SOCW 6204 Walden University Wee K 10 Medical Social Work Discussion

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SOCW 6204

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Medical social workers play an integral role as support for patients and their families at the end of a patient’s life. Most physicians are not equipped to handle the emotional aspects at the end of life. Therefore, more often than not, medical social workers are the principal health care professional involved in educating, mediating, and coordinating end of life plans. In this capacity, medical social workers are charged with informing patients and their families about end-of-life decisions and providing counseling around these issues. Medical social workers must understand the terminology, technology, and legal issues that can dictate end-of-life care.

Consider the following cases:

End-of-Life Care: Case 1

Roger is a 43-year-old African American male diagnosed with HIV/AIDS and renal failure. He was recently admitted to the intensive care unit and put on a ventilator due to medical deterioration. The doctors inform his wife that there is no chance that his condition will improve and explain that he is being kept alive by the machines. Roger’s wife is distraught but knows that Roger did not want to be kept alive by a machine. The medical social worker goes to Roger’s chart and finds his medical power of attorney. Roger’s wife is listed as his agent; however, the document was not signed by two witnesses as required.

End-of-Life Care: Case 2

Margaret is a 72-year-old female with severe cardiovascular disease. She is admitted to the hospital after a stroke. There is no indication that she will recover and, if so, to what level of functioning. The doctors have informed her family that she is experiencing cardiac issues that might lead to heart failure. Should this happen, the doctors will have to take efforts to resuscitate her. The medical social worker and the doctor meet with the family to discuss a do not resuscitate order. The family is completely overwhelmed. They do not fully understand what the doctor is saying and they are in disagreement about what to do.

To prepare for this Discussion, review this week’s resources including the case studies. Select one of the cases. Think about the end-of-life issues including living wills or medical power of attorney.

By Day 3

Post an explanation of how you as a medical social worker would handle the case you selected. Explain the services you might offer to the family within the applicable laws and your scope of practice. Explain the methods and practices you might employ to educate this family regarding the legal issues surrounding the case. Then, explain the purpose, benefits, and legal ramifications of living wills, medical power of attorney, and advance directives. Finally, explain the advocacy role you might play on behalf of the patient and patient’s family in this case.

https://www-tandfonline-com.ezp.waldenulibrary.org/doi/full/10.1080/15524250903173892

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Journal of Social Work in End-of-Life & Palliative Care, 6:27–50, 2010 Copyright # Taylor & Francis Group, LLC ISSN: 1552-4256 print=1552-4264 online DOI: 10.1080/15524256.2010.489221 PEER-REVIEWED ARTICLES Life-Sustaining Treatment Decisions: A Social Work Response to Meet Needs of Health Care Surrogates JULIA W. BUCKEY University of Central Florida, Orlando, Florida, USA NEIL ABELL Florida State University, Tallahassee, Florida, USA Surrogates must possess essential patient information prior to legitimately exercising legal and moral obligations to act on patients’ medical care preferences. This descriptive, in vivo study examined factors influencing surrogate and proxy decisions (N ¼ 132) following life-sustaining treatment decisions. Patient communication and self-efficacy variables accounted for approximately 38% of the variance in surrogates’ perceptions of benefits= barriers associated with decision making. Guided by patients’ advanced communication, respondents (97.8%) expressed high self-reliance and significant appreciation of benefits associated with their decisions. Clarifying surrogates’ and providers’ understanding of patient care preferences during ICU=CCU admission may facilitate better adherence to patient wishes. KEYWORDS end-of-life care, health care proxy, health care surrogate, Health Care Surrogate Preferences Scale, life-sustaining treatment decisions In nearly 80% of the 2.5 million deaths that occur in U.S. hospitals each year, surrogates make 70–90% of the decisions to withhold or withdraw life-sustaining treatment from critically ill patients in the intensive care unit (ICU; Mcgee, 2000; Prendergast & Luce, 1997; Swigart, Lidz, Butterworth, Received 17 January 2010; accepted 22 April 2010. Address correspondence to Julia W. Buckey, PhD, ACSW, University of Central Florida, HPA1 Room 255, P.O. Box 163358, Orlando, FL 32816, USA. E-mail: jwbuckey@earthnet.net 27 28 J. W. Buckey and N. Abell & Arnold, 1996). Therefore, surrogates potentially influence nearly 1.5 million end-of-life treatment decisions per year. As the number of older people continues to grow, more and more Americans will likely experience this decision-maker role at some period during their lifetime. An overall lack of advanced surrogate knowledge of patient care preferences complicates surrogate decision making. Surrogates better understand what is important to patients at the end of life when they have had detailed discussions with them. However, limited awareness about specific treatment choices and a lack of understanding of surrogate role requirements have remained largely unaddressed in prior examinations of surrogate and patient communications (Engelberg, Patrick, & Curtis, 2005; Gutheil & Heyman, 2005; Truog et al., 2001). Although differences often exist between what patients and their surrogates deem important end-of-life tasks, advanced knowledge of patient preferences has been found a necessary, but not sufficient, ingredient for surrogate action (Engelberg et al., 2005; Hines et al., 2001; Layde et al., 1995; Suhl, Simons, Reedy, & Garrick, 1994). For many Americans, the recent uproar about so-called ‘‘death panels’’ (Lepore, 2009) evoked images of medical care driven by external mandates and little individualized choice. This underscored both public and political misunderstanding of the tremendous challenges faced by those making decisions in support of a loved one’s medical care at life’s end. In addition to highlighting the resistance and barriers associated with end-of-life discussions in American culture, this debate has emphasized Americans’ fears of ‘‘dying badly’’ (Court, 2009). At the same time, the debate countered the status quo by bringing to light the crucial importance of explicit communication by persons charged with making respectful health care choices on behalf of a loved one whose preferences would otherwise remain unspoken. Social work professionals providing services to surrogates or extended family members involved in decision making in the ICU generally have relied on extensive professional training and experience in delivering short-term, crisis, or other brief treatment interventions to the surrogate population. Although the very public life and death of Terri Schiavo reminded us of the potentially negative and long-lasting consequences possible in relationships among patients’ survivors (Ditto, 2006), social work professionals have had few empirical findings available to guide them as they assist surrogates to discharge their duty of making treatment decisions. For that reason, this study sought to answer the question, ‘‘Did surrogates’ personal attributes, or their perceptions of communications, social support, or self-efficacy directly influence their perception of the benefits and barriers associated with their life-sustaining treatment decisions?’’ In other words, how well did these factors predict participants’ sense that they had done the right thing for their loved one? Life-Sustaining Treatment Decisions 29 LITERATURE REVIEW Development of Surrogate Roles and Responsibilities During the late 20th century, the health care surrogate role emerged as an outgrowth of three interrelated developments: application of biomedical technology to critically ill patients, development of the field of bioethics, and judicial and legislative decisions directing surrogate and proxy actions (Health Care Advance Directives Act, 2009). In recognizing the right of parents to speak and act on behalf of family members, federal and state courts acknowledged the health care surrogate role (Cruzan v. Director, Missouri Department of Health, 1990; Quinlan v. New Jersey, 1976). These extensions of individual patient rights from competent to incompetent patients paralleled passage of the Patient Self-Determination Act (PSDA, 1990), directing that all Medicare and Medicaid patients be allowed to express their individual preferences for health care in advance of receiving medical treatment. This resulted in each state eventually moving to establish evidentiary standards that would determine specific conditions under which patients’ previously expressed treatment wishes would be honored. Consequently, individual state statutes have produced a diverse surrogate nomenclature consisting of a number of interchangeable titles for patients’ representatives, such as health care surrogate, durable power of attorney for health care (DPAHC), health care proxy, or guardian. This language also reflected the varying surrogate duties and processes assigned within each state (Cruzan v. Director, Missouri Department of Health, 1990; Health Care Advance Directives Act, 2009). Initially, research on surrogate activity focused research attention on medical patient decision making (Smeidra et al., 1990) or on patientsurrogate treatment decision concordance to gauge surrogate accuracy in predicting patient treatment preferences (Cogen et al., 1992; Hare, Pratt, & Nelson, 1992; Seckler, Meier, Mulvihill, & Cammer-Paris, 1991). Yet, these early studies produced inconsistent findings and offered little insight into the actual surrogate decision-making process (Engelberg et al., 2005). Instead, they produced an initial view of surrogate performance that persists today: surrogates were ‘‘unreliable’’ patient representatives, and their decisions ‘‘are no better than random chance’’ (Suhl et al., 1994, p. 90). More recent investigations have inquired into amounts and types of preliminary patient-surrogate communications, to move surrogate decision making from its initial presentation of surrogate duties limited to a simple, isolated decision, to a series of complex, multi-tasked responsibilities orchestrated by individuals who represent incapacitated patients (Buckey, 2007; Limerick, 2007; Swigart et al., 1996; Thelen, 2005; Vig, Taylor, Starks, Hopley, & Fryer-Edwards, 2006). Patient-surrogate communication preceding the patient’s need for medical treatment emerged as an instrumental component 30 J. W. Buckey and N. Abell in surrogate decision-making studies. When surrogates knew patient wishes, they were committed to following them; when they did not, surrogates reported high levels of decision conflict and poorer post-mortem adjustments (Buckey, 2007; Carr & Moorman, 2008; Seckler et al., 1991; Wright et al., 2008). Increasingly, examinations of surrogacy have revealed a stressfully complex assortment of tasks. When they knew little about patient care preferences, surrogates displayed an ‘‘insatiable’’ need for information (Abbott, Sago, Breen, Abernethy, & Tulsky, 2001, p. 200), including human physiology, trajectory of patient illnesses, prognoses, and likely responses to treatment (Hiltunen, Medich, Chase, Peterson, & Forrow, 1999; Jacob, 1998; Swigart et al., 1996). Surrogates evaluated patients’ medical and emotional conditions together with prior illness histories, and factored what patients said into their decisions (Abbott et al., 2001; Hiltunen et al., 1999, Jacob, 1998; McNabney, Beers, & Siebens, 1994; Swigart et al., 1996). Less knowledge about patient preferences increased family conflict, surrogates’ personal distress, and number of treatment decisions required (Abbott et al., 2001; Hiltunen et al., 1999; Jacob, 1998; Lautrette et al., 2007). Surrogates may feel both moral and ethical obligations to respect patient treatment wishes, regardless of their personal discomfort (Buckey, 2007; Swigart et al., 1996). Those who honored patients’ wishes reported greater success in post-mortem adjustment, and those who failed to do so reported more problems after the patient died (Jacob, 1998; Lautrette et al., 2007). Surrogates attempted to make decisions congruent with patient, surrogate, and family values, while avoiding decisions likely to increase patient pain or complicate treatment (Abbott et al., 2001; Hiltunen et al., 1999; Jacob, 1998; Vig et al., 2006). Decisions to withhold treatment were often based on patients’ poor prognoses, lack of mental acuity, and adverse reactions to treatment (Cogen et al., 1992; Hare et al., 1992; Layde et al., 1995; McNabney et al., 1994; Smedira et al., 1990). Surrogates were routinely emotionally closer to patients than other family members, and often assumed a role of leadership in the family, expanding their responsibilities to care for other family members prior to, during, and following patient illness. These family leadership skills appeared to expedite decision making and included efforts to bring together family members divided in their preferences for patients’ medical care and treatment (Swigart et al., 1996). Surrogates often view physicians as primary information sources about patient condition and prognosis, leading them to expect physicians to be available and involved during decision making (Engelberg et al., 2005; Lewis et al., 2006). Physician traits, such as availability, openness, and support, enhanced surrogate trust and produced greater adherence to physicians’ treatment recommendations (Abbott et al., 2001; Hiltunen et al., 1999; Jacob, 1998; Swigart et al., 1996). Conversely, and especially regarding decisions to forgo treatment, lower trust levels created greater decision-making difficulty Life-Sustaining Treatment Decisions 31 (Hiltunen et al., 1999; Swigart et al., 1996). Collectively, surrogates’ subjective impressions of patient conditions, combined with information acquired from physicians, medical staff, and family members, aided surrogate decision making while mitigating their distress (Abbott et al., 2001; Jacob, 1998; Johnson et al., 2000; Hiltunen et al., 1999; McNabney et al., 1994; Swigart et al., 1996; Wright et al., 2008). In acquiring reliable information from multiple sources, surrogates made decisions after processing information obtained from patients and significant others; i.e., physicians, nurses, or family members (Hiltunen et al., 1999; Jacob, 1998; Johnson et al., 2000; Limerick, 2007; Swigart et al., 1996; Vig et al., 2006). Incorporating Theory To offset one major omission from prior studies, a conceptual model of surrogate decision making with variables based on relevant theory, the Health Belief Model was designed for this study (HBM; Rosenstock, Strecher, & Becker, 1988). The HBM has previously been applied to gauge individual preventive health, illness, and sick role behaviors and to emphasize readiness to act during periods of uncertainty. Although the HBM has not been applied to the health-related behaviors of persons acting on another’s behalf, the core of this value-expectancy model can be applied to surrogates who anticipate that particular actions taken on behalf of a critically ill patient will achieve a desired outcome. Their evaluation of potential patient benefits and barriers, or disadvantages, associated with treatment choices is central to the Surrogate Decision-Making Model (see Figure 1). For example, surrogates FIGURE 1 Proposed Surrogate Decision-Making Model. 32 J. W. Buckey and N. Abell may experience conflict when instituting a treatment possessing both advantages and disadvantages, such as stabilizing the patient’s medical condition while simultaneously risking greater medical complications resulting from the treatment choice. We also adapted a key group of HBM social cognitive antecedents thought to precede individual surrogate health behaviors and modify factors influencing their action: demographic characteristics (age, gender, education, and ethnicity), sociopsychological attributes and beliefs (emotional closeness to patient and perceived social support), and structural influences (patient and physician communications). Thus, the model represents the interactive, psychosocial approach to surrogate decision making as it acknowledges the social and psychological realities of individual health decision behavior. The variable of self-efficacy was later introduced to enhance the model’s ability to account for greater variation in behavior (Rosenstock et al., 1988). Although self-efficacy had not been incorporated into subsequent HBM model tests as originally proposed by Rosenstock and colleagues, in other models examining health behavior it had historically accounted for as much as 20% of the variance (Abraham & Sheeran, 2000). Thus, we included it here. Physician assessment of other HBM variables, such as threat and susceptibility of severe (patient) illness, is a unique challenge in application of the HBM to surrogate decision making. These HBM variables are portrayed via physicians’ treatment recommendations, thus are not represented by surrogate decisions and were excluded from our model. Overall, the HBM represents an initial, interactive, psychosocial approach to surrogate decision making, reflecting the social-psychological reality of surrogate decision behaviors while incorporating the multiple influences potentially influencing health-related surrogate behaviors within health-related environments (Abraham & Sheenan, 2000). It offers a coherent approach to examine variables identified as being inconsistently measured in the surrogate literature, yet selectively found to influence surrogate decisions (Buckey, 2007; McNabney et al., 1994). METHODOLOGY While existing literature provides an initial profile of influences on surrogate decision making, methodological and conceptual limitations are often unaddressed, raising concerns about the validity of conclusions. George (2002) charges that researchers have failed to apply a uniform definition of surrogacy. Others cite difficulties associated with prospective designs attempting to examine life-threatening treatment conditions before they have actually occurred, versus retrospective studies that risk bias when survivor recall may be clouded by personal bereavement and grief (Addington-Hall & McPherson, 2001). Finally, use and alteration of measurement scales with unknown or unreported psychometric properties compromised internal Life-Sustaining Treatment Decisions 33 and statistical conclusion validity (Cogen et al., 1992; Hare et al., 1992; Smedira et al., 1990; Suhl et al., 1994). As a result, questions remain about the credibility of findings based on questionably measured constructs. An attempt was made to address these and related limitations in our investigation of factors influencing surrogate and proxy decisions about life-sustaining treatments. As a result, this study differs from prior efforts in a number of ways. First, a uniform definition of surrogacy, encompassing multiple statutory definitions of adults functioning in the role of treatment decision maker on behalf of a critically ill medical patient was applied. In this study, surrogacy refers to ‘‘a competent adult who has not been expressly designated to make health care decisions for a particular incapacitated individual, but who, nevertheless, is authorized pursuant to s. 765.401 to make health care decisions for such individual’’ or ‘‘any competent adult expressly designated by a principal to make health care decisions on behalf of the principal upon the principal’s incapacity.’’ These definitions are compatible with the recent Florida Health Care Advance Directives Act (2009, Definitions sections, { 15 and { 16). Second, adhering to recommendations for conducting research on end-of-life decision-making processes directly (Gessert, Curry, & Robinson, 2001), we conducted this study in real time, or while participants were actively engaged in health care surrogate decision making. People currently acting as surrogate and proxy for patients in the ICU=CCU (Critical Care Unit) were surveyed immediately after their decisions about a life-sustaining treatment and, where possible, before those decisions had been acted upon or their outcomes known; i.e., while patients continued to receive care. Thus, methodological concerns associated with the prospective– retrospective study debate were minimized as much as possible. In addition to the conceptual framework described above, also employed were reliable, valid measurement tools; some, specifically developed and validated for use in this study (Buckey & Abell, 2004, 2009). A power analysis determined the required sample size needed to maximize the predictive power of the regression procedures employed (Hair, Black, Babin, Anderson, & Tatham, 2006). Again, the question addressed was ‘‘Did surrogates’ personal attributes, or their perceptions of communications, social support, or self-efficacy directly influence their life-sustaining treatment decisions?’’ Design A real-time, descriptive, cross-sectional survey design was used to assess surrogate values, attitudes, and beliefs immediately after their decisions to initiate, withdraw, or withhold one of four life sustaining treatments: cardiopulmonary resuscitation (CPR), mechanical ventilation, tube feedings (PRN or TPR), or dialysis. We surveyed a sample of surrogates from a diverse, heterogeneous population who were active in their decision-making roles. 34 J. W. Buckey and N. Abell Sample Respondents were adults making life-sustaining treatment decisions on behalf of incapacitated medical (ICU) patients during a current hospitalization, a prior hospitalization (such as with hospice patients), or for advanced Alzheimer’s patients being cared for at home. Surrogates qualified for the study if they had made at least one life-sustaining treatment decision on behalf of a patient and then continued in the surrogate role, and if their patient continued to receive some form of medical care. Facilities were identified where surrogates might be found. One indicator of estimated surrogate activity was the number of hospital deaths, which also included patient age, gender, and race, reported quarterly by state-licensed hospitals to Florida’s Agency for Health Care Administration during the calendar years 2001–2003. Letters were sent to a broad range of hospital and other agency administrators seeking interest in study participation. Of 60 hospitals contacted, 8 administrators expressed study interest; of 18 hospices, 5 were interested, and no responses were obtained from the 55 long-term care facilities contacted. Final sample sites included three hospitals, two hospices, and two Alzheimer’s and Parkinson’s disease support agencies. As the tertiary facilities engaged for this study (described below) maintain no formal records on surrogate action or on the utilization of lifesustaining treatment equipment, random sampling of study participants was not an option. Using a nonprobablity, purposive sampling approach based on the relevant characteristics of this highly specialized population (Henry, 1990), the sample blended respondents from rural with urban communities. Measures We used a combination of researcher-created items and standardized measurement scales to strengthen data reliability and statistical conclusion validity, and to increase the power of statistical tests employed (Tate, 1998). Of the 10 predictor variables represented in Figure 1, 4 were demographic— i.e., surrogate age, education level, gender, race-ethnicity—and 4 were single-item or summated rating scales developed for this study (physician and patient communications, religiosity-spirituality, and emotional closeness to the patient). Existing standardized scales measured the remaining two predictor variables. Social support was measured by the 12-item Multidimensional Scale of Perceived Social Support (MSPSS; Zimet, Dahlem, Zimet, & Farley, 1988), and self-efficacy was measured by an adaptation of the 20-item Healthcare Surrogate Preferences Scale (HSPS; Buckey & Abell, 2004). While the original HSPS was designed to be predictive of self-efficacy (i.e., projecting what one would or could do), this view was modified for this study to ask participants to recall their judgments after the fact, following a surrogate decision. Thus, Life-Sustaining Treatment Decisions 35 respondents had an opportunity to reflect on individual competencies required to conduct their duties while simultaneously evaluating personal beliefs about their role experience, including its tasks and responsibilities. The Acceptance of Treatment Choice Inventory (ATCI), measuring surrogate perceptions of the advantages (benefits) and disadvantages (barriers) associated with evaluating life-sustaining treatment decisions, was used to measure the criterion variable, benefits, and barriers (Buckey & Abell, 2009). As established psychometrics are inherently sample dependent, reliability of all standardized measures were reassessed using Cronbach’s alpha (a) prior to hypothesis testing. Although this study design was primarily quantitative, it also included a single qualitative item, ‘‘Is there anything else you feel we should know about your surrogate experience?’’ Located at the end of the survey, this item provided respondents an opportunity to share personal views on the subject. Data Collection Consent for use of human subjects was obtained from University and facility institutional review boards (IRBs), facility or agency administrators, and=or Boards of Directors. Potential study participants were approached in ICUs, hospice, or community support agency service locations to complete an anonymous, self-report survey about their feelings, attitudes, and beliefs following their decision to initiate, withhold, or withdraw patient treatment. Study participation was confidential and voluntary and the consent process specified a disclaimer that participation would in no way affect patient treatment. Participants were requested not to place personal identifying information protected under HIPPA (1996); i.e., name, patient name, age, bed or room number, or any signature on the survey. Although participants were encountered face-to-face when asked about their interest in the study, after data collection there was no way for the researcher to associate any response with any individual. Participants chose one of three methods of survey return: in person to the researcher or research associates, via facility drop boxes, or by mail. Other than survey completion, no other respondent activity was required. Counseling resources were listed in the packet to address potential respondent emotional reactivity. Several facilities required the researcher to undergo HIPPA (2002) on-site training.The first author conducted on-site training to assist in standardizing data collection procedures for research associates who were recruited from facility staff members. Volunteer research associates were given study background and data collection procedures, including paraphrasing of verbal scripts that were used during surrogate interactions and prior to survey administration. These associates used a verbal script to announce study availability and assess study interest. HIPPA guidelines mandated that only facility 36 J. W. Buckey and N. Abell staff could approach potential participants. After receiving an affirmative response, surrogates were personally presented a survey packet. Staff and potential respondents were familiarized with study procedures. After receiving facility permission to post survey notices within facilities—i.e., in the ICU waiting room, on staff bulletin boards, or in newsletters—the researcher posted notices to publicize the study, ensuring researcher availability during day, evening, and night shifts. Two hundred forty-six survey packets were distributed to potential respondents; 135 usable surveys were returned. The overall response rate of 55% was within the range of rates documented in the literature, from 37% (community mail survey, Hare et al., 1992) to 100% (medical inpatients, Suhl et al., 1994). Data Management Data analyses compared raw data runs using listwise deletion with runs using mean replacement values. As results of all model variables differed notably and yielded greater numbers of statistically significant correlations using mean replacement data, the more conservative, raw data values were used in data analyses (Tate, 1998). The influence of outliers, evident in four variables, resulted in deletion of three cases, yielding the total usable sample of 132. Sample sizes for specific analyses ranged from 105 to 128, each meeting criteria for adequate power in hypothesis testing. Data analyses were performed with SPSS 14.0. RESULTS Respondents The average surrogate age was 58 years (SD ¼ 12.5), slightly less than the average reported age of patients (59 years). Patient ages over 89 (n ¼ 22) were not reportable under HIPPA (2002) privacy regulations. Consequently, actual mean age for patients is unknown, though certainly higher than the figure reported here. Respondents were three-fourths female (78.8%), predominately white (82.5%), and reported 14.2 years of formal education (M ¼ 14.2, SD ¼ 2.89). Gauging themselves to be very religious or spiritual (M ¼ 7.49; SD ¼ 2.22) on a scale from 1 ¼ not at all important to 9 ¼ extremely important, most surrogates (n ¼ 111, or 84.1%) felt extremely to very emotionally close to the patient. Only a minority (n ¼ 5, or 3.8%) reported feeling neutral or distant toward the patient. Spouses were the largest relationship subgroup (n ¼ 49, 37.1%), followed by daughters (n ¼ 47, 35.6%), sons (n ¼ 13, 9.8%), and others (n ¼ 23, 17.5%). Religious affiliation was primarily Protestant, 73 (55.3%), followed by Catholic, 44 (33.3%), and Jewish, 3 (2.3%). Nearly one half of 37 Life-Sustaining Treatment Decisions respondents (n ¼ 64, or 48.5%) withheld or did not begin treatment. Forty (30.3%) initiated treatment, and 28 (21.2%) withdrew treatment. The greatest number of decisions (n ¼ 59, or 44.7%) were about CPR=do not resuscitate orders (DNRs); nearly one third of surrogates (n ¼ 36, or 27.3%) made decisions about mechanical ventilation; nearly one fifth (n ¼ 23, or 17.4%) made decisions about tube feedings. A minority (n ¼ 13, or 9.8%) made decisions about dialysis; only one (.8%) failed to specify a decision. Overall, 104 (78.8%) surrogates strongly agreed with the statement, ‘‘Looking back, I can accept that my decision was the best alternative for the patient.’’ Surrogates reported having dealt with patient illness an average of 36.5 months (SD ¼ 56.2 months); item responses ranged from 1 to 31 years, indicating the time surrogates had been actively involved with patient illness; 7 respondents failed to respond to this item. Cardiac=cardiopulmonary disease and cancer, the two most prevalent surrogate-identified patient diagnoses, paralleled the prevalence of each disease category in the general U.S. population (n ¼ 24, 18.4%, respectively), followed by cerebrovascular disease (n ¼ 17, 12.8%; Centers for Disease Control and Prevention, 2009). Interested readers are referred to Buckey (2007) for more information on surrogate and patient characteristics resulting from this study. Existing and Newly Created Measures Results of existing and new measures of study variables contained in the surrogate decision-making model are shown in Table 1. The MSPSS (Zimet et al., 1988) produced a Cronbach’s coefficient alpha representing scale reliability of a ¼ .943 for social support (M ¼ 5.96, SD ¼ 1.15); the adapted HSPS (Buckey & Abell, 2004), a ¼ .877, for surrogate self-efficacy (M ¼ 6.16; SD ¼ .76). Standard error of measurement (SEM) coefficients were computed as indicators of measurement error for the current sample; for TABLE 1 Measurement of Key Constructs: Patient Communication, Physician Communication, Social Support, Surrogate Self-Efficacy, and Benefits-Barriers Measure and variable Existing measures MSPSS Social support Adapted HSPS Self-efficacy New measures Physician communication Patient communication ATCI Benefits subscale Barriers subscale Benefits-Barriers composite a SEM M SD .94 .27 5.96 1.15 .88 .27 6.16 .76 .92 .91 .56 .42 7.64 8.49 2.02 1.43 .73 .68 .69 .39 .54 .38 6.32 1.95 .88 .76 .98 .68 38 J. W. Buckey and N. Abell the MSPSS, SEM ¼ .27, and for the HSPS, SEM ¼ .27, results well below the threshold value of .3 (5% of 6.0 ¼ .30), thus both variables were retained for model testing (Springer, Abell, & Hudson, 2002). Two new, researcher-created dimensions of surrogate communication variables measured the degree of surrogates’ perception of communication helpfulness, assessing first, whether communication occurred, and if so, the means by which it was shared (verbal or written) between (a) surrogates and physicians, and (b) surrogates and patients. Using a Likert scale where 1 ¼ not very helpful at all, to 9 ¼ extremely helpful, Physician communication (M ¼ 7.64, SD ¼ 2.02) resulted in a Cronbach’s coefficient of a ¼ .922 (SEM ¼ .56); and Patient communication (M ¼ 8.49, SD ¼ 1.43), a Cronbach’s coefficient of a ¼ .913 (SEM ¼ .42). The standard errors of measurement (SEMs) for physician communication were considerably above, and for patient communication only slightly above, the target threshold (.40). The initial validation of the 20-item Acceptance of Treatment Choice Inventory (ATCI), an evaluation of surrogate perceptions of the Benefits and Barriers associated with treatment decision choice, has been detailed elsewhere (Buckey & Abell, 2009). ATCI items combined (a) HBM constructs reflecting the individual costs-benefits analyses thought to occur during individual medical treatment decision making (Rosenstock et al., 1988), and (b) the empirical literature findings that reflected the potentially beneficial or harmful results surrogates associated with treatment decisions (Jacob, 1998; Swigart et al., 1996). Benefits scores (representing advantages surrogates associated with a treatment choice) were assigned positive values; Barriers scores (representing disadvantages surrogates associated with a treatment choice) were assigned negative values, on a 7-point Likert scale, where 7 ¼ very strongly agree and 1 ¼ very strongly disagree. The goal of the final ATCI composite score was to capture surrogate perceptions about whether their treatment decision would improve (produce greater Benefits) or worsen (produce greater Barriers) overall patient and surrogate situations. An overall higher score on the ATCI would indicate surrogates perceived greater advantages associated with a treatment decision; a lower score would indicate greater disadvantages associated with a treatment decision. Final scale analysis mirrored the two originally intended subscales, with a slight modification. The Benefits subscale (M ¼ 6.32; SD ¼ .76) was interpreted as decision support, as final items captured concerns about surrogate perceptions of the various sources of support for a treatment decision. The Barriers subscale (M ¼ 1.95; SD ¼ .98) was interpreted as an inability to act in the patient’s best interest, again reflecting content of items retained in the final analysis. The final Benefits-Barriers (decision support-inability to act) composite variable (n ¼ 117; M ¼ .88; SD ¼ .68; Range: 1.20 to þ2.40) was interpreted as higher scores reflecting surrogates’ perceptions of Benefits (i.e., greater support for surrogate decisions). Lower scores reflected greater perceptions of Barriers. As an example, the highest ATCI composite score, 39 Life-Sustaining Treatment Decisions þ6, indicated that these surrogates (n ¼ 18) perceived greater benefits associated with their treatment decisions, while the lowest ATCI composite score, 1, indicated that this surrogate (n ¼ 1) perceived greater barriers associated with her treatment decision. The subscale reliability for Benefits (decision support; a ¼ .726) was clearly acceptable for individual use, yet the subscale reliability for Barriers (inability to act; a ¼ .690) was marginal. Given the pilot nature of this study and the absence of stronger indicators of the Barriers-Benefits composite construct, we judged the ATCI as acceptable for use in these analyses. The SEM for the Benefits subscale (.39) slightly exceeded the threshold value of .30 (5% of 6.0 ¼ .30), and the Barriers subscale SEM (.54) exceeded the target value. Benefits and Barriers Simple regression was used to test hypotheses between predictor variables and the Benefits-Barriers criterion (see Table 2). After deleting three cases with excessive influence to improve model performance (Tate, 1998), patient communication accounted for 25% of the variance in Benefits-Barriers [R2 ¼ .254, p < .001, F(1,110) ¼ 37.48]. The more conservative adjusted R2, appropriate for comparisons containing different numbers of variables, 2 ¼ :247Þ. These findsample sizes, or both, was essentially equivalent ðRadj ings were consistent with other studies addressing surrogates’ need for patient information, suggesting that surrogates may seek greater quantity and quality of information than patients are willing to provide (Abbot et al., 2001; Covinsky et al., 2000; Hines et al., 2001; Jacob, 1998, Swigart et al., 1996). Self-efficacy accounted for approximately 22% of variance in perceived 2 ¼ :216]. This findBenefits-Barriers [R2 ¼ .223, p < .001, F(1,115) ¼ 32.751; Radj This finding mirrored the conceptual literature on medical decision making but has not been previously reported in surrogate studies. Self-efficacy repeatedly accounts for approximately 20% of model variability when more broadly examining individual health behaviors (Abraham & Sheeran, 2000). Nearly 5% of surrogates’ self-efficacy could be accounted for by 2 ¼ :041]. patient communication [R2 ¼ .048, p < .013, F(1,126) ¼ 6.407 Radj TABLE 2 Bivariate Relationships: Predicting the Impact of Patient Communication and Surrogate Self-Efficacy on Perceived Benefits-Barriers of Life-Sustaining Treatment Decisions Variable Patient communication (n ¼ 112) Self-efficacy (n ¼ 116) Self-efficacy and patient communication (n ¼ 128) B SE B B .379 .790 .100 .062 .138 .039 .504 .472 .220 2 2 Note. R2 ¼ .254 and ðRadj ¼ :247Þ for Patient communication; R2adj ¼ .223 and Radj ¼ :216 for Self-efficacy; 2 and R2 ¼ .048 and Radj ¼ :041 for Patient communication and Self-efficacy.  p < .05.  p < .001. 40 J. W. Buckey and N. Abell Thus, surrogates aware of patient wishes in advance may have greater confidence in performing their surrogate duties, knowing that patients’ wishes were followed. When viewed in conjunction with the statistically significant but relatively small correlation between these variables (r ¼ .220), these findings suggest measurement of separate, but related, constructs (Hair et al., 2006). Using hierarchical multiple regression (HMR) as the procedure of choice for testing conceptual models (Cohen & Cohen, 1983), the less conceptually important variables—in this case, demographic variables of age, education, gender, ethnicity, and religious-spiritual beliefs—enter the model first (Group 1), followed by physician and patient communications (Group 2), and finally, by social support and self-efficacy (Group 3; see Figure 2). Cases assessed in the HMR analysis (n ¼ 105) produced a ratio of cases to predictor variables (9) of approximately 12:1, greater than the minimum 5:1 ratio, but slightly less than the ideal, approximately 15 or 20:1 (Hair et al., 2006). As shown in Table 3, regression of the demographic variables in Step 1 did not significantly predict Benefits-Barriers (R2 ¼ .031). Introduction of physician and patient communication variables in Step 2 was significant (R2 ¼ .153, F ¼ 2.50, F[.05; 7, 97] ¼ 6.36, p ¼ .001) reinforcing the overall strength of the relationship between patient communication and BenefitsBarriers reported in the previous simple regression model. The resulting change in R2 (DR2 ¼ .122) indicated that communication with the patient and physician accounted for approximately 12% of variability in perceived Benefits-Barriers. Lastly, after controlling for the influence of variables previously introduced, social support and self-efficacy were entered into FIGURE 2 Applied Hypothesized Model of Surrogate Decision Making. 41 Life-Sustaining Treatment Decisions TABLE 3 Summary of Hierarchical Regression Initial (n ¼ 105) and Final (n ¼ 104) Surrogate Decision Models: Predicting Perceived Benefits-Barriers Variable Initial model Step 1 Age Education Gender Ethnicity Religiosity-spirituality Step 2 Physician communication Patient communication Step 3 Social support Self-efficacy Final model Patient communication Self-efficacy SE B b .011 .046 .332 .356 .066 .041 .104 .073 .148 .012 .025 .305 .061 .082 .038 .350 .031 .628 .111 .185 .027 .336 .067 .155 .362 .391 B .004 .047 .238 .501 .008 .291 .673 2 Note. Step 1: R2 ¼ .031; Radj ¼ :018. DR2 ¼ .031. 2 ¼ :092. DR2 ¼ .122. Step 2: R2 ¼ .153; Radj 2 Step 3: R2 ¼ .252; Radj ¼ :181. DR2 ¼ .099. 2 Final regression model: R2 ¼ .381. Radj ¼ :322. DR2 ¼ .140.   p < .05. p < .001. the model in Step 3. This resulted in a statistically significant R2 ¼ .252 (F ¼ 3.56, F[.05; 9, 95] ¼ .718, p ¼ .001). The DR2 ¼ .099 (9.9%) in the final step indicates that social support and self-efficacy increased the explanatory power of the model by an additional 10%. Post hoc diagnostics improved the fit of the regression model and resulted in statistically significant coefficients showing no multicollinearity concerns (Hair et al., 2006). Final model results, improved by deletion of one influential case (N ¼ 104), are shown in Table 3. The final model chan2 (from .181 to .322), and DR2 (from ged as follows: R2 (from .252 to .381), Radj .099 to .140). Of particular note were changes in the final model in Step 2, in which patient communication and self-efficacy explained 12.5% and 12.4% of surrogate decision making, respectively. Thus, surrogate communication with patients, and surrogate knowledge of and functionality in their roles, accounted for approximately one quarter of the variability in surrogates’ perceptions of Benefits and Barriers associated with their treatment decisions. Our preliminary power analysis supported testing simple and multiple regression R2 coefficients of medium effect size (ES ¼ .15) considering all variables entered into the hierarchical model. But as indicated by the final 2 ¼ :322Þ, the overall study effect coefficient of determination, R2 ¼ .381 ðRadj size is relatively large, given typical effect sizes in the social sciences literature that range from .25 to .50 (Cohen & Cohen, 1983). 42 J. W. Buckey and N. Abell DISCUSSION Study findings underscore the importance of early communications between patients and their surrogates in enhancing surrogates’ understanding of patient treatment preferences (Gutheil & Heyman, 2005; Karel, Powell, & Cantor, 2004). Consistent with previous research, surrogates in this study were aware of patient preferences, and they attempted to comply with them when making ‘‘tough’’ decisions (Buckey, 2007, p. 157; Jacob, 1998). Accordingly, this advanced understanding of patient wishes enabled them to carry out excruciating, emotionally painful life-and-death decisions reflecting their knowledge of ‘‘what Mom wanted’’ (Buckey, 2007, p. 140). Following patient treatment directives not only provide surrogates a degree of personal gratification and emotional relief, but may bring closure to a highly emotional, stressful life experience, a closure enhanced by acceptance of the decision made, regardless of patient outcomes. Reflecting on their personal acceptance of decisions made under real time conditions, the majority of surrogates in this study (98%) felt they made the best decision possible, a decision that they and others can ‘‘live with’’ (Buckey, 2007, p. 158). Conversely, when knowledge of patient preferences for treatment is unknown, unclear, or inadequate, surrogates had to rely on additional factors, including theirs and others’ values and preferences for patient treatment (Lewis et al, 2006; Limerick, 2007; Vig et al., 2006). The impact of this lack of knowledge was articulated by one respondent, age 54, acting on behalf of her husband, age 57, who openly admitted, ‘‘We’d never talked, so I didn’t know what to do.’’ (Buckey, 2007, p. 141). Concerns associated with fulfilling the surrogate role included its pragmatic-introspective nature, which we termed the head-heart dilemma, one characterized by internal logical versus emotional struggles. Headrelated activities, captured by HBM value expectancy theory, included logical thought processing and its follow-through, acting on patient wishes in order to attain the desired patient treatment decision (Limerick, 2007). One respondent separated her actual treatment decision from its personal repercussions, identifying the most difficult part of her surrogacy as ‘‘watching them go, even though I knew it was what she wanted and she was ready’’ (Buckey, 2007, p. 134). One respondent (who happened to be a health care professional) indicated she did ‘‘a little magical thinking’’ in deciding her mother’s treatment, acknowledging, ‘‘Being a health care professional doesn’t make these decisions any easier’’ (Buckey, 2007, p. 134). As the limited availability of end-of-life quantitative measures unique to surrogate needs have inhibited progress in end-of-life investigations (George, 2002; National Institutes of Health [NIH], 2004), the attempt in this study to capture two variables—self-efficacy and benefits and barriers associated with treatment decisions—offer end-of-life researchers a possible Life-Sustaining Treatment Decisions 43 beginning for reliable, valid measurement of surrogate decision activity. As a new variable in the surrogate decision literature, surrogate self-efficacy may expand surrogate investigations through its representation of inherent complexities in the surrogate role. The HSPS (Buckey & Abell, 2004), developed early in this research agenda, provides a reliable, valid measurement tool specifically to assess self-efficacy in the context of surrogate decisions. Preliminary scale items associated with treatment decisions developed for the ATCI (Buckey & Abell, 2009), such as rallying family support, obtaining information from others, and inward reflection on considerations leading to a final treatment decision, mirrored conceptual themes in other studies (Limerick, 2007; Swigart et al., 1996). Lastly, we have piloted evaluation of benefits and barriers perceived by surrogates. This promotes greater reliance on conceptual literature regarding surrogates’ evaluative process, previously unaddressed in quantitative investigations. Even with attention to selection of a rigorous measure such as the MSPSS subscales identifying sources of support: family, friends, and significant others (Zimet et al., 1988), the social support variable did not emerge as statistically significant, accounting for less than .8% (sr2 ¼ .008) of the DR2 ¼ .099 reported in the HMR, Step 3. Prior studies identified family and others as sources of guidance during decision making (Abbott et al., 2001; Cogen et al., 1992; Hiltunen et al., 1999; Jacob, 1998; Smedira et al., 1990; Swigart et al., 1996). Considering the strong showing of ATCI items identifying surrogates’ influence from and connection with others in treatment decisions, this finding was surprising. Although a positive relationship did emerge between social support and benefits (r ¼ .245, p < .001), it may be that surrogates view support or guidance obtained during decision-making deliberations as a benefit; and beyond family and friends, investigators have not acknowledged ICU health care professionals (i.e., physicians, nurses, social workers, pastoral care) as sources of such support (D. Heyland, personal communication, November 3, 2006). Future research should attempt to define and clarify the potential role of social support by conceptualizing help received from formal care providers. Limitations Access to only three tertiary care facilities—one, a major University teaching hospital, along with the Hospice and service agencies (Alzheimer’s and Parkinson’s Association)—was a limitation (small sample size). Two hospitals declined participation primarily due to concerns about researcher contact with surrogate representatives at such an emotionally volatile time, a concern echoed one facility ethics committee. Administrators felt that engaging with researchers at such a critical time in the patient’s and surrogate’s experiences would adversely affect family responses on patient satisfaction surveys; thus 44 J. W. Buckey and N. Abell they declined participation. It should be noted that researcher restriction by facility administrators was identified as a barrier to conducting end-of-life research in the first National Institutes of Health End-of-Life Consensus Report (NIH, 2004). Social work researchers pursuing surrogate decision research should be aware of, and prepared to deal with, potential facility resistance. However, our experiences in this in vivo study, conducted while surrogates exercised the duties of their role, indicated that such concerns may be unwarranted. It was only after speaking with one emotionally distraught surrogate who declined participation that we discovered that a research associate had, in violation of study protocol, inappropriately approached the surrogate prior to his treatment decision, rather than afterward. In contrast, one mother-daughter couple expressed appreciation to us for compiling a survey, thus allowing them to reflect and affirm their decision to withdraw their loved one from the ventilator per his wishes. Another limitation of this study was the occurrence of Terri Schiavo’s death (March 2005), midway through data collection. This unforeseen event was accompanied by excessive media coverage of which participants were almost certainly aware, and posed a major threat to the internal validity of our study (Pedhauzur & Schmelkin, 1991). A visible spike in survey returns nearly tripled submissions in the 2 weeks prior through the 2 weeks following Ms. Schiavo’s death, as her life-and-death struggle precipitated international attention and heightened awareness of moral and ethical dilemmas associated with surrogate decisions. This study was conducted in Florida. Consequently, all methodological and applied issues drawn from the data are circumscribed by Florida statute (Health Care Advance Directives Act, 2009). Generalizations can only cautiously be made to other settings, though it is our belief that the broader issues regarding surrogate decisions; specifically, the evaluation of the presenting benefits and barriers that are the emphasis of this study, are more readily generalizable than particulars of law or title. Despite these limitations, this study produced meaningful results. In addition to the new measures noted above, the findings also provide support for more intensive study of the underlying surrogate decision-making process, specifically investigating factors relevant to making, and making peace with, surrogate decisions. Our findings also support expanding measurement of the types and nature of patient-surrogate communication, highlighted as a need in the NIH (2004) report. Implications for Social Work Practice With previous research findings indicating a lack of surrogate awareness of and preparation for assuming their roles (Bern-Klug, Gessert, & Forbes, 2001; Moorman & Carr, 2008), the finding that increased surrogate Life-Sustaining Treatment Decisions 45 self-efficacy enhanced perceived benefits associated with surrogate decisions can serve to guide social workers as they help surrogates prepare to carry out their dual responsibilities. These include communicating with patients to learn and understand patients’ treatment preferences and implementing those preferences when patients become unable to do so. As surrogates in this study affirmed, with little or no advance knowledge of patient preferences, surrogates cannot represent patients accurately. Therefore, social workers might begin by assessing surrogates’ knowledge of patient treatment preferences early, at minimum, upon patient entry into the critical or intensive care unit, especially if patients are in imminent danger of losing consciousness=capacity for decision making. Initially, as in any crisis situation, social workers can assess and corroborate surrogates’ knowledge about patient care preferences during initial patient admission, or when patient transfer to ICU=CCU is anticipated or occurs. Secondly, social workers can increase or enhance patient-surrogate communications, if indicated. Interventions should target enhancing or clarifying previous and current communications, especially for surrogates entering the ICU=CCU situation and who have little knowledge of patient care preferences and for patients who remain communicative and cognizant of their surroundings. Doing so may establish a more secure base of information for surrogates’ future use. As patients’ treatment needs intensify over time, having clarified surrogate understanding of patient preferences in the beginning may prove useful. Social workers can also develop strategies to address surrogate communication difficulties. If the patient is noncommunicative, the surrogate’s or family’s recounting of the most recently expressed patient treatment preferences may also aid in making future treatment decisions, especially should the most recent preferences change in the case of a marked physical decline, such as an increase in patient pain or discomfort. Social workers listening to surrogates’ narratives about patients’ life histories and lifestyles may offer yet another method to prepare surrogates to examine an eventual, but currently unstated question, ‘‘What would Mom want?’’ in a supportive, reassuring way. Finally, social workers can enhance surrogate knowledge of patient preferences through tapping into the knowledge of others. For surrogates with extended family support systems, social workers can encourage surrogates to marshal their resources, notifying significant others in the patient’s life who are available and willing to support the surrogate during patient care and in making difficult future decisions. As an estimated 90% of patients die after decisions to withhold or withdraw treatment (Truog et al., 2001), the surrogate role is often complicated by a debilitating level of emotional and physical stress. Surrogates in this study reported being overwhelmed with the multiple tasks expected of them. Social workers can serve as liaisons between health care providers and surrogates—providing concrete, updated patient information; supporting 46 J. W. Buckey and N. Abell surrogate emotional, physical, and psychological well-being through direct services; and advocating for provision of appropriate collateral services, specific interventions, or referrals for follow-up care. To address these potential voids in surrogate self-efficacy during face-to-face interviews, social workers can topically explore surrogates’ understanding of their duties. In our highly mobile society, surrogate representatives may arrive at the patient’s bedside from across the country or around the world; thus, an assessment and orientation of the surrogate’s understanding of what decisions may be expected and when they would most likely occur can inform both surrogate and social worker of any knowledge or information gaps to be addressed. Filling these gaps might include sharing printed materials or online resources on topics including surrogate duties, state statutory requirements, and facility rules, regulations, or procedures that will influence surrogates’ abilities to carry out their duties. Other examples to increase knowledge of surrogate role functioning may include provision for independent education, such as online resources, available through individual or facility resources, or overnight accommodations near the patient, or ICU=CCU quiet rooms designed to support family members. As relationships are established, social workers may explore preparatory, ‘‘What if?’’ scenarios in surrogate discussions, or offer to help rebuild connections with distant family members. As members of interdisciplinary health care teams, social workers excel at facilitating communications (Black, 2005). Helping surrogates develop relationships with medical or health care facility staff, supporting contact among them, and providing surrogates clear, concrete information needed for making treatment decisions can be crucial in the environments of most fast-paced medical treatment facilities. Responding to surrogate needs can extend traditional social work services into a realm that benefits surrogate and patient partnerships through critically important communication and education. By assessing and expanding what surrogates know about patient preferences early in the patient’s critical care regimen, social workers can assist surrogates to clarify and articulate their understanding of patient care preferences prior to the time a surrogate decision is needed. During this process, social work efforts can focus on preparing surrogates for subsequent complex decisions, thereby averting future unnecessary or unwanted medical care and its associated costs. Thus, social work interventions can simultaneously clarify and educate surrogates on the expectations associated with the surrogate role, while continuing to assist and support surrogates during decision making in the critical care environment. This study reinforces that advanced knowledge of patients’ explicit treatment preferences guides surrogate treatment decisions, even in the face of personal surrogate distress and hardship. The degree of importance surrogates attached to honoring patient wishes was reflected in the significance of Life-Sustaining Treatment Decisions 47 the patient communication and self-efficacy variables. The emerging benefits-barriers variable pointed to a greater reliance on theory to capture surrogate evaluations of treatment options. 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Journal of Personality Assessment, 52, 30–41. Copyright of Journal of Social Work in End-of-Life & Palliative Care is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. Education: A Complex and Empowering Social Work Intervention at the End of Life fohn G. Cagle and Pamela f. Kovacs Education is a frequently used social work intervention.Yet it seems to be an underappreciated and a deceptively complex intervention that social workers may not be adequately prepared to use. Reliable, accessible information is essential as it helps prevent unnecessary crises, facilitates coping, and promotes self-determination.This article conceptualizes education as a fundamental social work intervention and discusses the role social workers play in providing information that is both empowering and culturally sensitive. In particular, this article focuses on social workers working with patients and faniihes facing life-threatening situations, including those in hospice and other end-of-life care settings. After reviewing the relevant literature and theory and exploring the inherent complexities of educational interventions, the authors recommend strategies for more effectively helping patients and families access the information they need. KEY WORDS: death and dying; education; end of life; empowerment; health literacy; informational support A s in most practice environments, social workers in health care settings often assume the responsibility of providing information to patients and family members.This is particularly important when patients and their families are coping with the prospects of a life-threatening diagnosis (Adler, 1989; Deja, 2006) .The role of educator seems a suitable one for practitioners because the effective exchange of reliable information promotes client empowerment and self-determination (for example, Bern-Klug, 2004; Lee, 1996). Unfortunately, social workers and other health care providers frequently undervalue education (Christ & Sormanti, 1999; Rabow, Häuser, &c Adams, 2004), overlooking its complexity and viewing it as a simple, nontherapeutic, and, perhaps, mundane task (Makoul, 2003). Skill and compassion are needed to convey salient health-related information when patients and families are trying to understand what it means to face a life-threatening illness (Csikai & Bass, 2000; Rabow et al.,2004;Rose, 1999).Furthermore,research suggests that many social workers feel underprepared to provide patient and family education on end-of-life issues (Christ & Sormanti, 1999; Csikai & Bass, 2000; Kovacs & Bronstein, 1999). As Kubler-Ross (1969) wrote in On Death and ifîg, "The question is not should we tell... ? but CCC Code: 0360-7283/09 $3.00 O2009 National Association of Social Workers rather 'How do I share this with my patient?'" (p. 28). A deeper appreciation of how information is exchanged between practitioners and clients is important because, at some point in their practice, most health care social workers will encounter end-of-life issues (Csikai & Bass, 2000). Whether they work in a dialysis clinic, rehabilitation center, extended care facility, hospice, or hospital, social workers will likely come across patients who are coping with lifethreatening health conditions. These illnesses may be recently diagnosed—marking the beginning of the end of life—or may be in the later stages. Social workers should be knowledgeable not only about what informational content is needed, but also about the inherent complexities and barriers involved in the education process. Otherwise, a well-meaning practitioner might unknowingly undermine patient self-determination and empowerment or might neglect key contextual factors that influence how information is processed and understood. The purpose of this article is to conceptualize education as a fundamental, yet complex, social work intervention when working with individuals who are confronting end-of-life issues and to discuss the role social workers can play in helping patients and families access the information they need in a way that is both empowering and 17 culturally sensitive. To do this, we summarize the related literature; illustrate that education is a wellestablished, theory-based social work intervention; identify the potential benefits of education; highlight the major sources of complexity related to the effective use of education; and discuss ways for social workers to help negotiate these complexities. Our focus centers on the nature of the educational dialogue that needs to take place at the end of life. We address general principles that may be applicable across a variety of practice settings, regardless of where patients are in their experience with an acute, chronic, or terminal condition. In addition, we provide implications for social work practice and education. EDUCATION AT THE END OF LIFE: A ROLE FOR SOCIAL WORK Although providing educational support at the end of life is recognized as an interdisciplinary team responsibility (Sheldon, 1998), social workers are often entrusted with this role (NASW, 2003). According to the National Hospice and Palliative Care Organization (Hay & Johnson, 2001), education is considered a core clinical intervention for social workers who work with terminally diagnosed individuals and their families. Similarly, Miller and Walsh (1991) identified patient and family education as a primary role of social workers in end-of-life care settings. This role often dovetails with the educational support provided by nurses, physicians, and other interdisciplinary team members. By reiterating and clarifying important content, evaluating the effect of such communication, and filling information "gaps," social workers, in concert with others, can help families access the information they need in an understandable way (Deja, 2006).By educating individuals and their families about relevant end-of-life issues, social workers serve as "context interpreters" (Bern-Klug, Gessert, & Forbes, 2001), Health care social workers help families put pertinent information into context and deal with feelings evoked by the information. In addition,"most people who are dying—or at increased risk of dying—benefit from a'big picture'perspective of the end-of-life journey they are making, including discussions about the possible paths to dying and death" (Bern-Klug et al.,20Ól,p,44), Social workers also have a professional obligation to minimize communication barriers within the health care system because ensuring that patients 18 and families are adequately informed is a prerequisite for client empowerment and self-determination. In other words, to facilitate autonomous decision making, patients and families must understand their options, have access to the necessary information, and not feel pressured or coerced. The exchange of information is essential for establishing informed consent for medical care, fostering adaptive coping strategies, and preventing unnecessary crises. Thus, rather than an ancillary task, patient and family education should be a priority for practitioners. Patient and family education should always begin with a good biopsychosocial—spiritual assessment. It is important to recognize what type of information is needed and desired as well as the timing and manner in which the family wants to receive it. Of course, a comprehensive, individualized assessment involves more than a simple checklist of risk factors. Rather, it strives to uncover the patient and family's experience and unique story (Baker, 2004; Richards, 2000). Permitting time for people to share their narratives about the illness serves multiple purposes. It often provides health educators with essential and meaningful information, while allowing the storytellers to have control over their own narratives (Makoul, 2003; Richards, 2000), Practitioners can elicit feedback about whether individuals are ready for health-related information and the preferred format. Moreover, social workers can explore how individuals understand the information they have received and can help identify hopes, goals, expectations, and fears. Facilitating an assessment dialogue can and should allow individuals the opportunity to explain the circumstances of the illness and its meaning within the family context (Sheldon, 1998; Taylor-Brown, Blacker, Walsh-Burke, Christ, & Altilio,2001), During the assessment, social workers should also discern what type of education is needed and desired as the information needs of caregivers often differ from the needs of patients (Clayton, Butow, & Tattersall, 2005) ,The preferred timing, amount, and content of information vary greatly among family members and other informal caregivers (Fallowfield, 2004; Rose, 1999), Aoun and colleagues (2005) reported that caregivers desire information on topics such as how to provide hands-on patient care, how to relieve patient distress, expected emotional reactions of both patient and caregiver, and ways to access medical services and equipment. They may also want a deeper understanding about the Health & Social Work VOLUME 34, NUMBER I FEBRUARY 2009 meaning and circumstances surrounding the illness (Bern-Klug et al, 2001; Rose, 1999). Some patients and families may prefer that these care-related issues be discussed primarily with the caregivers to avoid creating undue anxiety for the patient. However, in other families, it may relieve anxiety for the patient to be involved in these discussions (Clayton, Butow, &Tattersall,2005). A THEORY-BASED INTERVENTION The role of educator is recognized in health social work as an integral part of illness prevention and health promotion (Dhooper, 1997). Education is a fundamental, theory-supported social work intervention and a vital strategy when working with individuals and families at the end of life (Hay & Johnson,2001).A few theories that frequently guide social work practice and conceptualize education as a valued intervention are described in the next sections and ego psychology, cognitive, behavioral, empowerment, and crisis theory. Ego Psychology This theory focuses on the role the ego plays in negotiating between internal needs and the demands of social living (J.Walsh, 2006). Much of the focus is on peoples' coping strategies for dealing with situations that induce anxiety. This theoretical approach proposes five techniques that are ego supportive and two that are ego modifying; education is one of the five ego-supportive techniques (Goldstein, 1995). In many health care settings, this might involve content about the dying process, caregiving roles, hospice, or other palliative care services. More specifically, people may want information about their diagnosis, prognosis, medication and treatments, advance directives, and the disease process in general. Education about family and group dynamics helps individuals consider the effects of their behavior and life situation on others, such as their family, friends, and health care team members.The more concrete and perhaps obvious role for the educator is to inform families about available resources and services and hovi? to negotiate health care and other external systems.Within ego psychology, education facilitates options for change and assists with problem solving by increasing a person's "fund of knowledge" and his or her level of insight 0. Walsh, 2006). Thus, educative techniques can be a critical source of support to patients and families living with a lifethreatening illness. Cognitive and Behavioral Theories Practitioners using these theories address problematic thought processes and behaviors that lead to depression, anxiety, phobias, obsessive thoughts and behaviors, or any other symptoms that complicate lives and relationships. Education is a central part of cognitive and behavioral work, teaching patients and family members about their erroneous beliefs, automatic thoughts, maladaptive schemata, and, most important, the process for change (Beck, 1995). In the framework of behavioral theory, educational interventions focus on five domains of behavior: social, environmental, emotional, cognitive, and physical cues Q. Walsh, 2006). People are taught about the relationship between cues, behaviors, and consequences. For example, a social worker may help a caregiver tactfully confront cognitive distortions, such as "if she would just eat, everything would be fine." Both understanding that appetite diminishes when the body is shutting down and helping the caregiver find alternative ways to "nourish" his or her loved one involves the gentle confrontation of past ways of thinking. Empowerment Theory We refer in our title and throughout the article to the importance of empowerment. This "theory" is probably better characterized as a social work practice approach rather than as a formal practice theory. Regardless, it remains a core social work value (Lee, 1996). Empowerment may be especially relevant when working with seriously ill people. As people who are dying become weaker and begin to retreat from life, our interactions with them need to maximize their involvement in decision making. Perhaps unintentionally, the pace and intensity of our health care system often overwhelms and disempowers even the most well-prepared patients. Consequently, educating patients and their caregivers about rights, resources, the health care system, and what is happening to them, enhances the potential for empowering, holistic, and ethical care (T.Walsh & Lord, 2004). Small and Rhodes (2000) suggested that adequate access to information can help counteract some of the disempowering aspects of serious illness. Using this perspective, social workers can incorporate a "bottom-up" model that fosters client strengths, encourages a sense of control, and fosters an equal exchange of information (Ingersoll-Dayton, Schroepfer, Pryce, &Waaral,2003). CAGLE AND KOVACS / Education: A Complex and Empowering Social Work Intervention at the End of Life 19 an open dialogue about peoples' educational wants and needs can benefit them by fostering coping strategies, promoting self-determination, thwarting preventable crises, and reducing health care costs. In the context of end of life, crisis theory may actually be most relevant when it becomes clear that the person is not going to get better or at what may be the beginning ofthe end Coping Much of the research exploring the benefits of educational support to families is based on the premise that information facilitates the coping abilities of patients and caregivers (for example, Pickett, Barg, & Lynch, 2001). A lack of clear communication and limited access to information are known barriers to family support (Aoun et al., 2005). In addition, providing information on the projected disease course may lessen fears, increasing a sense of predictability (Aoun et al., 2005). On the other hand. Parry (1990) suggested that communication of sensitive information has the potential, in some cases, to attenuate patient and family guilt, shame, or other feelings of inadequacy. oflife. Crisis Theory Social workers call upon crisis theory frequently in their work with people coping with life challenges (J. Walsh, 2006). A crisis is complex and personal, yet some aspects are universal. The Chinese have no single character for our equivalent of the word "crisis." To address the complexity of this concept they combine the characters for "danger" and "opportunity" (James & GiUiland, 2001). We maintain that education can help a person maximize the opportunities (for example, for emotional and spiritual growth, time with loved ones, and participation in decision making), while minimizing the dangerous aspects of the situation (for example, social isolation, withdrawal, or "unfinished business"). In crisis, a Stressor may be biological, such as a major illness; interpersonal, such as a sudden loss or threat to a relationship; or environmental, often related to natural disasters or human-made disasters that could include loss of employment, home, and other norms. Life-threatening and terminal illnesses present some or all of these Stressors. In the context of end oflife, crisis theory may actually be most relevant when it becomes clear that the person is not going to get better or at what may be the beginning ofthe end of life. Providing information about the illness, its effect on family caregivers, and resources to help support the patient and family physically, emotionally, and financially can mollify potential crises, while allowing for growth, meaning making, and the strengthening of relationships. THE BENEFITS OF EDUCATION Educational interventions by social workers and other health professionals are known to benefit clients in a number of ways. Although appropriate topics for an educational discussion will vary from situation to situation, people tend to want details • about their illness and care options to help them feel more in control. Patients often desire health-related information after receiving a life-threatening or terminal diagnosis (Proot et al., 2004). Facilitating 20 Related to coping is preparedness (Rabow et al., 2004), a multidimensional construct incorporating medical, psychosocial, spiritual, and practical dimensions of one's unique situation. Steinhauser and colleagues (2001) surveyed and interviewed health care providers, patients, and family members to better understand the role and dimensions of preparation at the end of life. Components related to preparation include naming someone to make decisions, understanding what to expect about one's physical condition, putting financial matters in order, knowing one's doctor is comfortable talking about death and dying, feeling the family and the patient are prepared for the death, and having funeral arrangements planned. Providing information is an integral part of each of these components of preparedness. Informational support is another way of framing this educational experience. A form of social support, informational support (that is, informing a person about ways to manage a problem and cope with the related stress in a manner that enhances one's perception of control) is highly correlated with emotional support (Krohne & Slangen, 2005). Studies of cancer patients have highlighted the desire for individualized informational support using Internet-based resources (Shapiro, Coyne, & Kruus, 2004) and the importance of both tangible (for example, books, pamphlets. Web sites, or selfhelp groups) and interactive informational support in patient-physician interaction (Maly, Leake, & Silliman, 2004). Health dr Social Work VOLUME 34, NUMBER 1 FEBRUARY 2009 Self-Determination Promoting client self-determination is an essential part of contemporary social work practice. Social work scholars have advanced the argument that to preserve client self-determination at the end of life, dying patients (or their designated proxies) must have access to reliable information so they can make sound, well-educated decisions about their care. As Beauchamp and Childress (1994) suggested, individual choice is meaningless without good information. Respecting a patient's decisions is especially important when working with terminally ill individuals, because maintaining a sense of control is consistently reported as one of the primary concerns voiced by dying patients (Proot et al, 2004). From an empowerment perspective, patients should be viewed as active agents rather than empty vessels waiting to be filled with expert knowledge (Lee, 1996). When seen as knowledgeable participants, patients are better able to assess their own educational needs and preferences. Ideally, providing concrete information about available services, equipment, professional roles, practical limitations, and realistic expectations would help maximize independence and control. This may be more difficult than it sounds, however. Even in the best of situations, people have difficulty taking in all of the details related to diagnosis and prognosis.This process is often compounded by the emotional overlay of hearing information one does not want to hear or may not understand (Stoneberg & von Gunten, 2006). In addition, as Powazki and Walsh (1999) reminded us, many terminally iü people, especially those in the advanced stages of their illness, may lack the emotional or cognitive capacity to make an informed choice. When this occurs, social workers should identify and consult advance directives and the patient's surrogate decision maker regarding what is known about the patient's wishes. Crisis Prevention In addition to promoting self-determination, education can help some patients and families avoid unnecessary distress. The delivery of sensitive information can increase a family's sense of control, minimizing the likelihood of a perceived crisis (Grbich, Parker, & Maddocks, 2000; Tringah, 1986). If patients and faniily members have some indication about what to anticipate given their diagnosis, prognosis, and care options, practitioners may help them prepare for possible contingencies. Reduced Costs Preparatory education not only helps minimize patient and family crises, but also can reduce health care costs by minimizing preventable "false alarms." This might help explain why the presence of a social worker during hospice intake visits appears to reduce overall health care costs (Reese & Raymer, 2004). In addition, when social workers were present during the initial admission visits, patients had a higher quality of hfe, staff retention and satisfaction were higher, the number of hospitalizations dropped, and families required fewer on-call visits (Reese & Raymer, 2004).These correlates may be the result, in part, of good educational interventions that have the potential to reduce anxiety, provide family support, and prevent foreseeable crises. THE COMPLEX PROCESS OF PROVIDING EDUCATION Although the benefits of providing education to patients and their families are generally recognized, the inherent complexities of doing this effectively are less clear.When considering the educational desires and needs of patients and families, social workers face multiple challenges in areas such as those explored in the following paragraphs: cultural variation, cognitive status, health literacy, patient and family expectations, emotional responses, practitioner bias, and the unknown. Cultural Variations Personal views about illness, caregiving, dying, and death are shaped by, among other things, one's cultural background. An individual's unique social and cultural experience often determines rules or norms about when, where, and with whom it is appropriate to discuss end-of-life issues. Depending on a person's cultural orientation, conversations about advance directives, diagnosis, and prognosis may be considered unapproachable Qennings, Ryndes, D'Onofrio,&Baily, 2003). Others might believe that patients should be protected from this information. Some cultures believe discussing such issues could bring about negative outcomes. For example, some Chinese cultures hold fatalistic beliefs that openly talking about a patient's illness or death will bring about unfortunate events (Braun, Tanji, & Heck, 2001).This underscores the importance of a culturally informed and sensitive assessment early on. Many cultures make health decisions within a family or community context rather than on an CAGLE AND KOVACS / Education: A Complex and Empowering Social Work Intervention at the End of Life 21 individual basis. The notion that patients should be in control of their care options is a Western phenomenon and may not make sense to those unfamiliar with these culturally based assumptions (Jennings et al, 2003; Koenig, 1997). Because the NASW Code of Ethics (2000) charges practitioners with advancing client self-determination, this clash of cultural perspectives may create a difficult professional paradox. As Taylor-Brown and colleagues (2001) phrased it,"one dilemma that often confronts health care teams is reconciling autonomy and respect for self-determination with a family's cultural traditions" (p. 6). Dean (2001) referred to this as a "paradoxical combination of two ideas—being'informed' and 'not knowing' simultaneously" (p. 628). Social workers should, instead, honor and explore the unique cultural expectations of each family and realize that, even within the same family, different expectations may exist. This reinforces the notion that family assessments and educational interventions should be individualized and conducted with respect, impartiality, and a deep interest in understanding each person and family. In short, health care workers should not presume they know what is best for a patient on the basis of their membership in a particular ethnic group or social class (BernKlug, 2004). In fact, we must acknowledge that we do not know, and then set out to learn from each patient and family. Cognitive Status Another complicating factor is that a patient's cognitive status often changes during the course of care. Whether because of normal disease progression, sedation, or emotional distress, an individual's competence and capacity may fluctuate or deteriorate over time. Caregivers may also have a diminished ability to absorb educational content, as a caregiver's capacity may be compromised by stress and fatigue. Because most empowerment efforts focus on individuals who are cognitively aware (IngersoU-Dayton et ah, 2003), the challenge is to figure out how to best facilitate empowerment when decision-making capacity is compromised. Also related to cognitive status, another consideration for practitioners is the developmental stage of those involved, especially when dealing with children and adolescents. Unfortunately, this important topic is beyond the scope of this article, but for a summary of contemporary approaches to helping children cope with a parent's life-limiting illness see Christ and Christ (2006). 22 Health Literacy Recent research on public health literacy highlights concerns about the exchange of medical information between health professionals and care recipients. The federal public health initiative. Healthy People 2010 (2005) defines health literacy as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions" (p. 11). In essence, the health literacy movement is concerned with how well patients acquire, comprehend, and act on available health information. Nearly one-fifth of the American public is functionally illiterate (Kirsch, Jungeblut, Jenkins, & Kolstad, 1993) .Thesefindingswere based on measures of general literacy, not health-related literacy specifically. Estimates of those with compromised health literacy are probably much higher because medical terminology is often jargon rich, Latin-based, and full of confusing acronyms. Unlike other easily observed barriers to patient education, health illiteracy is invisible.Therefore, social workers and other health professionals should evaluate each individual's unique literacy level, interest in accessing information, and cognitive-developmental status (Sheldon, 1998; Stoneberg & von Gunten, 2006). Although some people will continue to prefer that their health care professional handle the details, there is a strong consumer movement to engage lay people in their health care information and decisions (Healthy People 2010, 2005). Patient and Family Expectations Although the public is becoming increasingly better informed about end-of-life care, myths still abound. Bern-Klug (2004) advised social workers to encourage patients to discuss the assumptions and expectations they hold about their disease and available care options, honoring the family's cultural beliefs and traditions. Good information may dispel some unrealistic and potentially detrimental assumptions about the dying process (Bern-Klug et al.,2001). In this way,practitioners can help families develop realistic expectations. For instance, social workers can address some of the common myths about palliative care and align expectations within the bounds of what service providers can actually provide. One such myth is that admission into hospice care implies giving up hope. In these cases, social workers can work with families to reframe the meaning of "hope"from hope for a cure (which Health & Social Work VOLUME 34, NUMBER i FEBRUARY 2009 may be unrealistic) to hope for comfort and dignity in the remaining days of one's life. Paradoxical expectations can also complicate educational interventions. Individuals may hold conflicting beliefs about their own information desires and needs. Some terminally ill patients hold discordant beliefs about the amount and type of information they want (Kutner, Steiner, Corbett, Jahnigen, & Barton, 1999), Patients often struggle between wanting to know as much as possible and wanting to hear only good news. If unaddressed, such conflicting desires can produce an upsetting double bind for patients and an awkward, complicated situation for practitioners trying to relay accurate information. Family members may have different levels of preparedness regarding prognostic information, calling for an open-ended approach that helps individuals adjust in their own unique w^ay. Patients and families can become empowered to regulate the timing and amount of information they receive. Therefore, if they need to maintain emotional distance or denial, they can do so. Prefacing an educational intervention in this manner allows people to brace themselves for potentially distressing news and provides an opportunity to hear each other's hopes, fears, and beliefs. In addition, families often need a chance to discuss when, where, how much, with whom, and what type of information should be exchanged. Emotional Responses Educational activities can evoke powerful and uneasy emotions in concerned patients and family members. When providing information about hospice, palliative care, or other end-of-hfe set-" tings, social workers should acknowledge-that this information is potentially distressing, and should be prepared for, and comfortable with, addressing a wide-range of emotional reactions (Taylor-Brown et al,, 2001).Typical responses will vary depending on how the patient and others interpret the illness, but can include avoidance, depression, anger, fear, denial, anxiety, intellectualization, and guilt. Although extreme manifestations of these emotional reactions can be destructive, their presence is usually normal and emotionally constructive in the context of coping. In one study of family caregivers of hospice patients, the more cognitive information caregivers received, the more likely they were to experience feelings of anger and anxiety (Willert, Beckwith, Holm, & Beckwith, 1995), The researchers surmised that the strong emotional responses were due, not to the amount of information given, but to the content. New information may threaten established coping strategies, challenge deeply held assumptions, or highlight conflicting beliefs. Families might simply feel overwhelmed by medical information, or certain "trigger phrases" might elicit strong anticipatory grief responses. For example, some caregivers might experience intense anxiety when discussing routine medical interventions, such as administering a dose of morphine or the delivery of a hospital bed to the home, especially if they view these as signs of the patient's imminent death. Or, applying for Social Security Disability might symbolize a marked and distressing loss of independence. Thus, social workers should be aware that providing educational support and concrete information about services may elicit strong emotional reactions. This is not to suggest, however, that information be withheld to protect patients and families, although there may be times when this is wise. Instead, social \vorkers should prepare them by first inviting a discussion about potentially conflicting desires, the perceived fneaning of medical interventions, unrealistic expectations, and the patient's and family's goals before discussing sensitive information. Practitioner Bias The way in \vhich medical options are defined, interpreted, framed, and explained by health care professionals influences how patients and families make decisions....
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Outline
1. Paragraph One
a) Decisions involving end-of-life care are delicate; hence, they should be handled
with the utmost care.
b) To make sure that the family is not overwhelmed, there are different services that
can be availed
2. Paragraph Two
a) In educating the family members about legal issues, there are different methods
that can be used.
3. Paragraph Three
a) The purpose of a living will, advance directives, and a power of attorney is to
outline the treatment that should or should not be given to keep a person alive.
4. Paragraph Four.
a) As a medical social worker, I would also play an advocacy role for the patient.


Running head: MEDICAL SOCIAL WORK

1

Medical Social Work
Name
Institution

MEDICAL SOCIAL WORK

2

Decisions involving end-of-life care are delicate; hence, they should be handled with the
utmost care. Taking the “end of life care – case 2” in...


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