy and Daddy love you. We will miss you, but we will be OK"
    • As touch can heighten communication:
      • Encourage family members to show affection in ways they are used to

      • Let them know that it is okay to lie beside the patient in privacy to maintain as much intimacy as they feel comfortable with

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    Terminal Delirium: Signs and Symptoms

    Signs and Symptoms

    • Delirium may be the first sign to herald the "difficult road to death"
    • It frequently presents as confusion, restlessness, and/or agitation, with or without day-night reversal
    • It may result from any of the standard causes of delirium listed in DSM-IV (American Psychiatric Association, 1994) that can accompany the dying process
    • Agitated terminal delirium can be very distressing to family and professional caregivers who do not understand it
    • Although previous care may have been excellent, if the delirium goes misdiagnosed or unmanaged, family members will likely remember a horrible death "in terrible pain" and may worry that their own death will be the same

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    Aspects of Management

      1. Prepare Family/Caregivers
    • In anticipation of the possibility of terminal delirium, educate and support family and professional caregivers to understand:
      • The causes of terminal delirium
      • The finality and irreversibility of the situation
      • Approaches to its management
      • That what the patient experiences may be very different from what onlookers see
      2. Treat underlying causes only if death is NOT imminent
    • If delirium presents and the patient is not perceived to be actively dying, it may be appropriate to evaluate and try to reverse treatable contributing factors
      • However, if the patient is close to the last hours of his or her life, this is only effective in a minority of cases

    • If death is imminent, it will not be possible to reverse the underlying causes. Focus on:
      • The management of the symptoms associated with the terminal delirium

      • Settling the patient and the family
      3. Use Opioids with Caution
    • When moaning, groaning, and grimacing accompany agitation and restlessness, they are frequently misinterpreted as pain
    • However, it is a myth that pain suddenly develops during the last hours of life when it has not previously been out of control
    • While a trial of opioids may be beneficial in the unconscious patient who is difficult to assess, physicians must remember that opioids may accumulate and add to delirium when renal clearance is poor (see Module 4: Pain Management)
    • If the trial of increased opioids does not relieve the agitation or makes the delirium worse by increasing agitation or precipitating myoclonic jerks or seizures (rare), then pursue alternate therapies directed at suppressing the symptoms associated with the delirium
      4. Medication Management of Delirium
    • Benzodiazepines are used widely as they are anxiolytics, amnestics, skeletal muscle relaxants, and antiepileptics
      • Oral lorazepam 1–2 mg as an elixir or the tablet predissolved in 0.5–1.0 ml of water and administered against the buccal mucosa q 1h prn will settle most patients with 2–10 mg/24 hours. It can then be given in divided doses, q 3–4h to keep the patient settled

      • For a few extremely agitated patients, high doses of lorazepam 20–50+ mg/24 hours, may be required

      • A midazolam infusion of 1–5 mg SC or IV q 1h, preceded by repeated loading boluses of 0.5 mg q 15min to effect, may be a rapidly effective alternative
    • Neuroleptic medications may be required to control delirium for patients for whom benzodiazepines prove excitatory and not have the desired settling effect
      • Haloperidol (0.5–2.0 mg q hs to q 6h to start and titrated) given intravenously, subcutaneously, or rectally may be effective

      • Chlorpromazine (10–25 mg PO q hs to q 6h to start and titrated), given intravenously or rectally, is a more sedating alternative
    • Seizures may be managed with high doses of benzodiazepines. Other antiepileptics such as phenytoin PR or IV, fosphenytoin SC, or phenobarbital 60–120 mg PR, IV, or IM q 10–20min prn may become necessary until control is established

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    Changes in Respiration

    Signs and Symptoms

    • Changes in a dying patient’s breathing pattern may be indicative of significant neurological compromise
    • Breaths may become very shallow and frequent with a diminishing tidal volume
    • Periods of apnea and/or Cheyne-Stokes pattern respirations may develop
    • Accessory respiratory muscle use may become prominent
    • A few (or many) last reflex breaths may signal death
    • Families and professional caregivers may frequently:
      • Find changes in breathing patterns to be one of the most distressing signs of impending death

      • Fear that the comatose patient will experience a sense of suffocation

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    Management

    • Educate and support family and caregivers, helping them to understand that:
      • The unresponsive patient may not be experiencing breathlessness or "suffocating"

      • Oxygen may actually prolong the dying process

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    Loss of Ability to Swallow

    Signs and Symptoms

    • In the last hours of life, weakness and decreased neurological function frequently impair the patient’s ability to swallow
    • The gag reflex and reflexive clearing of the oropharynx decline and secretions from the tracheobronchial tree accumulate
    • These conditions may become more prominent as the patient loses consciousness
    • Buildup of saliva and oropharyngeal secretions may lead to gurgling, crackling or rattling sounds with each breath
      • Some have called this the "death rattle" (a term frequently disconcerting to families and caregivers)

      • For unprepared families and professional caregivers, it may sound like the patient is choking

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    Management

      1. Cease oral intake
    • Once the patient is unable to swallow, cease oral intake
    • Warn families and professional caregivers of the risk of aspiration
      2. Reduce saliva and secretion production
    • Use of medications to reduce the production of saliva and other secretions:
      • Will minimize or eliminate the gurgling and crackling sounds, and
      • May be used prophylactically in the unconscious dying patient
    • Anecdote suggests that the earlier treatment is initiated, the better it works, as larger amounts of secretions in the upper aerodigestive tract are more difficult to eliminate
    • However, premature use in the patient who is still alert may lead to unacceptable drying of oral and pharyngeal mucosa
    • Recommended medications and dosages include:
      • Scopolamine 0.2–0.4 mg SC q 4h or 1–3 transdermal patches q 72h or 0.1–1.0 mg/h by continuous IV or SC infusion

      • Glycopyrrolate 0.2 mg SC q 4–6h or 0.4–1.2 mg/day by continuous IV or SC

      • While atropine may be equally effective, it has an increased risk of producing undesired cardiac and/or CNS excitation
      3. Use repositioning to clear accumulated fluids
    • If excessive fluid accumulates in the back of the throat and upper airways, it may need to be cleared by repositioning the positioning or postural drainage
    • Turning the patient onto one side or a semiprone position may reduce gurgling
    • Lowering the head of the bed and raising the foot of the bed while the patient is in a semi-prone position may cause fluids to move in the oropharynx from which they can be easily removed
    • Do not maintain this position for more than a few minutes at a time as stomach contents may also move unexpectedly
      4. Avoid suctioning
    • Oropharyngeal suctioning is not recommended
    • It is frequently ineffective as fluids are beyond the reach of the catheter
    • Suctioning may have only undesirable effects, such as:
      • Stimulating an otherwise peaceful patient
      • Causing distress for family members who are watching

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    Loss of Sphincter Control

    • Fatigue and loss of sphincter control in the last hours of life may lead to incontinence of urine and/or stool
    • Both can be very distressing to patients and family members, particularly if people are not warned in advance that these problems may arise
    • If incontinence occurs, attention needs to be paid to cleaning and skin care
    • A urinary catheter may:
      • Minimize the need for frequent changing and cleaning
      • Prevent skin breakdown
      • Reduce the demand on caregivers
    • However, catheterization is not always necessary if urine flow is minimal and can be managed with absorbent pads or surfaces
    • If diarrhea is considerable and relentless, a rectal tube may be similarly effective
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