Introduction to Palliative Introduction to Palliative Care and HospiceCare and Hospice

VA Palo AltoVA Palo Alto

Inpatient HospiceInpatient Hospice

Palliative CarePalliative Care

Interdisciplinary care that aims to Interdisciplinary care that aims to relieve suffering and improve relieve suffering and improve quality of life for patients with quality of life for patients with advanced illness and their advanced illness and their families. families.

It is offered It is offered simultaneously with all simultaneously with all other appropriate medical other appropriate medical treatmenttreatment..

HospiceHospice HospiceHospice is a concept of care designed to is a concept of care designed to

provide comfort and support to patients and provide comfort and support to patients and families when cure-oriented treatments are families when cure-oriented treatments are no longer desirable. no longer desirable.

HospiceHospice offers bereavement and counseling offers bereavement and counseling services to families before and after a services to families before and after a patient's death. patient's death.

Hospice careHospice care neither prolongs life nor neither prolongs life nor hastens death. hastens death.

Hospice careHospice care is provided by an is provided by an interdisciplinary team. interdisciplinary team.

Brief Overview of Brief Overview of End-of-Life Care End-of-Life Care

How are we doing in end-of-life care How are we doing in end-of-life care (ELC) in this country?(ELC) in this country?

Self-Assessed Knowledge Self-Assessed Knowledge Rating StudyRating Study

Most physicians lack knowledge about the Most physicians lack knowledge about the physical changes of dyingphysical changes of dying

On a scale of 1 - 5, the mean self-assessed On a scale of 1 - 5, the mean self-assessed knowledge rating of interns on physical knowledge rating of interns on physical changes of dying was 1.70changes of dying was 1.70— The lowest score of 6 items rating clinical The lowest score of 6 items rating clinical

expertiseexpertise

Hallenbeck and Bergen, 1999Hallenbeck and Bergen, 1999

Learning ObjectivesLearning Objectives

Module 1: Death and Dying in the U.S.A.Module 1: Death and Dying in the U.S.A. Describe how and where people die in the Describe how and where people die in the

U.S.A.U.S.A. Identify patterns of dying and related issues of Identify patterns of dying and related issues of

prognosisprognosis Identify the characteristics of what a ‘good’ Identify the characteristics of what a ‘good’

death might be for different populations and death might be for different populations and for yourselffor yourself

Increase your understanding of events in the Increase your understanding of events in the last 48 hours of lifelast 48 hours of life

Top Five Causes of DeathTop Five Causes of Death

19001900Influenza, pneumoniaInfluenza, pneumonia11.8%11.8%TuberculosisTuberculosis 11.3%11.3%Gastritis, enteritisGastritis, enteritis 8.3%8.3%Heart DiseaseHeart Disease 8.0%8.0%StrokeStroke 6.2%6.2%

Brim et al., 1970Brim et al., 1970

20002000Heart DiseaseHeart Disease 25.7%25.7%CancerCancer 20.0%20.0%StrokeStroke 6.0%6.0%COPDCOPD 4.5% 4.5%AccidentsAccidents 3.4% 3.4%

Minino & Smith, 2001Minino & Smith, 2001

Where We DieWhere We Die

6%

57%

17%

20%

ResidenceNursing HomeHospitalOther

1992 Data, IOM 1997

Dying in the U.S.A.: Dying in the U.S.A.: Epidemiology & EconomicsEpidemiology & Economics

Annual deaths (2000): 2.40 millionAnnual deaths (2000): 2.40 million Percentage in Hospice: 17% Percentage in Hospice: 17%

Up from 11% in 1993Up from 11% in 1993 Expense of dying (1987):Expense of dying (1987):

0.9% of population0.9% of population Last six months cost: $44.9 billion (in Last six months cost: $44.9 billion (in

1992 dollars)1992 dollars) This is 7.5% of total personal health care This is 7.5% of total personal health care

expendituresexpenditures

Cohen et al., 1995Cohen et al., 1995

Dying is Largely Publicly Dying is Largely Publicly Funded in U.S.A.Funded in U.S.A.

70% of people dying are covered by 70% of people dying are covered by MedicareMedicare

13% of Medicare recipients also 13% of Medicare recipients also receive Medicaidreceive Medicaid

Gornick et al., 1996Gornick et al., 1996

Trajectory of Steady DeclineTrajectory of Steady Decline

Functional Status

100%

Time

0 6 months

Other Dying TrajectoriesOther Dying Trajectories

Implications of different trajectories Implications of different trajectories of dyingof dying

BrainstormBrainstorm

Our ability to predict who is dyingOur ability to predict who is dying Reimbursement systems Reimbursement systems Where people dieWhere people die Medical needs of dying patientsMedical needs of dying patients The impact of the dying process on The impact of the dying process on

patient and familypatient and family

Different Dying Trajectories Different Dying Trajectories Affect…Affect…

Fantasy Death ExerciseFantasy Death Exercise What are your criteria for a ‘good’ What are your criteria for a ‘good’

death?death? The only hitch, as in life, is that you The only hitch, as in life, is that you

have to die.have to die. Imagine you are there right now.Imagine you are there right now. Notice where you are, what your are Notice where you are, what your are

doing, who is with you, what it is like, doing, who is with you, what it is like, perhaps sounds, smells, other sensory perhaps sounds, smells, other sensory specifics…specifics…

Themes for a ‘Good’ DeathThemes for a ‘Good’ Death

HomeHome ComfortComfort Sense of completion (tasks Sense of completion (tasks

accomplished)accomplished) Saying goodbyeSaying goodbye Life-reviewLife-review LoveLove

Sudden death in sleepSudden death in sleep

Dying at homeDying at home

Dying engaged in meaningful activityDying engaged in meaningful activity

Common Ideal Death Common Ideal Death ScenariosScenarios

DiscussionDiscussion

What do these themes and scenarios What do these themes and scenarios imply for our work as physicians?imply for our work as physicians?

Few ‘ideal’ deaths contain medical Few ‘ideal’ deaths contain medical settings or staffsettings or staff

What does this mean to us, and how What does this mean to us, and how do we deal with it?do we deal with it?

How do you know a person is dying?How do you know a person is dying?

What are some of the signs of What are some of the signs of imminent death?imminent death?

The Last 48 HoursThe Last 48 Hours

Signs that Suggest Active Signs that Suggest Active DyingDying

No intake of water or foodNo intake of water or food

Dramatic skin color changesDramatic skin color changes

Respiratory mandibular movement (RMM)Respiratory mandibular movement (RMM)

Sunken cheeks, relaxation of facial musclesSunken cheeks, relaxation of facial muscles

Rattles in chestRattles in chest

Cheyne-Stokes respirationsCheyne-Stokes respirations

Lack of pulseLack of pulse

SymptomSymptom Percent Percent Noisy, moist breathingNoisy, moist breathing 5656 Urinary incontinenceUrinary incontinence 3232 Urinary retentionUrinary retention 2121 PainPain 4242 Restlessness, agitationRestlessness, agitation 4242 DyspneaDyspnea 2222 Nausea, vomitingNausea, vomiting 1414 SweatingSweating 1414 Jerking, twitchingJerking, twitching 1212 ConfusionConfusion 0808

Lichter and Hunt, 1990Lichter and Hunt, 1990

Symptoms & Signs in the Symptoms & Signs in the Last 48 HoursLast 48 Hours

Events of the Last 48 HoursEvents of the Last 48 Hours

Orderly loss of the senses and desiresOrderly loss of the senses and desires

HungerHunger Thirst (but persistent dry mouth)Thirst (but persistent dry mouth) SpeechSpeech VisionVision Hearing and touchHearing and touch

Loss of HungerLoss of Hunger

Families tend to want to nurtureFamilies tend to want to nurture A basic way to nurture is to feedA basic way to nurture is to feed Families may be distressed if patient Families may be distressed if patient

doesn’t eatdoesn’t eat - - Distress arises from:Distress arises from:

Inability to nurture loved one who is dyingInability to nurture loved one who is dying Fear that patient is ‘starving’ (suffering)Fear that patient is ‘starving’ (suffering)

Dry mouth is misinterpreted as thirstDry mouth is misinterpreted as thirst

Loss of ThirstLoss of Thirst

Loss of two-way verbal exchange is a Loss of two-way verbal exchange is a challengechallenge

At this point the family may realize At this point the family may realize that the patient is really dyingthat the patient is really dying

Difficulty with communication brings Difficulty with communication brings up many questionsup many questions

Loss of SpeechLoss of Speech

Patient may appear to stare off in Patient may appear to stare off in space, as if looking through peoplespace, as if looking through people

Loss of VisionLoss of Vision

These senses appear to be the last to These senses appear to be the last to gogo

Knowing this allows families to be Knowing this allows families to be involved far into the dying processinvolved far into the dying process

Loss of Hearing & TouchLoss of Hearing & Touch

Terminal Syndrome Terminal Syndrome Characterized by Retained Characterized by Retained

SecretionsSecretions Lack of coughLack of cough Multi-system shut-downMulti-system shut-down Not always associated with dyspneaNot always associated with dyspnea Vigorous hydration may flood lungsVigorous hydration may flood lungs Deep suctioning is generally ineffectiveDeep suctioning is generally ineffective Role of IV and antibiotics is Role of IV and antibiotics is

controversialcontroversial

Describe how and where people die in Describe how and where people die in the U.S.A.the U.S.A.

Identify patterns of dying and related Identify patterns of dying and related issues of prognosisissues of prognosis

Identify the characteristics of what a Identify the characteristics of what a ‘good death’ might be for different ‘good death’ might be for different populations and for yourselfpopulations and for yourself

Increase your understanding of events in Increase your understanding of events in the last 48 hours of lifethe last 48 hours of life

Incorporate this content into your clinical Incorporate this content into your clinical teachingteaching

Learning ObjectivesLearning Objectives

Describe how and where people die Describe how and where people die in the U.S.A.in the U.S.A.

Identify patterns of dying and related Identify patterns of dying and related issues of prognosisissues of prognosis

Identify the characteristics of what a Identify the characteristics of what a ‘good death’ might be for different ‘good death’ might be for different populations and for yourselfpopulations and for yourself

Increase your understanding of Increase your understanding of events in the last 48 hours of lifeevents in the last 48 hours of life

Learning ObjectivesLearning Objectives