1. PATIENTS
AS
PARTNERS
There’s growing recognition of the he concept of patients as partners in their own
need to integrate patients and families
into care planning and delivery.
By Joanna Kaufman, RN, MS
T care isn’t new. Adopting the guiding principle of
“nothing about me without me,” participants at
a 1998 Salzburg Seminar reached consensus that
care would improve significantly if patients worked as full
partners with health professionals to redesign and imple-
ment change within the healthcare delivery system. In
N i c h o l a s Wi l t o n
March 2001, the Institute of Medicine (IOM) Committee on
the Quality of Health Care in America published its land-
mark report Crossing the Quality Chasm: A New Health Sys-
tem for the 21st Century, which also called for fundamental
change and redesign of the American healthcare system.
The report provides specific direction for policymakers,
healthcare leaders, clinicians, regulators, purchasers, and
others, and defines six aims: Care should be safe, effective,
patient-centered, timely, efficient, and equitable.1
Thanks to the Internet, consumers have equal access to the
knowledge bases of medicine. Today, hospitals are increas-
ingly recognizing the importance of moving away from the
traditional medical model of care to more collaborative mod-
els that integrate patients and families into healthcare’s plan-
ning and delivery. In 2006 The Joint Commission published
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2. Patients as partners
Patients As Partners: How to Involve concepts: dignity and respect; infor- Hospitals balance the risk of dis-
Patients and Families, and in 2007 mation sharing; participation; and closures of protected health informa-
promulgated National Patient Safety collaboration. (See “Core concepts of tion against the improved quality of
Goals that require “the active in- patient- and family-centered care.”) care that emerges from patient and
volvement of patients and their fami- family participation in rounds. These
lies in the patient’s own care as a Examples from the individual level hospitals realize that informed and
patient safety strategy.”2 With growing understanding of engaged patients and families can be
patient- and family-centered prac- allies in ensuring patient safety. The
Long-term commitment tices in care planning and decision concept of “nothing about me with-
The new healthcare paradigm de- making, more and more hospitals are out me” truly becomes a reality
mands fundamental changes and a inviting patient and family participa- when patients, their families, and
redesign of the American health sys- tion in rounds. The key difference others on the healthcare team work
tem to close the quality gap, as out- between family-centered rounds and together in the rounding process.
lined in the IOM report. Partnership traditional bedside teaching is the Examples of ways to facilitate
requires an open relationship between active participation of the patient partnerships include online access
professional and patient. Advancing and family in the discussion. to shared care plans, allowing
patients to a level of partnership For 10 years, Children’s Hospital patients to collect all of their data
implies that health providers have to of Philadelphia (CHOP) has included about providers and pharmaceuti-
give up an amount of power and rec- family members as key members of cals in one place, and providing
Nurse leaders committed to collaborating
with families will tie patient- and family-
centered care to other priorities, such as
patient safety and quality improvement.
ognize that their roles are evolving the interdisciplinary team; their par- physicians with all of their critical
and changing. This necessitates trans- ticipation in rounds isn’t only wel- information about specialists being
forming the organizational culture. come—it’s essential. Daily rounds seen and prescriptions being used.
Patient- and family-centered care are one of many opportunities for the Planetree Hospitals have an open
fosters mutually respectful partner- family to work directly with the chart policy that enables patients to
ships in which there’s open and hon- healthcare team to develop the most read and write in their medical
est communication. This approach optimally beneficial therapeutic plan records. In their self-medication
leads to an informed patient who for their child. Participation in program, Planetree patients who
assumes control of his or her care. rounds is one of the ways through are able can keep their medications
The practitioner, instead of imparting which family members can become at the bedside and assume responsi-
facts and information to the patient knowledgeable about medications, bility for their administration.
and family, engages in a dialogue treatments, and early signs of prob- The Medical College of Georgia has
and welcomes the patient’s active lems or changes in health status. received funding to initiate a patient
involvement in decision making. Bedside rounds usually take place portal for their patients who have
One expert described the true physi- outside the room; the parents are hypertension. Traditionally, patient
cian/patient partnership as this: invited to join the team as they care documentation systems have
“The patient provides the individual openly discuss the child’s condition been predominantly provider driven.
information and the doctor the gen- and any concerns or questions from The shift is toward shared informa-
eral information, and both are neces- family members or the patient. In tion systems with patients and fami-
sary for effective management.”3 academic medical centers (such as lies that contain patient portals, which
In a patient- and family-centered those affiliated with CHOP) where facilitates the ability to schedule their
care model, patients and families rounds have an important teaching own appointments, request prescrip-
are viewed as essential allies and function, the active participation of tion refills, and review laboratory and
treated as true partners. Successful patients and families provides an X-ray reports and enhances partner-
practice of patient- and family- opportunity to model effective com- ships with their healthcare providers
centered care is based on four core munication for students and trainees. by accessing information.
46 August 2008 Nursing Management www.nursingmanagement.com

3. Susan Edgman-Levitan, a pioneer leader at the John Family Faculty participants offer students the opportunity
Stoeckle Center for Primary Care Innovations, Boston, to learn how patients and their families live with life-alter-
Mass., stresses that patient- and family-centered care ing medical challenges and how their illness impacts their
doesn’t mean forcing patients to make decisions or throw- daily lives.
ing information at them, but rather working with patients Families have been part of physician education at the
to ensure that they understand the information they University of Vermont College of Medicine since 1985.
receive and how to use it, and educating them on their Born out of the need to ensure that all individuals receive
rights and responsibilities as patients. Patient-centered care care that’s respectful, compassionate, and empowering,
means meeting people where they are and customizing families together with physicians designed the Medical
care, with the hope that over time their confidence will Education Project. Each session, co-taught by Parent-to-
increase and they’ll be better able and willing to make Parent staff, is required for all third-year medical students
decisions. during their pediatric clerkship.
Examples from all levels Safety
Patient- and family-centered care involves true partner- Over the past decade, Dana-Farber Cancer Institute,
ships with patients and families at all levels of care, not Boston, Mass., worked to create an organizational culture
only involving them in decisions about their care. Patients that places a high priority on patient safety and on patient-
and their families provide valuable insights to better plan and family-centered care. Dana-Farber currently has two
and deliver care, improve the experience of care, and eval- patient advisory councils: one for adult care and one for
uate that care. Hospitals, clinics, and other healthcare pediatrics. Patients provide input on organizational poli-
agencies that make an explicit commitment to patient- and cies, participate on search committees, and develop educa-
family-centered care are increasing their efforts to partner tional programming for staff. Members of the councils also
with patients and families in policy and program develop- sit on the Joint Committee on Quality Improvement and
ment, patient safety, quality improvement, healthcare
redesign, professional education, facility design planning,
and research and evaluation. Healthcare providers are ask-
ing patients and families to serve on patient and family
advisory councils and on committees, task forces, and
project teams.
At the University of Washington Medical Center, Seat-
tle, Wash., patients and families serve in a 1- to 2-year
position working in partnership with staff, nurses, and
physicians as advisors in inpatient cancer, perinatal/
neonatal ICU, rehabilitation, and the ED. Others serve on
various committees, including Patient Safety, Patient and
Family Education, American Disabilities Act, Aesthetics,
Customer Service and Satisfaction Integration, and the
Service League Board.
Education
Increased involvement of patients and families in full
partnership with medical educators is a logical out-
growth of changes in relationships between patients
and healthcare providers. Teaching family-centered
healthcare is an important facet of medical education,
and involving experienced patients and families as
partners in education brings a unique perspective.4
Students at the Medical College of Georgia have the
opportunity to learn about issues related to caring for
patients with various medical conditions, chronic illnesses,
and disabilities. The Family Faculty Program was devel-
oped to share unique patient and family experiences to
illustrate family-centered care concepts in an academic set-
ting as well as within the families’ home environment.
www.nursingmanagement.com 47

4. Patients as partners
Core concepts of patient- and family-centered care
Risk Management, a board-level com- ♦ Dignity and respect. Healthcare practitioners listen to and honor patient and family
mittee that approves the Institute’s perspectives and choices. Patient and family knowledge, values, beliefs, and cultural
quality improvement plan, evaluates backgrounds are incorporated into the planning and delivery of care.
outcomes of quality improvement ♦ Information sharing. Healthcare practitioners communicate and share complete and
unbiased information with patients and families in ways that are affirming and useful.
activities, and reviews reports regard-
Patients and families receive timely, complete, and accurate information in order to
ing sentinel events. effectively participate in care and decision making.
The Patient Safety Rounds Pro-
♦ Participation. Patients and families are encouraged and supported in participating in
gram began in 2001 when the risk
care and decision making at the level they choose.
manager and other staff members
♦ Collaboration. Patients and families are also included on an institution-wide basis.
made rounds in clinical areas to Healthcare leaders collaborate with patients and families in policy and program devel-
obtain staff input on safety issues. In opment, implementation, and evaluation; in healthcare facility design; and in profes-
2004, the program expanded to in- sional education, as well as in the delivery of care.
clude patient volunteers recruited to Source: Institute for Family-Centered Care. What are the core concepts of patient- and family-centered care?
interview other patients and to ob- Available at: http://www.familycenteredcare.org/faq.html. Accessed May 6, 2008.
tain their input on safety concerns.
This model, in which both staff and and traditions (including alterna- important guideline for involving
patients are engaged in identifying tive/folk remedies). Leaders commu- families and patients is to believe
actual and potential safety problems, nicate in a language and at a level that their participation is essential to
continues at the Institute today. that the patient understands and the design and delivery of optimum
emphasize physical comfort, privacy, care and services. Without sustained
Implications for nurse leaders emotional support, and involvement patient participation in all aspects of
Nurse leaders are in a unique posi- of family and friends. policy and program development
tion to shape healthcare by helping Nurse leaders should insist on and evaluation, we as healthcare
to integrate the concepts of patient- receiving feedback about patients’ providers fail to respond to the real
and family-centered care into pro- experience of care. Leadership in needs and concerns of those our sys-
gram and institutional visions. nursing is demonstrated by insisting tem is intended to serve.”5 NM
These include shared decision mak- that new employee orientation
REFERENCES
ing by consumers, ensuring health- teaches the essentials of patient- and 1. Institute of Medicine. Crossing the Quality
care professionals are trained in family-centered care. Endorsing Chasm: A New Health System for the 21st
supporting active patients, antici- staff to be part of patient- and Century. Washington, DC: National Acad-
pating health and long-term care family-centered care teams and emies Press; 2001.
2. The Joint Commission. 2007 National
needs for individuals, adopting the rewarding staff members who
Patient Safety Goals. Available at: http://
IOM’s simple rules for healthcare, demonstrate patient-centered care is www.jointcommission.org/NR/rdonlyres/
and making the patient perspective one method of illustrating a leader’s 44D4E740-7385-4666-B9E4-9EA7F769FB43/
a priority in policy and planning. commitment to this concept. Time 0/07_ahc_npsgs.pdf. Accessed July 16,
An effective patient-centered must be set aside weekly to listen to 2008.
3. Holman H, Lorig K. Patients as partners in
model can’t be designed or imple- patients’ stories and create opportu-
managing chronic disease: partnership is
mented unless the executive leading nities to teach staff how to partner, a prerequisite for effective and efficient
these disciplines shows the way. interact, and build relationships health care. BMJ. 2000;320(7234):526-527.
Working in partnership presents with patients, with a variety of 4. Hanson JL, Randall VF. Advancing a part-
challenges for all involved; it re- “miniworkshops” conducted on a nership: patients, families, and medical
educators. Teach Learn Med. 2007;19(2):
quires trust, confidence, and risks regular basis during staff meetings.
191-197.
on the part of everyone concerned. Nurse leaders who are committed 5. Sodomka P. Engaging patients and fami-
Leadership sets the tone for part- to collaborating with families will tie lies: a high leverage tool for health care
nering with patients and their fami- patient- and family-centered care to leaders. Available at: http://www.hhn
lies by providing a physical space other priorities, such as patient safety mag.com/hhnmag_app/jsp/articledisplay.
jspdcrpath=HHNMAG/PubsNewsArticle/
and personal interactions that are and quality improvement, and incor-
data/2006August/0608HHN_FEA_Quality
welcoming and not threatening. porate patient-centered practices into Update&domain=HHNMAG. Accessed
Leaders will create an environment daily operations and culture. July 21, 2008.
of understanding and consideration According to Pat Sodomka, direc-
ABOUT THE AUTHOR
of cultural distinctions, economic tor of the Center for Patient and Joanna Kaufman is an information special-
and educational status, health liter- Family Centered Care, Medical Col- ist at the Institute for Family-Centered Care,
acy level, family patterns/situation, lege of Georgia, “the single most Bethesda, Md.
48 August 2008 Nursing Management www.nursingmanagement.com