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Behavior Analysis And End-of-Life Care

Role of Behavior Analysis in Diverse Cultures at End-Of-Life Care

2011 ABAI Annual ConventionDenver, CO.May 31, 2011

Y.P. Manchanda, M.B.A, Ph.D.,N.M.D.Ymanchan@ldc.dds.ca.gov

( Sources: ELNEC (City of Hope/AACN) conference, End-of-Life Issues for Mental Health Providers, (www.enursingllc.com) , and “End-Of-Life Issues and Care,

APA Public Interest Directorate ,750 First Street, NE • Washington, DC • 20002)

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Melting Pot

“ If United States is a Melting Pot, the cultural stew still has alot of lumps” (G A Galanti, Caring for patients from different cultures,2nd, Ed, 1977)

“Unfortunately, how you sound may be how you are seen. When my parents need to resolve something over the phone, I am the one who makes the call, in my Valley Girl Americanese. My father can’t help but give himself away as Middle Eastern when he talks, and that tend to guarantee him poor service” (Firoozeh Dumas, Los Angeles Times, 8/29/2003)

“While gender discrimination has significantly decreased, it is still shockingly pervasive in medical field. When men complain to doctors about chronic pain, they are handed a prescription; when women complain, they are often told , “ it is in your head.” …” (Cynthia Toussaint, Los Angeles Times, 1/31/2004)

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SPEAKER

YASH MANCHANDA, MBA,Ph.D., N.M.D.

BA, MA - MATHEMATICSBSME, MBA, Ph.D. – ENGRG., MANAGEMENT, LEADERSHIP AND HUMAN

BEHAVIORMA, Ph.D. - CLINICAL PSYCHOLOGYN.M.D. – DOCTOR of NATUROPATHIC MEDICINE36+ YEARS - HIGH TECH/CQI INDUSTRY EXPERIENCE23+ YEARS - TRAINING / COUNSELING / EAP’sLICENSED MFCC(Inactive) AND LICENSED PSYCHOLOGISTCERTIFICATES - DRUGS/ALCOHOL/EATING DISORDERS COUNSELINGCERTIFICATE– CITY OF HOPE ELNC PALLATIVE PROGRAM TRAINERASSOCIATIONS:CALIFORNIA & AMERICAN PSYCHOLOGICAL ASSOCIATIONS, AMERICAN COLLEGE OF FORENSIC EXAMINERS,ASSOCIAON OF BEHAVIOR ANALYSIS, CALIFORNIA HOSPICE AND PALLIATIVE CARE ASSOCIATION

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Course Syllabus

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Please Turn Off Your Cell Phones

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Some Basics

CULTURAL SENSITIVITY

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CULTURE

Culture is a system of shared values And symbols, serving as guides for our interaction with others

Culturally competent health care includes sensitivity to issues such as ethnicity, gender, age, etc.

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2000 Census - 1

NUMBER PERCENT OF

OF PEOPLE

POPULATION Total U.S. population 281,421,906 100.00%

--- One race 274,595,678 97.6% --- White 211,460,626 75.1% --- Black or African American 34,658,190 12.3% --- American Indian and Alaska Native

2,475,956 0.90%

--- Asian 10,242,998 3.6% --- Native Hawaiian and other Pacific Islander

398,835 0.1%

--- Some other race 15,359,073 5.5% --- Two or more races 6,826,228 2.4%

--- Hispanic or Latino (of any race) 35,305,818 12.50%

--- Not Hispanic or Latino 246,116,088 87.5%

RACIAL AND ETHNIC CATEGORIES

Race:

Ethnicity:

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2000 Census - 2

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2000 Census - 3

The percent of total population's native languages in the United States:

English (82.1%) Spanish (10.7%) Other Indo-Europeanlanguages (3.8%) Other Asian or Pacific Islander languages (2.7%)Other languages (0.7%)

The percentage of followers of different religions in the United States:

Christian: (78.5%) - Protestant (51.3%) - Roman Catholic (23.9%) - Mormon (1.7%) - Other Christian (1.6%)

Jewish (1.7%) Buddhist (0.7%) Muslim (0.6%) Other/Unspecified (2.5%) Unaffiliated (12.1%) None (4%)

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Some Basics

SOME RESEARCH

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Some Research - 1

About the pain, suffering, or at the time of death deathMuslims – Kismet, God-willed destinyHindus & Buddhists – Karma, past incarnationChristians – Backlash of Adam’s SinJews – Divine PunishmentOther Religions – Combination of one or more

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Some Research - 2

“A 2005 report by NIM estimate that 15 million adults in US take herbal remedies. Regardless of the nationality, customers seek relief from chronic pain,fatigue,… strained muscles” in Mary Engle “Seeing the wisdom of another culture” LA Times, 10/8/07Cardiac Mortality peaked on 4th of the month in Chinese and Japanese patients. White patient control group did not show any peaksChinese and Japanese consider 4 as an Unlucky numberThe word “ Death” and “ Four” are pronounced similarly in Mandarin, Cantonese , and Japanese

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Some Research - 3

Dementia to Age 80 in %(Perkins 1997)• Caucasians( 12), African Americans(28),

Hispanics(39), Others (21)Antipsychotics Side Effects (Glazer1993,Jeste 1995)• African Americans have higher risks of developing

TD for the same doses than Caucasians, Hispanics or Asians

Immigrant Hispanics and Asians need much lower doses of antipsychotics than Caucasians but Hispanics have much higher Side Effects ( Smith 1999)Haldol Efficacy ( Smith 1999 )• American Born Caucasians(0.28), American Born

Asians (0.60) Foreign Born Asians ( 0.72)

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Some Research - 4

Non-Compliance ( Gills – 1989)• Two-thirds of Black , One-half of Asians and a

quarter of White patients in South Africa were non-compliant with oral phenothiazines

Asian Culture Belief in Ying-Yang (Lin 2000)• Red Pill less effective for Fever, anxiety or

ManiaIn America (Buckalew- 1982)• White Pill Analgesic and Black Pill stimulant by

Caucasians and the opposite for African Americans

More Severe Diagnosis ( Gaw – 1993)• Cases identical in every respect, if patients

identified as minorities

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Changing Demographics - A Complex Mosaic of Races and Ethnicities:Among the 262.4 million people aged 5 and over, 47 million ( 18%) speak a language other than English at home40 to 44 million ( 21 to 23 %) have extremely limited ( level 1) reading and quantitative skillsBy 2050 , 1 in 5(20%) will be over 65 year oldBy 2030, 1 in 4 elderly person will be from a racial or ethnic minority – Hispanic ( Increase by 328 % and Asian Pacific by 285 %)

• (SOURCE; U.S. Bureau of Census and National research Council and Rand policy Brief)

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Some Basics

SOME TERMINOLOGYUSED IN

END-OF-LIFE CARE

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HOSPICE ?

Care designed to give supportive care to people in the final phase of a terminal illness and focus on comfort and quality of life, rather than cure. The goal is to enable patients to be comfortable and free of pain, so that they live each day as fully as possible.Aggressive methods of pain control may be used.

The philosophy of hospice is to provide support for the patient's emotional, social, and spiritual needs as well as medical symptoms as part of treating the whole person.

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HOSPICE CARE ?

Hospice programs generally use a multidisciplinary team approach, including the services of a nurse, doctor, psychologist, social worker and clergy in providing care. Additional services provided include drugs to control pain and manage other symptoms; physical, occupational, and speech therapy; medical supplies and equipment; medical social services; dietary and other counseling; Continuous home care at times of crisis; and bereavement services.

Although hospice care does not aim for cure of the terminal illness, it does treat potentially curable conditions such as pneumonia and bladder infections

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PALLIATIVE CARE ?

“An approach that improves the Quality-Of-life of Patients and their Families facing the problem associated with life-threatening illness, through the prevention and relief of Suffering by means of earlyidentification and impeccable Assessment and Treatment of Pain and other problems, Physical, Psychosocial, and Spiritual” ( WHO 2008)

“Patient and Family-Centered care that optimizes quality-of-life by anticipating, preventing, and treating suffering. Palliative Care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice”

( Federal Register 2008)

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PALLIATIVE CARE ? (Contd.)

• Palliative care aims to relieve symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping.

• It helps patients gain the strength to carry on with daily life.

• It improves their ability to tolerate medical treatments and helps them better understand their choices for care.Overall, palliative care offers patients the best possible quality of life during their illness.

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EOL Care: Hospice and Palliative Care

Two overlapping models ofEOL care dominate

Share principles and philosophy of care

Use Interdisciplinary TeamsDiffer in emphasis, funding

and history

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Problems Experienced in EOL

PainFatigue, weaknessAppetite, sleep

problemsBreathing difficultiesNausea, vomiting,

constipationDelirium, other

cognitive changesDependency,

immobilityLoss of control,dignity, important roles,status,abilities, lifestyle

Existential distressAdjustment and grief

reactions (guilt, anger, regret)

Disease recurrenceInterpersonal problemsEconomic and care

giving burdenPre-existing, chronic,

recurrent or recent onset mental illness(Conill, 1997; Emanuel & Emanuel,1998;

Nelson et al, 2001)

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End of Life in America Today - 1

Death has not been conquered—all of us will die While our extraordinary health care system and biomedical science enterprise has learned primarily to:

o Cure only a few illnesses o Prolong the experience of living with most

chronic illness o Prolong the process of dying

A few of us (< 10%) will die suddenly. Most of us (> 90%) will experience a protracted life-threatening illness.

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End of Life in America Today - 2

During the second half of the 20th century, the age of science, technology, and communication has shifted the values and focus on many levels We have become a "death denying" society

o Valuing Productivity Youth Independence

ando Devaluing Age Family Interdependent

caring for one another

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End of Life in America Today - 3

At the same time, new science and technology have offered the potential of medical therapies previously unknown Where once physicians could only provide comfort in the face of serious illness, the modern health care system can now "fight aggressively" against illness and death We frequently attempt to prolong life at all cost We often succeed

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Impact of Changes - 1

Improved sanitation, concerted efforts by public health, and the development of a wide range of antibiotics and other medical interventions have increased life expectancy. A plethora of new medications and therapies have changed the way we experience illness The shift in focus has been so complete that death has become the enemy to be beaten at all costs Many physicians and health care workers have come to believe that they have failed if they do not save their patients from death

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Impact of Changes - 2

Place of Death – Gallup Poll 1996 - 90% of the respondents expressed a desire to die at home As medicine and technology has developed death has moved out of the home and into institutions.People die behind hospital doors • In 1949, 50% of deaths in America occurred in institutions • In 1958, this increased to 61% • Since 1980 it has remained at around 74%

In 1992:- 57% of Americans died in hospital- 17% died in nursing homes

- Only 20% died in their own homes

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SIGNS AND SYMPTOMSPAIN, DEATH

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WHAT IS PAIN

AMA and American Pain Society (1999): An unpleasant sensation associated with actual or potential tissue damage and mediated by specific nerve fibers to the brain where its conscious appreciation may be modified by various factors.It is an unpleasant sensory and emotional experienceIt is co morbidity of various diseases and injuriesUnrelieved pain has enormous physiological and psychological effects on patients and can slow recovery, create burdens for patients and their families, and increase cost to the health care system”

(Dennis O’Leary, MD, President Joint Commission)

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Your Perception

PAINYOUR PERCEPTION

AndEXPERIENCE

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Acute Pain

Physiological Manifestations – Increased

– Systolic and diastolic pressures– Pupillary diameter– Palmar sweating– Muscle tension– Intake oxygen– Others

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Chronic Pain

Physical Manifestations :- Sleep disturbances

- Appetite changes

- Increased somatic preoccupation

- General physical deterioration

- Physical Inactivity

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Both Pains

Psychological Manifestations –

– Mood Disturbances – Anxiety, Depression

– Personal Relationships

– Anger, Guilt and Resentment

– Dependency on the healthcare system

– Dependency on pain medications

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DEATH

SIGNS AND SYMPTOMS OF DEATH

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Some Basics

DEATH AND DYINGYOUR PERCEPTION

AndEXPERIENCE

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Dying

A natural part of lifeOpportunity for growthProfoundly personal experience

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RestlessRestless

ConfusedConfused TremulousTremulous

HallucinationsHallucinations

Mumbling DeliriumMumbling Delirium

MyoclonicMyoclonic JerksJerksSleepySleepy

LethargicLethargic

ObtundedObtunded

SemicomatoseSemicomatose

ComatoseComatose

SeizuresSeizures

THE USUAL ROADTHE USUAL ROAD

THE DIFFICULT ROADTHE DIFFICULT ROAD

NormalNormal

DeadDead

2 Roads to Death

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Good Death

Be free of sufferingAchieve life closureReceive care consistent with one’s beliefs, wishes and values

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Good Death (Contd.)

Free from Suffering -•Suffering is the “State” of severe distress that threatens intactness of the person as an individual

•Failure to respond to person’s needs of distress intensifies suffering

•Sources of suffering may include: fear of physical distress, perceptions of self, body, family relationships

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Good Death (Contd.)

Life Closure ?Completion with worldly affairsCompletion of community relationshipsMeaning about one’s individual lifeLove of self/OthersCompletion of family/friend relationshipsAcceptance of the finality of lifeNew self beyond personal lossMeaning about lifeSurrender to the unknown - “Letting go”

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SIGNS AND SYMPTOMS of Death* - 1

Progression:$�������0RQWKV�%HIRUH��

1. Withdrawal from the world and people2. Decreased Food Intake3. Increase in Sleep4. Going Inside Self5. Less Communication

* Barbara Karnes,RN (1986) – Gone From My Sight, Vancouver, WA

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SIGNS AND SYMPTOMS of Death* - 2

Progression:%�������:HHNV�%HIRUH

a) 'LVRULHQWDWLRQ���$JLWDWLRQ���7DONLQJ�ZLWK�XQVHHQ���&RQIXVLRQ���3LFNLQJ�DW�FORWKHVb) 3K\VLFDO���'HFUHDVHG�%ORRG�3UHVVXUH���3XOVH�UDWH�FKDQJH

• *Barbara Karnes,RN (1986) – Gone From My Sight, Vancouver, WA

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SIGNS AND SYMPTOMS of Death* - 3

Progression:%�������:HHNV�%HIRUH��&RQWG��

b) 3K\VLFDO�&RQWG�����6NLQ�FRORU�ಥ SDOH��EOXLVK���,QFUHDVHG�SHUVSLUDWLRQ���,UUHJXODU�5HVSLUDWLRQ���&RQJHVWLRQ���6OHHSLQJ�EXW�UHVSRQGLQJ���%RG\�WLUHG�RU�KHDY\�FRPSODLQWV���1RW�HDWLQJ���WDNLQJ�OLWWOH�IOXLGV����9DU\LQJ�ERG\�WHPSHUDWXUH

• *Barbara Karnes,RN (1986) – Gone From My Sight, Vancouver, WA

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SIGNS AND SYMPTOMS of Death* - 4

Progression:

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2. 6XUJH�RI�HQHUJ\3. 'HFUHDVH�LQ�%ORRG�SUHVVXUH4. (\HV�JORVV\��WHDUIXO��KDOI�RSHQ

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6. 5HVWOHVVQHVV�RU�1R�$FWLYLW\7. 3XUSOLVK��EORWFK\�NQHHV��IHHW��KDQGV

• *Barbara Karnes,RN (1986) – Gone From My Sight, Vancouver, WA

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MENTAL ILLNESSES

SIGNS AND SYMPTOMS OF

COMMON MENTAL ILLNESSES

DURINGEND-OF-LIFE CARE

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Depression, anxiety, delirium

Highly prevalent, under-diagnosedMay prevent quality dyingEffective management is possible

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Depression

25%–77% of patientsIntense sufferingNot inevitableTreatable in most

casesEarly treatment is

better

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Risk factors . . .

Pain, other symptomsProgressive physical impairmentAdvanced diseaseMedications• steroids• benzodiazepines

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. . . Risk factors

Particular diseases• pancreatic cancer• stroke

Spiritual painPreexisting risk factors• prior Hx, family Hx, social stress• suicide attempts, substance use

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Diagnosis

Somatic symptoms always presentLook for psychological, cognitive symptoms• pain not responding as expected• sad mood / flat affect, anxious, irritable • worthlessness, hopelessness, helplessness,

guilt, despair• anhedonia, lost self-esteem

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Suicide

Assess all depressed patients for riskDiscussion of thoughts of suicide may reduce the riskSuicidal thoughts a sign of depressionHigh risk if recurrent thoughts, plans

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Management of depression

Psychotherapeutic interventions• cognitive approaches• behavioral interventions

MedicationsCombination of psychotherapy, medication

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Counseling goals . . .

Weave counseling into routine interventions• include family when possible

Improve patient understandingCreate a different perspectiveIdentify strengths, coping strategies

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. . . Counseling goals

Reestablish self-worthNew coping strategiesEducate about modifiable factors

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Anxiety . . .

Fear, uncertainty about futurePhysical, psychological, social,

spiritual, practical issuesPresentation• agitation, insomnia,

restlessness, • sweating, tachycardia,

hyperventilation,• panic disorder, worry, tension

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. . . Anxiety

Assessment complexDifferentiate from• delirium, depression• bipolar disorder• medication effects• insomnia• alcohol, caffeine

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Management of anxiety

Counseling, supportive therapyBenzodiazepines• short vs long half-life

• diazepam • lorazepam • alprazolam, oxazepam

Atypical antidepressants

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Delirium

Global change in cognition, awareness, acute onsetPresentation• fluctuating level of consciousness• cognitive impairment• distinguish from dementia, depression, anxiety

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Causes to consider . . .

Infections, sepsisMedications, street drugs (including withdrawal)HypoxemiaMetabolic

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. . . Causes to consider

Vitamin deficienciesFecal impaction, urinary retentionRenal, hepatic failureTumor burden, secretionsChanges in environment

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Terminal delirium

Day-night reversalAgitation, restlessnessMoaning, groaning

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DEMENTIA - 1

• Dementia – Two Types• Alzheimer Type:

• Multiple Cognitive Deficits due to memory impairment , deficits of language, motor activities, recognition of objects, and executive functioning.

• Deficits not due to central nervous system ,systemic medical condition, or medicine

• Gradual Onset• Not exclusively in Delirium• Causes significant decline in social,

occupational or other important areas of functioning from before

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DEMENTIA - 2

• Dementia – Two Types (Contd.)• Vascular Type:

• Impaired ability to learn and or recall new things due to memory impairment.

• Deficits of language, motor activities, recognition of objects, and executive functioning.

• Focal neurological signs and symptoms – deep tendon reflexes, extensor plantar response, gait abnormality, weak extremities.

• Not exclusively in DeliriumCauses significant decline in social, occupational or other

important areas of functioning from before• Other Types: Due to other medical conditions

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Your Perception

MENTAL ILLNESSESYOUR PERCEPTION

AndEXPERIENCE

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End-Of-Life Care

Vigeland Sculpture Park, Oslo, Norway

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Some Basics

BEHAVIOR ANALYSIS

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Highly complex variables governing human behaviorHuman capabilities• Large repertoires of response chains, verbal

behaviorAnalysis of control complicated by• Individual differences in histories of

reinforcement • Practical, ethical, logistical, etc. issues

The Complexity of Human Behavior

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Why Behavior Analysis?

Behavior Analysis is:1. A scientific approach to improving

socially significant behavior2. It uses procedures derived from the

principles of behavior and applies systematically

3. It demonstrates experimentally that the procedures employed were responsible for the improvement in behavior

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Why Applied Behavior?• What is Science ?

– A systematic approach to understand a natural phenomena as evidenced by description, and control that relies on : – determinism as its fundamental

assumption…– Empiricism as its prime directive…– Experimentation as its basic strategy…– Replication as its necessary requirement for

believability…– Parsimony as its conservative value…– And philosophic doubt as its guiding

conscience.

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What is Applied Behavior Analysis ?

It is:• A scientific approach to improving socially

significant behavior…• In which procedures derived from the principles

of behavior are systematically applied to improve socially significant behavior…

• And to demonstrate experimentally that the procedures employed were responsible for the improvement in behavior

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Applied Behavior Analysis - Components

Six key components:• Guided by attitudes of methods of scientific inquiry• All behavior change procedures are described &

implemented in a systematic, technological manner• Only procedures conceptually derived from the basic

principles of behavior are circumscribed by the field• Focus is on Socially Significant Behavior• Seeks to make meaningful improvement in important

behavior• Seeks to produce an analysis of the factors responsible

for improvement

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Socially Significant Behavior

Immediate importance to participant • Social• Language• Daily Living• Self Care• Recreational and/or Leisure

This is what affects during End-Of-Life Care

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Copyright © 2009 Martti T. Tuomisto

Importance of Behavior Analysis

1. All individuals do not improve 2. The improvements may be good after

counselling, but may stop or deteriorate after some time.

3. Some may even regain old behaviors4. Emotional and Physical gains may

deteriorate 5. Some may even need psychiatric

treatment.

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Assessment

Role:• Identify and define target for behavior change• Identify relevant factors that may influence

intervention5 Phases

• Screen• Define Problem or criteria for achievement• Pinpoint Target Behavior• Monitor Progress• Follow Up

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Pre-assessment Considerations

Ethical considerations• Authority

• Permission

• Resources

• Social validity

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Assessment Methods

Indirect measures• Interviews• Checklists

Direct measures• ABC Recording• Naturalistic Observation• Analogue Functional Analysis

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Interview the Individual

Identify list of potential target behavior• What and when• Avoid ‘why’

Identify primary concernsVerify through• Direct observation• Use of questionnaires or self-

monitoring

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Interview Significant Others

Develop behavioral descriptions•What, when, how•Avoid ‘why’•Move from general to specificDetermine participation

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Standardized Tests

Consistent administration • Compares performance to specified criteria• Norm-referenced

Limitations• Do not specify target behaviors• Do not provide direct measure of behavior• Licensing requirements

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Ecological Assessment

Data on individual and environment• Physical features• Interactions with others• Home• Reinforcement history

Evaluate amount of descriptive data required to address current need

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Habilitation

Degree to which a person’s behavior repertoire maximizes short and long term reinforcers and minimizes short and long term punishersUse to assess meaningfulness of behavior change

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Determining Habilitation

Relevance of behavior after interventionNecessary prerequisite skillsIncreased accessImpact on behavior of othersBehavior CuspPivotal Behavior• Once learned produces changes in other untrained

behaviors• Self-initiation, joint attention• Advantages for both interventionist and client

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Defining Target Behaviors

Role and Importance of Definitions• Definitions required for replication• Replication required to determine usefulness of data

in other situations• Necessary for research

Writing Target Behavior• Accurate• Complete• Concise• Inclusions• Exclusions

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BEHAVIOR ANALYST & OTHERS

BEHAVIOR ANALYST- Assessment , Intervention and ManagementPHYSICIAN- Physical Health Assessment , Medication and ManagementPSYCHIATRIST- Pain and Medication Assessment and ManagementPSYCHOLOGIST – Assessment and ManagementSOCIAL WORKER – Resources and Relationship Assessments and ManagementNURSES – Level Of Care Management

Vigeland Sculpture Park, Oslo, Norway

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ISSUES AT TIME OF DEATH

ISSUES AFFECTING PATIENT AT TIME OF DEATH• Feelings About Undeserving Care• Being Burden on Others - Dependency• Religion/Culture/Spirituality - Mores• Resources Availability• Financial Concerns• Legal Implications

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EOL Care

Goal of EOL care is a “good death”Addressing the multiple dimensions of quality of life helps ensure a “good death”Role of The Mental Health Care Provider in END-OF-LIFE Care Process is

BY

ASSESSMENT

INTERVENTION

EDUCATE

ADVOCATE

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(Cipani & Schock, 2007)

Assessment in Behavior Analysis

• Explicitly delineate the intermediate step between data collection and treatment plan

• Provides new Behavior Analysts a system to allow consistent and effective assessment and treatment

• Provides a framework for more experienced analysts to use in problem solving when initial treatment proves ineffective

• Maintain a clear focus on the Behavior and its environmental function

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Assessment

CAPACITY FOR HEALTH CARE DECISION MAKING IS SEVERELY TAXED AT THE TIME OF END - OF - LIFE, BOTH OF THE PERSON AND OTHER DECISION MAKER

PATIENT ASSESSMENT :• Temporary Impairment – Due to delirium

or other medical condition• Chronic Impairment – Due to Dementia• Selective Impairment – Decide to

Withdraw Treatment Regimen but Cannot Manage Financial Resources (Grosso 1986, 1994)

• Clinical Depression ( It is very difficult to assess this in a dying person)

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Illness / treatment summaryIllness / treatment summaryPhysical Physical Decision makingDecision makingCommunicationCommunicationPsychologicalPsychologicalSocialSocialSpiritualSpiritualAnticipatory planning for deathAnticipatory planning for death

Assessment

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Informed consent

Problem treatment would addressWhat is involved in the treatment / procedureWhat is likely to happen if the patient decides not to have the treatmentTreatment benefitsTreatment burdensForms Such as POLST, DNR, etc.

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Advance Directives

Advance care planning• process of discussion,

documentation, implementation

Advance directives• instructional statement

• living will• values history• personal letter• medical directive

Statutory• physician immunity

Advisory• patient wishes

Proxy designation• health care proxy

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Determining Incapacity

General incapacitySpecific incapacity• Is there a decision?• Is the information understood?• Is the reasoning logical and with appreciation

for consequences?• Is the decision sensible?

Reassess for each decision

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When language is a barrier . . .

Use a skilled translator• familiar with medical terminology• comfortable translating bad news

Consider telephone translation servicesAvoid family as primary translators• confuses family members• how to translate medical concepts• modify news to protect patient• supplement the translation

Speak directly to the patient

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Roles of Physician

AssessmentCommunicating Bad NewsTreatment PreferencesCommunicating PrognosisInterventions:• Education• Disease Management• Referrals

Advocacy

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Role of Psychologist/Behavior Analyst

Help mentally and emotionally distressed clients adjust to life.Help people deal with personal crisis, such as death

of a loved one. Assess patientsIntervene to help individuals and familyeDucate Patients, Families, and team MembersAdvocate for patients and Families Research

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Role of Social Worker

Assess clients and include comprehensive information to help decision in making.Advocate for the needs, decisions, and rights of clients and their familiesKnow the available community resources and how to gain access to them Be aware of the impact of financial resources on family decisionmaking along the continuum of illness and at the end of life Engage in social and political action that seeks to ensureIntervene along with with other team members along the continuum of illness.Continue to develop, specialized knowledge and understanding about history, traditions, values, and family systems as they relate to palliative and end of life care within different groups.

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INTERVENTIONS

- Intervention for patient & family- Treat psychopathology- Promote coping with diagnosis, associated

stressors, e.g.,physical symptoms, emotionalresponses

- Initiate goals of care discussions- Facilitate communication amongst, patient, family,

staff- Support Staff- Continuity/coordination of care- Conduct research, program evaluation/QI- Training and supervision

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ADVOCACY

MENTAL HEALTH CARE PROVIDERS NEED TO ADVOCATE FOR

• GOOD MEDICAL CARE• AVAILABILITY OF HOSPICE AND

PALLIATIVE CARE• PSYCHOSOCIAL NEEDS FOR PATIENT

AND FAMILY• PROVISION OF ADEQUATE RELIGEOUS,

CULTURAL, AND SPIRITUAL SUPPORT• MORE PUBLIC EDUCATION• MORE FUNDS FOR RESEARCH

AND• BECOME INVOLVED IN INTERDICIPLINARY

TEAMS• JOIN BIOETHICS COMMITTEES OF HOSPITALS AND OTHER PLACES

PROVIDING HOSPICE AND PALLIATIVE CARE• PUBLIC AND PROFESSION EDUCATION

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Educate

Educate staff about:- Mental Illness & symptoms- Expectations for symptom

improvement- Limits of treating long-standing

psychiatric disorders- Discuss behavioral management

strategies

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Your Perception

PERCEPTION OF YOUR ROLEAnd

EXPERIENCEAS A

PROVIDER

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In Summary

Cultural Sensitivity • Your Concept of Cultures in Southern California• Cultural Issues and AwarenessSigns and Symptoms of : • Aging• Death• Pain• Mental Illnesses ( Anxiety, Depression, Dementia)Roles of Healthcare Providers : • Physician• Nursing• Psychologist• Social Worker• Others

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Culture Quiz - 1Following is a list of 25 questions, read each one of them carefully and write your choice from

a) African American, b) Hispanics c) Anglo Americans, d) Asians, e) Middle Easterners f) Europeans., g) All of them , h) None of them --- in the provided space

__1. People from which culture are least likely to use the world “ No” ? __2. The “pointing finger” gesture is most offensive to which culture __3. People from which culture be least comfortable in face to face interview__4. The group that is most likely to clash with African Americans? __5. Which group stands closest when talking to friends? __6.The group that considers itself most health conscious is :__7. The group that feels they have the least time for “leisure” or rest is:__8. Which group is least likely to openly complain about poor services? __9. Which group gets the most physical exercise in each week? __10. Which group is most likely to ignore the onset of health problems? __11. Which group believes it treats women with the most respect? __12. The majority of the ethnic food in the United States is consumed by__13. The group that is least likely to visit the doctor is:

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Culture Quiz 2Culture Quiz – Contd:

__14. The group that least objects to receiving advertisements by direct mail is:__15. The group that watches the most TV each week is:__16. Which group is usually the most punctual for meeting and appointments? __17. Which group is least likely to consider religion as an important part

of their lives?__18. The group whose spending power increase the most from 1990-2001 is:__19. The group that would most aspire to be wealthy is:__20. Which group is least prone to allergy problems?__21. Which group places the highest value on openly displaying emotions? __22. Which group would tend to be most comfortable with lectures?__23. Which group would be least likely to have health insurance?__24. Which group would tend to prefer hands on training?__25. Which groups are most comfortable in providing personal information?

( Michael Lee – Culture Connections – provides keynote speeches, training and consulting on diversity and selling to ethnic markets.- seminars@ netvista.net)

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Culture Quiz Answers - 1Following is a list of 25 questions, read each one of them carefully and write your choice from

a) African American, b) Hispanics c) Anglo Americans, d) Asians, e) Middle Easterners f) Europeans., g) All of them , h) None of them --- in the provided space

1. People from which culture are least likely to use the world �“ No�” ? d2. The �“pointing finger�” gesture is most offensive to which culture ? g3. People from which culture be least comfortable in face to face interview? d4. The group that is most likely to clash with African Americans? d5. Which group stands closest when talking to friends? e6. The group that considers itself most health conscious is : b7. The group that feels they have the least time for �“leisure�” or rest is: d8. Which group is least likely to openly complain about poor services? b9. Which group gets the most physical exercise in each week? c10. Which group is most likely to ignore the onset of health problems? c11. Which group believes it treats women with the most respect? e12. The majority of the ethnic food in the United States is consumed by: c13. The group that is least likely to visit the doctor is: a

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Culture Quiz Answers - 2Culture Quiz – Contd:

14. The group that least objects to receiving advertisements by direct mail is: b15. The group that watches the most TV each week is: a16. Which group is usually the most punctual for meeting and appointments? f17. Which group is least likely to consider religion as an important part

of their lives? d18. The group whose spending power increase the most from 1990-2001 is: d19. The group that would most aspire to be wealthy is: d20. Which group is least prone to allergy problems? a21. Which group places the highest value on openly displaying emotions? e22. Which group would tend to be most comfortable with lectures? a23. Which group would be least likely to have health insurance? b24. Which group would tend to prefer hands on training? b25. Which groups are most comfortable in providing personal information? b

SCORING: if your score is - -3:Terrible Guesses, 4-7: Poor Guesses, 8-11 Good Guesses, 12-15 Good Understanding of Culture, 16-18: Better than average Understanding of

Culture, 19-21: Superior Understanding of Culture,22 - 25: You are Culture Expert.

( Michael Lee – Culture Connections – provides keynote speeches, training and consulting on diversity and selling to ethnic markets.- seminars@ netvista.net)

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CULTURAL AWARENESS - 1

People from Asian Cultures in general, and Japanese in particular, are least likely to use the word –” NO”Pointing with the finger is universally offensive gesture in most culturesAsians tend to be more visual than verbal and do not do well in face to face interviews. Hispanics prefer kinesthetic communication.Asians are totally at the other end of cultural scale in almost all respects - including personal space, eye contact or body language – than the Europeans or African Americans.People from Middle East, India, Pakistan, etc tend to have the most intimate personal space when talking to friends and may seem aggressive to people from other cultures

(Source; Michael D Lee, Culture Connections, Jun 2002)

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CULTURAL AWARENESS - 2

A higher percentage of Hispanics(47%) considered them to be highly health conscious as compared to African Americans(42%), Anglos (41%) or Asians(36%)A higher percentage of Asians(48%) feel that they do not have enough time for leisure activities as compared to African Americans(43%), Anglos (34%) or Hispanics(35%)Hispanics are less likely to complain about poor services but they are more likely than other groups to let their friends and families know about itA higher percentage of Anglos(60%) report exercising at least 3 times a week as compared to African Americans(38%), Asians (27%) or Hispanics(35%)Anglos are most likely to ignore health problems. Asians are most likely to self diagnose and try to treat themselves

((Source; Michael D Lee, Culture Connections, Jun 2002)

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CULTURAL AWARENESS - 3

Middle Eastern men believe they treat their women with more honor and respect than their counterparts in this countryThe majority of the ethnic food(75%) is being eaten by mainstream consumers. Vegetables and spices are considered healthier than traditional high fat diet.African Americans( 28%) are least likely to see a doctor annually as compared to anglos(29%), Hispanics(30%) or Asians(34%)Hispanics receive substantially less direct mail than the other groups and hence do not mind(71%) to receiving it as compared to Anglos(57%)African Americans spend the most time watching TV during the week, followed by Hispanics, Anglos and Asians

(Source; Michael D Lee, Culture Connections, Jun 2002)

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CULTURAL AWARENESS - 4

Europeans are much more punctual to keep appointments as compared to Anglos and othersAsians led the way in multicultural buying power, with an increase of 125%, as compared to118% for Hispanics, 86% for African Americans and 67% for Anglos between 1990 and 2001African Americans( 36%) had least allergy complaints as comparedto Anglos(37%), Hispanics(40%) or Asians(50%)A higher percentage of Asians(79%) aspired to be wealthy as compared to African Americans(67%), Anglos (64%) or Hispanics(60%). Hispanics will share their wealth with relatives or friends whereas African Americans or Asians will give to charitiesBoth Hispanics and African Americans are more likely to cite religion as a very important part of their lives than Anglos. Asians (except Vietnamese) do not consider religion that important.

(Source; Michael D Lee, Culture Connections, Jun 2002)

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CULTURAL AWARENESS - 5

Middle Eastern and African American tend to openly show more emotions than other culturesAfrican Americans show more propensity to verbal communications, whereas Asian prefer more visual – Charts, Diagrams or PicturesThe group least likely to have health insurance are Hispanics(40%) , African Americans(25%) , and Anglos (14%)A higher percentage of Asians and Hispanics prefer kinesthetic learning by physically engaging in these. Both Hispanics and African Americans are more likely to give out personal information than other cultures in the hope to receive better services. Asians are very selective.

(Source; Michael D Lee, Culture Connections, Jun 2002)

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QUESTIONSAND

ANSWERS

QUESTIONS

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THANK YOUTHANK YOU