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Compassionate Care
Compassionate Care in a Medical Home
- Concern for the well-being of the child or youth and
family is expressed and demonstrated in verbal and nonverbalinteractions.
- Efforts are made to understand and empathize with the
feelings and perspectives of the family as well as the
child or youth. 1
“A physician committed to healing cannot focus exclusively
on a patient’s chief complaint, but must attend to
the stressful aspects of the patient’s life as well.
To the patient, this says the doctor is interested in them
as person, not as an immediate problem to solve."
From "the Lost Art of Healing: Practicing Compassion
in Medicine," Bernard Lown, MD.
Patient: That specialist you
sent me to is probably a pretty good doctor, but you can’t
talk to him.
Physician: What do you mean?
Patient: Well, he just didn't seem interested in
what I had to tell him. He might know about kidneys but
he didn't’t want to know what I was worried about.
From "Tell Me about Yourself:
The Patient-Centered Interview" - Annals of Internal
Medicine
"Andy has always been there for us. Whether taking
daily phone calls, whether being second-guessed, whether
handling a hysterical mother, or just getting him to cooperate
when he didn't want to anymore, Andy was there and made
things bearable."
From "Being there makes things
bearable" - On Call Magazine - June/July 2004
Information for
Families
". . . whose compassionate care sustained us
. . ."
The following is part of the PACER Center publication, Working
with Doctors, by Carolyn Allshouse: This publication was
created to help parents whose children have disabilities
ad special health care needs effectively advocate for their
children in the health system. The focus of the book is
on communication skills with medical professionals and maintaining
accurate records. Working with Doctors is free to Minnesota
families and can be purchased at a cost of $8.00.
To obtain a copy of this publication or get more information
about PACER Center and other PACER publications please contact
PACER Center at:
Pacer Center
8161 Normandale Boulevard
Minneapolis, MN 55437
Phone: 952-838-9000
Web site:
www.pacer.org
Teaching Compassion
Fuller LE. (1993). A Piece of My Mind: Primary Caring.
Journal of the American Medical Association. 270:1033
Klein EJ, Jackson, JC, Kratz, L, Marcuse EK., McPhillips
HA., Shugerman RP., Watkins, S., Stapleton, FB (2003). Teaching
professionalism to residents. Academic Medicine,
78(1): 26-34
Jarski RW, Gjerde CL, Bratton BD, Brown DD, Matthes SS.
(1985). A comparison of four empathy instruments in simulated
patient-medical student interactions. J Med Educ.
Jul;60(7):545-51
Seaberg DC, Godwin SA, Perry SJ (2000). Teaching patient
empathy: the ED visit program. Academic Emergency Medicine
7(12): 1433-6
Resources
Buckman, R. How
to Break Bad News - A Guide for Health Care Professionals
Johns Hopkins University Press. Baltimore, Maryland.
Welsby, P D.Communication
Skills in the Medical Interview. Consultant in Infectious
Diseases
Head of Communication Studies for Third Year Edinburgh medical
students.
 "When I was a third-year medical student doing
my pediatric rotation, I was walking down the hospital corridor
with my intern one night, making rounds on the recent admissions.
He stopped at the door of a patient who I knew was not on
our service, but he said, `I need to see this patient and
her family. I know them because she has been here several
times this year.' When we walked into the room, I saw a
seven-year-old girl lying on a bed. She was breathing the
loud, liquid breaths I would come to know as the death rattle.
Her skin was brilliant yellow, her abdomen massively swollen
from the Wilms' tumor that was killing her. She had no hair
— the effects of her many bouts of chemotherapy —
and her limbs were stick-thin. With her were her parents
and both sets of grandparents. When we walked in, her mother
stood up. My intern walked over to her and put his arms
around her, and they stood, silently, holding each other.
After a few minutes, the mother stepped back and, looking
at her daughter, at the unbearable scene before her, said,
`You know, I never thought I would want her to die, but
I want her to die. Somehow, when they said there was nothing
more they could do, I pictured her in a field of flowers
and she'd just be gone. I never thought it would be like
this.'" The students sit quietly, listening. I continue.
"My intern taught me a profoundly important lesson
that night. Many doctors would have walked by that door
because everything had been done. The diagnosis had been
made, the correct treatment given, the complications appropriately
treated, and now the girl was dying and there was nothing
more to do. What my intern taught me that night was that
there was one more thing to do — to go into that room
and offer whatever comfort his care and concern could bring,
to bear witness to the pain of that family. In the end,
it was as important as anything else that had been done
for that child. In the long years ahead, if you asked the
mother what she remembered of that time, I suspect that
one memory would be of my intern holding her. The lesson
he taught me was that in the practice of medicine, the person
you are is as important as what you know."
Supplement to Treadway K. Notes to the Class — First
Day. N Engl J Med 2005;352(19):1943-44. http://content.nejm.org/cgi/content/full/352/19/1943/DC1
to Download Full Text or Audio Interview.
Johanna Shapiro and Lloyd Rucker claim that
doctor’s experience different emotions when faced
with the same scenario in a film compared with in a clinical
setting. "It is unfortunate that the very qualities
of empathy and altruism that patients long for in their
physicians may be more readily manifested in the darkness
of the movie theatre than under the bright lights of the
exam room," say the authors. For more information on
this article go to: http://bmj.com/cgi/content/full/330/7484/166-c?ecoll
Mothers of Children With Down Syndrome Reflect
on Their Postnatal Support
Objective: Since 1964, researchers have
been examining the ways in which physicians deliver a
postnatal diagnosis of Down syndrome (DS). Almost all
of the studies, however, have been limited to reflections
or very small sample sizes. The objective of this study
was to document, in the most robust comprehensive way,
the reflections of mothers in the United States who received
diagnoses of DS for their children.
The article addresses: delivering the diagnosis; the
timing of the news; the communicator; the setting and
the language used. Mothers have called on physicians to
improve the way in which postnatal diagnoses are delivered.
Specific recommendations are offered for Health Care Professionals:
First, the person to deliver the news should be a physician.
Second, OB's need to coordinate their messages with neonatologists
and pediatricians.
Third, the news should be delivered once the mother is
settled and as soon as a physician suspects the diagnosis
Fourth, whenever possible, the physician should make the
announcement with both parents present, in a private setting.
Fifth, when delivering the news about DS, the physician
should first congratulate the parents on the birth of
their child and should not forget to talk about the positive
aspects of DS.
Sixth, health care professionals should keep their personal
opinions to themselves.
Seventh, mothers should be provided with up-to-date printed
materials.
For additional information on this article, please click
the link below.
Skotko B. Mothers
of Children With Down Syndrome Reflect on Their Postnatal
Support. Pediatrics. 2005;115(1):64-77
Compassion
101
This ABC News videotape looks at a Harvard Medical School
course, " Living with Life-Threatening Illnesses ",
in which future doctors learn how to compassionately treat
people with serious health problems. Originally broadcast
on July 18, 2001.
Words
That Make A Difference - " Tell Me about Yourself":
The Patient-Centered Interview
The following article initiates a series on "Words
That Make a Difference." Developed under the sponsorship
of the American Academy on Physician and Patient, the series
will focus on the language physicians use when they talk
with patients. Although clinicians understand how important
it is to communicate effectively with patients, they often
have difficulty knowing exactly what the "best words"
are for making the most of each patient interaction. Drawing
on careful observation and research results, the authors
of this series of articles have identified words and expressions
that have proven particularly powerful as tools for understanding
patients and helping them manage their illnesses effectively.
We are interested in knowing what readers think of the series,
and in learning about other uses of language that readers
have found important and helpful.
How
do physicians teach empathy in the primary care setting?
Shapiro J. Department of Family Medicine, College of
Medicine, University of
California-Irvine, 101 City Drive South, Orange, CA 92868-3298,
USA.
Art of Doctoring is a small group experience to enhance
the physician-patient relationship, expand students' communication
skills, and provide strategies to promote compassion and
empathy as core physician values. The class uses self-reflective
practices, role-modeling, readings, and case-based problem
solving discussion.
Learning Objectives:
Understand the usefulness of reflection and imaginative
perspectives in a) cultivating compassion and empathy
for patients, patients' family members, peers, self, and
others b) developing insight into how best to convey compassion
and caring in the doctor-patient relationship.
Be able to identify and assimilate compassionate attitudes
and behaviors modeled by others.
Know how to use mindfulness and other re-centering techniques
to maintain an attitude of compassion in difficult and
stressful situations.
Know how to use reflective writing and other humanities-based
techniques to develop and maintain compassion and empathy.
Implement these strategies to enhance physician-patient
communication and improve patient care.
Implement strategies to promote self-awareness and to
enhance their own career satisfaction.
Every Child Deserves a Medical Home Training
Curriculum - Family-Professional
Partnerships Component
Learning Objectives:
Promote family-professional partnerships as a natural
part of establishing a medical home.
Understand family-centered care.
Define 9 elements of family-centered care.
Identify applications for applying family-centered elements
in daily practice.
Web sites/Organizations
American Academy of Pediatrics Department of Community Pediatrics
web site on culturally effective pediatric care. You
can access the web page on culturally effective pediatric
care by going to www.aap.org/commpeds/cepc
This web page provides general information about culturally
effective pediatric care and specific information, such
as related Academy Policy Statements and projects supported
by the Department of Community Pediatrics. The following
are the components of the web page:
- Facts & Figures - Changes in Child Demographics
- The Need - Background Information on the Need for Culturally
Effective Pediatric Care
- Policy Statements - AAP Policy Statements Related to
Culturally Effective Pediatric Care
- Community Projects - Projects Supported by Department
of Community Pediatrics
- General Resources - Related Organizations, Publications,
& Reports
Cross Cultural Health Care Program: www.xculture.org/
Recognizing the diversity and the different ways to health,
the mission of the Cross Cultural Health Care Program is
to serve as a bridge between communities and health care
institutions to ensure full access to quality health care
that is culturally and linguistically appropriate.
Designs for Change: www.designsforchange.org/
Designs for Change (DFC) is a 23-year-old, multi-racial,
educational research and reform organization.
Diversity Rx: www.diversityrx.org/
Diversity Rx is a clearinghouse of information on how to
meet the language and cultural needs of minorities, immigrants,
refugees and other diverse populations seeking health care.
Exceptional Parent: www.eparent.com
Exceptional Parent Magazine's online resource. Continuing
30 award winning years of providing information, support,
ideas, encouragement and outreach for parents and families
of children with disabilities and the professionals who
work with them.
Family T.I.E.S. Network:
www.taalliance.org/centers/index.htm
Committed to working on behalf of infants, children and
youth with disabilities and their families. Family T.I.E.S.
Network's Regional Support Centers will provide outreach
to parents in all communities, offering a flexible and spontaneous
system of support and training that is family focused, culturally
competent, individualized and personalized.
The Family Village: www.familyvillage.wisc.edu/
A global community that integrates information, resources,
and communication opportunities on the Internet for persons
with cognitive and other disabilities, for their families,
and for those that provide them services and support. Our
community includes informational resources on specific diagnoses,
communication connections, adaptive products and technology,
adaptive recreational aAugust 8, 2008 issues, disability-related media and literature, and much,
much more!
Federation for Children with Special Needs: www.fcsn.org
The Mission of the Federation for Children with Special
Needs is to provide information, support, and assistance
to parents of children with disabilities, their professional
partners, and their communities.
Institute for Child Health Policy: www.ichp.ufl.edu/
The Institute for Child Health Policy focuses its attention
on issues of access, utilization, cost, quality and family
involvement in both their policy and program development
and health services research.
The Kid's Domain: www.kidsdomain.com/
Kids Domain is a kid-oriented site, with fun stuff for kids
to make, do and see. Kids, parents, caregivers and educators
will all find items of interest here.
Maternal and Child Health Bureau:
www.mchb.hrsa.gov/
Maternal and Child Health Bureau provides leadership,
partnership, and resources to advance the health of all
mothers, infants, children and adolescents-including families
with low income levels, those with diverse racial and ethnic
heritages and those living in rural or isolated areas without
access to care.
National Association for Hospitals and Related Institutions:
www.childrenshospitals.net
NACHRI is a not-for-profit membership organization of children's
hospitals, large pediatric units of medical centers and
related health systems, including those that specialize
in rehabilitative care of children with serious chronic
or congenital illnesses.
National Center for Cultural Competence:
gucchd.georgetown.edu//nccc/
August 8, 2008petence
(NCCC) is to increase the capacity of health care and mental
health programs to design, implement and evaluate culturally
and linguistically competent service delivery systems.
National Parent Information Network (NPIN): npin.org/
The National Parent Information Network (NPIN) is a project
of the ERIC system, which is administered by the National
Library of Education in the U.S. Department of Education.
NPIN is designed and maintained by two ERIC clearinghouses:
the ERIC Clearinghouse on Urban Education at Teachers College,
Columbia University, New York City; and the ERIC Clearinghouse
on Elementary and Early Childhood Education at the University
of Illinois at Urbana-Champaign.
Office of Minority Health Resource Center (OMHRC)
www.omhrc.gov/
The Office of Minority Health (OMH) established
the Office of Minority Health Resource Center (OMHRC) to
meet the public's need for reliable, accurate, and timely
information and technical assistance on issues affecting
the health of minority populations. Since that time, OMHRC
has grown to become one of the nation's largest sources
of minority health information. Some of OMHRC's services
include referrals, publications, reference information,
and access to its resource person's network -- a database
of minority health professionals from across the country.
Our-Kids: www.our-kids.org/
Our-Kids is a "Family" of parents, caregivers and others
who are working with children with physical and/or mental
disabilities and delays. Our-Kids provides an e-mail list
for caregivers of children with special needs to provide
support and information.
Special Families Guide: www.specialfamilies.com/
Children with special needs can be endearing, lovable, and
extremely challenging. On this site, psychologist, author,
and parent Robert Naseef, Ph.D., shares his insights and
experiences on family life for parents, siblings, and children
with special needs. Autism, developmental disabilities,
cerebral palsy, learning disorders, special healthcare needs,
and many other conditions are discussed--with a focus on
the special needs of families and emphasizing the role of
fathers.
1. The medical home. Pediatrics. 2002;
110: 184-186
Last Updated
August 8, 2008
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