Palliative Care at the Palliative Care at the Very End of LifeVery End of Life
Brenda Jordan, MS, ARNP, BCBrenda Jordan, MS, ARNP, BC--PCMPCMNurse PractitionerNurse Practitioner
DartmouthDartmouth--HitchcockHitchcock••KendalKendalHanover, NHHanover, NH
Why Plan End of Life CareWhy Plan End of Life Care
““How people die How people die remains in the remains in the memories of memories of those who live those who live onon””. .
Cicely SaundersCicely Saunders
Like every birth, every death is uniqueLike every birth, every death is unique
Preparing for death is like Preparing for death is like preparing for birthpreparing for birth
Unexpected eventsUnexpected eventsTiming uncertainTiming uncertainWhat will be neededWhat will be neededWhat can we do to make it What can we do to make it a a ““goodgood”” experience for experience for patient, family and patient, family and ourselvesourselves
ObjectivesObjectives......
Describe the possibilities during the last Describe the possibilities during the last hours of life for any dying patient. hours of life for any dying patient.
Describe assessments (physical, Describe assessments (physical, psychological, social, cultural, and spiritual) psychological, social, cultural, and spiritual) and interventions to improve care for and interventions to improve care for imminently dying patients and their familiesimminently dying patients and their families. .
......ObjectivesObjectives
Describe patient and family care at time Describe patient and family care at time of death and immediately following of death and immediately following death. death.
Who Needs to be PreparedWho Needs to be Prepared
FamilyFamilyFriendsFriendsHealth Care Health Care PersonnelPersonnel
Where do people dieWhere do people die
HospitalHospital--50%50%Nursing HomeNursing Home--25%25%
Hospice in nursing homes Hospice in nursing homes improves care of all improves care of all residentsresidents
HomeHome-->25%?>25%?With hospice supportWith hospice support--50% 50% Cancer patientsCancer patientsWithout hospice supportWithout hospice support
Site of DeathSite of Death
No No ““placeplace”” is best or worst to dieis best or worst to die
Need to establish match between pt/family Need to establish match between pt/family preferences and needs in order to have a preferences and needs in order to have a ““good deathgood death””
Common Causes Common Causes of Death in Eldersof Death in Elders
DementiasDementiasPneumoniaPneumoniaUrosepsisUrosepsisEnd stage dementiaEnd stage dementia
End Stage Heart DiseaseEnd Stage Heart DiseaseEnd Stage Respiratory DiseaseEnd Stage Respiratory DiseaseCancersCancersEnd Stage Renal DiseaseEnd Stage Renal DiseaseFailure to Thrive Failure to Thrive
DehydrationDehydrationMalnutritionMalnutrition
Preparation for DeathPreparation for Death
What Type of Death What Type of Death ExpectedExpected-- Most deathsMost deaths
Requests for assisted deathRequests for assisted deathProlonged Prolonged ““dyingdying”” phasephase
““UnexpectedUnexpected”” –– minority of deathsminority of deathsHappen quicklyHappen quicklyUsually unexpected complications Usually unexpected complications Completely unrelated eventCompletely unrelated eventSuicide Suicide
What Is What Is ““Good DeathGood Death””
DefinitionsDefinitions––Institute Of Medicine Institute Of Medicine
(1997)(1997)––SteinhauserSteinhauser et al. et al.
(2000)(2000)
Institute of Medicine 1997 Institute of Medicine 1997 ““Good DeathGood Death””
“…“… people should be able to expect and people should be able to expect and achieve a decent or good deathachieve a decent or good death——one that one that is free from avoidable distress and is free from avoidable distress and suffering for patients, families, and suffering for patients, families, and caregivers: in general accord with patientscaregivers: in general accord with patients’’and familiesand families’’ wishes; and reasonably wishes; and reasonably consistent with clinical, cultural, and consistent with clinical, cultural, and ethical ethical standards.standards.””pp. 4.. 4.
SteinhauserSteinhauser et al. 2000et al. 2000
“…“…pain and pain and symptom control, symptom control, clear decisionclear decision--making, preparation, making, preparation, completion, giving to completion, giving to others, and others, and affirmation of the affirmation of the whole personwhole person””
SStudytudy toto UUnderstandnderstand PPrognosesrognoses andandPPreferencesreferences forfor OOutcomesutcomes andand RRisksisks of of
TTreatment reatment (SUPPORT)(SUPPORT)
Based on interviews with 3357 survivorsBased on interviews with 3357 survivors5 academic medical centers5 academic medical centers40% of patients died in severe pain40% of patients died in severe pain55% were conscious55% were conscious63% had difficulty tolerating symptoms63% had difficulty tolerating symptoms
Symptom Frequency in Last 48 Hours
0
10
20
30
40
50
60
70
Pain Anxiety Confusion Dyspnea Nausea
GWDartmouthSUPPORT
Improving Care in the Last 48hoursImproving Care in the Last 48hours
Carrying Out Advanced Carrying Out Advanced DirectivesDirectives
Living WillLiving WillDPOADPOA--HCHC
Clinical Assessments and Clinical Assessments and Interventions NeededInterventions Needed
Physiologic ChangesPhysiologic ChangesEmotionalEmotionalSocialSocialSpiritualSpiritual
Common symptoms that occur at Common symptoms that occur at the very end of lifethe very end of life
Pain / DiscomfortPain / DiscomfortAnxiety/FearAnxiety/FearDyspneaDyspnea / Respiratory distress/ Respiratory distressRestlessness / Muscle spasmsRestlessness / Muscle spasmsExcessive secretions /Pulmonary edemaExcessive secretions /Pulmonary edemaMoaning / Moaning / AgonalAgonal respirationsrespirationsConfusion/DeliriumConfusion/DeliriumNausea / VomitingNausea / Vomiting
Signs of Approaching Death: Signs of Approaching Death: The Last 48 HoursThe Last 48 Hours
(Blues & Zerwekh, 1984)
1. Reduced level of consciousness
2. Taking no fluids or only sips
3. No urine output or small amount of very dark urine
(anuria or oliguria)
4. Progressing coldness and purple discoloration in
legs and arms
5. Laborious breathing;periods of
apnea; Cheyne-Stokes breathing
6. Bubbling sounds in throat and chest
(death rattle)
From Wilkie, 2002
Barriers to Recognize the Dying Barriers to Recognize the Dying ProcessProcess
DenialDenial--hope it gets betterhope it gets betterNo definitive diagnosisNo definitive diagnosisFailure to recognize key Failure to recognize key symptomssymptomsLack of knowledge of Lack of knowledge of death trajectorydeath trajectoryPursuing futile Pursuing futile interventionsinterventions
Poor communication Poor communication skillsskillsEthical/Legal ConcernsEthical/Legal Concerns
about withholding or with about withholding or with drawing treatmentdrawing treatmentof hastening deathof hastening deathabout CPRabout CPR
Legal issuesLegal issuesCultural/spiritual practicesCultural/spiritual practices
Overcoming BarriersOvercoming Barriers
Recognize key sign and symptomsRecognize key sign and symptomsSkilled communication of prognosisSkilled communication of prognosisTeam approach within your facilityTeam approach within your facilityKnow ethical & legal principles supporting careKnow ethical & legal principles supporting careAppreciate cultural and religious traditionsAppreciate cultural and religious traditions
Physiologic Changes During the Physiologic Changes During the Dying ProcessDying Process
Increasing weakness, fatigueIncreasing weakness, fatigueDecreasing appetite/fluid intakeDecreasing appetite/fluid intakeDecreasing blood perfusionDecreasing blood perfusionNeurological dysfunctionNeurological dysfunctionPainPainLoss of ability to close eyesLoss of ability to close eyes
Weakness/FatigueWeakness/Fatigue
Decreased ability to moveDecreased ability to moveJoint position fatigueJoint position fatigueIncreased risk of pressure ulcersIncreased risk of pressure ulcersIncreased need for careIncreased need for care
ADLsADLsTurning, movement, massageTurning, movement, massage
Decreasing Appetite/Food Decreasing Appetite/Food Intake, WastingIntake, Wasting
FearsFearsRemindersReminders
Food may be nauseatingFood may be nauseatingAnorexia may be protectiveAnorexia may be protectiveRisk of aspirationRisk of aspirationClenched teeth express desires, controlClenched teeth express desires, controlPulling out NG or GPulling out NG or G--tubetube
Help family find alternative ways to careHelp family find alternative ways to care
Weissman, D.E. , Biernat, K. & Rehm, J. (2003)Weissman, D.E. , Biernat, K. & Rehm, J. (2003)
Benefits and Burdens of Benefits and Burdens of Artificial Nutrition/HydrationArtificial Nutrition/Hydration
Benefits of Artificial Nutrition/HydrationBenefits of Artificial Nutrition/Hydration
Prolongs life if time is neededProlongs life if time is neededMay improve or forestall deliriumMay improve or forestall deliriumMaintains appearance of life giving sustenanceMaintains appearance of life giving sustenanceMaintains hope for future clinical improvementMaintains hope for future clinical improvementRemoval/avoidance of guilt by family membersRemoval/avoidance of guilt by family members
Weissman, D. E., Biernat, K., & Rehm, J. (2003)Weissman, D. E., Biernat, K., & Rehm, J. (2003)
UnprovenUnproven Benefits of Artificial Benefits of Artificial HydrationHydration
Improves quality of lifeImproves quality of lifeImproves survival across a population Improves survival across a population of dying patientsof dying patientsImproves symptom of thirstImproves symptom of thirst
Benefits and BurdensBenefits and Burdens
Weissman, D.E., Biernat, K., & Rehm, J. (2003)Weissman, D.E., Biernat, K., & Rehm, J. (2003)
UnprovenUnproven Benefits of Artificial Benefits of Artificial FeedingFeeding
Reduction in aspiration pneumoniaReduction in aspiration pneumoniaReduction in patient sufferingReduction in patient sufferingReduction in infections or skin Reduction in infections or skin breakdownbreakdownImproves survival duration (in a Improves survival duration (in a population of similar patients)population of similar patients)
Benefits and BurdensBenefits and Burdens
Weissman, D.E., Biernat, K., & Rehm, J. (2003)Weissman, D.E., Biernat, K., & Rehm, J. (2003)
Burdens of Artificial HydrationBurdens of Artificial HydrationMaintaining parenteral accessMaintaining parenteral accessIncreased secretions, ascites, effusions, Increased secretions, ascites, effusions, edemaedemaFuss factor: site care, IV bag changesFuss factor: site care, IV bag changes
Benefits and BurdensBenefits and Burdens
Weissman, D.E., Biernat, K., & Rehm, J. (2003)Weissman, D.E., Biernat, K., & Rehm, J. (2003)
Burdens of Artificial FeedingBurdens of Artificial Feeding **Risk of aspiration pneumonia is the same or Risk of aspiration pneumonia is the same or greater than without nongreater than without non--oral feedingoral feedingIncreased need to use restraintsIncreased need to use restraintsWound infections, abdominal pain and tubeWound infections, abdominal pain and tube--related discomfortrelated discomfortOther tube problemsOther tube problemsCost; IndignityCost; Indignity
Benefits and BurdensBenefits and Burdens
* Much of this data comes from use of tube feeding in advanced dementia (see next slide)
Allowing patient to eat/drink ad lib, even if Allowing patient to eat/drink ad lib, even if aspiration risk is presentaspiration risk is present
No oral or nonNo oral or non--oral oral nutrtionnutrtion/fluids/fluidsexpectation that death will result in 14 daysexpectation that death will result in 14 daysAggressive comfort measures will always Aggressive comfort measures will always providedprovided
Alternatives to Artificial Alternatives to Artificial Feeding/HydrationFeeding/Hydration
Summary of Benefits/BurdensSummary of Benefits/BurdensFew medical benefits Few medical benefits Substantial morbidity for patientSubstantial morbidity for patientBut maybe positive psychological But maybe positive psychological benefit for family benefit for family
Decreasing Fluid IntakeDecreasing Fluid Intake……..
Fears: dehydration, thirstFears: dehydration, thirstRemind family and caregiversRemind family and caregivers
Dehydration does not cause distressDehydration does not cause distressDehydration may be protectiveDehydration may be protective
……Decreasing Fluid IntakeDecreasing Fluid Intake
Frequent mouth careFrequent mouth careSwabs, artificial salivaSwabs, artificial saliva
Eye careEye careSaline dropsSaline drops
Skin careSkin careFrequent massage with lotionsFrequent massage with lotions
Decreasing Blood PerfusionDecreasing Blood Perfusion
Tachycardia, hypotensionTachycardia, hypotensionPeripheral cooling, cyanosisPeripheral cooling, cyanosisMottling of skinMottling of skinDiminished urine outputDiminished urine outputParenteralParenteral fluids will not reversefluids will not reverse
Neurologic dysfunctionNeurologic dysfunction
Decreasing level of consciousnessDecreasing level of consciousnessCommunication with the unconscious Communication with the unconscious patientpatientChange in respirationChange in respirationLoss of ability to swallow, sphincter controlLoss of ability to swallow, sphincter controlTerminal deliriumTerminal delirium
Communication with the Communication with the Unconscious PatientUnconscious Patient
Distressing to the familyDistressing to the familyAwareness>ability to respondAwareness>ability to respondAssume patient hears everythingAssume patient hears everything
……Communication with the Communication with the Unconscious PatientUnconscious Patient
Create familiar environmentCreate familiar environmentInclude in conversationInclude in conversationAssure presence and safetyAssure presence and safetyGive permission to dieGive permission to dietouchtouch
Preparation for DeathPreparation for Death
Consider how well your system Consider how well your system deals with treatments of deals with treatments of ““last last resortresort””
Voluntary stopping of eating and Voluntary stopping of eating and drinkingdrinking
Withdrawal of life supportWithdrawal of life supportRequests for assisted suicideRequests for assisted suicideHigh dose pain managementHigh dose pain managementPalliative sedationPalliative sedation
•Use sedation for control of refractory symptoms in patients who are dying•There is no evidence that sedation hastens death (Morita et al.2001)•Effective sedation can be achieved through the skilled, judicious use of a variety of medications including
–Opioids – Barbiturates – Other–Benzodiazepines – Thiopental
NCCN Practice Guidelinesin Oncology - v.1.2001
Palliative Care Interventions: Sedation
Changes in RespirationChanges in Respiration……
Altered breathing patternsAltered breathing patternsDiminished tidal volumeDiminished tidal volumeApneaApneaCheyneCheyne--Stokes respirationsStokes respirationsAccessory muscle useAccessory muscle useLast reflex breathsLast reflex breaths
……Changes in RespirationChanges in Respiration
FearsFearsSuffocationSuffocation
ManagementManagementOPIOIDS!!! (Cochrane reviewOPIOIDS!!! (Cochrane review--evidence strong) evidence strong) Evaluate use of fans or fresh air Evaluate use of fans or fresh air PositionPositionProvide OProvide O22 via nasal via nasal cannulacannulaTreat anxiety from breathlessnessTreat anxiety from breathlessnessTreat Treat ““death rattledeath rattle”” as appropriateas appropriate--Positioning, Positioning, anticholinergicsanticholinergics, do not deep suction, do not deep suction--suction only suction only oral secretions if helpfuloral secretions if helpful
Loss of Sphincter ControlLoss of Sphincter Control
Incontinence of UrineIncontinence of UrineFamily needs knowledge and supportFamily needs knowledge and supportCleaning, skin careCleaning, skin careUrinary cathetersUrinary cathetersAbsorbent pads, surfacesAbsorbent pads, surfaces
PainPain
Fear of increased painFear of increased painAssessment of the unconscious patientAssessment of the unconscious patient
Persistent Persistent vsvs fleeting expressionfleeting expressionGrimace or physiologic signsGrimace or physiologic signsIncident Incident vsvs rest painrest painDistinction from terminal deliriumDistinction from terminal delirium
MedicationsMedications
Limit essential medicationsLimit essential medicationsChoose less invasive route of Choose less invasive route of administrationadministration
BuccalBuccal mucosal oral first, then consider rectalmucosal oral first, then consider rectalSubcutaneous, intravenousSubcutaneous, intravenousIntramuscular almost neverIntramuscular almost never
As Expected Death ApproachesAs Expected Death Approaches
Discuss Discuss status of patient and realistic care goalsstatus of patient and realistic care goalsRole of all team membersRole of all team members
What the patient experiences, what What the patient experiences, what onlookers seeonlookers see
As Expected Death ApproachesAs Expected Death Approaches
Reinforce signs events of dying processReinforce signs events of dying processPerson, cultural, religious, rituals, funeral Person, cultural, religious, rituals, funeral planningplanningFamily support throughout the processFamily support throughout the process
• Discontinue diagnostic tests • Discontinue vital sign assessment• Avoid unnecessary needle sticks
• Allow patient and family uninterrupted time together
• Ensure that family understands what to expect
• Ensure that caretakers understand and will honor advance directives
NCCN Practice Guidelinesin Oncology - v.1.2001
Final Days to Hours
Emotional SymptomsEmotional Symptoms
anxiety/fearanxiety/feardepressiondepression
Social ConcernsSocial Concerns
Patient Patient PreferencePreference
family vigilfamily vigilfriendsfriendsalonealone
Comfort Measures Only Comfort Measures Only (CMO)(CMO)
DNR DNR Review all diagnostics and Review all diagnostics and
treatments for contribution to treatments for contribution to comfortcomfort
Addresses Hunger & ThirstAddresses Hunger & ThirstStandardized Nursing CareStandardized Nursing CareSymptom ManagementSymptom Management
Medications Ordered Medications Ordered –– PRN or PRN or Scheduled/ContinuousScheduled/Continuous
Spiritual CareSpiritual Care
Unfinished businessUnfinished businessSacraments and other Sacraments and other
ritualsritualsPeacefulPeacefulAwareness of DeathAwareness of Death
Uncommon Uncontrollable Uncommon Uncontrollable Events Prior to DeathEvents Prior to Death
Fatal Hemorrhage
Uncontrollable pain (when the pain was controlled prior to death)
Human Senses: Pain
Seizures
Fatal Seizure
From Wilkie, 2002
Signs of DeathSigns of Death
• Cessation of heart beat and respiration• Pupils fixed and dilated• No response to stimuli• Eyelids open without blinking• Decreasing body temperature• Jaw relaxed and slightly open• Body color is a waxen pallor
(From Wilkie 2002)
After Death CareAfter Death Care: Various : Various Cultural & Religious GroupsCultural & Religious Groups
Cultural and religious beliefs and practices Cultural and religious beliefs and practices are important to nursing care at the endare important to nursing care at the end--ofof--life and immediately after deathlife and immediately after death
(From Wilkie 2002)
When you are called to pronounce a patient:When you are called to pronounce a patient:
••Recognize the Recognize the extremeextreme emotional significance emotional significance of the actual pronouncement of death to family of the actual pronouncement of death to family members in room.members in room.
••Establish eye contact with family members(s) Establish eye contact with family members(s) present.present.
••Introduce self to family.Introduce self to family.
PRONOUNCEMENT OF DEATH
•• Examine patient for absence of breath sounds and heart Examine patient for absence of breath sounds and heart sounds.sounds.
Note time of death.Note time of death.After confirmation of death, acknowledge patients death to After confirmation of death, acknowledge patients death to
family if they are present and expressfamily if they are present and expresscondolences in a way that is comfortable for you.condolences in a way that is comfortable for you.
Determine legal nextDetermine legal next--ofof--kin if family is not presentkin if family is not presentAsk legal nextAsk legal next--ofof--kin about autopsy, organ/body donation, kin about autopsy, organ/body donation, funeral home name (family can call it in later).funeral home name (family can call it in later).
PRONOUNCEMENT OF DEATH
Pronouncing Death and Pronouncing Death and BeyondBeyond
Know and carry out Know and carry out cultural/religious ritualscultural/religious ritualsKnow regulations (Know regulations (egegwho can complete death who can complete death certificate, etc.)certificate, etc.)Know funeral homeKnow funeral homeProvide resources for Provide resources for family bereavement family bereavement supportsupport
SummarySummary
Each death is unique experience and we are Each death is unique experience and we are privileged to attend to dying patientsprivileged to attend to dying patientsThe memory of the dying experience (good and The memory of the dying experience (good and bad) remains with survivors.bad) remains with survivors.The quality of the hours and days prior to death The quality of the hours and days prior to death can be influenced by early palliative care planning can be influenced by early palliative care planning with patient & family, and staff and system with patient & family, and staff and system preparations. preparations. Pathways and standards may influence and Pathways and standards may influence and improve quality of dying.improve quality of dying.
