Diagnosing Dying: Physiology & Management


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An introduction to the physiology and management of the dying process with emphasis on how to recognize patients who are dying. Geared toward physicians in the hospital setting.

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  • How many of you want to die suddenly or in your sleep?
  • Most (>90%) will die after a long period of illness with gradual deterioration until an active dying phase at the end
    Most clinicians have little or no formal training to manage the dying process or death
    Families usually have even less experience or knowledge
    Most people have developed an exaggerated sense of what dying and death are like
    Care provided during those last hours and days can have profound effects, not just on the patient, but on all who participate

    Lebenstreppe (“steps of life”) called “Ages of Man” by an unknown Spanish Artist.
  • Complicated grief causes significant social or occupational dysfunction
    accompanied by inability to trust, excessive bitterness and intense loneliness.
  • Gather questions.
    Hand out worksheet
  • Mitchell Score (6mo mortality in NH residents with AD): 12.5, 70% 6mo mortality
    Based on PPS: 8-40 days

    How many have the knowledge to be able to describe the process of dying?
    How many of you feel confident describing dying to patients & family?
  • Make the diagnosis!
    Anticipatory guidance: something we do to prepare people for what to expect in the coming hours, days, weeks
    The degree of family distress seems to be inversely related to the extent to which advance planning and preparation occurred
    The time spent preparing families is likely to be very worthwhile
  • 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
    Let them know that it is okay to touch
    Include the patient in everyday conversations

  • Image 1: http://framework.latimes.com/2011/11/19/in-prison-and-dying-hospice-care-in-a-high-security-penitentiary
    Image 2: http://static.squarespace.com/static/50ee28a8e4b09f4e6d9579a1/5222bfb2e4b02733badc6962/527302c8e4b0804eedc17376/1383269066530/Website%2010_31_2013%20(4%20of%2026).jpg?format=1000w
    Image 3: http://www.nytimes.com/2007/09/10/health/10pain.html
  • There are a variety of physiological changes that occur in the last hours and days of life, and when the patient is actually dying
    Each can be alarming if it is not understood
    The most common issues are summarized here
    We will start by reviewing physiology and later move to management
  • Association with last 3 days of life:
    Reasonable specificity
    Poor sensitivity
    Minimal PPV
    =Low likelihood ratio (not predictive)
    Nearly 50% of pts had normal vitals on their last day of life!
    “Taken together, the presence or absence of vital sign changes, when used on their own, cannot uniformly rule in or rule out impending death.”
  • As this is irreversible, weakness and fatigue need not be resisted
    It is likely that the patient will not be able to move around in the bed or raise his or her head
    Joints may become uncomfortable if they are not moved
    Continuous pressure on the same area of skin, particularly over bony prominences, will increase the risk of skin ischemia and pain
    Fever is common in active dying and can climb quite high

  • As cardiac output and intravascular volume decrease at the end of life, there will be evidence of diminished peripheral blood perfusion
    Normal: Tachycardia, hypotension, peripheral cooling, peripheral and central cyanosis
  • Sign of diminished cutaneous perfusion
    Variably present

    Image credit: http://intuitionismyammunition.files.wordpress.com/2011/05/mottledskin.jpg
  • Urine output falls as perfusion of the kidney diminishes
    Oliguria or anuria is normal
  • Knowledge of opioid pharmacology becomes critical during the last hours of life
    As dying patients experience diminished hepatic function and renal perfusion, and usually become oliguric or anuric, routine dosing or continuous infusions of morphine may lead to increased serum concentrations of active metabolites, toxicity, and an increased risk of terminal delirium
    To minimize this risk, discontinue routine dosing or continuous infusions of morphine when urine output and renal clearance stop
    Consider the use of alternative opioids with inactive metabolites such as fentanyl
  • Breathing with mandibular movement & secretions have some evidence for prediction of last hours of life (Hwang et al, 2013. Morita et al, 1999).
    Cheyne-Stokes or “guppy” breathing are common findings
    Monitor for discomfort using facial grimacing
    Secretions; Some have called this the ‘death rattle’
    Weakness and decreased neurological function frequently combine to impair the patient’s ability to swallow
    The gag reflex and reflexive clearing of the oropharynx decline and secretions from the tracheobronchial tree accumulate
    Buildup of saliva and oropharyngeal secretions may lead to gurgling, crackling, or rattling sounds with each breath
  • Families and professional caregivers frequently find changes in breathing patterns to be one of the most distressing signs of impending death
    Many fear that the comatose patient will experience a sense of suffocation
    Knowledge that the unresponsive patient may not be experiencing breathlessness or ‘suffocating’ may be very comforting
    Dying patients may not benefit from oxygen
    Low doses of opioids or benzodiazepines are appropriate to manage any perception of breathlessness
  • Japan in 2007 (Shimizu et al, 2014):
    46% of pts experienced secretions
    53% perceived its presence as a sign of suboptimal medical care
    66% of family reports high distress levels (high in females, those unaware that it is a natural phenomenon & those with distressing interpretations/fears re: the phenomenon)

    Once the patient is unable to swallow, cease oral intake
    Reconsider any IVF or ANH that may be on board
    {{CLICK}} If excessive fluid accumulates in the oropharynx and tracheobronchial tree (hypopharynx), it may need to be cleared by repositioning the patient or postural drainage
    Turning the patient onto one side
    If postural changes don’t help, oropharyngeal suctioning is unlikely to work
    It is frequently ineffective & often distressing
    Fluids are beyond the reach of the catheter (hypopharyngeal)
    Glycopyrrolate 0.2-0.8 q4 hrs
    May be used prophylactically in the unconscious dying patient
    Anecdote suggests that the earlier treatment is initiated, the better it works
    Premature use in the patient who is still alert may lead to drying of oral and pharyngeal mucosa
  • Nausea with PO food or fluid
    Most experts feel that dehydration in the last hours of living does not cause distress and may stimulate endorphin release that promotes the patient’s sense of well-being
    Loss of sphincter control is distressing to all involve and threatens skin integrity
  • Most patients lose their appetite
    families and professional caregivers may interpret cessation of eating as ‘giving in’ or ‘starving to death’
    Physicians can help families understand that loss of appetite is normal at this stage
    Help direct families and caregivers to find alternate ways to express their need to provide appropriate physical care and emotional support to the patient
    Remind family:
    patient is not hungry,
    food either is not appealing or may be nauseating,
    patient would likely eat if he or she could,
    clenching of teeth may be the only way for the patient to express desires
    food forced on the unwilling patient may cause problems such as aspiration and be anxiety-provoking
    Help them to find alternate ways to provide appropriate care
  • Most patients stop drinking
    This may heighten onlookers’ distress as they worry that the dehydrated patient will suffer, particularly if he or she becomes thirsty
    As with feeding, families and professional caregivers will need support to understand that this is an expected event
    Benefit IVF:
    May prolong life
    May be a component of delirium management
    Burden IVF:
    Does not improve sensation of xerostomia
    Intravenous lines can be cumbersome and difficult to maintain
    Excess parenteral fluids can lead to fluid overload with consequent peripheral or pulmonary edema, worsened breathlessness, cough, and orotracheobronchial secretions
    Oral care
    To maintain patient comfort and minimize the sense of thirst, even in the face of dehydration, maintain moisture in mucosal membranes with meticulous oral, nasal, and conjunctival hygiene
    Moisten and clean oral mucosa every 15 to 30 minutes
    Treat oral candidiasis with topical nystatin or systemic fluconazole if the patient is able to swallow
    Coat lips and anterior nasal mucosa hourly with a thin layer of petroleum jelly to reduce evaporation
  • Advanced wasting leads to loss of the retro-orbital fat pad, and the orbit falls posteriorly within the orbital socket
    As eyelids are of insufficient length to both extend the additional distance backward and cover the conjunctiva, they may not be able to fully appose
    This may leave some conjunctiva exposed even when the patient is sleeping

    Charon’s Obol (or viaticum): a coin placed on the eye or mouth as a bribe for Charon (ˈkɛərɒn) who ferries the souls of the dead across the river Styx.
  • Loss of ability to swallow and changes in respiratory patterns are indicators of severe neurological dysfunction.
    While we do not know what unconscious patients can actually hear, extrapolation from data from the operating room and ‘near death’ experiences suggests that at times their awareness may be greater than their ability to respond
    Presume that the unconscious patient hears & feels everything
    Talk to the patient as if he or she were conscious
    Delirium is variably present, may be hypo- or hyperactive
  • While many people fear that pain will suddenly increase as the patient dies, there is no evidence to suggest this occurs
    Do not confuse pain with the restlessness, agitation, moaning, and groaning that accompany terminal delirium
    If the diagnosis is unclear, a trial of opioid may be necessary to judge whether pain is driving the observed behaviors
  • The majority of patients traverse the ‘usual road to death’
    increasing drowsiness, sleep most if not all of the time, and eventually become unarousable
    Absence of eyelash reflexes on physical examination indicates a profound level of coma equivalent to full anesthesia
    An agitated 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
    To the family and professional caregivers who do not understand it, agitated terminal delirium can be very distressing
    When moaning, groaning, and grimacing accompany the agitation and restlessness, they are frequently misinterpreted as physical pain
  • 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 cognitively impaired ‘because of the drugs’ and may worry that their own death will be the same
    In anticipation of the possibility of terminal delirium, educate and support family and professional caregivers to understand its causes, the finality and irreversibility of the situation, and approaches to its management
    It is particularly important that all onlookers understand that what the patient experiences may be very different from what they see
    Set expectation that symptom may not ever be fully managed and that some level of sedation will be necessary
    Reversible vs. irreversible
  • “Doctor, what do I do when she dies at home?”
  • Your chance to bring a true healing presence to the bedside. A high-stakes moment for you as the physician and for the family in the room.

    “Please come, I think the patient has died.”
    Find out the circumstances of the death – expected or sudden?
    Is the family present?
    What is the patient’s age?
    Preparation before you enter the room
    Confirm the details on the circumstances of death by asking a nurse or caregiver
    Review the chart for important medical (length of illness, cause of death) and family issues (who is family?, faith?, is there a clergy contact?)
    Find out who has been called.
    Other physicians?
    The attending?
    Has an autopsy ever been requested?
    Do you see a value in requesting an autopsy?
    Has the subject of organ donation been broached?
    Has the Organ Donor Network been contacted?
    In the room
    You may want to ask the nurse or chaplain to accompany you; he/she can give you support and introduce you to the family
    Introduce yourself (including your relationship to the patient) to the family if they are present
    Ask each person their name and relationship to the patient
    Shake hands with each
    Say something empathic: “I’m sorry for your loss...” or “This must be very difficult for you...”
    Explain what you are there to do
    Tell the family they are welcome to stay if they wish, while you examine their loved one
    Ask what questions the family has
    If you cannot answer, contact someone who can
    The pronouncement
    Identify the patient
    Use the hospital ID tag if available
    Note the general appearance of the body.
    Test for response to verbal or tactile stimuli
    Overtly painful stimuli are not required
    Nipple or testicle twisting, or deep sternal pressure, are inappropriate
    Listen for the absence of heart sounds; feel for the absence of carotid pulse
    Look and listen for the absence of spontaneous respirations
    Record the position of the pupils and the absence of pupillary light reflex
    Record the time at which your assessment was completed
    Confirm aloud to the family that their loved one has died. Families expect this from TV/Movies/etc.
    Documentation in the medical record
    Called to pronounce (name); chart findings of physical examination
    Note date and time of death; distinguish time family or others noted death from the time you confirmed the absence of vital signs
    Note if family and attending physician were notified.
    Document if family declines or accepts autopsy; document if the coroner was notified
  • Diagnosing Dying: Physiology & Management

    1. 1. DIAGNOSING DYING: PHYSIOLOGY & MANAGEMENT FOR GENERALISTS Kyle P. Edmonds, MD Assistant Clinical Professor Doris A. Howell Palliative Care Service UC San Diego Health System Adapted from Palliative Care International Curriculum, Ed. Frank R. Ferris
    2. 2. OVERALL MESSAGE Diagnosis and management of dying is an overlooked aspect of medical care. The family’s perception of the process can have long-term consequences. Dying is not inherently uncomfortable.
    3. 3. ANTICIPATORY GUIDANCE: LAST HOURS Everyone will die < 10 % suddenly Unique processes & risks Little experience
    4. 4. ANTICIPATORY GUIDANCE: COMPLICATED BEREAVEMENT Hx complicated bereavement Psych Hx / Dependent personality Out of life-cycle norms Poor social support Absent frame of reference Sudden/violent death
    5. 5. MRS. A 84yo mother of two in the ED with cough/PNA Accompanied by 62yo daughter PMHx: Alzheimer dementia, distant Hx of curative lumpectomy for breast cancer, HTN, osteoarthritis
    6. 6. MRS. A (CON’T) Presently: hypothermic, low white count, left shift; CXR with bibasilar atelectasis vs. consolidation You admit her and start IV Abx What else do you need to know?
    7. 7. DISCUSS MRS. A (~10 MINUTES)
    8. 8. PRINCIPLES OF MANAGEMENT Diagnose Anticipatory guidance Environment Assessment Acknowledge Fears
    9. 9. Serious Illness Dx: Dying Ongoing Care Death Care after death Recovery Adapted from : Ellershaw & Ward, 2003.
    10. 10. NORMALIZE THE ENVIRONMENT Family presence Turn off monitors Minimize procedures Stop oxygen Include pt in conversations Touch
    12. 12. PHYSIOLOGY OF DYING Cardiovascular Renal Respiratory Gastrointestinal HEENT Constitutional Neurological
    13. 13. VITAL SIGNS Adapted from Fig 1: Bruera et al., 2014.
    14. 14. CONSTITUTIONAL Terminal fever Pressure ulcer risk Symptoms: Weakness; Fatigue; Joint position fatigue
    15. 15. FEVER Fears: Suffering, Hastened death Management Noninvasive cooling Rectal acetaminophen
    16. 16. CARDIOVASCULAR Tachycardia, hypotension Peripheral cooling, cyanosis Third-spacing Mottling of skin… Symptoms: dizziness, edema
    17. 17. MOTTLING
    18. 18. RENAL Decreasing urine output Diminished GFR (changing pharmacokinetics) Symptom: generally comfortable
    19. 19. PAIN: CONTINUOUS OPIOIDS & OLIGURIA <20ml/hr (500ml/d): decrease <10ml/hr (250ml/d): stop! Always: bolus for symptoms
    20. 20. RESPIRATORY Patterns:  Tachypnea, Apnea  Chin-lift, jaw-jerk* Diminishing tidal volume Oropharyngeal secretions* Symptoms: generally comfortable
    21. 21. CHANGES IN RESPIRATION Fear: suffocation Management Family support Oxygen variably effective Opioids
    22. 22. SECRETIONS Fear: Choking, Drowning Management Reassurance Positioning Glycopyrrolate
    23. 23. GASTROINTESTINAL Loss of ability to swallow Dehydration Ileus Symptoms: anorexia; nausea; dry mouth; incontinence
    24. 24. DECREASING FOOD INTAKE Fear: Starvation Management Normalize & Reframe Food for comfort Aspiration risk
    25. 25. PATIENT/FAMILY MEANING “Food” = ?
    26. 26. PATIENT/FAMILY MEANING No! “Food” =
    27. 27. DECREASING FLUID INTAKE Fears: Thirst Management Reassure Benefit/Burden of IVF Oral care
    28. 28. HEENT Open eyes  Loss of retro-orbital fat pad  Insufficient eyelid length Slack Mouth Symptoms: dry eyes; dry mouth
    29. 29. XEROSTOMIA / XEROPHTHALMIA Fears: Thirst, Suffering Management Oral care Eye care
    30. 30. NEUROLOGICAL Progressive decrease in LOC Preserved hearing & touch Delirium Pain not automatic! Symptoms: Confusion; Drowsiness
    31. 31. PAIN Fear:  Uncontrolled pain Grimace Physiologic signs Incident vs. rest pain Differentiation from delirium
    32. 32. Restless Confused Tremulous Hallucinations Mumbling Delirium Myoclonic Jerks Sleepy Lethargic Obtunded Semicomatose Comatose Seizures USUAL ROAD DIFFICULT ROAD Baseline Dead NEUROLOGICAL: TWO ROADS TO DEATH
    33. 33. TERMINAL DELIRIUM Fear: Terror Management Diagnosis Consult me.
    34. 34. AFTER DEATH Cardiopulmonary arrest Eyes often open Pupils fixed Jaw open Waxen pallor Muscles, sphincters relax
    35. 35. PRONOUNCING DEATH “ Please come… ” Entering the room Pronouncing Documenting
    36. 36. OVERALL MESSAGE Diagnosis and management of dying is an overlooked aspect of medical care. The family’s perception of the process can have long-term consequences. Dying is not inherently uncomfortable.
    37. 37. DIAGNOSING DYING: PHYSIOLOGY & MANAGEMENT Kyle P. Edmonds, MD kpedmonds@ucsd.edu O: 619-471-9424 P: 619-290-1212 M: 928-853-1483 Adapted from Palliative Care International Curriculum, Ed. Frank R. Ferris
    38. 38. REFERENCES  Cozzolino, P, J., Staples, A, D., Meyers, L, S., & Samboceti, J. (2004). Greed, Death, and Values: From Terror Management to Transcendence Management Theory. Personality and Social Psychology Bulletin, 30, 278-292.  Fulton CL, Else R. Physiotherapy. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford, England: Oxford University Press; 1998:821-822. ISBN: 0192625667.  Hughes AC, Wilcock A, Corcoran R. Management of “death rattle”. J Pain Symptom Manage. 12:271-272. PMID: 8942121. Full Text.  Sykes N, Thorns A. Sedative use in the last week of life and the implications for end-of-life decision making. Arch Intern Med. 2003;163(3):341-4. PMID: 12578515. Full Text.  Storey P. Symptom control in Dying. In: Principles and Practice of Supportive Oncology. Ed: A Berger, RK Portenoy, D Weissman. Lippincott-Raven Publishers, Philadelphia 1998;741-748. ISBN: 0397515596.  Twycross R, Lichter I. The terminal phase. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford, England: Oxford University Press; 1998:977-992. ISBN: 0192625667.  Weissman DE, Heidenreich CA.Fast facts and concepts #4 death pronouncement in the hospital. End of Milwaukee, WI: End of Life Physician Education Resource Center. Fast Facts Index. Full Text HTML. Full Text PDF.