PATIENTSAS

PARTNERS

PATIENTSAS

PARTNERS

There’s growing recognition of the need to integrate patients and families

into care planning and delivery.By Joanna Kaufman, RN, MS

Nic

ho

las

Wil

ton

T he concept of patients as partners in their owncare isn’t new. Adopting the guiding principle of“nothing about me without me,” participants ata 1998 Salzburg Seminar reached consensus that

care would improve significantly if patients worked as fullpartners with health professionals to redesign and imple-ment change within the healthcare delivery system. InMarch 2001, the Institute of Medicine (IOM) Committee onthe 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 fundamentalchange and redesign of the American healthcare system.The report provides specific direction for policymakers,healthcare leaders, clinicians, regulators, purchasers, andothers, 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 theknowledge bases of medicine. Today, hospitals are increas-ingly recognizing the importance of moving away from thetraditional 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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Patients as partners

Patients As Partners: How to InvolvePatients and Families, and in 2007promulgated National Patient SafetyGoals that require “the active in-volvement of patients and their fami-lies in the patient’s own care as apatient safety strategy.”2

Long-term commitment The new healthcare paradigm de-mands fundamental changes and aredesign of the American health sys-tem to close the quality gap, as out-lined in the IOM report. Partnershiprequires an open relationship betweenprofessional and patient. Advancingpatients to a level of partnershipimplies that health providers have togive up an amount of power and rec-

ognize that their roles are evolvingand changing. This necessitates trans-forming the organizational culture.

Patient- and family-centered carefosters mutually respectful partner-ships in which there’s open and hon-est communication. This approachleads to an informed patient whoassumes control of his or her care.The practitioner, instead of impartingfacts and information to the patientand family, engages in a dialogueand welcomes the patient’s activeinvolvement in decision making.One expert described the true physi-cian/patient partnership as this:“The patient provides the individualinformation and the doctor the gen-eral information, and both are neces-sary for effective management.”3

In a patient- and family-centeredcare model, patients and familiesare viewed as essential allies andtreated as true partners. Successfulpractice of patient- and family-centered care is based on four core

concepts: dignity and respect; infor-mation sharing; participation; andcollaboration. (See “Core concepts ofpatient- and family-centered care.”)

Examples from the individual levelWith growing understanding ofpatient- and family-centered prac-tices in care planning and decisionmaking, more and more hospitals areinviting patient and family participa-tion in rounds. The key differencebetween family-centered rounds andtraditional bedside teaching is theactive participation of the patientand family in the discussion.

For 10 years, Children’s Hospitalof Philadelphia (CHOP) has includedfamily members as key members of

the interdisciplinary team; their par-ticipation in rounds isn’t only wel-come—it’s essential. Daily roundsare one of many opportunities for thefamily to work directly with thehealthcare team to develop the mostoptimally beneficial therapeutic planfor their child. Participation inrounds is one of the ways throughwhich family members can becomeknowledgeable about medications,treatments, and early signs of prob-lems or changes in health status.Bedside rounds usually take placeoutside the room; the parents areinvited to join the team as theyopenly discuss the child’s conditionand any concerns or questions fromfamily members or the patient. Inacademic medical centers (such asthose affiliated with CHOP) whererounds have an important teachingfunction, the active participation ofpatients and families provides anopportunity to model effective com-munication for students and trainees.

Hospitals balance the risk of dis-closures of protected health informa-tion against the improved quality ofcare that emerges from patient andfamily participation in rounds. Thesehospitals realize that informed andengaged patients and families can beallies in ensuring patient safety. Theconcept of “nothing about me with-out me” truly becomes a realitywhen patients, their families, andothers on the healthcare team worktogether in the rounding process.

Examples of ways to facilitatepartnerships include online accessto shared care plans, allowingpatients to collect all of their dataabout providers and pharmaceuti-cals in one place, and providing

physicians with all of their criticalinformation about specialists beingseen and prescriptions being used.

Planetree Hospitals have an openchart policy that enables patients toread and write in their medicalrecords. In their self-medicationprogram, Planetree patients whoare able can keep their medicationsat the bedside and assume responsi-bility for their administration.

The Medical College of Georgia hasreceived funding to initiate a patientportal for their patients who havehypertension. Traditionally, patientcare documentation systems havebeen predominantly provider driven.The shift is toward shared informa-tion systems with patients and fami-lies that contain patient portals, whichfacilitates the ability to schedule theirown appointments, request prescrip-tion refills, and review laboratory andX-ray reports and enhances partner-ships with their healthcare providersby accessing information.

Nurse leaders committed to collaboratingwith families will tie patient- and family-centered care to other priorities, such aspatient safety and quality improvement.

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Susan Edgman-Levitan, a pioneer leader at the JohnStoeckle Center for Primary Care Innovations, Boston,Mass., stresses that patient- and family-centered care doesn’t mean forcing patients to make decisions or throw-ing information at them, but rather working with patientsto ensure that they understand the information theyreceive and how to use it, and educating them on theirrights and responsibilities as patients. Patient-centered caremeans meeting people where they are and customizingcare, with the hope that over time their confidence willincrease and they’ll be better able and willing to makedecisions.

Examples from all levels Patient- and family-centered care involves true partner-ships with patients and families at all levels of care, notonly involving them in decisions about their care. Patientsand their families provide valuable insights to better planand deliver care, improve the experience of care, and eval-uate that care. Hospitals, clinics, and other healthcareagencies that make an explicit commitment to patient- andfamily-centered care are increasing their efforts to partnerwith patients and families in policy and program develop-ment, patient safety, quality improvement, healthcareredesign, professional education, facility design planning,and research and evaluation. Healthcare providers are ask-ing patients and families to serve on patient and familyadvisory councils and on committees, task forces, andproject teams.

At the University of Washington Medical Center, Seat-tle, Wash., patients and families serve in a 1- to 2-yearposition working in partnership with staff, nurses, andphysicians as advisors in inpatient cancer, perinatal/neonatal ICU, rehabilitation, and the ED. Others serve onvarious committees, including Patient Safety, Patient andFamily Education, American Disabilities Act, Aesthetics,Customer Service and Satisfaction Integration, and theService League Board.

EducationIncreased involvement of patients and families in fullpartnership with medical educators is a logical out-growth of changes in relationships between patientsand healthcare providers. Teaching family-centeredhealthcare is an important facet of medical education,and involving experienced patients and families aspartners in education brings a unique perspective.4

Students at the Medical College of Georgia have theopportunity to learn about issues related to caring forpatients with various medical conditions, chronic illnesses,and disabilities. The Family Faculty Program was devel-oped to share unique patient and family experiences toillustrate family-centered care concepts in an academic set-ting as well as within the families’ home environment.

Family Faculty participants offer students the opportunityto learn how patients and their families live with life-alter-ing medical challenges and how their illness impacts theirdaily lives.

Families have been part of physician education at theUniversity of Vermont College of Medicine since 1985.Born out of the need to ensure that all individuals receivecare that’s respectful, compassionate, and empowering,families together with physicians designed the MedicalEducation Project. Each session, co-taught by Parent-to-Parent staff, is required for all third-year medical studentsduring their pediatric clerkship.

SafetyOver the past decade, Dana-Farber Cancer Institute,Boston, Mass., worked to create an organizational culturethat places a high priority on patient safety and on patient-and family-centered care. Dana-Farber currently has twopatient advisory councils: one for adult care and one forpediatrics. Patients provide input on organizational poli-cies, participate on search committees, and develop educa-tional programming for staff. Members of the councils alsosit on the Joint Committee on Quality Improvement and

Risk Management, a board-level com-mittee that approves the Institute’squality improvement plan, evaluatesoutcomes of quality improvementactivities, and reviews reports regard-ing sentinel events.

The Patient Safety Rounds Pro-gram began in 2001 when the riskmanager and other staff membersmade rounds in clinical areas toobtain staff input on safety issues. In2004, the program expanded to in-clude patient volunteers recruited tointerview other patients and to ob-tain their input on safety concerns.This model, in which both staff andpatients are engaged in identifyingactual and potential safety problems,continues at the Institute today.

Implications for nurse leadersNurse leaders are in a unique posi-tion to shape healthcare by helpingto integrate the concepts of patient-and family-centered care into pro-gram and institutional visions.These include shared decision mak-ing by consumers, ensuring health-care professionals are trained insupporting active patients, antici-pating health and long-term careneeds for individuals, adopting theIOM’s simple rules for healthcare,and making the patient perspectivea priority in policy and planning.

An effective patient-centeredmodel can’t be designed or imple-mented unless the executive leadingthese disciplines shows the way.Working in partnership presentschallenges for all involved; it re-quires trust, confidence, and riskson the part of everyone concerned.

Leadership sets the tone for part-nering with patients and their fami-lies by providing a physical spaceand personal interactions that arewelcoming and not threatening.Leaders will create an environmentof understanding and considerationof cultural distinctions, economicand educational status, health liter-acy level, family patterns/situation,

and traditions (including alterna-tive/folk remedies). Leaders commu-nicate in a language and at a levelthat the patient understands andemphasize physical comfort, privacy,emotional support, and involvementof family and friends.

Nurse leaders should insist onreceiving feedback about patients’experience of care. Leadership innursing is demonstrated by insistingthat new employee orientationteaches the essentials of patient- andfamily-centered care. Endorsingstaff to be part of patient- and family-centered care teams andrewarding staff members whodemonstrate patient-centered care isone method of illustrating a leader’scommitment to this concept. Timemust be set aside weekly to listen topatients’ stories and create opportu-nities to teach staff how to partner,interact, and build relationshipswith patients, with a variety of“miniworkshops” conducted on aregular basis during staff meetings.

Nurse leaders who are committedto collaborating with families will tiepatient- and family-centered care toother priorities, such as patient safetyand quality improvement, and incor-porate patient-centered practices intodaily operations and culture.

According to Pat Sodomka, direc-tor of the Center for Patient andFamily Centered Care, Medical Col-lege of Georgia, “the single most

important guideline for involvingfamilies and patients is to believethat their participation is essential tothe design and delivery of optimumcare and services. Without sustainedpatient participation in all aspects ofpolicy and program developmentand evaluation, we as healthcareproviders fail to respond to the realneeds and concerns of those our sys-tem is intended to serve.”5 NM

REFERENCES1. Institute of Medicine. Crossing the Quality

Chasm: A New Health System for the 21stCentury. Washington, DC: National Acad-emies Press; 2001.

2. The Joint Commission. 2007 NationalPatient Safety Goals. Available at: http://www.jointcommission.org/NR/rdonlyres/44D4E740-7385-4666-B9E4-9EA7F769FB43/0/07_ahc_npsgs.pdf. Accessed July 16,2008.

3. Holman H, Lorig K. Patients as partners inmanaging chronic disease: partnership isa prerequisite for effective and efficienthealth care. BMJ. 2000;320(7234):526-527.

4. Hanson JL, Randall VF. Advancing a part-nership: patients, families, and medicaleducators. Teach Learn Med. 2007;19(2):191-197.

5. Sodomka P. Engaging patients and fami-lies: a high leverage tool for health careleaders. Available at: http://www.hhnmag.com/hhnmag_app/jsp/articledisplay.jspdcrpath=HHNMAG/PubsNewsArticle/data/2006August/0608HHN_FEA_QualityUpdate&domain=HHNMAG. AccessedJuly 21, 2008.

ABOUT THE AUTHORJoanna Kaufman is an information special-ist at the Institute for Family-Centered Care,Bethesda, Md.

Core concepts of patient- and family-centered care♦ Dignity and respect. Healthcare practitioners listen to and honor patient and familyperspectives and choices. Patient and family knowledge, values, beliefs, and culturalbackgrounds are incorporated into the planning and delivery of care.♦ Information sharing. Healthcare practitioners communicate and share complete andunbiased information with patients and families in ways that are affirming and useful.Patients and families receive timely, complete, and accurate information in order toeffectively participate in care and decision making.

♦ Participation. Patients and families are encouraged and supported in participating incare and decision making at the level they choose.♦ Collaboration. Patients and families are also included on an institution-wide basis.Healthcare leaders collaborate with patients and families in policy and program devel-opment, implementation, and evaluation; in healthcare facility design; and in profes-sional education, as well as in the delivery of care.Source: Institute for Family-Centered Care. What are the core concepts of patient- and family-centered care?Available at: http://www.familycenteredcare.org/faq.html. Accessed May 6, 2008.

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