Palliative Care Palliative Care 101101

Gina M. Basello, D.O.Gina M. Basello, D.O.Associate Program DirectorAssociate Program Director

Jamaica Hospital Medical CenterJamaica Hospital Medical CenterFamily Medicine Residency Family Medicine Residency

ProgramProgram

OverviewOverview The Aging PopulationThe Aging Population Dying in AmericaDying in America What is Palliative Care?What is Palliative Care? Why Palliative Care as a SpecialtyWhy Palliative Care as a Specialty Scope of Services/BenefitsScope of Services/Benefits DomainsDomains PrognosticationPrognostication

The Aging PopulationThe Aging Population

The Aging PopulationThe Aging Population By 2030, the number of people in the United By 2030, the number of people in the United

States over the age of 85 is expected to double States over the age of 85 is expected to double to 8.5 millionto 8.5 million

As the Medicare population increases and the As the Medicare population increases and the distribution shifts to older age groups, there distribution shifts to older age groups, there will be increases to aggregate Medicare will be increases to aggregate Medicare expenditures.expenditures.

Historically, approximately one-quarter of Historically, approximately one-quarter of Medicare expenditures are for last-year-of-life Medicare expenditures are for last-year-of-life care (Hogan et al., 2001; and Lubitz and Riley, care (Hogan et al., 2001; and Lubitz and Riley, 1993). 1993).

Where Do People Die?Where Do People Die? Hospital – 50% Hospital – 50% Nursing Home – 30%Nursing Home – 30% Home – 20%Home – 20% Where do Where do

People WANT People WANT to die?to die?Home 1stHome 1stHospital 2ndHospital 2ndNursing Home NeverNursing Home Never

WHY?WHY?

Forces exist in our health care delivery Forces exist in our health care delivery system together with the values related system together with the values related to health and illness, that propel the to health and illness, that propel the physician, patient, family towards physician, patient, family towards aggressive, life prolonging care far aggressive, life prolonging care far longer than is medically appropriate; longer than is medically appropriate; such care typically is provided in the such care typically is provided in the hospital environment, up until shortly hospital environment, up until shortly before death.before death.

How do Patients View How do Patients View What is a “Good Death”What is a “Good Death” Dying not be prolonged Dying not be prolonged Pain and symptoms controlledPain and symptoms controlled Not being a burden to othersNot being a burden to others Control over decision-makingControl over decision-making Strengthening relationshipsStrengthening relationships

Major Causes of Death Major Causes of Death in Americain America

Chronic DiseasesChronic Diseases Heart diseaseHeart disease CancerCancer Respiratory Respiratory

DiseaseDisease StrokeStroke

Acute ConditionsAcute Conditions InfectionsInfections TraumaTrauma Homicide/suicideHomicide/suicide

Status of Palliative Care Status of Palliative Care in the US: Sin the US: SUPPORT StudyUPPORT Study

SUPPORT Study : Study to SUPPORT Study : Study to Understand Prognosis and Understand Prognosis and Preferences for Outcomes and Preferences for Outcomes and Risks of Treatments Risks of Treatments

Approx. 10,000 patients, 5,000 Approx. 10,000 patients, 5,000 deaths related to 9 serious deaths related to 9 serious illnesses during admission to 5 US illnesses during admission to 5 US teaching hospitalsteaching hospitals

SUPPORT: SUPPORT: Phase I Phase I FindingsFindings

46% of DNR orders were written 46% of DNR orders were written within 2 days of death within 2 days of death

47% of physicians knew when 47% of physicians knew when their patients wanted to avoid CPR their patients wanted to avoid CPR

38% of patients spent 10+ days in ICU38% of patients spent 10+ days in ICU 50% of dying patients suffered severe 50% of dying patients suffered severe

painpain High hospital resource useHigh hospital resource use

Status of Palliative Care Status of Palliative Care in the US: Sin the US: SUPPORT StudyUPPORT Study

SUPPORT Study : Study to SUPPORT Study : Study to Understand Prognosis and Understand Prognosis and Preferences for Outcomes and Preferences for Outcomes and Risks of Treatments Risks of Treatments

Approx. 10,000 patients, 5,000 Approx. 10,000 patients, 5,000 deaths related to 9 serious deaths related to 9 serious illnesses during admission to 5 US illnesses during admission to 5 US teaching hospitalsteaching hospitals

Palliative Care: Palliative Care: DefinitionDefinition

““The active total care of patients whose The active total care of patients whose disease is not responsive to curative disease is not responsive to curative treatment. Control of pain, of other treatment. Control of pain, of other symptoms, and of psychological, social and symptoms, and of psychological, social and spiritual problems, is paramount. The goal spiritual problems, is paramount. The goal of palliative care is achievement of the best of palliative care is achievement of the best quality of life for patients and their quality of life for patients and their families. Many aspects of palliative care are families. Many aspects of palliative care are also applicable earlier in the course of the also applicable earlier in the course of the illness in conjunction with anti-cancer illness in conjunction with anti-cancer treatment.”treatment.” World Health Organization, 1990World Health Organization, 1990

Medical Terms Medical Terms Comfort CareComfort Care End of Life CareEnd of Life Care DNRDNR TerminalTerminal Palliative CarePalliative Care Hospice CareHospice Care

The Palliative Care TeamThe Palliative Care Team

PATIENTfamily

Nurses

SocialWorker Chaplain

Dietician

Other health care professionals

Administration

Volunteers Occupational Therapist

Other therapies

Physiotherapist

Pharmacist

Physician

Community resources

Ajemian, Oxford Textbook of Palliative Medicine, 1993

Benefits of Palliative Benefits of Palliative CareCare

PatientsPatients Families/CaregiversFamilies/Caregivers ProvidersProviders HospitalsHospitals CommunitiesCommunities

Improved Clinical Improved Clinical OutcomesOutcomes

Palliative care relieves pain and Palliative care relieves pain and distressing symptoms.distressing symptoms.

Palliative care helps with difficult Palliative care helps with difficult decision-making.decision-making.

Palliative care helps patients Palliative care helps patients complete life-prolonging or complete life-prolonging or curative treatments.curative treatments.

Palliative care boosts patient and Palliative care boosts patient and family satisfaction.family satisfaction.

Comparing Comparing Hospice vs. Palliative Hospice vs. Palliative

CareCareHospiceHospice Prognosis of 6 Prognosis of 6

months or lessmonths or less Focus on comfort Focus on comfort

carecare Medicare hospice Medicare hospice

benefitbenefit Volunteers integral Volunteers integral

and required aspect and required aspect of the programof the program

Palliative CarePalliative Care Any time during Any time during

illnessillness May be combined May be combined

with curative carewith curative care Independent of Independent of

payerpayer Health care Health care

professionalsprofessionals

What is End of Life and What is End of Life and Palliative Care?Palliative Care?

Dying as a normal life cycle eventDying as a normal life cycle event Personal AwarenessPersonal Awareness Making the transition from living to Making the transition from living to

dyingdying Attitude issuesAttitude issuesKnowledge/Training IssuesKnowledge/Training IssuesNecessary SkillsNecessary Skills

How to move forwardHow to move forward Understanding TermsUnderstanding Terms

Why Teach? Why Learn?Why Teach? Why Learn? Why Practice? Why Practice?

Palliative Care fast becoming industry Palliative Care fast becoming industry standardstandard

Subspecialty Board on the horizonSubspecialty Board on the horizon OUR patients life cycleOUR patients life cycle Family Medicine model and philosophy Family Medicine model and philosophy

of careof care Compassionate complete care for Compassionate complete care for

advanced chronic illness AND end of lifeadvanced chronic illness AND end of life

Family Medicine and Family Medicine and Palliative CarePalliative Care

Family Physicians must collaborate to Family Physicians must collaborate to ensure that Palliative Care remains ensure that Palliative Care remains within our scopewithin our scope

We need to come together for the We need to come together for the purposes of: purposes of: EducationEducationTrainingTrainingResearchResearchScholarly ActivityScholarly ActivityEstablishing Clinical StandardsEstablishing Clinical Standards

LCME StandardsLCME Standards Clinical instruction should cover all Clinical instruction should cover all

organ systems, and must include the organ systems, and must include the important aspects of preventive, important aspects of preventive, acute, chronic, continuing, acute, chronic, continuing, rehabilitative, and rehabilitative, and end-of-life care. end-of-life care.

ACGMEACGME Residents should understand basic Residents should understand basic

legal terms and concepts related to legal terms and concepts related to the practice of medicine, especially the practice of medicine, especially their legal obligations regarding their legal obligations regarding patient information and the patient information and the provision of end-of-life care. provision of end-of-life care.

JCAHOJCAHO Ethics, Rights and ResponsibilitiesEthics, Rights and Responsibilities

Patient/Family involvement in decision Patient/Family involvement in decision makingmakingAddress wishes of patient relating to end of Address wishes of patient relating to end of life carelife care

Provision of CareProvision of CareInterdisciplinary, collaborative mannerInterdisciplinary, collaborative manner

Pain Assessment and Pain Assessment and Management!!!Management!!!

Providers’ Need Providers’ Need AssessmentAssessment

PGY1s: PGY1s: Know that they don’t knowKnow that they don’t know

PGY2s: PGY2s: Know more than they thinkKnow more than they think PGY3s and Attendings: PGY3s and Attendings: Don’t know Don’t know

as much as they think they doas much as they think they do

Essential Components of Essential Components of Palliative CarePalliative Care

CommunicationCommunication Decision MakingDecision Making Management of ComplicationsManagement of Complications Symptom ControlSymptom Control Psychosocial CarePsychosocial Care Care of the DyingCare of the Dying

From Institute of Medicine 2001

Domains of End-of-Life Domains of End-of-Life CareCare

PainPain Non-Pain Non-Pain Symptoms/SyndromSymptoms/Syndromeses

Communication/Communication/EthicsEthics

Terminal Terminal Care/Dying/Care/Dying/Patient- Family Patient- Family ExperiencesExperiences

Special Special InterventionsInterventions

Disease CategoriesDisease Categories

PAINPAIN Pain AssessmentPain Assessment Pain TreatmentPain Treatment Addiction/Tolerance/Physical Addiction/Tolerance/Physical

DependenceDependence Chronic Non-Malignant PainChronic Non-Malignant Pain Controlled Substance regulationsControlled Substance regulations

Non-Pain Non-Pain Symptoms/SyndromeSymptoms/Syndrome

Nausea/VomitingNausea/Vomiting DyspneaDyspnea Constipation/DiarrheaConstipation/Diarrhea DeliriumDelirium Depression/SuicideDepression/Suicide Sleep DisturbancesSleep Disturbances Anorexia/CachexiaAnorexia/Cachexia

Communications/EthicsCommunications/Ethics Giving Bad NewsGiving Bad News Running A Family ConferenceRunning A Family Conference DNR/Advanced DirectivesDNR/Advanced Directives Decision Making CapacityDecision Making Capacity Personal AwarenessPersonal Awareness Treatment “Withdrawal”Treatment “Withdrawal” Cross-Cultural IssuesCross-Cultural Issues Assisted Suicide/EuthanasiaAssisted Suicide/Euthanasia

Terminal Care/DyingTerminal Care/Dying Grief/BereavementGrief/Bereavement Quality of LifeQuality of Life SufferingSuffering Hope/SpiritualityHope/Spirituality Medicare/Hospice BenefitsMedicare/Hospice Benefits Home CareHome Care Caring for FamiliesCaring for Families

Special InterventionsSpecial Interventions Hydration/NutritionHydration/Nutrition Blood ProductsBlood Products AntibioticsAntibiotics RehabilitationRehabilitation Radiation/Chemotherapy/SurgeryRadiation/Chemotherapy/Surgery Interventional ProceduresInterventional Procedures DialysisDialysis

Disease CategoriesDisease Categories Neoplastic DiseasesNeoplastic Diseases Cardiopulmonary DiseasesCardiopulmonary Diseases Endocrine DiseasesEndocrine Diseases Hepato-Renal DiseasesHepato-Renal Diseases Infectious Disease/HIV/AIDSInfectious Disease/HIV/AIDS NeurologicalNeurological

Living with Life-Limiting Living with Life-Limiting DiseaseDisease

Practical Issues

Spiritual Issues

Psychological Issues

Physical Symptoms

Emotional Issues

Social Issues

Medical Information

CurativeCurative vs. Palliative vs. Palliative Model of CareModel of Care

Disease Progression

DEATH

Curative Palliative

BEREAVEMENT

Restoring the Restoring the BalanceBalance

Life Prolonging Care

Palliative Care

Continuum of Care Continuum of Care ModelModel

Disease Progression

DEATH

BEREAVEMENT

Curative Intent

PalliativeCare

CurativeCare

PrognosticationPrognostication How do you know when your patient How do you know when your patient

is dying?is dying? What do you say to your patient What do you say to your patient

and/or their families about prognosis?and/or their families about prognosis? Where did you learn how to Where did you learn how to

prognosticate?prognosticate? Are you comfortable with Are you comfortable with

prognosticating?prognosticating?

Traditional Domains of Traditional Domains of MedicineMedicine

DiagnosisDiagnosis

TreatmentTreatment

PrognosisPrognosis – – This important area This important area receives receives relatively little relatively little attention in modern medical training attention in modern medical training and researchand research

PrognosisPrognosis Important because enables better Important because enables better

decision making about care optionsdecision making about care options General physician bias – overly General physician bias – overly

optimistic optimistic by 2 to 5 fold by 2 to 5 fold Easier for some illnessesEasier for some illnesses Poor prediction skills may reflect Poor prediction skills may reflect

educational deficiencies for clinicianseducational deficiencies for clinicians We MUST accept certain degree of We MUST accept certain degree of

prognostic uncertaintyprognostic uncertainty

PrognosticationPrognostication Doctors are poor PrognosticatorsDoctors are poor Prognosticators Overly OptimisticOverly Optimistic More experienced Physicians make More experienced Physicians make

the least Errorsthe least Errors Decreased Prognostic Accuracy with Decreased Prognostic Accuracy with

Longer Physician-Patient RelationshipLonger Physician-Patient Relationship Most DNR’s are in Last 2 days of LifeMost DNR’s are in Last 2 days of Life

The Dying TrajectoryThe Dying Trajectory Concept first introduced by Glaser Concept first introduced by Glaser

and Strauss in 1965and Strauss in 1965 Refers to change in health status over Refers to change in health status over

time as a patient approaches deathtime as a patient approaches death Implications for prognosis, care needs Implications for prognosis, care needs

and decision makingand decision making Varies by individual patient and Varies by individual patient and

diseasedisease

Determining PrognosisDetermining Prognosis Functional StatusFunctional Status Measurement ScalesMeasurement Scales ADL’sADL’s Nutritional Status/Weight LossNutritional Status/Weight Loss

Prognostic ToolsPrognostic Tools Most valuable is to note magnitude of Most valuable is to note magnitude of

change observed since last prediction change observed since last prediction and incorporate into new predictionand incorporate into new prediction

Rule of thumb = A patient with Rule of thumb = A patient with advanced cancer who has “taken to advanced cancer who has “taken to bed” without a correctable cause will bed” without a correctable cause will usually die in a matter of weeks to a usually die in a matter of weeks to a few monthsfew months

Determining PrognosisDetermining Prognosis Functional AbilityFunctional Ability Single most Single most

important Predictive Factorimportant Predictive FactorHow much the patient can doHow much the patient can doActivity/Energy LevelActivity/Energy Level

Measurement ScalesMeasurement Scales Karnofsky Karnofsky Index- 100= Normal 0=DeadIndex- 100= Normal 0=Dead Less Less than 50 = less than 6 month than 50 = less than 6 month prognosis prognosis

Activities of Daily Living Activities of Daily Living (ADL’s)(ADL’s)

BathingBathing DressingDressing AmbulatingAmbulating FeedingFeeding ToiletingToileting TransferTransfer

Nutritional StatusNutritional Status

Weight Loss Greater Than 10%Weight Loss Greater Than 10% Albumin less than 2.5Albumin less than 2.5 Decrease Appetite/Ability to eatDecrease Appetite/Ability to eat

Three to Six Month Prognosis

CancerCancer Most predictableMost predictable Different types and locations often Different types and locations often

follow similar trajectoriesfollow similar trajectories Most remain well until 5 to 6 months Most remain well until 5 to 6 months

prior to deathprior to death Decline slow until 2 – 3 months Decline slow until 2 – 3 months

before and then rapid decline ensuesbefore and then rapid decline ensues Hospice care initially developed with Hospice care initially developed with

this trajectory in mindthis trajectory in mind

CHF/COPD/CVA, etcCHF/COPD/CVA, etc More difficult to predict time of More difficult to predict time of

deathdeath Overall health status low 6 to 24 Overall health status low 6 to 24

months prior to deathmonths prior to death Intermittent acute exacerbationsIntermittent acute exacerbations Oscillating from chronic ill health to Oscillating from chronic ill health to

acute crisisacute crisis

CHF/COPD/CVA, etc….CHF/COPD/CVA, etc…. No guarantee that current dip will No guarantee that current dip will

be the last onebe the last one Patients, families AND physicians Patients, families AND physicians

have trouble breaking the cycle they have trouble breaking the cycle they despisedespise

May not be able to definitively say May not be able to definitively say when but should focus on when but should focus on howhow and and wherewhere

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Palliative Care PatientsPalliative Care Patients CHF, COPD, Cancer, etcCHF, COPD, Cancer, etc Expected prognosis Expected prognosis <<12 months 12 months HomeboundHomebound Deteriorating medical condition at risk for Deteriorating medical condition at risk for

needing symptom managementneeding symptom management Family conflictsFamily conflicts Emphasis of care in the home settingEmphasis of care in the home setting 2 or more ED or Inpatient admissions in the 2 or more ED or Inpatient admissions in the

last yearlast year Functional or Performance Scale Score LowFunctional or Performance Scale Score Low

Patterns of DeathPatterns of Death The Cancer PatternThe Cancer Pattern ;; * * Rapid Rapid

DeclineDecline * * 70-80% Loss of Function in 70-80% Loss of Function in Last Last Three Months Three Months

The Chronic Disease Pattern;The Chronic Disease Pattern; * * Slow Slow Decline over YearsDecline over Years* * Harder to PrognosticateHarder to Prognosticate* * Death often Sudden and Death often Sudden and UnpredictableUnpredictable

FUNCTION VS. TIME

0

20

40

60

80

100

January February March April June July August September November DecemberFUNCTI

ONAL

ABIL

ITY

Cancer

COPD

Prognosis PerspectivesPrognosis Perspectives Clinicians often will not identify patients Clinicians often will not identify patients

with serious life threatening illnesses as with serious life threatening illnesses as terminalterminal

When asked, “Is this patient dying?” When asked, “Is this patient dying?” Most say, “No”Most say, “No”

YET…YET… When asked, “Would you be surprised if When asked, “Would you be surprised if

this patient died within the next year?”this patient died within the next year?” Most say, “No”Most say, “No”

How Do You Know How Do You Know Someone is Dying?Someone is Dying?

““that look”that look” not eatingnot eating poor functionpoor function skin changesskin changes

Communicating prognosis… Communicating prognosis… Some patients want to planSome patients want to plan Others are seeking reassuranceOthers are seeking reassurance Tough questions:Tough questions:

““Am I dying?”Am I dying?” ““How long do I have to live?”How long do I have to live?”

……Communicating prognosisCommunicating prognosis Inquire about reasons for askingInquire about reasons for asking

““Yes… but I don’t know when it will be”Yes… but I don’t know when it will be” ““What are you expecting to happen?”What are you expecting to happen?” ““What are your fears?”What are your fears?” ““Are there things you need to finish Are there things you need to finish

before you die?”before you die?” ““What experiences have you had with:What experiences have you had with:

others with same illness?others with same illness? others who have died?”others who have died?”

……Communicating prognosis Communicating prognosis Patients varyPatients vary

““planners” want more detailsplanners” want more details those seeking reassurance want lessthose seeking reassurance want less

Avoid precise answersAvoid precise answers hours to days … months to yearshours to days … months to years Remember, we are not good at thisRemember, we are not good at this

Case ExampleCase Example Mr. Sullivan is 72 years old. He has had lung Mr. Sullivan is 72 years old. He has had lung

cancer for 9 months and is now at the end cancer for 9 months and is now at the end stage. He is admitted to the hospital for stage. He is admitted to the hospital for worsening shortness of breath and you think worsening shortness of breath and you think this will be his final admission. He is very this will be his final admission. He is very likely to suffer pulmonary or cardiac arrest. likely to suffer pulmonary or cardiac arrest. His chances of surviving resuscitation is about His chances of surviving resuscitation is about

10%. There is a 90% chance he will die anyway.10%. There is a 90% chance he will die anyway. His chances of leaving the hospital alive is <2%.His chances of leaving the hospital alive is <2%.

DiscussionDiscussion What are the Palliative Care issues What are the Palliative Care issues

that need to be addressed?that need to be addressed? Your senior resident, on rounds, is Your senior resident, on rounds, is

upset about the discussion and asks, upset about the discussion and asks, “If aggressive treatment will give “If aggressive treatment will give him a few more months alive with him a few more months alive with his family, shouldn’t we do that????”his family, shouldn’t we do that????”

What do you say?What do you say?

Where Do We Go From Where Do We Go From Here?Here?

Education/TrainingEducation/Training Clinical Care across ContinuumClinical Care across Continuum Performance ImprovementPerformance Improvement Patient Education/Community OutreachPatient Education/Community Outreach ResearchResearch

Questions???Questions???