End-of-Life Care and Social Work Practice

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Write a paper that analyzes the role of the social worker in helping to plan end-of-life care. Include possible consideration of palliative care, euthanasia, hospice care, the living will and advanced directives, and other factors. Research and cite at least one journal article to support your analysis.


Resource:

Cagle, J. G., & Kovacs, P. J. (2009). Education: A complex and empowering social work intervention at the end of life. Health & Social Work, 34(1), 17–27.

Tags: books fear anxiety answers skills goals resources empowerment support Emotional culture depression Environmental Psychosocial process diagnosis home Cognitive and Behaviors anger Professional Roles jenkins friends Spiritual or written caregiving patients holistic chronic behavioral equipment palliative care however emotionally dying web sites prognosis saying Hospice Christ shame Needs expectations health literacy where Physicians Parker in part instead 2001 2004 social isolation Fears emotional reactions denial Education: A Complex and Empowering Social Work Intervention at the End of Life Contents EDUCATION AT THE END OF LIFE: A ROLE FOR SOCIAL WORK A THEO 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 this article focuses on social workers working with patients and families 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 complexi the authors recommend strategies for more effectively helping patients and families access the information they need. KEY WORDS: death and dying; educ social workers in health care settings often assume the responsibility of providing information to patients and family members. This is particularly i 1989; Deja 2006). The role of educator seems a suitable one for practitioners because the effective exchange of reliable information promotes client empowerment Bern-Klug 2004; Lee 1996). Unfortunately social workers and other health care providers frequently undervalue education (Christ & Sormanti 1999; Rabow Hauser & Adams 2004) overlooking its complexity and viewing it as a simple nontherapeutic 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 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 Dying "The question is not should we tell…? but rather 'How do I share this with my patient?'" (p. 28). A deeper appreciation of how information is exchange 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 or hospital social workers will likely come across patients who are coping with life-threatening health conditions. These illnesses may be recently diagnosed--mar 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 influe 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 helpi we summarize the related literature; illustrate that education is a well-established theory-based social work intervention; identify the potential benefits of education; highlight the major sources of complexity related to the effectiv regardless of where patients are in their experience with an acute 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 su 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 dove 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. p. 44). Social workers also have a professional obligation to minimize communication barriers within the health care system because ensuring that pati 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--spi 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 essent 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 and fears. Facilitating an assessment dialogue can and should allow individuals the opportunity to explain the circumstances of the illness and its me 1998; Taylor-Brown Blacker Walsh-Burke & 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 Butow & Tattersall 2005).The preferred timing amount and content of information vary greatly among family members and other informal caregivers (Fallowfield 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 meaning and circumstances surrounding the illne 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 in other families it may relieve anxiety for the patient to be involved in these discussions (Clayton 2005). A THEORY-BASED INTERVENTION The role of educator is recognized in health social work as an integral part of illness prevention and health promo 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 sectio 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 2006). Much of the focus is on peoples' coping strategies for dealing with situations that induce anxiety. This theoretical approach proposes five tec 1995). In many health care settings this might involve content about the dying process caregiving roles or other palliative care services. More specifically people may want information about their diagnosis 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 situat such as their family and health care team members. The more concrete and perhaps obvious role for the educator is to inform families about available resources and 'service 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 2006). Thus educative techniques can be a critical source of support to patients and families living with a life-threatening illness. Cognitive and Behavioral The 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 most important the process for change (Beck 1995). In the framework of behavioral theory educational interventions focus on five domains of behavior: social and physical cues (J. Walsh 2006). People are taught about the relationship between cues 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 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 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 the health care system and what is happening to them enhances the potential for empowering 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. 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). 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 concep 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 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 and other norms. Life-threatening and terminal illnesses present some or all of these stressors. 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 of the en its effect on family caregivers and resources to help support the patient and. family physically 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 people tend to want details about their illness and care options to help them feel more in control. Patients often desire health-related information a 2004). Facilitating 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. Coping Much of the research exploring the benefits of educational support to families is based on the premise that inf 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 or other feelings of inadequacy. Related to coping is preparedness (Rabow et al. a multidimensional construct incorporating medical and practical dimensions of one's unique situation. Steinhauser and colleagues (2001) surveyed and interviewed health care providers and family members to better understand the role and dimensions of preparation at the end of life. Components related to preparation include naming so 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 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 co 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 pamphlets or self-help groups) and interactive informational support in patient--physician interaction (Maly Leake & Silliman 2004). Self-Determination Promoting client self-determination is an essential part of contemporary social work practice. Social work scholars have adv 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 i 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 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 h 2006). In addition as Powazki and Walsh (1999) reminded us many terminally ill 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 w education can help some patients and families avoid unnecessary distress. The delivery of sensitive information can increase a family's sense of contr minimizing the likelihood of a perceived crisis (Grbich & Maddocks 2000; Tringali 1986). If patients and family members have some indication about what to anticipate given their diagnosis 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 hos 2004). In addition when social workers were present during the initial admission visits patients had a higher quality of life 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 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 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 patient and family expectations emotional responses practitioner bias and the unknown. Cultural Variations Personal views about illness 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 and with whom it is appropriate to discuss end-of-life issues. Depending on a person's cultural orientation conversations about advance directives and prognosis may be considered unapproachable (Jennings 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 ne 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 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 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 conduc 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 cl 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 change 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 co as a caregiver's capacity may be compromised by stress and fatigue. Because most empowerment efforts focus on individuals who are cognitively aware (I 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). Health Liter Healthy People 2010 (2005) defines health literacy as "the degree to which individuals have the capacity to obtain 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 & Kolstad 1993). These findings were 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 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 di honoring the family's cultural beliefs and traditions. Good information may dispel some unrealistic and potentially detrimental assumptions about the 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 actua social workers can work with families to reframe the meaning of "hope" from hope for a cure (which may be unrealistic) to hope for comfort and dignity 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 progn calling for an open-ended approach that helps individuals adjust in their own unique way. Patients and families can become empowered to regulate the t 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 a and beliefs. In addition families often need a chance to discuss when how much with whom and what type of information should be exchanged. Emotional Responses Educational activities can evoke powerful and uneasy emotions in concerned patie or other end-of-life settings 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 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 that information be withheld to protect patients and families although there may be times when this is wise. Instead social workers should prepare them by first inviting a discussion about potentially conflicting desires the perceived meaning of medical interventions unrealistic expectations and the patient's and family's goals before discussing sensitive information. Practitioner Bias The way in which medical options are defined interpreted framed and explained by health care professionals influences how patients and families make decisions. In other words the manner in which health care knowledge is presented can influence treatment decisions and can jeopardize patient self-determination (Bern-Klug et a 2001; Drought & Koenig 2002). Well-meaning professionals may unknowingly describe health care options that reflect their own values leaving patients (or their decision-making proxies) with a limited understanding of health care alternatives. In fact social workers may inadvertently disempower patients by using suggestive or leading language to pressure patients or families into making agreeable (o one might subtly communicate personal preferences nonverbally with a nod of the head when presenting certain treatment options "You wouldn't want to put your loved one through more treatment would you?" The Unknown A key social work role is to educate patients and their families regarding the expected disease course (Taylor-Brown et al. 2001). However some of what families want to know especially regarding the prognosis is inexact and cannot be known with certainty. Practitioners must acknowledge this and feel comfortable saying "I don't know." Conversations may need p. 44) including questions about prognostic ambiguities or other uncertainties. Further complicating the issue is that family members often "don't know what p. 483). Instead of simply dispensing information about possible disease outcomes patients and families might benefit more from an invitation to discuss concerns about the patient's prognosis and feelings related to uncertainty. By practitioners can discuss the limitations of the available information. Social workers can qualify "facts" as information based on what typically happ intervention in health care and one that is especially well suited for social workers. General preparation in systems theory family and group dynamics and the importance of an individualized assessment that is ongoing and multidimensional helps social workers start with the unique needs of each perso as well as in community-based practice and research helps social workers understand the complexity of the health care system in. which patients are living and dying. More specific training in the practi and values for effective intervention with patients and families Gwyther and colleagues (2005) identified providing information and education as integral aspects of a social worker's role. Some research suggests that social workers are not as well equipped to provide education on end-of-life issues as they could be (Christ & Sormanti 1999). To facilitate advocacy and to promote the effective assessment and dissemination of information to those living with life-threatening condition we recommend that social work practitioners and educators consider the following three things: Theory: Recognize education as an essential theory-driven component of professional practice. In particular ego psychology and crisis theory conceptualize education as an important if not essential intervention. Assessment and Intervention: Recognize the importance of an ongoing individualized assessment that addresses the following inherent complexities related to working with each patient and family: cultural variation health literacy (including developmental status) and comfort level with the "unknown." Perform these assessments in an open patient-/family-centered dialogue eliciting a holistic picture of each family's educational needs and context. From this social workers should be able to identify what the family knows and wants to know. Specific practice implications may include the following: • Foster an equal information exchange--educational interventions should verbally and by demonstration). Avoid acronyms and medical terms if using them clarify whether these are understood. • Give patients and families a chance to tell their story. • When using cognitive techniques tactfully confront cognitive distortions by educating patients and families about their erroneous beliefs and automatic thoughts. Help reframe their n and align their expectations within reason. Also encourage families to challenge conventional conceptualizations of death and dying (for example dying does not have to be depressing or painful). • Remember that too much information may overwhelm family members so give them permission to forget. However also provide them with a "lifeline" so they know how to get the answers they need (for example "You may not remember everything we talk about today and that's ok. If you need to get in touch with us just call 1-800-XXX-XXXX"). • Give families the information they need to avoid potential crises. For example What should they do in case of emergency? How and when should they access community services and resources? What do they need to know about the diseas some family members might withdraw socially others may overfunction and take control; some may be in denial and therefore get frustrated with family and staff who try to get them to "deal with i " whereas others might feel a sense of urgency to address every aspect; some may be angry and ask "Why?" whereas others are busy searching for information and second opinions. Understanding that these are common ways to respond to intense situations may be helpful to families. • Educate patients and thei those established in the Patient Self-Determination Act of 1990 and more recently in the Health Insurance Portability and Accountability Act [HIPAA]). • Instill a sense of control. Remind patients and families that they are in charg foster strengths and help identify opportunities for growth and enhancing social relationships. 3. Advocacy: Advocate on behalf of patients and their families. The more concrete and perhaps obvious role for the this may also include acting as a conduit to foster an effective exchange of information between the family and other health care staff or going beyon we need to be educating social work students and practitioners about the value of education as an intervention. It may appear to be a simple process but we maintain that it is deceptively complex. When done well education acknowledges the uniqueness of each patient and has the potential to provide support comfort

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