Disparities in Access to Optimal EndofLife Care

1
Disparities in Access to Optimal
End-of-Life Care

• Arlene Lowney RN MBA
• New Hampshire Hospice Palliative Care Org.
• October 7. 2009
• Evercare Hospice Palliative Care, Inc.

2
Objectives

• Understand cultural and ethnic beliefs and views
  re disease, death, NHs, dying, pain
  reporting/assess- ment and management and EOL
  decision-making
• ID challenges of improving access to EOL care for
  vulnerable individuals along continuum of care
• Discuss impact of language/culture on pain
• Describe role of provider narrative in pain
  practice
• Id use of complimentary treatments
• Provide resources and tools for improving access,
  inclusion, pain assessment and reducing
  disparities

3
Health Disparities

• differences in the incidence, prevalence,
  mortality and burden of diseases and other
  adverse health conditions that exist among
  specific population groups in the United States
• NIH 2000

4
Populations at Risk

• Immigrants
• Homeless
• Veterans
• Mentally Ill
• Intellectual and developmentally disabled
• Substance abusers

• Elderly
• Women
• Children
• Minority groups
• NH residents
• Uninsures
• Low socioeconomic areas

5
Unequal Burden of Pain

• Pain is the medical symptom that most often
  propels people to seek medical care
• Because psychosocial problems often complicate
  treatment, patients in pain may require
  psychological and/or spiritual care as well
• Mounting evidence demonstrates that the standard
  of care for racial and ethnic minorities is
  inferior to that for Caucasians
• Review of literature regarding disparities in
  pain treatment from patient, provider, and public
  health perspectives very compelling
• David Morris Illness and Culture in the
  Post-Modern Age 1999 text

6
Minority Status

• Any culturally or physically distinctive and
  self-conscious social aggregates with hereditary
  membership
• . May be subject to political, economic or
  social discrimination by a dominant segment of a
  political society
• Van der Zanden 1972

7
The Ideal Patient

• Person who wishes to make individual decisions,
  who values autonomy, and who wants all
  information pertaining to his or
• her health care
• Orona LJ, et al Cultural Aspects of
  Nondisclosure Camb Q Healthcare Ethics
  v31994338-46

8
What is Culture?

• .in its broadest sense, it refers to groups of
  people with similar ethnic background, language,
  religion, family values, and life views
• learned patterns of behaviors, beliefs and
  values shared by individuals in a particular
  social group
• provides human beings with both their identity
  and a framework for understanding experience
• Rev. Dr. Carlos Sandoval

9
Are Culture and Nationality Synonymous?

• Many referred to the U.S. as the great melting
  pot of the world
• In reality, the U.S. is a multicultural or
  pluralistic society
• made up of members of different ethnic, racial,
  religious or social groups, living side by side
• sharing aspects of the dominant U.S. culture
  while maintaining their own values and traditions
• Anne Fadiman The Spirit Catches You and The
  Spirit Catches You and You Fall Down

10
Ethnicity

• Focuses on the distinction between groups of
  people with membership in a group based on
  culture, heritage, national origin, as well as
  shared ancestry, geography, historical
  experiences
• In a broad sense, a social construct designating
  a group of people within any given society Huff
  Kline 1999
• Ethnic categories Hispanic or Latino refer to all
  peoples of Spanish ancestry
• Asian category encompasses people from Southeast
  Asia, East India, China, Japan, Korea, Indonesia
  
• Ezenwa et al Racial Ethnic Disparities in
  US J Nursing Schol 383 2006
  225-33
• Edwards, Fillingim et al Race, Ethnicity,
  Pain
• wwwelsevier.com/locate/pain

11
What We Know

• Racial and ethnic minorities often receive
  different and less optimal management of their
  health care than Caucasians
• Patients race has a significant effect on the
  treatment provided and the mortality rate among
  Medicare beneficiaries and veterans
• Persistent racial disparities in access to
  healthcare and pain/other treatment may be the
  result of unequal healthcare that is the legacy
  of a racially divided society and health care
  system
• Bonham Race, Ethnicity and Pain Treatment

12
CDC Statistics

• By 2050
• 52 White
• 22 Hispanic
• 16 African American (to include immigrants from
  Caribbean and Latin America, as well as Africa)
• 10 Asian

• In 2006 ? population over 300 mil in U.S.
• 13 in U.S. are minority
• Hispanic 14.8
• (44.3 ml)
• Blacks 14
• ( 40.2 mil)
• Asians fastest growing (14.9 mil) 5
• American Indian and Alaskan Native (4.5 mil)
• Census Bureau 2006

13
What are Health Beliefs?

• ..diverse beliefs reflecting cultural background
  and position in society
• Individual and societal
• Influenced by prevailing social and medical
  ideologies
• May convey sense of superstition, fatalism
  mistaken beliefs past experience
• Influential in decisions about truth- telling,
  help-seeking activities, trust and receptivity to
  treatment

14
What is Race?

• Race distinguishes major groups of people
  according to shared ancestry and distinctive
  physical characteristics differentiates a
  population related by blood, common descent, or
  heredity Edwards 2001
• Not a biological category ?a social construct
  created from prevailing social perceptions within
  individual societies, which determine its meaning
  and impact
• Slavery
• Segregation
• Discrimination
• Williams 2002
• NIH? 5 racial categories
• Alaskan Native or American Indian
• Asian
• Hawaiian or Other Pacific Islander
• Black or African American
• White
• Ezenwa et al Racial Ethnic Disparities in
• US J Nursing Schol 383 2006 225-33

15
Government-Sponsored Injustices

• Tuskegee Syphilis Study 1932 -1972
• Human experimentation
• without consent
• without knowledge of diagnosis syphilis
• deliberate non-treatment
• US Public Health Service

• Forced sterilization and Eugenics practices
• (1930 1970s)
• Controlled growth of minority population in
  Puerto Rico
• 1/3 of women of child-bearing age were sterilized
  

16
Disparities in Health Care by Race Region

• 14 region study commissioned by RWJ Foundation to
  assess regional variations and narrow HCD across
  lines of race and geography and to improve health
  care quality
• Dartmouth HitchcockAtlas

• African American with Diabetes/Vascular Disease
• Less likely to receive
• annual hemiglobin screen (66 CO? 88 MA)
• 5x more likely to have amputation
• Mammogram screen rate 48 CA ? 72 MA
• Asian American women screening rates lower than
  general older population

17
No Such Thing as Low Risk

• Prospective cohort study (5584 pts) to evaluate
  prevalence of pain (length and severity) and
  satisfaction with pain control in hospital
• Pain common in study population (80 African
  American - 62 women - dispersed among diagnoses)
  
• Even those low-risk for pain (60 with pain
  28 reported severe pain)
• Patients carry a heavy pain burden and
  dissatisfaction with pain management in hospital
• Recommendation for systematic JCAHO approach over
  non-selective approach (targeting all at risk)
• Whelan et al Pain and Satisfaction with Pain
  Control in Hospitalized Medical patients Arch Int
  Med v164 2004

18
Effects of Unrelieved Pain

• Negatively affects independence, mobility,
  function, intimacy, quality of life (QOL)
• May slow patient recovery post-injury and/or
  post-operatively
• Increases burden on patients, caregivers and
  families
• Increases confusion, depression, delirium, fall
  risk
• Negative impact on social, emotional, spiritual,
  relationships and QOL
• Suicidal ideation increases
• Increases financial burden on individuals,
  family, healthcare system
• OLeary, D JCAHO Pain mgmt tender issue at
  hospitals

19
What is Pain

• a ubiquitous symptom that affects all
  patient populations
• Miaskowski
• Self report of pain the single most reliable
  indicator of pain intensity
• In a study of more than 1000 patients with
  metastatic CA, consistent discrepancy between
  patient and physicians estimate of pain severity
• Cleeland et al 1997
• One reason for under-treatment of pain may be
  discrepancy between patient pain ratings
  clinicians personal opinions (which influence
  decisions about pain intensity, recorded
  assessments and titration of opioid dose to
  relieve severe pain)
• McCaffery et al Nurses Personal Opinions
  about Pt Pain Their effect
  on Assessments Titration 2000

20
Pain Assessment

• Cornerstone of optimal pain management
• FYI More susceptible to biasing influences
• Critical variables
• Awareness of social cognition which is central to
  care planning and tracking progress
• How do people think in interaction with their
  social world, to include judgments, attitudes,
  attributions and inferences
• Addresses mediating factors that create and
  maintain disparities
• Tait Chibnall Racial Ethnic Disparities
  in Evaluation
• Treatment of Pain Prof Psych Research
  Practice 2005

21
Post-Modern Pain

• More than a medical issue more than a matter of
  nerves and transmission
• Pain has historical, psychological and cultural
  dimensions
• Meaning is often fundamental to the experience of
  pain
• Minds and cultures (as makers of meaning) have
  powerful influence on the experience of pain
• Morris, D Illness and Culture in the Postmodern
  Age 1999

22
The girl who cried pain.

• .women have better coping mechanisms than men
  for dealing with pain. Literature confirms.. a
  greater repertoire of coping skills to include,
  greater ability to verbally acknowledge and
  describe their pain, to seek health care
  intervention and to gain emotional support
• ..men in contrast are likely to ignore the pain
  or delay seeking treatment
• Hoffman, D The girl who cried pain. a bias
  against women in the treatment of pain J Law,
  Med, Ethics v29 2001

23
Fibromyalgia Circle of Care

• Fibromyalgia chronic pain condition
• (610 mil less than20 dx?5-8yr) ..neurological
  changes in patients pain perception with
  heightened sensitivity to stimuli
• Integrated multi-interventional collaborative
  (interactive media) between Johns Hopkins Schools
  of Medicine Nursing, National Fibromyalgia
  Association (NFA)
• Multiple points of access, resources and tools
• 3 educational initiatives
• patient education needs
• Provider/prescriber educational needs
• Appropriate multidisciplinary mgmt
• Business Wire 12/07

24
ER Research Results

• Large retrospective study across country (150,000
  ER
• visits in 13 yrs)
• Oligoanalgesia common in ERs (rural and urban)
• White patients more likely (31) to receive
  opioid for pain
• African Americans (23), Hispanic (24),
  Asians/other (28)
• less so
• Small study in Atlanta, GA
• Results - Black patients with isolated long bone
  fractures 66 less likely than whites to receive
  analgesia in ER (children included)
• Near identical explicit notations of pain in
  equal proportions noted
• Small numbers of minority MDs
• National Hospital Ambulatory Medical Care
  Survey
• JAMA 2008 v299 (1) 70-78

25
Race/Ethnic Influence on EOL Care

• Recent studies show EOL preferences vary
  significantly between different races/
  ethnicities and within defined groups (to include
  gender differences)
• Level of acculturation (movement towards
  mainstream) does not alter findings re cultural
  influences on EOL care and perceptions
• Duffy et al Racial/Ethnic/Sex Preferences and
  Perceived Discrimination re EOL Care JAGS 2006

26
Racial Disparity in Hospice Use

• Little known about differential access to hospice
• Racial and socioeconomic disparities not unique
  to US
• Countries with universal health insurance ? less
  health care disparities
• 1993 National study 23,000 decedents showed
  those less likely to use hospice
• African Americans
• Those without HCP or Living Will, without a
  cancer diagnosis
• Hospice use rates increased rapidly across US
• Caucasians 10 1992 ? 23 in 2000
• African Americans 5 in 1992 ? 18 in 2000
• More accepted, higher overall hospice usage in a
  state, the lower the racial disparity in its use
• OConnor, S Racial Disparity in Hospice Use
  Pall Med 2008

27
Racial/Ethnic/Sex Preferences and Perceived
Discrimination re EOL Care

• 2006 focus group (14) prospective survey
  obtained in-depth information on End of Life
  preferences
• Arab Muslims Arab Christians
• Hispanics
• Blacks
• Whites
• Duffy et al Racial/Ethnic/Sex Preferences and
  Perceived Discrimination re EOL Care JAGS
  2006

28
Preferences Findings

• Arab Americans against Assisted Suicide,
  extended life, NHs, telling bad news prefer home
  care by family, believe in making amends before
  death
• Most religious do not believe in extending life
• Arab Christians spirituality important
  non-disclosure also
• Hispanic males want death with dignity, good
  care, little medical intervention ? help w/AS
• Hispanic women want death with dignity,
  extensive medical intervention, CAM against
  AS/no F/T/no pull plug
• Reluctance to use hospice
• Duffy et al Racial/Ethnic/Sex Preferences
  and Perceived Discrimination re EOL Care
  JAGS 2006

29
Preferences Findings

• African Americans
• Men NH, Hospital OK not in favor of
  prolonging death not opposed to AS distrust
  doctors
• Women - NH, Hospital OK in favor of prolonging
  death opposed to AS feel black men
  discriminated against b/c of AIDS stigma
• Caucasians
• Men - want to know what to expect physically
  dont want family to give care for them want
  family near prefer to die at home - feel age
  discrimination
• Women - want to know what to expect physically
  want choices/own decisions feel Q important
  distrust Drs
• No pain no F/T prefer to die at home feel
  dying are discriminated against

30
Traditional Hispanic Beliefs

• Hispanic Americans may immigrate from Mexico,
  Cuba, Puerto Rico, Central America, and South
  America
• Most Hispanics place a great deal of value on
  family relations and are socialized to believe
  that the needs of the family are more important
  than ones own needs
• Emphasis on cooperation and sharing ? family is
• most important support system for its older
  members
• Acculturation to the American value system
• fewer people live in extended family households
• expectations of older Hispanics may remain unmet
• support systems may be less than optimal for
  older Hispanics suffering with pain

31
Traditional Hispanic Beliefs

• The world is inhabited by both good and evil
  spirits that may affect the individual in a
  positive and/or a negative way
• Mexican system of curanderismo Cuban system of
  santeria Puerto Rican system of espiritismo
  share beliefs related to special powers at work
  in the world
• these systems influence health beliefs and
  behaviors, such as the use of alternative
  medicine and belief in prayer for healing
• beliefs translate into a cultural attitude about
  the inevitability of death
• Hispanic culture generally accepts death as a
  part of the life cycle
• Rael Korte, 1988
• Talamantes, Gomez, Braun, 2000

32
Spirituality

• Hispanics rely heavily on spirituality to cope
  with the illness and death of a loved one
• Many Hispanics view life as a temporary gift from
  God
• Dia de los Muertos an example of this type of
  celebration
• the family goes to the cemetery to place food on
  the grave of deceased loved ones
• this practice honors the life of the deceased and
  brings the family together
• masses, religious services, and public
  announcements are often held on the anniversary
  of the death of a loved one
• these practices reinforce the view that death is
  part of the cycle of life
• Faith in God and the greater power of God helps
  them cope with illness and death and provides
  people of Hispanic culture with comfort during
  the grieving process
• Villa, 1991 Talamantes, Lawler, Espino, 1995

33
Language

• Language is part of the cultural expression of
  individuals
• Integral to individual constructions of reality
• Expressions of pain are not separate phenomena
  but part of the pain itself
• ..words are connected with the primitive, the
  natural expressions of the sensation and used in
  their place.
• A child hurts himself and he cries adults talk
  and teach him exclamations and, later, sentences.
  They teach the child new pain behavior.the
  verbal expression of pain replaces crying and
  does not describe it.
• Difficult due to abstract nature of pain, the
  sensation of which is privatethe expression of
  which is taught through public language and
  public behavior patterns
• Wittgenstein, L
  Philosophical Investigations 1967

34
Health Literacy

• ..ability to read, understand and effectively
  use basic medical instructions and info
• Strongest predictor of a persons health
• Average American reads at the 8th 9th grade
  level
• 90 mil have trouble understanding and acting on
  health care info
• Natl Pt Safety Fnd (PCHC) launched pilot? clear
  communications between patients and healthcare
  providers

35
Ask Me 3 Program

• Three simple questions patients should ask their
  providers
• What is my main problem?
• What do I need to do?
• Why is it important for me to do this?
• 2 research studies at Lutheran General Hospital
  ILLinterdisciplinary HLit task
• Statistically significant improvement in patient
  understanding, retention, compliance, decrease in
  readmission rate,
• increase in nurse confidence

36
High Context Cultures

• Promote collectivism, social duties, obligations
• Minimize individualism
• Promote family-centered rather than
  patient-centered decision-making
• Within ethnic groups and gender, there is likely
  to be considerable variation
• Role for spirituality and factors outside of
  medical interventions

37
Ethnic Variation on EOL Decision-Making

• Three primary areas of breakdown
• Communication of bad news
• Locus of decision-making
• Advance planning for terminal illness
• Participative decision-making and
  patient-provider trust needed
• Tendency exists to discount pain reports
• Higher trust, satisfaction with provider of same
  race
• Saha, Komaromy et al 1999

38
Cancer Pain Management in Underserved Minority
Outpatients

• ECOG 2002 study data and barriers identified
• 42 pts w/recurrent or metastatic CA treated
  inadequately for pain
• 59 Afr American74 Hispanics undertreated
• Care in institutions that serve primarily African
  American and Hispanics not optimal
• Patient-MD discrepancy in pain severity estimates
  (MD underestimated pain ?50)
• Attitudinal barriers (Patient and MD)
• Patient reluctance to report pain
• Anderson et al CA Pain Management among
  Underserved Minority Outpatients ACS 2002

39
CA Pain Study Format

• Goals
• Determine pain rx needs of socio-economically
  disadvantaged African Americans (59 -) and
  Hispanics (74 less than adequate WHO standards)
• Determine educational needs of minority cancer
  pain patients
• Assess attitudes of HCP who treat them
• Structured Interview national study in diverse
  settings
• English-Spanish Bilingual translations
• BPI Short Form - for pain and pain interference
  measurement
• Fisher exact test c/c differences African
  Americans and Hispanics demographics,
  disease-related, pain-related variables
• Documented severe under-treatment of pain
• 62 under-treated by WHO Standards vs
  non-minority pts
• Poor assessment top barrier ? discrepancies in
  pain severity ratings
• Pts can benefit from interventions and tools
  targeted specifically to minorities (dispel
  myths)
• 
  Anderson et al CA Pain Mgmt among
  Underserved Minority Outpatients ACS 2002

40
Meaning of Cancer and Pain

• African Americans
• Hurt 73
• Limited activity 27
• Impaired function
• Cancer due to 45 environment or lifestyle
  smoking
• Will of God 18
• Prayer important 83
• Severe Pain intensity 75
• Anderson et al CA Pain Mgmt

• Hispanic culture
• Physical and/or 53 emotional suffering
• Part of disease or sickness 18
• Cancer due to 27 environment or lifestyle
  smoking
• Nothing 12
• Will of God 29
• Prayer important 47
• Severe Pain intensity 75

41
Differences in Pain Sensitivity

• Measures of both experimental pain tolerance and
  chronic pain severity may tap an underlying
  construct such as pain sensitivity which differs
  across ethnic groups
• Differences in circulating beta-endorphins in
  response to stress for African American
  hyper-tensives demonstrated lower beta-endorphin
  levels
• Differences in pain-related endogenous opioid
  release could produce effects observed in several
  studies
• Edwards, C et al Race, Ethnicity and Pain Pain
  2001

42
Narrative

• I think of narrative as story telling that is,
  as a way of ordering events and thoughts in a
  coherent sequence that makes them interesting to
  listen to. It therefore has a strong oral
  heritage.. doesnt have to be strictly
  chronological.. it can include digressions,
  flashbacks, foreshadowings, just as a story
  around a campfire
• .. because narrative is powered by events, its
  goal is not analytical or critical- though, like
  many stories (esp. traditional genres
  folktales, fairy tales, fables), it can contain
  substantial moral lessons
• Anne
  Fadiman The Spirit Catches You and You Fall
  Down

43
Narrative Its Role in Medicine

• Clinical narratives, stories of therapeutic
  activities created by physicians for and with
  patients, about disease and treatment course
• Cross cultural relevance in comparative studies
  of MD-patient relationship
• Delvecchio, Mary J Clinical Narratives
  Study of Contemporary MD-Patient
  Relationships.
• Careful listening
• Parallel Charts -
• Rita Charron When Medicine Meets Literature
  Scientific American
• Pain Narrative -

44
Explanatory Model Arthur Kleinman

• To understand others, ask what, why, how and
  who questions
• What do you call the problem?
• What do you think the illness does?
• What do you fear?
• Why do you think this illness/pain has occurred?
• How do you think it should be treated
• How do you want us to help you?
• Who do you turn to for help?
• Who should be involved in decision making?
• Hallenbeck, J Fast Fact 026 www.eperc.mcw.edu

45
Cultural Competency

• Goal - Culturally Sex-Sensitive EOL Care
• Educate re differences to guide practice
• Recognize diverse views within families, IDT and
  wider communities
• Self-awareness re personal biases
• Avoid generalization and stereotype groups
• Recruit more minority HCP
• Develop/distribute targeted educational tools
• Introduce community leaders and healers to
  palliative care/hospice/IDT

46
Complimentary and Alternative Medicine

• Diverse group of healing systems, practices, and
  products not part of conventional medicine
• Acupuncture/pressure Massage
• Energy FieldsReiki Therapeutic Touch
• Meditation Hypnosis Yoga
• Herbal therapies Nutrition
• Prayer Guided imagery Music Art
• Exercise

47
Research and other Opportunities

• Include more minorities in research
• Use same measures across racial groups
• Id potential interactions bet. ethnic group
  membership and other important variables, e.g.
  gender or age, known to influence pain responses
• _______________________________________
• Reciprocal referrals/collaboration
• Id key community leaders
• Use community health workers as connectors
• Provide referrals to key clergy
• Consult with/integrate traditional healers in to
  IDT

48
Physician Practices

• Mechanisms likely to influence physician
  judgments
• Prejudice against minorities (generalized
  negative affect and attitudes toward a given
  minority group)
• Greater uncertainty when making judgments
  regarding minorities
• Stereotypes (generalized group-level beliefs)
  held by the provider about minorities
• Time pressures and resource constraints
• Empirical evidence re role of stereotypes only
  suggestive
• May not assess patient wishes ? patient may
  refuse invasive procedures
• Studies showed differences in prescribing as a
  function of provider gender and patient race
• IOM 2002

49
A Reasonable Goal of Medicine

• A peaceful death
• One neither hastened nor prolonged
• One not deformed by technology
• One without unnecessary suffering
• Daniel Callahan
• Hastings Institute