EPECEPECEPECEPEC EPECEPECEPECEPEC Last Hours of Living Module 12 The Project to Educate Physicians on End-of-life Care Supported by the American Medical Association and the Robert Wood Johnson Foundation

Last hours of living l Everyone will die < 10% suddenly > 90% prolonged illness l Last opportunity for life closure l Little experience with death exaggerated sense of dying process l Everyone will die < 10% suddenly > 90% prolonged illness l Last opportunity for life closure l Little experience with death exaggerated sense of dying process

Preparing for the last hours of life... l Time course unpredictable l Any setting that permits privacy, intimacy l Anticipate need for medications, equipment, supplies l Regularly review the plan of care l Time course unpredictable l Any setting that permits privacy, intimacy l Anticipate need for medications, equipment, supplies l Regularly review the plan of care

... Preparing for the last hours of life l Caregivers awareness of patient choices knowledgeable, skilled, confident rapid response l Likely events, signs, symptoms of the dying process l Caregivers awareness of patient choices knowledgeable, skilled, confident rapid response l Likely events, signs, symptoms of the dying process

EPECEPECEPECEPEC EPECEPECEPECEPEC Module 12, Part 1 Physiologic Changes, Symptom Management Module 12, Part 1 Physiologic Changes, Symptom Management

Objectives l Assess, manage the pathophysiologic changes of dying

Physiologic changes during the dying process l Increasing weakness, fatigue l Decreasing appetite / fluid intake l Decreasing blood perfusion l Neurologic dysfunction l Pain l Loss of ability to close eyes l Increasing weakness, fatigue l Decreasing appetite / fluid intake l Decreasing blood perfusion l Neurologic dysfunction l Pain l Loss of ability to close eyes

Weakness / fatigue l Decreased ability to move l Joint position fatigue l Increased risk of pressure ulcers l Increased need for care activities of daily living turning, movement, massage l Decreased ability to move l Joint position fatigue l Increased risk of pressure ulcers l Increased need for care activities of daily living turning, movement, massage

Decreasing appetite / food intake l Fears: “giving in,” starvation l Reminders food may be nauseating anorexia may be protective risk of aspiration clenched teeth express desires, control l Help family find alternative ways to care l Fears: “giving in,” starvation l Reminders food may be nauseating anorexia may be protective risk of aspiration clenched teeth express desires, control l Help family find alternative ways to care

Decreasing fluid intake... l Oral rehydrating fluids l Fears: dehydration, thirst l Remind families, caregivers dehydration does not cause distress dehydration may be protective l Oral rehydrating fluids l Fears: dehydration, thirst l Remind families, caregivers dehydration does not cause distress dehydration may be protective

... Decreasing fluid intake l Parenteral fluids may be harmful fluid overload, breathlessness, cough, secretions l Mucosa / conjunctiva care l Parenteral fluids may be harmful fluid overload, breathlessness, cough, secretions l Mucosa / conjunctiva care

Decreasing blood perfusion l Tachycardia, hypotension l Peripheral cooling, cyanosis l Mottling of skin l Diminished urine output l Parenteral fluids will not reverse l Tachycardia, hypotension l Peripheral cooling, cyanosis l Mottling of skin l Diminished urine output l Parenteral fluids will not reverse

Neurologic dysfunction l Decreasing level of consciousness l Communication with the unconscious patient l Terminal delirium l Changes in respiration l Loss of ability to swallow, sphincter control l Decreasing level of consciousness l Communication with the unconscious patient l Terminal delirium l Changes in respiration l Loss of ability to swallow, sphincter control

2 roads to death Restless Confused Tremulous Hallucinations Mumbling Delirium Myoclonic Jerks Sleepy Lethargic Obtunded Semicomatose Comatose Seizures THE USUAL ROAD THE DIFFICULT ROAD Normal Dead

Decreasing level of consciousness l “The usual road to death” l Progression l Eyelash reflex l “The usual road to death” l Progression l Eyelash reflex

Communication with the unconscious patient... l Distressing to family l Awareness > ability to respond l Assume patient hears everything l Distressing to family l Awareness > ability to respond l Assume patient hears everything

... Communication with the unconscious patient l Create familiar environment l Include in conversations assure of presence, safety l Give permission to die l Touch l Create familiar environment l Include in conversations assure of presence, safety l Give permission to die l Touch

Terminal delirium l “The difficult road to death” l Medical management benzodiazepines lorazepam, midazolam neuroleptics haloperidol, chlorpromazine l Seizures l Family needs support, education l “The difficult road to death” l Medical management benzodiazepines lorazepam, midazolam neuroleptics haloperidol, chlorpromazine l Seizures l Family needs support, education

Changes in respiration... l Altered breathing patterns diminishing tidal volume apnea Cheyne-Stokes respirations accessory muscle use last reflex breaths l Altered breathing patterns diminishing tidal volume apnea Cheyne-Stokes respirations accessory muscle use last reflex breaths

... Changes in respiration l Fears suffocation l Management family support oxygen may prolong dying process breathlessness l Fears suffocation l Management family support oxygen may prolong dying process breathlessness

Loss of ability to swallow l Loss of gag reflex l Buildup of saliva, secretions scopolamine to dry secretions postural drainage positioningsuctioning l Loss of gag reflex l Buildup of saliva, secretions scopolamine to dry secretions postural drainage positioningsuctioning

Loss of sphincter control l Incontinence of urine, stool l Family needs knowledge, support l Cleaning, skin care l Urinary catheters l Absorbent pads, surfaces l Incontinence of urine, stool l Family needs knowledge, support l Cleaning, skin care l Urinary catheters l Absorbent pads, surfaces

Pain... l Fear of increased pain l Assessment of the unconscious patient persistent vs fleeting expression grimace or physiologic signs incident vs rest pain distinction from terminal delirium l Fear of increased pain l Assessment of the unconscious patient persistent vs fleeting expression grimace or physiologic signs incident vs rest pain distinction from terminal delirium

... Pain l Management when no urine output stop routine dosing, infusions of morphine breakthrough dosing as needed (prn) least invasive route of administration l Management when no urine output stop routine dosing, infusions of morphine breakthrough dosing as needed (prn) least invasive route of administration

Loss of ability to close eyes l Loss of retro-orbital fat pad l Insufficient eyelid length l Conjunctival exposure increased risk of dryness, pain maintain moisture l Loss of retro-orbital fat pad l Insufficient eyelid length l Conjunctival exposure increased risk of dryness, pain maintain moisture

Medications l Limit to essential medications l Choose less invasive route of administration buccal mucosal or oral first, then consider rectal subcutaneous, intravenous rarely intramuscular almost never l Limit to essential medications l Choose less invasive route of administration buccal mucosal or oral first, then consider rectal subcutaneous, intravenous rarely intramuscular almost never

EPECEPECEPECEPEC EPECEPECEPECEPEC Physiologic Changes, Symptom Management Summary Summary

EPECEPECEPECEPEC EPECEPECEPECEPEC Module 12, Part 2 Expected Death Module 12, Part 2 Expected Death

Objectives l Prepare, support the patient, family, caregivers

As expected death approaches... l Discuss status of patient, realistic care goals role of physician, interdisciplinary team What patient experiences  what onlookers see What patient experiences  what onlookers see l Discuss status of patient, realistic care goals role of physician, interdisciplinary team What patient experiences  what onlookers see What patient experiences  what onlookers see

... As expected death approaches l Reinforce signs, events of dying process l Personal, cultural, religious, rituals, funeral planning l Family support throughout the process l Reinforce signs, events of dying process l Personal, cultural, religious, rituals, funeral planning l Family support throughout the process

Signs that death has occurred... l Absence of heartbeat, respirations l Pupils fixed l Color turns to a waxen pallor as blood settles l Body temperature drops l Absence of heartbeat, respirations l Pupils fixed l Color turns to a waxen pallor as blood settles l Body temperature drops

... Signs that death has occurred l Muscles, sphincters relax release of stool, urine eyes can remain open jaw falls open body fluids may trickle internally l Muscles, sphincters relax release of stool, urine eyes can remain open jaw falls open body fluids may trickle internally

What to do when death occurs l Don’t call 911 l Whom to call l No specific “rules” l Rarely any need for coroner l Organ donation l Traditions, rites, rituals l Don’t call 911 l Whom to call l No specific “rules” l Rarely any need for coroner l Organ donation l Traditions, rites, rituals

After expected death occurs... l Care shifts from patient to family / caregivers l Different loss for everyone l Invite those not present to bedside l Care shifts from patient to family / caregivers l Different loss for everyone l Invite those not present to bedside

... After expected death occurs l Take time to witness what has happened l Create a peaceful, accessible environment l When rigor mortis sets in l Assess acute grief reactions l Take time to witness what has happened l Create a peaceful, accessible environment l When rigor mortis sets in l Assess acute grief reactions

Moving the body l Prepare the body l Choice of funeral service providers l Wrapping, moving the body family presence intolerance of closed body bags l Prepare the body l Choice of funeral service providers l Wrapping, moving the body family presence intolerance of closed body bags

Other tasks l Notify other physicians, caregivers of the death stop services arrange to remove equipment / supplies l Secure valuables with executor l Dispose of medications, biologic wastes l Notify other physicians, caregivers of the death stop services arrange to remove equipment / supplies l Secure valuables with executor l Dispose of medications, biologic wastes

Bereavement care l Bereavement care l Attendance at funeral l Follow up to assess grief reactions, provide support l Assistance with practical matters redeem insurance will, financial obligations, estate closure l Bereavement care l Attendance at funeral l Follow up to assess grief reactions, provide support l Assistance with practical matters redeem insurance will, financial obligations, estate closure

Dying in institutions l Home-like environment permit privacy, intimacy personal things, photos l Continuity of care plans l Avoid abrupt changes of settings l Consider a specialized unit l Home-like environment permit privacy, intimacy personal things, photos l Continuity of care plans l Avoid abrupt changes of settings l Consider a specialized unit

EPECEPECEPECEPEC EPECEPECEPECEPEC Expected Death Summary Summary

EPECEPECEPECEPEC EPECEPECEPECEPEC Module 12, Part 3 Loss, Grief, Bereavement Module 12, Part 3 Loss, Grief, Bereavement

Objectives l Identify, manage initial grief reactions

Loss, grief with life- threatening illness... l Highly vulnerable l Frequent losses function / control / independence image of self / sense of dignity relationships sense of future l Highly vulnerable l Frequent losses function / control / independence image of self / sense of dignity relationships sense of future

... Loss, grief with life- threatening illness l Confront end of life high emotions multiple coping responses l Confront end of life high emotions multiple coping responses

Loss, grief, coping l Grief = emotional response to loss l Coping strategies conscious, unconscious avoidancedestructive suicidal ideation l Grief = emotional response to loss l Coping strategies conscious, unconscious avoidancedestructive suicidal ideation

Normal grief l Physical hollowness in stomach, tightness in chest, heart palpitations l Emotional numbness, relief, sadness, fear, anger, guilt l Cognitive disbelief, confusion, inability to concentrate l Physical hollowness in stomach, tightness in chest, heart palpitations l Emotional numbness, relief, sadness, fear, anger, guilt l Cognitive disbelief, confusion, inability to concentrate

Complicated grief... l Chronic grief normal grief reactions over very long periods of time l Delayed grief normal grief reactions are suppressed or postponed l Chronic grief normal grief reactions over very long periods of time l Delayed grief normal grief reactions are suppressed or postponed

... Complicated grief l Exaggerated grief self-destructive behaviors eg, suicide l Masked grief unaware that behaviors are a result of the loss l Exaggerated grief self-destructive behaviors eg, suicide l Masked grief unaware that behaviors are a result of the loss

Tasks of the grieving 1. Accept the reality of the loss 2. Experience the pain caused by the loss 3. Adjust to the new environment after the loss 4. Rebuild a new life 1. Accept the reality of the loss 2. Experience the pain caused by the loss 3. Adjust to the new environment after the loss 4. Rebuild a new life

Assessment of grief l Repeated assessments anticipated, actual losses emotional responses coping strategies role of religion l Interdisciplinary team assessment, monitoring l Repeated assessments anticipated, actual losses emotional responses coping strategies role of religion l Interdisciplinary team assessment, monitoring

Grief management l If reactions, coping strategies appropriate monitorsupportcounselingrituals l If inappropriate, potentially harmful rapid, skilled assessment, intervention l If reactions, coping strategies appropriate monitorsupportcounselingrituals l If inappropriate, potentially harmful rapid, skilled assessment, intervention

EPECEPECEPECEPEC EPECEPECEPECEPEC Loss, Grief, Bereavement Summary Summary