Communication

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Communication

• an introduction to barriers and solutions

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What Is Communication?

• "the transmission of information, thoughts, and
  feelings so that they are satisfactorily received
  or understood

Gerteis M, Edgman-Levitan S, Daley J, et al.
(eds). Through the Patients Eyes Understanding
and Promoting Patient Centered Care. 1993 San
Francisco Jossey-Bass. Available
online http//www.arhp.org/healthcareproviders/on
linepublications/QRGPACC.cfm
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Communication and Quality Care

• For me, quality care is knowing that the
  provider is really good technically and also
  willing to take the time to communicate with me
  and explain what's happening every step of the
  way. Sometimes you get one and not the other.
  If you get both together, that's perfect!
• Marta Redding

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Goals of Communication in the Health Care Setting

• Identify and respect preferences, needs, and
  values
• Elicit complete information
• Demonstrate compassion and understanding
• Ensure therapeutic goals correspond with desires
• Transmit technical information in lay terminology
• Enhance overall comfort with health care
  experience

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Communication with Women with Disabilities Often
Falls Short

• Indicate higher rates of dissatisfaction with
  health care
• More than 13 do not discuss concerns

Iezzoni LI, Davis RB, Soukup, O'Day B. (2003).
Quality dimensions that most concern people with
physical and sensory disabilities. Archives of
Internal Medicine, 1632085-2092.
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How Can We Do Better?

• Identify and examine roadblocks
• Provider barriers
• Patient barriers
• Structural barriers
• Develop and implement solutions
• Attitude, knowledge, skills
• Systems improvement

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Communication Roadblocks

• Provider barriers
• Patient barriers
• Structural barriers

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Provider Barriers
Attitude A providers attitudes about disability
can negatively impact the womans health care
experience
Veltman A, Stewart D, Tardif G, Branifan, M.
Perceptions of Primary Healthcare Services Among
People with Physical Disabilities. Part 1 Access
Issues. Medscape General Medicine 2001 Volume 3,
Number 2.
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AttitudeQuality of Life

• The neurosurgeon told me that he was only
  interested in quality of life and that in no way
  would he be looking to prolong my life if he
  didn't feel the quality would be acceptable.
  However, neither he nor anyone else has asked me
  what criteria I would use in judging what was an
  acceptable quality of life. I am very worried
  that if I get admitted unconscious or without the
  power of speech, he will make a decision based on
  his judgment and his criteria about what is an
  acceptable quality of life.

Iezzoni L, ODay, B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Chapter 6, page 99.
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AttitudeAutonomy

• One of my clinicians wouldnt explain anything
  to me. To him everything's so visual and Im
  blind. He couldn't understand how I could
  conceive of what he was trying to tell me. When
  I talked to him, he'd say, Well, that's
  complicated. And I'd say, You know, I'm pretty
  smart. You could try to explain it to me. After
  I convince him, he finally explains things to me,
  and it's fine.

Iezzoni L, ODay, B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Chapter 8, page
144.
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AttitudePain
I had a horrible experience when I needed to
have a mole removed from my leg. The provider
just went ahead and started the procedure without
giving me any anesthetic. When I complained that
it hurt, he said It cant hurt youre
paraplegic, you cant feel anything below your
waist. Health professionals are often ignorant
about this and treat me as though my pain isnt
real.
Miaskowski C. The Role of Sex and Gender in Pain
Perception and Responses to Treatment, in R.J.
Gatchel and D.C. Turk, eds. Psychosocial Factors
in Pain Critical Perspectives (New York The
Guildford Press, 1999) 401411, at 406.
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AttitudePain

• If there is a single experience shared by
  virtually all chronic pain patients it is that at
  some point those around them chiefly
  practitioners, but also at times family members
  come to question the authenticity of the
  patient's experiences of pain. This response
  contributes powerfully to patients'
  dissatisfaction with the professional treatment
  system and to their search for alternatives. ...
  Reciprocally, chronic pain patients are the bête
  noire of many health professionals, who come to
  find them excessively demanding, hostile, and
  undermining of care. A duet of escalating
  antagonism ensues, much to the detriment of the
  protagonists.

Kleinman A. The Illness Narratives. New York
Basic Books, 1988, page 57.
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AttitudePsychiatric Disability

• Telling a clinician about my psychiatric
  disability is really importantfor good
  communication, to guard against interactions
  between psychotropic and other medications, and
  other treatment. You need to be honest and not
  hide a fact because youre embarrassed or too
  anxious. But once a provider finds out I have a
  psychiatric disability, he questions my judgment
  on all kinds of things and wonders whether Im
  reporting things accurately. Its not a
  relationship of trust, and thats the thing
  thats so frustrating is that you just have to go
  through people. Its traumatic. It means having
  to shop again and having to shop again, and
  having to confront the clinician and say, Youre
  not really listening.

Privileges to Rights People Labeled with
Psychiatric Disabilities Speak for Themselves.
National Council on Disability January 20, 2000.
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Provider Barriers

• Knowledge
• Women with disabilities want providers with
  basic knowledgeand who are willing to admit
  when they dont know
• Medical schools offer little training

Breaking Down Barriers to Health Care for Women
with Disabilities a White Paper from a National
Summit, December 2004. U.S. Department of Health
and Human Services, Office on Disability, Office
on Womens Health. Available online http//www.hh
s.gov/od/summit/whitepaper.doc
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KnowledgeThe Disability Experience

• I love my provider dearly, but she doesn't know
  a lot about spinal cord injury. One time my
  shoulders were really hurting. So she told me,
  Don't use your arms so much. I'm a paraplegic,
  and all I have is my arms! I do everything with
  them. I told her she was absurd to say something
  like that to me.

Iezzoni L, ODay B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Chapter 6 page
106-107.
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KnowledgeSpecific Health Care Needs

• I always have to keep reminding my provider
  about certain things that need to be checked
  because of my MS, like my thyroid. When I first
  went to my new primary care provider, I asked
  what he knew about MS and he said, Well, not
  much, but I'll find out. I don't think he knows
  very much.

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KnowledgeSpecific Health Care Needs

• I was born with my disabilities. I'm 25 years
  old. I've been going to the hospital for
  children my whole life, and I was nervous to
  switch over. A couple of appointments with adult
  providers didn't go so well, so I'm thinking, Why
  did I do this?...I felt the clinicians had very
  little knowledge. A couple of my concerns had to
  do with urological issues and catheterization. I
  needed to do a lot of explaining, but I didn't
  think it was necessary to explain things to the
  provider! That in itself made me uneasy. I've
  had excellent care my whole life. Now I'm
  throwing all my trust into people whom I don't
  know that I do trust. Now I go to each provider
  thinking, Do I have to educate them from day one
  about everything?"

Iezzoni L, ODay B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Chapter 8, page
140.
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KnowledgeSpecific Communication Needs

• In my work as an ASL interpreter in a health
  care setting, I often encounter health
  professionals who are unfamiliar with sign
  language interpreting. Some of them take the time
  to orient themselves and end up communicating
  well with the patient. Others barrel on ahead and
  make all kinds of mistakes that lead to
  misunderstandings, lack of completeness, and
  patient dissatisfaction.

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Provider Barriers

• Skill
• Issues specific to women with disabilities can
  get lost in the larger picture

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Skills

• Listening
• Asking questions
• Developing co-expert model of care
• Use of proper etiquette
• Incorporating communication aids
• Handling frustration

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Patient Barriers
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Patient Barriers
Negative Prior Experiences
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Impact of Negative ExperiencesInternalized
Oppression

• Negative societal attitudes about disability

Padilla M. But Youre Not a Dirty Mexican"
Internalized Oppression, Latinos Law , 7 Texas
Hispanic Journal of Law and Policy 61-113, 65-73
(Fall 2001) http//academic.udayton.edu/race/01rac
e/latinos01.htm
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Flight Response
Distrust and disappointment
Failure to disclose key information Poor
adherence to treatment recommendations Avoidance
of care altogether
Incomplete or inappropriate care Poor health
outcomes
Steinberg AG, Wiggins EA, Barmada CH, Sullivan
VJ. Deaf women experiences and perceptions of
healthcare system access. J Women's Health
(Larchmt). 2002 Oct11(8)729-741.
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Fight Response
Distrust and disappointment
Demanding or angry manner Alienation of health
care personnel
Incomplete or inappropriate care Poor health
outcomes
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Ideal Model of Care

• Provider and woman become co-experts
• Provider offers medical / technical expertise
• Woman brings intimate knowledge about her body
  and its needs
• Negotiate a shared agenda together
• Short-term goals (each visit)
• Longer-term goals (future visits, roadmap for
  health)
• Anticipate frustrations and lay a groundwork for
  working them out

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Structural Barriers

• Time
• Cost
• Provider gatekeeper role

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Increased Time Is Needed

• To provide assistance
• To communicate
• To complete forms
• To coordinate care
• To research

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Cost

• More costly to care for women with disabilities,
  due to
• Interpreter fees
• Equipment purchases
• Additional staff costs
• Decreased productivity

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Gatekeeper RoleProviders Control Access to

• Medical services
• Independent living and community services

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Gatekeeper Role Impact

• Access to services affects ability to live
  independently
• Restricted access results in lower level of
  functioning and lower quality of life
• Women may feel angry and resentful when provider
  refuses requests
• Women appreciate advocacy efforts on their behalf

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Finding Solutions
Strategies to Enhance Communication
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Identify Personal Biases

• Its important to identify and address our
  beliefs so they dont interfere with care. When I
  first started working with women with
  disabilities, I got called on use of language
  like wheelchair-bound, instead of using a
  wheelchair. This choice of language reflected an
  unconscious bias that people with disabilities
  lead lives that are limited and trapped. I also
  noticed that I dumbed down my language when
  talking with people who were blind or deaf, as
  though having a disability automatically meant
  they werent smart enough to understand normal
  conversation.

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Examine and Debunk Common Myths

• Do not have non-disability-related health
  problems
• Have no sexual feelings/arousal and are not
  sexually active
• Are promiscuous if their disability is
  psychiatric
• Are trouble makers if they speak out or complain
• Dont know their own health needs if their
  disability is psychiatric
• Are dangerous if their disability is psychiatric

• Women with disabilities
• Are angry and bitter
• Are unable to live independently
• Are passive and in need of care
• Are unable to speak on their own behalf or
  understand what is said
• Are unable to get exercise or eat properly
• Are not victims of domestic violence or rape
• Are disinterested in or unable to parent

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Learn About the Disability Experience

• National Disability Council
• http//www.ncd.gov/brochure.htm
• Social Security Disability
• http//www.socialsecurity.gov/disability
• Federal Disability Web Portal
• http//www.disabilityinfo.gov
• Disability Resources
• http//www.disabilityresources.org
• Memoirs of the Disability Experience
• http//katrinadisability.info/disabilitybooks.html
  
• Academic journals and other media
• http//www.uic.edu/orgs/sds/links.htmlmedia

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Learn About Disability-Specific Health Needs

• Ask!
• Women with disabilities often know their bodies
  and are experts about their own needs
• Research disease-specific needs
• Read, consult, etc.

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Learn About Disability-Specific Communication
Needs and Methods

• See module Communicating Using Interpreters and
  Communication Aids

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Attend to CommunicationConsciously and
Continuously

• Good communication increases patient satisfaction
• Correlation between effective communication and
  improved health outcomes have been documented

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Communication Begins Before a Woman Arrives at
the Office and Continues After Her Visit

• Smooth and successful communication must include
  discussion of
• Womans access to the office
• Care while in the office
• Continuity of follow-up care after leaving the
  office

ASTHO (Association of State Territorial Health
Officials, Washington, DC) Fact Sheet Access to
Preventive Health Care Services for Women with
Disabilities. Available online
at http//www.astho.org/pubs/WomenwithDisabilitie
sFactSheet2.pdf
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Before the Visit

• Make sure office is in compliance with ADA
  requirements regarding accessibility
• Review ADA requirements regarding availability of
  interpreter, etc.
• Make sure office staff is adequately trained
  (etiquette, transfers, etc.)
• Set up a protocol to communicate with the woman
  BEFORE the visit to determine needs and plan
  appropriate response

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Transportation Needs

• Directions from bus stop, etc.
• Instructions re accessible parking
• Assistance with paratransit services

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Communication Needs

• Sign language interpreters
• Use of other communication devices that require
  extra space or expertise

American Medical Association, available online
http//www.ama-assn.org/ama/pub/category/4616.html
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Other Needs

• Appropriate area in waiting room to accommodate
  special equipment or needs
• Transfers to and from examination equipment that
  require assistance
• Need for larger exam room or accessible exam
  table
• Assistance completing medical forms

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During the Visit

• Create a conducive atmosphere
• Explicitly discuss each team members role in
  care
• Use proper etiquette when working with
  interpreters or personal care assistants
• Obtain a complete health history
• Communicate appropriately during the examination
• Provide pertinent counseling

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Create a Conducive Atmosphere

• Welcoming environment
• Non-verbal cues
• Posted non-discrimination policy
• Appropriate educational materials on display

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Explicitly Discuss Role of Each Team Member in
Care

• Provider
• Woman
• Office personnel
• Interpreter
• Personal care assistant

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Office Staff

• Help create and maintain a safe and efficient
  process of care
• Guide a woman who is blind or has low vision to
  the examination room
• Ensure safe transfer on and off of examination
  equipment
• Complete medical forms for those who do not read
  print
• Provide other assistance as requested

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Sign Language Interpreter

• Facilitates communication with a woman who is
  deaf
• Translates what you say word-for-word into sign
  language and what the woman who is deaf says back
  into spoken English
• See Communicating Using Interpreters and
  Communication Aids for more information

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Personal Care Assistant

• Assists the woman to complete physical or
  cognitive tasks
• Communicates directly to the woman
• Does not speak for the woman

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Use Proper Etiquette

• When working with an interpreter
• When working with personal care assistants
• When a woman has a service animal

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Etiquette with Interpreter

• Decide where everyone will sit or stand to
  maximize communication and comfort
• Maintain eye contact with the woman who is deaf,
  noting facial communication and other physical
  cues
• Speak directly to the woman who is deaf, not to
  the interpreter

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Etiquette with Interpreter

• When I'm there with a Sign Language interpreter,
  the nurse always looks at the interpreter. It's
  hard for me to get eye contact. But I'm the
  patient. I don't want them speaking to me in the
  third person. I want them to speak directly to
  me. Don't refer to me as she. I feel ignored
  when they do that. It's confusing and
  frustrating.

Iezzoni, L. ODay, B. More than Ramps
Improving Health Care Quality for People with
Disabilities. Oxford University Press,
2006. Chapter 6 page 103.
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Etiquette with Personal Assistants

• Speak directly to the woman
• Negotiate time alone
• Ask the woman if she wants her personal assistant
  to be present during physical exam

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Etiquette with Service Animals

• Don't pet, call out, or otherwise distract a
  working Guide Dog. A Guide Dog in harness is "on
  duty, even when sitting or lying down.
• Some Guide Dog handlers may allow petting, but
  ask first.
• Don't feed a Guide Dog.
• Never grab the harness or leash from the
  handler.
• Allow the team to follow you or offer other
  assistance never tell the dog to follow you.

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Obtain a Complete Health History

• Focus on symptoms of concern to the woman
• Obtain her complete health history as one would
  do with ANY patient

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Emphasize Prevention and Wellness

• Educate women with disabilities about
• specific health topics, such as the need for
• screening, prevention, and wellness
• services.

Iezzoni L, ODay B. More than Ramps Improving
Health Care Quality for People with Disabilities.
Oxford University Press, 2006. Recommendations,
page 31.
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Avoid Making Assumptions
Example Sexual Activity

• My clinician said You dont want birth
  control youre visually impaired! Whats that
  got to do with it? Everybodys got a life. Blind
  people do just as much in that area as sighted
  people. I dont just stay at home and sit in a
  rocker!

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Ask Pertinent Questions
Example Screening for Abuse

• For a woman with a disability who is being
  abused, the perpetrator is often the very person
  she relies on to provide care when she is
  vulnerable. She may, therefore, be reluctant to
  report the abuse. The abuse may take the form of
  violence or rape, but often includes more subtle
  forms as well, such as withholding care or
  medications. Women are more likely to divulge
  abuse when they are asked pertinent questions in
  private.
• Has anyone you depend on ever refused to help
  you with?

Nosek M, Howland C. Abuse and Women with
Disabilities. Pennsylvania Coalition Against
Domestic Violence the National Resource Center
on Domestic Violence. Available online
http//www.vawnet.org/DomesticViolence/Research/VA
WnetDocs/AR_disab.php
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Review Disability-Specific Needs in Detail

• Medical issues
• Example skin care in a woman with paraplegia
• Functional issues
• Example mobility assessment in a woman with
  progressive lower extremity weakness
• Social issues
• Availability of needed services and support

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Communicate Appropriately During the Physical Exam

• Goals
• Facilitate full awareness and cooperation of the
  woman
• Maintain the womans sense of control

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Describe Office Procedures Before They Are
Performed

• Explain what needs to be done and why
• Use simple language (cognitive disabilities)
• Allow the woman to see or touch the instruments
  if she desires
• Ask women with physical disabilities how it will
  be easiest to perform the exam
• Tell women who are blind when and where you are
  going to touch before beginning
• Obtain consent prior to proceeding

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Involve Women in Treatment Decisions

• Review options
• Decide together which one(s) to pursue

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Assessing Competence

• Women are presumed to be competent and the burden
  of proving otherwise rests on those who would
  overturn the womans decisions.
• A balance exists between autonomy and
  self-determination on the one side, with the
  protection of incompetent women from potential
  harm on the other.
• Serious mental illness, a learning disability, or
  cognitive impairment per se does not render a
  woman incompetent to provide informed consent.

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Assessing a Womans Decision-Making Capacity

• Should be defined by functional deficits (due to
  mental illness, mental retardation, or other
  mental conditions) judged to be sufficiently
  great that the woman currently cannot meet the
  demand of a specific decision-making situation,
  weighed in the light of its potential
  consequences.

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Determining Informed Consent

• Consider the 4 Cs
• Conscious
• Capable of making a choice
• Comprehension
• Communication
• Contact the National Association of Developmental
• Disability Councils for State-by-State laws at
• http//www.nacdd.org.

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Choosing a Proxy Decision Maker

• The role of the Proxy, as chosen by the woman
  herself whenever possible, is to explain and
  assist in the decision-making process.

Grisso T, Appelbaum P. Assessing Competence to
Consent to Treatment. Oxford University Press,
1998.
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Recommendations Should Be Pertinent, Feasible,
and Safe

• Consider cognitive level and physical ability
• Consider convenience factors
• Consider safety

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From Gatekeeper to Advocate

• Serve as advocate for woman
• Mediate between woman and managed care
  organization
• Provide appropriate referrals to accessible and
  culturally competent resources
• Know how to write prescriptions that will be
  approved
• Say no to requests you feel are unjustified

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Communicate Explicitly AboutFollow-up Care

• Discuss the action steps each partner will take
  to ensure that appropriate follow-up occurs
• Review how test results and other follow-up will
  be communicated

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Systems Improvements

• Creative scheduling
• One-stop shopping, if possible
• At a time of light scheduling and maximum
  staffing
• Use of electronic communication
• Future directions videoconferencing

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Resources for Providers

• http//www.4woman.gov/wwd/healthcare.cfm?stylemod
  ule
• http//www.4woman.gov/wwd/laws.cfm?stylemodule
• http//www.wid.org/publications/
• http//www.hhs.gov/od/summit/JThierry.doc

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Ending Slide

• Creating more universally usable health care
  environments
• and services benefits all your customers,
  including those
• patients with disabilities. Knowledge of
  existing codes and
• standards serves as a starting point in meeting
  accessibility
• guidelines. Going beyond accessibility requires
  a
• partnership with your patients with
  disabilities. By creating a
• team, you can meet the intent of the law and
  foster an
• atmosphere that welcomes everyone into your
  health
• care facility.
• Removing Barriers to Health Care a Guide for
  Health Professionals online http//origin.cdc.gov
  /ncbddd/women/links/removebarriers.htm

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