The Whys of Patient Education Jayne I. Fernsler and Christine A. Cannon

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ATIENT EDUCATION has become a sine qua non of quality health care.’ It is essential to patients, families, health care providers, health care agencies and institutions, and society. The value of patient education has escalatedas a result of technological advancesin health care and complex treatment regimens, consumerdemands, litigation, and reimbursementpolicies .2,3 Although patient education is important to all personswho are dealing with a health problem, it is crucial to those who are dealing with cancer.4 About 7 million Americans have a history of cancer, and another 1,100,000 will be diagnosedwith the diseasein 1991.5 Becausecancer is prevalent and life threatening, yet chronic and multistage, both the disease and its management generate many educational needs in patients and families throughout the courseof the illness.6-8Educational needsarise as a result of the diagnosis,‘,” hospitalization, ’ ’ treatment decisions,12*13treatment itself, 14-19home care,2o-23terminal illness,24 and survival.25 In addition, the notion that illness stimulates some individuals to becomemore involved in their health care26is supportedby researchfindings that cancerpatients in particular want involvement in decision making regarding their care.27-29 This article addressesthe rationale for cancer patient education as it relates to patients’ rights, professional standards, legal and agency mandates, patient benefits, and agency and societal benefits. Patient education is defined as “. . . a planned learning experience using a combination of methods such as teaching, counseling, and behavior modification techniques which influence patients’ knowledge and health behavior” (p. 323).30 The ultimate goal of patient education is patient and family coping with the health problem.3 PATIENTS’ RIGHTS

Patient education enables patients to make informed decisions and assumehealth care responsibilities. The patient’s right to be informed constitutes one of the most important rationales for patient education. In fact, Bartlett and Jonkers3’ statethat patient education is predicatedon a commitment to patient autonomy and patients’ rights. Seminars in Oncology Nursing, Vol 7. No 2 (May),

1991:

pp 79-88

Historically, the quantity and quality of patient education in the United Statesappearsto be inversely related to the degree of social distancing between patients and health care providers.* Likewise, patient education has developed in other countries that value individual freedom and rights.3’ Recognizing the needto addresspatients’ rights, the American Hospital Association developed A Patient’s Bill ofRights in 1972.“* Of the list of 12 rights, 6 relate to receiving information about diagnosis, treatment, prognosis, procedures, medical consequences,personnel, or the hospital itself. Becauseeducation is implied in these statements, A Patient’s Bill of Rights is cited frequently as a rationale for patient education. However, Sharf33 suggeststhat patient education should transcend the usual delivery of disease-relatedinformation and emphasizethe development of patients’ communication skills. These skills would enable patients to interact effectively with health care providers rather than to assumea passivelistener role. Patientswith cancer and their families are often required to modify their lifestyles considerably as a result of the diseaseand its treatment. These individuals have the right to know the reasonsfor the required changes.34 In addition, cancer survivors have the right to be informed about continued health care, employment options, and insurance coverage.Theserights and others are addressedin The Cancer Survivors’ Bill of Rights.35 PROFESSIONAL STANDARDS

Historically, the nursing profession has espoused the values of patients’ rights and patient From the College of Nursing, University of Delaware, Newark, DE. Jayne I. Femsler, DSN, RN: Associate Professor, Department of Advanced Nursing Science, College of Nursing, Vniversity of Delaware, Newark, DE; Christine A. Cannon, MSN, RN: Assistant Professor, Department of Nursing Science, College of Nursing, University of Delaware, Newark, DE; and Former Program Director, Patient Education, Department of Nursing Education, Medical Center of Delaware, Wilmington, DE. Address reprint requests to Jayne I. Fernsler, DSN, RN, College of Nursing, University of Delaware, Newark, DE 19716. Copyright 0 1991 by W.B. Saunders Company 0749-2081/91/0702-0002$5.OOlO

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education. Although the Code for Nurses With Interpretive Statements addressesnurse behaviors that support competent care, patient education is more implied than explicit in the document.36 Likewise, nurses’ responsibility for patient education is implied in Nursing, A Social Policy Statemen?7 and The Scope of Nursing Practice.38 Logically, nursesare more involved than are other health professionals in the coordination3 and delivery of patient education programs.* The Oncology Nursing Society recognized the importanceof patient educationby the inclusion of a standardrelated to client and family information in the original Outcome Standards for Cancer Nursing Practice39 and by the development and revision of standards for cancer patient education.40’41Specific standardsand criteria are listed in relation to the nurse, resources, curriculum, teaching-learning process, and the learner. Additionally, in the Standards of Oncology Nursing Education, application of theories of teaching and learning in patient education is a criterion descriptor of the advancedlevel oncology nurse.42 LEGAL AND AGENCY MANDATES

Beyond striving to protect patients’ rights and to meet professional standards, health professionals and agencies are mandatedby law, accreditation standards, and reimbursement policy to provide patient and family education. Standardsof care, in defining the minimum level of care to be provided by a given professionor agency, legally determine “duty owed to the patient.” Standardsof care related to patient education are contained within internal agencypolicies and nursing standards(such asjob descriptions and teaching protocols). Externally set standardsare mandatedwithin statenursing practice acts, precedent court decisions, and federal accreditation and reimbursement guidelines.43 Several key reasons for participation in patient education are presentedfrom a viewpoint of legal and agency requirements. Nursing Practice Acts

The definition and scopeof nursing practice are defined at the state level in laws referred to as the nursing practice acts. Each stateretains the right to determine legally the most appropriatepractice of nursing that will safeguardthe health of its citizens. Therefore, statesvary in the contentsof their

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nursing statutes. Some acts contain specific reference to health teaching while others address it more globally.@ Although most nursing practice acts do not offer specific guidelines related to patient education, much is implied about nurses’ obligations for diseaseprevention and health promotion. In the Proposed Model Nursing Practice Act, which serves as a guide for states attempting to revise their laws, each aspectof the definition of the practice of nursing implies a needfor patient or health education. In addition, the description of the scopeof nursing responsibility has significant relevance to nursing’s teaching role and responsibilities.45 Informed Consent

Informed consent refers to the legal rules that direct the behavior of physicians in their communication with patients, to the ethical doctrine that insures a patient’s right to self-determination, and to the interactions patients have with their care providers to select their courses of care.46 The right of the individual to make an informed choice about his or her care is basedon a wealth of statutory and case law. Narratives of landmark cases (too extensive to describe within the scope of this article) can be found throughout the nursing and medical literature.46-49 Issues of patient education related to the informed consent processare receiving attention as emphasis has shifted from the “medical practice standard” (what a local physician would tell) to the “reasonable person standard” (what a reasonable person would want to know). The informed consentprocessis particularly important for people with cancerbecauseof the number and complexity of diagnostic and therapeutic proceduresthey may needto undergo. The nature of cancerand its treatment often create additional barriers to learning: anxiety, debilitation, and uncertainty about unfamiliar and threatening experiences.” In addition, consentforms with readability levels beyond average reading ability are common and often lead to consentwithout understanding.5’ S* The consent process can be viewed as a comprehensive, multidisciplinary educational process53or as a strictly legal formality for the purpose of protecting the physician and agency.51 In a survey of 10 hospitals, Clark et a151found that seven hospitals focused on the latter process and

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usedconsentforms with readibility levels that rendered them ineffective. They suggestedstrengthening the processby separatingand strengthening both legal and educational aspects and having someone other than the physician (who has a vested interest) obtain the patient’s signature. Several studies503’6documented poor recall of information given during the processof obtaining informed consent for participation in chemotherapy protocols. Rimer et alSorecommendedthat the informed consent process consist of a series of teaching activities that are categorizedto enhance retention. Dodd and Moodi were able to increase the accuracy of patients’ recognition of potentially lethal chemotherapyside effectsby reinforcing this information after the informed consentprocedure. Nurses can help to insure that patients’ consent is truly informed consent by implementing Rimer et al’?’ and Dodd and Mood’s16successfulinterventions. Hubbard54 stressed nurses’ moral responsibility for patient advocacy in treatment requiring ongoing informed consent. Nurses can protect patients’ rights by routinely assessingtheir understanding to insure continued informed and voluntary consent, particularly as changesoccur in patients’ conditions. In addition, by identifying areas of patient concern and conflict and communicating these to the physician, nursescan maintain valid consent throughout treatment. Health Agency Requirements

Health care agenciesare required to monitor the effectivenessof patient educationprovided by their staffs. Agencies bear the liability for enforcing adoptedpolicies and standardsto insure the quality of their health care services.They sharethe potential malpractice burden should staff breach their duty with resulting patient injury.49 Patient education is an excellent risk management tool. As an adjunct to care, patient education can positively influence patients’ perceptions of the adequacy of care given at a time when they may feel inadequateabout what is happening. For example, clearly written dischargeinstructions can significantly enhance recovery for a person still groggy from anesthesia after an outpatient procedure.55 The Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) has set specific standardsfor the planning and implementa-

tion of teaching, evaluation of patient learning, and related documentation for most service areas. The Nursing Services Standard NR.5 refers specifically to the inclusion of patient education and self-care knowledge in the nursing plan and the provision of discharge instructions and individualized dischargecounseling.56JCAHO standardsare acceptedlegally as standardsof care that should be provided by health care agencies.JCAHO accreditation status is admissible in court proceedings and affects hospitals’ eligibility for Medicare/ Medicaid reimbursement. JCAHO automatically communicateshospitals’ accreditation statusto the Health Care Financing Administration (HCFA) for their scrutinization related to Medicare and Medicaid reimbursement.57 Requirements for patient education have also been specified by HCFA for agency participation in Medicare and Medicaid programs.58 Reimbursementdenials by governmental and private insurershave soaredin recent years. Scrutiny of patients’ records has resulted in payment denials due to inadequate documentation of teaching and/or learning and for ineffective teaching resulting in early readmissions in the same diagnosis-related group (DRG). Some of these readmissionscan be prevented through the implementation of quality patient education.592W PATIENT BENEFITS

Another compelling rationale for patient education is improved patient outcomes. Commonly measuredoutcomesinclude improved adherenceto a therapeutic regimen,‘226 increased patient satisfaction,’ ,26 enhanced patient self-determination’ with increased ability to handle symptoms,*(j and enhancedpatient recovery after While the outcomesare inherently surgery.2625162 valuable, they may be overshadowedby financial considerations within an agency or institution. i Considering the prevalence of chronic disease in an increasingly aging population, patients’ independentfunctioning and self-managementmay become a mutually valued outcome of patient education.31363 Although the literature is replete with anecdotal accountsof patient benefits associatedwith patient education, publications on empirically validated improvementsin patients’ health status are scarce.

Becausecancer has not always been considereda chronic diseaseand is, to some extent, a preventable disease, data relevant to outcomes of cancer patient education are particularly scarce.64A review of cancer nursing research resulted in the identification of a need to study the effect of patient education on positive patient outcomes.65366 In addition, patient or health education was ranked 4th of 46 researchpriorities that were identified in a survey completed by selectedresearchersand/or leadersin the Oncology Nursing Society.67 Despite the paucity of empirical data on improved cancerpatient outcomesresulting from patient education asdefined by Bartlett,30a complete review of the published research is beyond the scope of this article. A brief review of selected research, conducted primarily by nurses, is presented.

even though the physical statusof the two groups was similar. Psychological Status

In several landmark studies with non-cancer populations, Jean Johnson et a177-79 demonstrated that sensory information could reduce patient distress in reaction to threatening events and could enhancerecovery from surgery. In a more recent study with patients receiving radiation therapy for prostate cancer, Johnson et also evaluated the effect of receiving tape-recorded,concrete,objective information on patients’ emotional responsesand daily functioning. They found no significant difference between the emotional responsesof patients in the experimental group and patients in the control group, with both groups reporting low emotional disturbance. However, patients who received concrete, objective information reported Knowledge significantly less disruption in their daily functioning than did the control group. Increasedknowledge is probably the patient outBecause cancer and its treatment are anxiety come that is documentedmost frequently.‘0V’6*68-73 provoking for many patients and families, anxiety Although knowledge is believed to influence indihas been measuredas an outcome of educational viduals, increasing knowledge alone doesnot necinterventions. Judi Johnson’* found a significant essarily improve patients’ health statuses,63nor decrease in anxiety and an increased sense of does it satisfy Bartlett’s definition of patient edumeaning in life among patients who had particication. Consequently, most researchersmeasure pated in a 4-week patient educationcourse. Dodd75 other dependent variables in addition to knowlreported a similar change in anxiety in a group of edge. chemotherapypatients 6 weeksafter they had been Self-Care given information on self-care. The need to maintain or enhance the patient’s Enhanced self-care was documented by self-concept and self-esteem is expressed freDodd74,75in two studies of patients receiving chequently in the literature. Watson76reported that motherapy. Patients who received instruction in individual counseling sessionsgiven to a treatment side effect managementtechniques initiated more group postoperatively, in contrast to routine care self-care behaviors with regard to the side effects given to a control group, enhanced ostomy paof chemotherapy than did patients in the control tients’ self-concept and self-esteem.Interestingly, groups. Dodd’s researchin efforts to promote self1 month later, the treatmentgroup was more active care has expandedto a randomizedclinical trial of than the control group in outside activities. informational interventions for patients receiving Patient and family satisfaction is a common outchemotherapy. come of patient education. In addition to knowlImproved self-carehasbeendocumentedalso in edge, Derdiarianlo measured satisfaction among relation to pain management68and ostomy care.76 Dalton68reported that patients who participated in newly diagnosedcancerpatients and their spouses. a l-hour teaching sessionon pain practiced more The experimental group that had received individualized information, counseling, and referral nonpharmacological and noninvasive pain control techniques than did patients in the control group. scoredhigher on information and satisfaction than did the control group that received routine, inforWatson76found that patients who received individmal information. ual counseling sessionswere significantly more involved in their ostomy care 1 month after disImproved pain control, enhancedsenseof concharge than were patients in the control group, trol over pain, and less worry about tolerance and

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addiction were reported as patient benefits of a brief counseling session using printed materials that was offered to the treatment group in a randomized clinical tria1.73 Perhaps these benefits were the result of better implementation and compliance with the prescribed regimen that was observed in the treatment as opposedto the control group.

Strategies

Wlth Cost-Savings

Preoperative education Medication self-administration Outpatient education Discharge planning education Family education Peer educators Cooperative care units Early discharge programs Home health programs

Potential

programs

Data from Bartlett.s6

Physical Status

The impact of patient education on physical status is difficult to measurein patients with cancer. Cancer is a progressive disease, and improved physical status may not be a realistic goal for all patients; maintenanceof the current statusmay be a more appropriate goal. In addition, physical changesoften occur gradually and require sensitive and sometimescomplex and expensive measurement techniques. Beck” reported that patients who received instruction and an oral care protocol had significantly better oral status and improvement in their oral status than patients who received no special intervention. In addition, less infection was noted after implementation of the protocol. A summary of the benefits of cancer patient education appears in Table 1. SOCIETAL AND HEALTH CARE AGENCY BENEFITS

Society and the community benefit when disease is prevented, chronic illness is controlled, and recovery is expediteddue to behaviorsthat may have resulted from patient education. The cost-benefits to society have been measuredin terms of reduced number and/or length of hospital stays,6138’s2earlier recovery, less absenteeismfrom school and Table 1. Empirically Validated Benefits Cancer Patient Education Increased knowledge Enhanced self-care Chemotherapy side-effect Pain management Ostomy care Reduced disruption in daily Reduced anxiety Enhanced self-concept and Increased satisfaction with Improved pain control lmoroved oral status

Table 2. Educational

management

functioning self-esteem care

of

work,44379reduction in accidents, and acquisition of positive health-related behaviors.83 Health Care Agency Benefits

Kemaghan and Giloth84 reviewed cost-saving benefits that are outcomesof patient education including more timely hospital discharges, reduced losses in agency productivity, more appropriate use of services (often less expensive ones), and reduced need for acute care. In addition, Bartlett85786 presentedextensive reviews of the literature relating outcomes, particularly those with financial benefits, to appropriate educational strategies and to each DRG. Benefits related to care of people with cancer, dependingon their DRG, may result from any of the strategieslisted in Table 2. Significant cost-savingsare most likely to result if DRGs, in which the hospital’s average length of stay exceedsthe reimbursable length of stay, are targeted with an effective teaching strategy. Hospitals can benefit by providing patient education for patients in profitable DRGs also becausepatient education enhancesthe quality of care and patients’ satisfaction with care. Satisfied patients, in turn, refer others with similar problems to the services of the hospital, thus increasing patient volume.87 Another benefit of patient education to health care agencies is a reduction in malpractice suits. Patient education facilitates open, honest and sensitive communication, reducing the likelihood of malpractice suits. Withholding information encourages an adversarial relationship between patient and caregiver, as misinterpretation or lack of communication createsconsumerconfusion, sense of abandonment, and anger.88s9 Another factor contributing to a reduced likelihood of litigation is the reduction of unrealistic patient expectations. Patient education reduces the discrepancies between patient expectations and reality of the ‘ ‘quicker and sicker’ ’ discharge environment.89*90

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Table 3. Activities

to Reduce Malpractice

Litigation

Enhance physician-patient rapport Involve patient actively Incorporate efforts of family in a therapeutic Upgrade the informed consent process Educate patients about their rights Data from

way

Bartlett.9z

To prevent malpractice suits, Guthiel et a191suggested developing a therapeutic alliance with the patient to provide information as well as to acknowledge and shareuncertainty-a commonneed of people facing cancer. Also, Bartlett9* proposed other strategiesfor reducing malpractice litigation (Table 3). Should litigation occur, documentation of patient and family teaching and learning is essential for legal protection.” SUMMARY

The rationale for patient education is that patients and families have the right to be informed;

that professional standards describe appropriate patient education; that health care organizations and the law require patient education; and patients, health care organizations, and that society benefit from the process. Patients with cancer benefit in terms of knowledge acquisition, enhanced selfcare, reduced anxiety, enhancedself-concept and self-esteem,increased satisfaction with care, improved pain control, improved oral status, and reduced disruption in daily functioning. Health care organizations benefit in terms of quality services, reduced costs, and reduction in malpractice suits. Society benefits as patients with knowledge and skills maintain or resumefunctional status and return to school, work, or service activities. Nursesare key professionalsin the coordination and delivery of patient education programs. They too have the opportunity to benefit from patient education through therapeutic alliances with patients and families that foster both personal and professional satisfaction.

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The whys of patient education.

The rationale for patient education is that patients and families have the right to be informed; that professional standards describe appropriate pati...
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