The death of an elderly individual may occur in a variety of settings and circumstances. For example, an individual may die painlessly at home surrounded by the support of many loved ones, or an individual may suffer severe pain for months before dying in a health facility with little social support. In addition, it is possible that many health and helping professionals may interact with the dying person and his or her family.

For this Assignment, you consider a social worker’s role in end-of-life care. In addition to reading this week’s resources, conduct your own research and obtain at least one additional journal article that addresses how a social worker might support clients as they plan end-of-life care.

Submit a 2- to 3– APA page 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.

References:

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.

Dosser, I., & Kennedy, C. (2012). Family carers’ experiences of support at the end of life: Carers’ and health professionals’ views. International Journal of Palliative Nursing, 18(10), 491–497.

Reese, D. J. (2011). Interdisciplinary perceptions of the social work role in hospice: Building upon the classic Kulys and Davis study. Journal of Social Work in End-of-Life & Palliative Care, 7(4), 383-406.

MAKE SURE TO USE REFERENCES I UPLOADED 

APA FORMAT PAPER

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

As in most practice environments, socialworkers in health care settings often assumethe responsibility of providing information to patients and family members.This is particularly important when patients and their families are cop- ing 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, nonthera- peutic, and, perhaps, mundane task (Makoul, 2003). Skill and compassion are needed to convey salient health-related information when patients and fami- lies are trying to understand what it means to face a life-threatening illness (Csikai & Bass, 2000; Rabow et al.,2004;Rose, 1999).Furthermore,research sug- gests 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

rather ‘How do I share this with my patient?’” (p. 28). A deeper appreciation of how information is exchanged between practitioners and clients is im- portant 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 life- threatening 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 individu- als who are confronting end-of-life issues and to discuss the role social workers can play in help- ing patients and families access the information they need in a way that is both empowering and

CCC Code: 0360-7283/09 $3.00 O2009 National Association of Social Workers 17

culturally sensitive. To do this, we summarize the related literature; illustrate that education is a well- established, theory-based social work interven- tion; 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 com- plexities. 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). Ac- cording 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 indi- viduals 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 set- tings. 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 indi- viduals 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 informa- tion 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

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 informa- tion 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, expecta- tions, 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 top- ics 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

18 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 in- tervention 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 situa- tions 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 direc- tives, and the disease process in general. Education about family and group dynamics helps individuals consider the effects of their behavior and life situ- ation 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 life- threatening illness.

Cognitive and Behavioral Theories Practitioners using these theories address problem- atic 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 mak- ing. Perhaps unintentionally, the pace and intensity of our health care system often overwhelms and disempowers even the most well-prepared pa- tients. 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 informa- tion can help counteract some of the disempower- ing 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

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

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 “op- portunity” (James & GiUiland, 2001). We maintain that education can help a person maximize the op- portunities (for example, for emotional and spiritual growth, time with loved ones, and participation in decision making), while minimizing the danger- ous 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, emo- tionally, 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

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 information facilitates the coping abili- ties of patients and caregivers (for example, Pickett, Barg, & Lynch, 2001). A lack of clear communica- tion 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.

Related to coping is preparedness (Rabow et al., 2004), a multidimensional construct incorporat- ing 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 talk- ing about death and dying, feeling the family and the patient are prepared for the death, and having funeral arrangements planned. Providing informa- tion 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, in- forming 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 cor- related 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 self- help groups) and interactive informational support in patient-physician interaction (Maly, Leake, & Silliman, 2004).

Health dr Social Work VOLUME 34, NUMBER 1 FEBRUARY 200920

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 es- pecially 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 partici- pants, patients are better able to assess their own educational needs and preferences. Ideally, provid- ing concrete information about available services, equipment, professional roles, practical limitations, and realistic expectations would help maximize independence and control. This may be more dif- ficult 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 pro- cess 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, edu- cation can help some patients and families avoid unnecessary distress. The delivery of sensitive in- formation 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 indica- tion 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 so- cial worker during hospice intake visits appears to reduce overall health care costs (Reese & Raymer, 2004). In addition, when social workers were pres- ent during the initial admission visits, patients had a higher quality of hfe, staff retention and satisfac- tion 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 ex- plored 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 ap- propriate 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 cultur- ally 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 pro- fessional paradox. As Taylor-Brown and colleagues (2001) phrased it,”one dilemma that often confronts health care teams is reconciling autonomy and re- spect for self-determination with a family’s cultural traditions” (p. 6). Dean (2001) referred to this as a “paradoxical combination of two ideas—being’in- formed’ 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 interven- tions should be individualized and conducted with respect, impartiality, and a deep interest in under- standing 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 (Bern- Klug, 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 cogni- tive status often changes during the course of care. Whether because of normal disease progression, sedation, or emotional distress, an individual’s com- petence 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 indi- viduals 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. Un- fortunately, 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 Literacy Recent research on public health literacy highlights concerns about the exchange of medical informa- tion 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) .These findings were based on measures of general literacy, not health-related literacy specifically. Estimates of those with com- promised 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 cul- tural 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

22 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, com- plicated situation for practitioners trying to relay accurate information.

Family members may have different levels of pre- paredness regarding prognostic information, calling for an open-ended approach that helps individuals adjust in their own unique ŵ 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 fam- ily 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. Al- though 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 sur- mised 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 be- liefs. 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 medi- cal 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. In other words, the manner in \vhich health care knowledge is presented can influence treatment decisions and can jeopardize patient self-determination (Bern-Klug et al., 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 (or compliant) decisions. For example, one might subtly communicate personal preferences non- verbally with a nod of the head when presenting certain treatment options, saying, “You wouldn’t want to put your loved one through more treat- ment, would you?”

CAGLE AND KOVACS / Education: A Complex and Empowering SocialWork Intervention atthe End of Life 23

Social workers can qualify “facts”as

information based on what typically happens

and not necessarily what will happen in the

patient’s case.

The Unknown A key social work role is to educate patients and their families regarding the expected disease course (Taylor-Brown etal.,2001).However,some ofwhat families want to know, especially regarding the prognosis, is inexact and cannot be known with cer- tainty. Practitioners must acknowledge this and feel comfortable saying “I don’t know.” Conversations may need to include extensive deliberations about “what is known” and “what is knowable” (Bern- Klug et al., 2001, p. 44), including questions about prognostic ambiguities or other uncertainties. Fur- ther complicating the issue is that family members often “don’t know what they don’t know” (Rabow et al., 2004, p. 483). Instead of simply dispensing in- formation 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 addressing prognostic uncertainties, practitioners can discuss the limitations of the available information. Social workers can qualify “facts” as information based on what typically happens and not necessarily what will happen in the patient’s case.

IMPLICATIONS FOR SOCIAL WORK EDUCATION AND PRACTICE Patient and family education is a fundamental, yet complex, 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 person. Training in policy, 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 practice theories pre- sented earlier would help to prepare social workers for some of the challenges inherent in this work. In their review of the knowledge, skills, and values for effective intervention with patients and families.

Gv^ther and colleagues (2005) identified provid- ing information, support, and education as integral aspects of a social worker’s role.

Some research, however, suggests that social workers are not as well equipped to provide educa- tion on end-of-life issues as they could be (Christ & Sormanti, 1999; Csikai & Bass, 2000; Kovacs & Bronstein, 1999). To facilitate advocacy and to promote the effective assessment and dissemination of information to those living with hfe-threatening conditions, we recommend that social work practi- tioners and educators consider the following three things:

!. Theory: Recognize education as an essential, theory-driven component of professional practice. In particular, ego psychology, cog- nitive, behavioral, empowerment, and crisis theory conceptualize education as an impor- tant, if not essential, intervention.

2. Assessment and Intervention: Recognize the importance of an ongoing, individualized as- sessment that addresses the following inherent complexities related to working with each patient and family: cultural variation, cognitive status, health literacy (including developmen- tal status), patient and family expectations, emotional reactions, practitioner bias, and comfort level with the “unknown.” Perform these assessments in an open, patient-/family- centered dialogue, ehciting a holistic picture of each family’s educational needs, culture, and context. From this, social workers should be able to identify what the family knows, needs, and wants to know. Specific practice implications may include the following:

• Foster an equal information exchange— educational interventions should be dia- logues rather than didactics.

• Provide information in various formats (that is, verbally, written, and by demonstra- tion). Avoid acronyms and medical terms, or, 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 famihes about their errone- ous beliefs and automatic thoughts. Help reframe their notions of hope, and align

24 Health & Social Work VOLUME 34, NUMBER i FEBRUARY 1009

their expectations within reason. Also, en- courage 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 disease or the dying process?

• Educate patients and families about family and group dynamics. For example, 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 it,” whereas others might feel a sense of urgency to address every aspect; some may be angry and ask “Why?”, whereas others are busy search- ing for information, answers, and second opinions. Understanding that these are common ways to respond to intense situ- ations may be helpful to families.

• Educate patients and their caregivers about their rights (for example, 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 pa- tients and families that they are in charge; clarify their goals, foster strengths, and help identify opportunities for growth, meaning making, and enhancing social relationships.

3. Advocacy: Advocate on behalf of patients and their families.The more concrete and perhaps obvious role for the educator-advocate is to inform families about available resources and

services and how to negotiate health care and other external systems. However, this may also include acting as a conduit to foster an effective exchange of information between the family and other health care staff or go- ing beyond the clinical setting to help shape policy that addresses end-of-life and other health care needs.

In summary, 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, and empowerment to patients and families. liHVl

REFERENCES Adler, S. S. (1989).Truth telling to the terminally ill:

Neglected role ofthe social worker. Social Work, 34, 158-160.

Aoun, S. M., Kristjanson, L.J., Currow, D. C , & Hudson, P. L. (2005). Caregiving for the terminally ill: Ac what cost? Palliative Medicine, Í9, 551-555.

Baker, L. M. (2004). Information needs at the end oflife: A content analysis of one person’s story.Joimial ofthe Medical Library Association, 92, 78—82.

Beauchamp.T. L., & Childress,J. F. (1994). Principles ojhio- medical ethics (4th ed.). New York: Oxford University Press.

Beck.J. (1995). Cognitive therapy: Basics and beyond. New York: Guilford Press.

Bern-Klug, M. (2004).The ambiguous dying syndrome. Health & Social Work, 29, 55-65.

Bern-Klug, M., Gessert, C , & Forbes, S. (2001).The need to revise assumptions about the end oflife: Implications for social work practice. Health & Social Work, 26,, 3S-4S.

Braun, K. L.,Tanji,V M., & Heck, R. (2001). Support for physician-assisted suicide: Exploring the impact of ethnicity and attitudes toward planning for death. Cerontologist, 41, 51-60.

Christ, G. H., & Christ, A. E. (2006). Current approaches to helping children cope with a parent’s terminal ill- ness. CA:A Cancer Journal for Clinicians, 56, 197—212.

Christ, G. H., & Sormanti, M. (1999). Advancing social work practice in end-of-life care. Social Work in Health Ciire, 30(2), 81-99.

Clayton,J. M.,Butow, P. N., &Tattersall, M.H.N. (2005). The needs of terminally ill cancer patients versus those of caregivers for information regarding progno- sis and end-of-life issues. Cancer, 103, 1957-1964.

Csikai,E. L., & Bass, K. (2000). Health care social work- ers’ view of ethical issues, practice, and policy in end-of-life care. Social Work in Health Care, 32(2), 1-22.

Dean, R. G. (2001). The myth of cross-cultural compe- tence. Families in Society’.Tlie Journal of Contemporary Human Services, 82, 623—630.

Deja, K. (2006). Social workers breaking bad news:The essential role of an interdisciplinary team when com- municating prognosis._/oKr»a/ of Palliative Medicine, 9, 807-809.

CAGLE AND KOVACS / Education: A Complex and Empowering Social Work Intervention at the End of Life 25

Dhooper, S. S. (1997). Social work in health care in the 21st century. Thousand Oaks, CA: Sage Pubhcations.

Drought,T. S., & Koenig.B.A. (2002).”Choice” in end- of-hfe decision making: Researching fact or fiction. Cerontologist, 42, 114-128.

Fallowfield, L. (2004). Communication with the patient and family in palliative medicine. In D. Doyle. G. Hanks, N. Cherny, & K. Caiman (Eds.). Oxford textbook of palliative medicine (3rd ed., pp. 101-115). Oxford: Oxford University Press.

Goldstein, E. (1995). Ego psychology and social work practice (2nd ed., pp. 166-199). New York: Free Press.

Grbich. C , Parker, D.. & Maddocks I. (2000). Communi- cation and information needs of care-givers of adult family members at diagnosis and during treatment of terminal cancer. Progress in Palliative Care, 8, 345-350.

Gwyther, L. P,Altilio,T., Blacker, S., Christ, G., Csikai, E. L., Hooyman, N., Kramer,B., Linton, J. M., Rayner, M., 8c Howe,J. (2005). Social work competencies in palliative and end-of-life are. Journal of Social Work in End-of-Life & Palliative Care, Í, 88-120.

Hay, A., & Johnson, S. (2001). Fundamental skills and knowledge for hospice and palliative care social work- ers. Competency-based education for social workers. Arlington,VA: National Hospice and Palliative Care Organization.

Healthy People 2010. (2005). Healthy People 2010: Objectives for improving health—Health commu- nication. Retrieved December 17, 2005, from http://www.healthypeople.gov/document/pdf/ Volumel/I lHealthCom.pdf

IngersoU-Dayton, 3., Schroepfer,T., Pryce,J., & Waaral, C. (2003). Enhancing relationships in nursing homes through empowerment [Practice Update]. Social Work, 48, 420-424.

James, R. K., & Gilliland, B. E. (2001). Crisis intervention strategies (4th ed.). Belmont, CA: Brooks/Cole.

Jennings, 13., Ryndes,T., D’Onofrio, C , & Baily, M. A. (2003). Access to hospice care: Expanding boundar- ies, overcoming barriers. Hastings Center Report, 33, S3-S59.

Kirsch, I.,Jungeblut, A.,Jenkins, L., & Kolstad, A. (1993). Tlie first look at the results of the National Adult Literacy Survey (NALS). Washington, DC: U.S. Department of Education.

Koenig, B. A. (1997). Cultural diversity in decision mak- ing. In M.J. Field & C. K. Cassel (Eds.), Approaching death: Improving care at the end of life (pp. 363-382). ‘̂ Washington, DC: Institute of Medicine.

Kovacs, PJ., & Bronstein, L. (1999). Preparing social workers for oncology settings: What hospice social workers say they need. Health & Social Work, 24, 57-64.

Krohne, H.W., & Slangen, K. E. (2005). Influence of social support on adaptation to surgery. Health Psychology, 24, 101-105.

Kubler-Ross, E. (1969). On death and dying. New York: Touchstone.

Kutner,J. S., Steiner,J. F., Corbett, K. K.,Jahnigen, D.W., & Barton, P. L. (1999). Information needs in terminal illness. Social Science & Medicine, 48, 1341-1352.

Lee,J.A.B. (1996).The empowerment approach to social work practice. In FTurner (Ed.), Social work treatment: Interlocking theoretical approaches (4th ed., pp. 218—249). New York: Free Press.

Makoul, G. (2003).The interplay between education and research about patient—provider communication. Patient Education and Counseling, 50, 79—84.

Maly, R. C , Leake, B., & Silliman, R. A. (2004). Breast cancer treatment in older women: Impact of the patient—physician interaction. JoMma/ of the American Geriatrics Society, 52, 1138-1145.

Miller, R. D., & Walsh,T. D. (1991). Psychosocial aspects of palliative care in advanced C3ncer. Journal of Pain and Symptom Management, 6, 24—29.

National Association of Social Workers. (2000). Code of ethics of the National Association of Social Workers. Retrieved June 16, 2006, from http://www. socialworkers.org/pubs/code/code.asp

National Association of Social Workers. (2003). Social workers in hospice and palliative care settings. Retrieved April 9,2004, from, http://www.socialworkers.org/ practice/bereavement/updates/EndOfLifeCare- PU0204.pdf

Parry.J. K. (1990). Social work practice with the terminally ill: A transculturalperspective. Springfield, IL: Charles C Thomas.

Pickett, M., Barg, E K., & Lynch, M. P (2001). Develop- ment of a home-based faniily caregiver education program. Hospice Journal, 15, 19-40.

Powazki, R. D., & Walsh, D. (1999). Acute care palliative care medicine: Psychosocial assessment of patients and primary caregivers. Palliative Medicine, 13, 367-374.

Proot, 1. M.,Abu-Saad, H. H., ter Meulen, R.HJ., Goldsteen, M., Spreeuwenberg, C , & Widdershoven, G.A.M. (2004).The needs of terminally ill patients at home: Directing one’s life, health and things related to beloved others. Palliative Medicine, 18, 53-61.

Rabow, M.W, Häuser,J. M., & Adams,J. (2004). Support- ing family caregivers at the end of life: “They don’t know what they don’t know.”JAMA, 291, 483-490.

Reese, DJ., & Raymer, M. (2004). Relationships between social work involvement and hospice outcomes: Results of the National Hospice Social Work Survey. Social Work,49, 415-422.

Richards, S. (2000). Bridging the divide: Elders and the assessment process. British Journal of Social Work, 30, 37-49.

Rose, K. E. (1999). A qualitative analysis of the informa- tion needs of informal carers of terminally ill cancer patients.Jonrna/ of Clinical Nursing, 8, 81-88.

Shapiro, PJ., Coyne,J. C , & Kruus. L. ‘K. (2004). Interest in services among prostate cancer patients receiving androgen deprivation therapy. Psycho-Oncology, 13, 512-525.

Sheldon,J.E. (1998). Patient education: Adding to quality of C3re. American Journal of Hospice and Palliative Care, 15, 239-242.

Small, N., & Rhodes, P. (2000). Too ill to talk? User involve- ment in palliative care. London: Routledge.

Steinhauser, K. E., Christakis, N. A., Clipp, E. C , McNeilly, M., Grambow, S., Parker,J., &Tulsky,J. A. (2001). Preparing for the end of life: Preferences of patients, families, physicians, and other care providers.JoiirHii/ of Pain and Symptom Management, 22, 121—l’a.

Stoneberg,J. N., & von Gunten, C. F (2006). Assessment of palliative care needs,. Anestltesiology Clinics of North America, 24, 1—17.

Taylor-Brown, S.T., Blacker, S.,Walsh-Burke, K., Christ, G. H., & Altilio.T. (2001). Care at the end of life. Philadelphia: Society of Social Work Leadership in Health Care.

Tringali,C. (1986). The needs of family members of cancer patients. Oncology Nursing Eorum, 13, 65—69.

Walsh, J. (2006). Tlieoriesfor direct social work practice. Belmont, CA: Brooks/Cole.

Walsh,T., & Lord, B. (2004). Client satisfaction and em- powerment through social work intervention. Social Work in Health Care, 38(4), 37-56.

Willert, M., Beckwith, B., Holm, J., & Beckwith, S. (1995). A preliminary study of the impact of terminal illness on spouses: Social support and coping strategies. Hospice Journal, 10, 35—48.

26 Health & Social Work VOLUME 34, NUMBER i FEBRUARY 2009

John G. Cagle, MSWPhD, is a Carolina Program in Health and Aging Research post doctoral fellow at the UNC Institute

on Aging in Chapel Hill, North Carolina. Pamela J. Kovacs, PhD, is afull-time associate professor at VCU’s School of Social Work in Richmond, Virginia.The authors thank Monica Leisey

and Mike Howell for their assistance with the preparation of

this article. Address correspondence to John G. Cagle, UNC

Institute on Aging, 120 Martin Luther King Jr., Boulevard,

Campus Box Í030, Chapel Hill, NC, 27599-1030; e-mail:

cagle@schsr. une. edu.

Original manuscript received October 16, 2006 Final revision received June 4, 2007 Accepted September 20, 2007

t OF FiiLO,

#NASW National AssociaHon of Sociol Workers

ROBERTA R. GREENE, HARRIET L. COHEN,

COLLEEN M. GALAMBOS & NANCY P. KROPF

The aging of societies is a global phenomenon. Ih the United States alone, the life expectancy

for both men and women will continue to increase over the next few decades and with that a

population explosioh of older adults. The dramatic increase in the number and diversity of older

adults elevates the visibility of gerontological matters. As a result, social work practice is becoming

more multigenerational, thereby demanding social workers, regardless of their professional

endeavors, to be equipped with the most innovative theories and practices to serve older adults

and their families.

This comprehensive text spans the new knowledge and skilis required in direct practice areas, group

work, and macro practice. It also outlines the Geriatric Social Work Competencies, as developed

by social work educators, necessary to serve the older adult population and suggests how these

competencies can be integrated into foundation curriculum.

ISBN: 13-978-0-87101-378-1. 2007. Item #3781. 328 pages. $49.99.

To ORDER CALL 8 0 0 – 2 2 7 – 3 5 9 0 OR VISIT WWW.NASWPRESS.ORG NASW PRESS

CAGLE AND KOVACS / Education: A Complex and Empowering Social Work Intervention at the End of Life 27

International Journal of Palliative Nursing 2012, Vol 18, No 10 491

Abstract This paper reports findings from an exploratory qualitative study concerning end-of-life support for family carers in an acute ward setting. The participants included bereaved carers of patients who had died in an acute ward or hospice, as well as health professionals. Interviews and focus groups were used to collect data. The study provides insights into the perceptions and needs of carers at the end of life and the challenges these present for nursing staff in an acute ward. This paper focuses on one key theme incorporating issues around communication between family and nursing staff and the availability of practical facilities. It provides information that may be beneficial to hospital staff who work in acute areas where there is an expectation they will support carers around the time of death. Key words: Carers l Support l Communication l End of life l Action research

Supporting carers is a key health policy in many countries. The end-of-life care strate-gies developed in each of the countries of the UK recommend that carers receive support throughout the palliative and end-of-life phases of the patient journey and into bereavement (Department of Health (DH), 2008; Scottish Government, 2008; Department of Health, Social Services and Public Safety Northern Ireland, 2009). Policies in Canada (Health Canada, 2007), Australia (Commonwealth of Australia, 2010) and across the European Union (Hall et al, 2011) also recognise the need to support carers.

Palliative care can have a trajectory of days, weeks, or years. It is defined by the World Health Organization (2002) as care that ‘improves the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial sup- port from diagnosis to the end of life and into bereavement’. A focus on support for patients and families at the end of life rather than cure is integral to both palliative and hospice care (Faull et al, 2005).

A well-managed death can help carers adjust to their situation (Payne et al, 2000). Thus, the way in which carers are supported around the time of death is important, particularly if the patient dete- riorates quickly and dies in hospital. Health-care systems emphasise the importance of care deliv- ered in communities and close to home, but most people in developed nations still die in an acute hospital setting (National Audit Office, 2008). Specialist palliative care teams have been estab- lished over the past 20 years, but death statistics in UK acute hospitals have remained much the same over the past 30 years. Ninety per cent of patients receiving palliative care spend the majority of their last year at home with family as carers, but around 57% return to hospital at the very end of life (Aoun and Kristjanson, 2005; Faull et al, 2005; Office for National Statistics, 2010).

Carers have a range of practical, financial, and psychological support needs as they deal with the

deterioration and impending death of their loved one. In some cases these needs may be unmet. Relatives and carers who may be vulnerable around the time of death may lack the knowl- edge and emotional energy required to ask for support when it is most needed (McIntyre, 2002). They may also find it difficult to identify an appropriate person to ask, not recognising the scope for the nurse to act in this role. Carer support is therefore complex and important, and demographic changes such as increased life expectancy and decreased birth rates indicate that the demand for carer support will rise.

This paper reports findings from the first phase of an action research study into supporting family carers at the end of life in an acute hospi- tal setting. It illuminates the experiences of both staff and bereaved carers.

Aim The aim of the part of the study reported here was to investigate the current support offered to carers near the end of life in an acute hospital setting, with a view to implementing changes to improve this area of care.

Research

Family carers’ experiences of support at the end of life: carers’ and health

professionals’ views Isabel Dosser, Catriona Kennedy

Isabel Dosser is Lecturer in Palliative Care, Edinburgh Napier University, School of Nursing, Midwifery and Social Care, Sighthill Court, Sighthill, EH11 4BN, Scotland; Catriona Kennedy is Professor of Nursing and Midwifery, Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland, and Edinburgh Napier University, Scotland

Correspondence to: Isabel Dosser [email protected]

492 International Journal of Palliative Nursing 2012, Vol 18, No 10

Research

Methodology The overall study used participatory action research. The underpinning philosophy of this method is to include the participants and work collaboratively with them as co-researchers (Koch and Kralik, 2006), involving them in any decisions and proposals. These key principles supported the aim of examining a particular area of nursing practice with a view to changing and improving care. Before commencing the action phase, the study required a snapshot of current practice to use as a benchmark to gauge future changes. Therefore phase 1, reported here, adopted a qualitative phenomenological method- ology to gauge the depth of experience and feeling of bereaved carers and staff on this emotive topic. This was intended to aid understanding of current practice to inform phase 2, the action phase, which will be reported separately.

The sample for phase 1 comprised bereaved carers and health professionals, and interviews and focus groups provided the means for data collection.

Ethics Ethical approval was granted by Edinburgh Napier University as well as the regional Intergrated Research Approval System and local hospice ethics committees.

Setting The setting comprised two acute wards in a large city teaching hospital, an 18-bed oncology ward and a 35-bed cardiorespiratory ward. The palliative care team participants were from three teams work- ing across the region, linked to the two hospices located at opposite ends of the city and covering different geographical areas. Both hospices offer inpatient, day care, and community services.

Sample Convenience sampling was adopted. The sample consisted of 13 bereaved carers, 3 specialist palli- ative care professionals, and 23 nursing staff from the teams on the two acute wards, as well as the 2 charge nurses from these wards (one from each). As many carers experience care for their loved ones in both the acute and the special- ist/hospice setting, it was thought important to recruit carers from this setting and to include the views of key specialist hospice staff.

Ethical approval was granted on the basis that the carers were to have been bereaved for between 4 and 12 months. This would mean that they would not be approached immediately fol- lowing the onset of bereavement while ensuring that their experience would be recent enough for

them to recall how they felt. The first three carers were recruited by hospice staff, who approached people whom they had indirectly worked with in their bereavement. The staff member provided the carer with an information sheet and explained the study and the option to participate. One carer was referred from each of the three hospice teams in the region.

Information about the other carers, who were connected to the acute hospital, was accessed from the admission books of the two participating wards. Their details were double-checked in the deceased patients’ medical records to ensure that contact was made with the appropriate person. All eligible carers were sent a letter explaining the study and inviting them to participate. A tear-off section was added to the letter of invitation with a self-addressed envelope for opting out. Six carers chose this option. Carers who did not return the tear-off slip within 10 days of receipt were then telephoned and invited to take part in the study. Sixty seven carers were identified in total from the ward information and 10 subsequently partici- pated (Table 1). This approach identified a total of 13 carers for interview.

Three specialist palliative care staff were also recruited by the researcher for interview, one from each of three bereavement teams. An initial request for approval to contact staff was made to the team managers. Once approval had been given, a letter was sent to each team asking for voluntary participation of staff involved in bereavement care. Two social workers and a chaplain volunteered and were interviewed.

Staff from the two wards were invited to join a focus group, and 23 participated. These were primarily registered nurses but also included unreg- istered support workers. There were no exclusion criteria within this group, but other members of the multidisciplinary team were excluded at the outset at the request of the charge nurses.

Data collection Much of the professional literature suggests that participation of bereaved carers in research that involves them sharing their story can be thera- peutic, regardless of the time since the death. Nonetheless, the conduct of such research requires careful planning and an experienced interviewer (Parkes, 1995; Seamark et al, 2000; Lowes and Paul, 2006; Beck and Konnert, 2007). These requirements informed the approach to data collection taken with the carers.

Interviews Data were collected from the carers and the three palliative care specialists through 18 individual

❛… the way in which carers are supported around the time of death is important, particularly if the patient deteriorates quickly and dies in hospital.❜

International Journal of Palliative Nursing 2012, Vol 18, No 10 493

Research

semi-structured interviews (Bryman, 2004). The interviewer was an experienced clinician and researcher and the bereaved carers were clear what involvement entailed for them, including their right to withdraw at any time without prejudice. The interviews were held at mutually convenient times and locations, with 12 carers choosing to be interviewed at home and one at the local hospital. The three palliative care specialists were interviewed separately in venues across the region at a time suitable to them. All of the interviewees were given information about the study immediately prior to the interview. The carers were also mailed the information once telephone contact had been established and a date for their interview set. All of the participants gave written consent and permission for the inter- view to be digitally record. None of the interviews lasted longer than an hour.

The questions in the carer interviews were informed by the literature and explored what support the carers experienced around the time of death. The opening question was: ‘If you feel able, could you share with me what happened when your wife/husband/uncle became unwell?’ This approach worked well and allowed the bereaved carer to tell their story at their pace, with an occasional pause to clarify details. Other questions were rarely required as carers covered the majority of points in their stories; however, prompts if necessary included questions such as ‘What relationship did you have with the staff on the ward?’, ‘Do you feel you were supported by the staff before or following the death and if yes, in what ways?’

Focus groups The information about the focus groups was passed to the team by the charge nurses and the researcher when speaking informally to them in the ward. This followed negotiation and discus- sion between the researcher and relevant charge nurses about the most suitable time and dates to release staff and the venue. In reality, the focus groups and interviews with health professionals took place in an opportunistic way as it soon became clear that staff could not be released from the ward in groups or for lengthy periods of time. A compromise meant that the focus groups took place in a room on the ward with staff con- sent and sometimes at lunchtime to accommodate the working day.

Five focus groups took place (Table 2). A silent scribe, who was a colleague of the researcher with experience in research, sat in on the focus groups to record non-verbal communication or particular items of interest. One such example

was the visible alarm of a staff member when it was suggested that she could break bad news to a patient or carer.

To ensure confidentiality, the participant details were encoded and known only by the researcher. The study data was stored as required by the Data Protection Act 1998, with all written infor- mation and transcripts stored in locked cabinets or on the researcher’s personal computer, which offered protection from virus software.

Data analysis Thematic analysis, sometimes referred to as qualitative content analysis or interpretive analy- sis, was adopted for this exploratory phase. Data analysis was an ongoing reflective and reflexive process and began with the first interview. The digital recordings of the interviews and focus groups were transcribed verbatim and checked for accuracy. The data was analysed using a framework by Braun and Clark (2006) that involves it being broken into phases and coded into themes. It was analysed for each individual participant and then across the focus groups.

To begin with the recordings were listened to and the transcripts read several times. Text in the transcripts was colour-coded to begin building subcategories and notes were made. The notes and colour codes were reviewed for similar or opposing ideas to aid conceptual development. Mind maps were also used as a visual aid for the coding and collating into subthemes while searching for meaning and patterns and were

Ward A Ward B

Total deaths/bereaved carers from April 2007–April 2008 39 51

Number within the permitted time window 35 32

Lived outside region 10 5

Declined to be interviewed or could not be contacted 9 6

No known next of kin of the deceased or no contact details 9 14

Carer had had multiple bereavements recently 1 –

Bereaved carer too unwell or had died 1 1

Next of kin was a solicitor – 1

Carers interviewed 5 5

Table 1. Bereaved carer recruitment

Staff participating Ward Numbers per group Length of discussions

Nursing staff of mixed

grades including

registered nurses and

clinical support

workers

A Group 1: two staff

Group 2: three staff

Group 3: three staff

18–25 minutes

B Group 1: eight staff

Group 2: seven staff

41–45 minutes

Table 2. Staff focus groups

494 International Journal of Palliative Nursing 2012, Vol 18, No 10

Research

returned to during the development of the subthemes and final themes. For example, emer- gent themes around carers being left to work things out and staff feeling they could not always address information needs merged to form a single theme around valuing and respecting.

All of the participants were offered their transcript to check. This opportunity was taken up by one professional and one carer who were happy for the text to be used.

Findings Analysis across the data revealed five major themes:

●Valuing and respecting ●Dying with dignity ●Balancing the scales of skills and knowledge ● Staff morale ●Follow-up In this paper the reporting and discussion

concentrate on one key theme. Communication was an overarching presence that permeated the five key themes, but it was particularly evident in the theme ‘valuing and respecting’. As this theme was chosen by the participants for the sub- sequent action stages of the study, it is this theme that is reported here.

Valuing and respecting Both carers and staff reported feelings around being valued and respected. Carers reported the need for practical and emotional support and improved communication with staff. Staff recog- nised many of these needs and also identified that they could not always be addressed.

A significant issue for carers was their role once their loved one was admitted to an acute hospital. They reported feeling excluded from care and decision making even though they may have been giving the majority of care to the patient at home prior to admission. The lack of accommodation for families who were spending time in the ward leading up to the death, a practical problem, was also linked to feeling undervalued. The carers were sometimes not aware of an available private space where they could spend time away from the bed- side. Recognition that the carers of dying patients may have practical needs did not appear to be acted on by all staff.

‘People themselves [the nurses] are fantastic … it’s just the system. Even if there had been an ensuite bathroom. There was just the day room for patients. There was a sink in the [patient’s] room but there was no way I was going to [wash and change]. It was a big lack I thought. I know I wanted time on my own, whenever I

wasn’t in [the patient’s room] I was in the [patient] day room.’ Carer (C) 4

The specialist palliative care professionals identified the importance of the environment and giving the carers time and space. One suggested that sharing the care is necessary and appropriate at times, then went on to say that after the death health professionals should:

‘Get them [the family] some privacy, I know it’s not easy to have time but at least do it in private if you can, often I think people also appreciate some leaflets with practical details in it.’ Palliative care specialist 3

The theme of valuing and respecting was also closely linked to communication issues between staff and carers. Carers said that nurses rarely asked them how they were and how they were coping. Nursing staff reported that communica- tion with carers was to update them on the condition of the patient or give other informa- tion. The carers acknowledged the work of the nurses but revealed how they would like to have been acknowledged in turn. Communication by staff focused on information giving, but carers reported occasions when they felt uninformed. One participant whose husband had died a year previously recalled how she had felt angry about the lack of information in the final stages of her husband’s life:

‘I found that period really hard, and maybe the hospital could have given me a bit more support at that point. You’re faced with your husband in that state, but nobody sort of said: “He won’t get well.”’ C3

Here the carer did not get information about her husband’s condition and this caused distress. The next extract reveals the level of distress expe- rienced by this carer, who was unprepared for her husband’s death in such a short time frame:

‘I was his wife for 17 years, treat me as an adult. It made it difficult for me and I know somebody else may not have wanted to know … I didn’t expect it to be only 4 weeks [before he died].’ C3

Some carers expected health professionals to raise difficult topics with them and value who they are. This presented challenges for staff who may not have felt confident in raising sensitive issues or may not have recognised that the patient and carer may wish to have as much

❛Carers have a range of practical, financial, and psychological support needs as they deal with the deterioration and impending death of their loved one.❜

International Journal of Palliative Nursing 2012, Vol 18, No 10 495

Research

information as possible. Staff acknowledged that some lack the necessary skills to deal with direct and difficult questions:

‘I’ve seen patients maybe trying to ask something about their prognosis and they say … not blank them off but say … “Oh no you’re fine, you’re fine”, but they’re not fine, but rather than [have the conversation] … they sort of hide it from the patient.’ Focus group 2, ward A, staff nurse 1 (FG1 A SN1)

Where carers had experienced hospice and acute care they offered comparisons without being prompted:

‘They [hospice staff] cared for me too, I felt supported and they were honest [about the situ- ation], although we had never really discussed dying.’ C1

The ward nurses demonstrated a more reactive stance in communication:

‘There is a view that you don’t actually go in and have “that conversation” it’s only maybe if you are in the room dealing with the patient that you do try to have a conversation with the relative.’ FG2 A SN1

From a nursing perspective the difficulties in communicating in the ward were linked to the context and events surrounding the situation:

‘You know that you should be putting the time and effort into speaking to relatives but you know you’ve not got the time to do it unfortu- nately … quite often you don’t know who they are because they haven’t asked to speak to you.’ FG1 A SN1

‘How well the carers have been prepared [for the death] makes a big difference. If they have been sitting [with the patient] for 2 or 3 days and the condition has deteriorated then it’s a different directive. If they haven’t and you have to phone someone suddenly that’s different.’ FG1 A SN1

When one ward nurse was asked whether she felt able to have an honest and open conversation with a carer, she said:

‘I think relatives, although they know what’s happening, can often kind of skirt around it … or have different names for it rather than just saying direct words such as, “Is my mother

dying?” Because, it seems almost too harsh a word at certain stages, I think for them … It depends on the relationship I think you’ve got with the relatives …’ FG3 A SN2

However, use of language was important:

‘It’s not a comfortable conversation for anybody, but I think there are certain people that appreciate you being honest and direct and using the right words. I’ve been involved in a situation where someone had been told that their parent had “passed” or had “left us” and … I could see the family member thinking “What?” … and totally didn’t understand that the doctor was trying to say they’ve actually died.’ FG3 A SN2

Some of the participants did not view breaking some aspects of bad news as their role and sub- sequently communication may have been lacking for many carers and patients, as demonstrated by one nurse who had been qualified for over 5 years:

‘Because the family want to hear it from the doctor not the nurses.’ FG1 A SN2

Carers thought that staff in the hospital did their best and were sympathetic to workload issues. Staff recognised that aspects of communi- cation could be improved and this was linked to time, context, education and training. For the nurses who worked in the acute setting commu- nication with carers was in many respects secondary to the physical care and support of patients rather than being a central tenet of it. Ensuring a good and comfortable death was assumed by some staff members to meet the needs of carers and patients. By contrast those working in specialist settings had different resources available to them and the support of carers through excellent communication and involvement was core to the delivery of care.

Discussion This study demonstrated that the carers’ needs were only being partially met in the acute hospi- tal setting. The participants demonstrated the importance of the physical environment to carers dealing with the impending loss of a loved one. Bereaved carers recalled the detail surrounding the time of death, the impact of lack of privacy, and the distress caused by not fully understand- ing what was happening. The environment and its impact on the experience of death for carers were also identified by McIntyre (2002, p95), who reported ‘frequent comments by families

❛Carers reported the need for practical and emotional support and improved communication with staff.❜

496 International Journal of Palliative Nursing 2012, Vol 18, No 10

Research

about lack of facilities and private areas for discussions with staff’.

Some carers reported a lack of recognition of their role and their active participation in the illness trajectory. The carers also reported wider communication issues, the existence of which was confirmed by the staff participants. Some of the staff demonstrated a lack of confidence in holding difficult conversations around the end of life and also referred to the ‘busyness’ of the ward as both a barrier and a strategy for avoiding difficult conversations. This echoes the findings of Bushinski and Cummings (2007, p12), who reported that: ‘A crisis may be a reason to post- pone a discussion or may be the impetus to hold the discussion.’ The findings suggest that the diffi- culties are also in part due to contextual issues, including established patterns of working such as shift patterns, which can make it difficult for carers to build trust. Lack of recognition of carers as partners in care by staff and deficits in commu- nication skills may add to anxiety when a difficult conversation is anticipated or required (Docherty et al, 2008; Boucher et al, 2010).

Communication skills are a requirement for all health professionals. In nursing, advanced roles such as the consultant or specialist carry the expectation of appropriate knowledge and skills to hold difficult conversations. Over the past decade there has been a steep increase in the number of specialist palliative care teams across health care (Payne et al, 2008). However, advanced posts remain relatively rare, although clinical nurse specialists continue under a variety of remits (Jack et al, 2003). Furthermore, it is important to consider how the increase in specialist services affects the majority of patients, who do not receive specialist input, and how specialists can increase the skill levels of those working in general and acute settings. Arguably, if an increase in specialist palliative care results in improved care for an increased but overall still small number of dying patients and families, the goals of palliative care based on need rather than diagnosis will not be achieved.

Therefore, ward staff who work directly with patients and carers also require education and training in communication skills. Such education has become common in health care over the past decade, with research by Fallowfield et al (2001), Wilkinson et al (2003), Zapka et al (2006) and others providing evidence for practice and models of communication training. However, difficulties remain in achieving widespread provision and uptake. Some areas have adopted a cascade model (Hayes, 2000; Nuttall, 2008), in which the focus is on participants returning to their workplace

with new knowledge and then formally or informally passing it on to other members of staff. The theory of this model is sensible and resourceful, but putting it into practice remains challenging. Communication beyond the spoken word is crucial, as is understanding that often carers may expect professionals to take the impe- tus in initiating difficult conversations. As in McIntyre (2002), some of the carers identified how simple gestures of support could make a difference to their end-of-life experiences.

According to Costello (2004), the number of patients being admitted and discharged from hospitals has increased in an effort to meet targets to reduce hospital stays. Costello (2004, p6) refers to this as the ‘warehousing’ model of care and suggests that hospital nurses and doctors ‘have created their own cultural practice which influ- ences their behaviour and the way in which death and dying is controlled’. Short and repeated hospital admissions add to the difficulties in establishing relationships on which good communication can be based.

Having historically been aimed at patients with cancer, the palliative care approach is now recommended for all patients diagnosed with a life-limiting condition. This, together with the increasing number of deaths from life-limiting illnesses other than cancer (Sharpe et al, 2005), makes ever more pressing the need for health professionals, particularly nurses, to have a suffi- cient breadth and depth of knowledge of how to support patients and carers at the end of life (DH, 2008; Scottish Government, 2008; DHSSPSNI, 2009).

Strengths and limitations Issues relevant to the size of qualitative samples are common (Polit et al, 2001), and indeed the timescale of the present study and the need to move to the action phase limited the number of participants. Furthermore, had it been foreseen that many of the next of kin would live outside the region of study, an application could have been made for multi-centre ethical consent. Also, lack of funding to release the researcher from her full-time post resulted in the data collection being over a longer period, limiting the time available for the action research phase.

A strength of the research is that it took place following the death of the carers’ loved ones and their contact with health services, which may have allowed the participants to be more honest. Fear of being critical of health care is a well- documented problem in researching patient and carer experiences. In addition, in research by Beck and Konnert (2007) with bereaved adults,

❛Some carers reported a lack of recognition of their role and their active participation in the illness trajectory.❜

International Journal of Palliative Nursing 2012, Vol 18, No 10 497

Research

98.1% of the participants felt that bereavement research is worthwhile and 84.4% felt that other bereaved people could benefit from participating. The carers who participated in the study reported here supported this contention, and although a couple of them became tearful they did not wish to terminate the interview.

Relevance to clinical practice Working in partnership with family carers can expand our understanding of what matters to them around the time of death in the acute ward. The involvement of the bereaved in local ward policies as well as managerial strategy could contribute to change where it matters. This might work particularly well if nursing staff are included in local groups targeting communica- tion issues at ward level so that they can hear personally how their actions are interpreted by carers. A dialogue about how to improve support could then follow. To complement this approach, care of the carers should be highlighted in under- graduate programmes for health professionals and standard education of all professionals car- ing for the dying. Furthermore, carers’ support needs must be recognised by quality frameworks and end-of-life strategies aiming to enhance the health-care experience.

Conclusions The present study offers useful insights into what carers value and perceive as respect at the end of life and particularly around the time of death. The findings suggest that interventions to improve the communication skills of staff and to improve the environment could enhance carer experiences. The action research study went on to address these two issues and these findings will be reported in a separate paper.

Acknowledgments Sincere thanks to all who participated in the study. Thanks also to Professor Anne Munro and Professor Diana Woodward, Edinburgh Napier University

Aoun SM, Kristjanson LJ, Currow DC, Hudson PL (2005) Caregiving for the terminally ill: at what cost? Palliat Med 19(7): 551–5

Beck AM, Konnert CA (2007) Ethical issues in the study of bereavement: the opinions of bereaved adults. Death Stud 31(9): 783–99

Boucher J, Bova C, Sullivan-Bolyai S (2010) Next of kin’s perspectives of end of life care. J Hospice Palliat Nurs 12(1): 41–50

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2): 77–101

Bryman A (2004) Social Research Methods. 2nd edn. Oxford University Press

Bushinski RL, Cummings KM (2007) Practices of effective end-of-life communication between nurses and patients/ families in two care settings. Creat Nurs 13(3): 9–12

Commonwealth of Australia (2010) Supporting Australians

to Live Well at the End of Life. National Palliative Care Strategy 2010. Commonwealth of Australia

Costello J (2004) Nursing the Dying Patient: Caring in Different Contexts. Palgrave Macmillan, Hampshire

Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. DH, London

Department of Health, Social Services and Public Safety Northern Ireland (2009) Palliative and End of Life Care Strategy for Northern Ireland Consultation Document. DHSSPSNI

Docherty A, Owens A, Asadi-Lari M, Petchey R, Williams J, Carter YH (2008) Knowledge and information needs of informal caregivers in palliative care: a qualitative sys- tematic review. Palliat Med 22(2): 153–71

Fallowfield L, Saul J, Gilligan B (2001) Teaching senior nurses how to teach communication skills in oncology. Cancer Nurs 24(3): 185–92

Faull C, Carter Y, Daniels G (2005) The Handbook of Palliative Care. 2nd edn. Blackwell, Oxford

Hall S, Petkova H, Tsouros AD, Costantini M, Higginson IJ (eds) (2011) Palliative Care for Older People: Better Practices. World Health Organization

Hayes D (2000) Cascade training and teachers’ professional development. ELT J 54(2): 135–45

Health Canada (2007) Canadian Strategy on Palliative and End of Life Care: Final Report. Health Canada

Jack B, Oldham J, Williams A (2003) A stakeholder evaluation of the impact of the palliative care clinical nurse specialist upon doctors and nurses, within an acute hospital setting. Palliat Med 17(3): 283–8

Koch T, Kralik D (2006) Participatory Action Research in Health Care. Blackwell, Oxford

Lowes L, Paul G (2006) Participants’ experiences of being interviewed about an emotive topic. J Adv Nurs 55(5): 587–95

McIntyre R (2002) Nursing Support for Families of Dying Patients. Whurr Publishers Ltd

National Audit Office (2008) End of Life Care. The Stationery Office, London

Nuttall M (2008) Learning the skills to save lives. Nurs Stand 23(14): 62–3

Office for National Statistics (2010): Mortality Statistics: Deaths Registered in England and Wales (Series DR), 2010. Table 13. ONS

Parkes CM (1995) Guidelines for conducting ethical bereavement research. Death Stud 19(2): 171–8

Payne S, Horn S, Relf M (2000) Loss and Bereavement. Open University Press, Philadelphia

Payne S, Seymour J, Ingleton C (2008) Palliative Care Nursing: Principles and Evidence for Practice. 2nd edn. Open University Press, Maidenhead

Polit D, Beck C, Hungler B (2001) Essentials of Nursing Research. Methods, Appraisal, and Utilization. Lippin- cott, Williams and Wilkins, Philidelphia

Scottish Government (2008) Living and Dying Well: A National Action Plan for Palliative and End of Life Care in Scotland. Scottish Government

Seamark DA, Gilbert J, Lawrence CJ, Williams S (2000) Are postbereavement research interviews distressing to car- ers? Lessons learned from palliative care research. Palliat Med 14(1): 55–6

Sharpe L, Butow P, Smith C, McConnell D, Clarke S (2005) The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. Psychooncology 14(2): 102–14

Wilkinson S, Leliopoulou C, Gambles M, Roberts A (2003) Can intensive three-day programmes improve nurses’ communication skills in cancer care? Psychooncology 12(8): 747–59

World Health Organization (2002) WHO Definition of Pal- liative Care. www.who.int/cancer/palliative/definition/ (accessed 5 October 2012)

Zapka JG, Hennessy W, Carter RE, Amella EJ (2006) End-of-life communication and hospital nurses: an educational pilot. J Cardiovasc Nurs 21(3): 223–31

●IJPN

❛The involvement of the bereaved in local ward policies as well as managerial strategy could contribute to change where it matters.❜

Copyright of International Journal of Palliative Nursing is the property of Mark Allen Publishing 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.

Interdisciplinary Perceptions of the Social Work Role in Hospice: Building Upon the

Classic Kulys and Davis Study

DONA J. REESE School of Social Work, Southern Illinois University, Carbondale, Illinois, USA

This national survey found that hospice directors (n¼ 43) considered social workers most qualified, and most involved, in 12 of 24 interventions considered by social workers to define their role. This is a change from Kulys and Davis’ (1986, 1987) findings of a more limited social work role in hospice. The results of the cur- rent study provide new information about director attitudes, social work involvement, and the impact of efforts to develop the hospice social work field. Social work education should incorporate more end-of-life care content to continue this progress, and hospice social workers should continue to document their effectiveness on the hospice team.

KEYWORDS administration, counseling, hospice, interdisciplin- ary team, social work role

HOLISTIC FOCUS OF HOSPICE

When hospice was established in the United States in 1971, an interdisciplinary approach was the hallmark of its philosophy. Social work services have been an integral part of the provision of hospice care from the beginning of the hospice movement, and are required for Medicare certification of hospices.

Evidence exists of the importance of this holistic approach in hospice outcomes. Sontag (1997) measured team functioning in terms of full utiliza- tion of all disciplines on the team, level of morale, effective communication skills, support and trust between members, and effective conflict resolution

Received 31 January 2010; accepted 16 September 2010. Address correspondence to Dona J. Reese, PhD, MSW, LCSW, Associate Professor, School

of Social Work, Southern Illinois University, Mail Code 4329, 875 South Normal Avenue, Carbondale, IL 62901, USA. E-mail: [email protected]

Journal of Social Work in End-of-Life & Palliative Care, 7:383–406, 2011

Copyright # Taylor & Francis Group, LLC ISSN: 1552-4256 print=1552-4264 online

DOI: 10.1080/15524256.2011.623474

383

strategies. Using Sontag’s measure in a survey of a national random sample of 66 hospices, Reese and Raymer (2004) found that a higher level of team func- tioning was correlated with fewer average hospitalizations per patient, and lower home health costs, nursing costs, labor costs, and overall hospice costs.

After Medicare coverage of hospice services began in 1982, hospice became a professionalized service and gradually became oriented toward a medical model that focused primarily on physical aspects of care. Nonmedi- cal care was relegated to the background, often referred to as ‘‘ancillary ser- vices.’’ A classic survey of hospice staff and directors by Kulys and Davis (1986) found that social workers were substantially more involved in only two interventions and that nurses were providing most of the psychosocial care. In addition, hospice directors considered social workers to be best qualified in only three identified areas (Kulys & Davis, 1987).

KULYS AND DAVIS STUDY

In 1986, Kulys and Davis surveyed 34 hospices in Illinois. They conducted face-to-face interviews, usually at the hospice, of the hospice director, a social worker, a nurse, and a volunteer in each hospice. These individuals were selected by the hospice director for participation in the study. Not all categories of staff were available in all hospices. They interviewed a total of 29 social workers, 33 nurses, and 30 volunteers regarding the services they rendered to patients and their families. They did not specify whether the interviews were private or whether more than one interview was conducted. They developed categories of social services provided based on the National Association of Social Workers’ (NASW) Hospice Care: Policy Statement of 1982, as well as from the literature of that time (Buckingham & Lupu, 1982; Millett, 1979; Olsen & Olsen, 1967). The categories included Nursing, Case Management, Social-Psychological, and Daily Living. They also asked about administrative functions.

They asked staff members to estimate on a 3-point scale how frequently in an average week they provided each of a list of interventions within each service category (never or rarely, sometimes, or often). They also asked them to estimate how much time they spent providing each intervention (a half-hour or less, one hour, several hours or more). There was no verification of the accuracy of the staff estimates, but results were consistent with a previous national study (Buckingham & Lupu, 1982). They also asked for staff and hospice director opinions on which discipline was most qualified to provide each service, and reported on that in a follow-up paper in 1987. Three of the hospice directors were social workers, 23 were nurses, and 7 were other disciplines—including a physician, a psychologist, a minis- ter, and 1 director with no professional degree.

They found that, in general, the most frequently provided services also took the most time. Nursing Services were the realm of nurses, who provided

384 D. J. Reese

these interventions most frequently. The most frequently provided services overall were Case Management and Social-Psychological, and these were generally provided more frequently by nurses. In the Case Management cate- gory, social workers were a little more active than nurses and volunteers only in advocacy and referrals. Nurses provided more crisis intervention and case coordination within this category. In the Social-Psychological category, social workers were slightly more active than nurses and volunteers in only one area—social interaction. Nurses provided more counseling and bereavement counseling.

In the Daily Living category, volunteers were most active overall, but social workers were substantially more active in provision of financial coun- seling and civil and legal assistance (with a greater than 40% difference), and slightly more active than nurses in housekeeping and transportation. When asking about administrative duties, Kulys and Davis (1986) found that nurses were more involved in program development, staff supervision, and formal policy setting, and more often led staff support groups, while social workers were involved only in informal policy-setting.

Twenty-two of the 29 social workers were paid staff, but only 1 worked full-time as a hospice social worker. The others were part-time and held duties in addition to the hospice social worker position, such as serving as a hospital social worker. In contrast, the nurses were employed full-time, and had a significant role in the hospice. They did not fulfill multiple roles, but had one role, separate from other disciplines; that of providing nursing care.

In summary, many services typically considered part of the social work practice role, were provided most frequently by nurses. There were only two areas in which social workers were substantially more active than nurses: financial counseling and civil legal assistance. Social workers were generally employed part-time at the hospice and had other job responsibilities outside of hospice. At the same time, nurses were employed full-time and were more involved in the administration of the hospice.

Kulys and Davis (1986) concluded that social workers did not play a unique role in meeting the psychosocial needs of patients and families. They asked a question: Did the nurses perform services considered by social work- ers to be social work tasks because the social worker was not available due to being employed only part-time, or, because the nurses perceived themselves to be qualified to provide these services? In their 1987 follow-up article about this study, they answered this question with data from the study: 2=3 of the nurses studied believed nurses to be better qualified or just as qualified as social workers to provide services such as crisis intervention, advocacy, and case coordination. Directors seemed to agree. They considered social workers more qualified than nurses to perform social service functions in only three areas: using community resources, making referrals to community resources, and providing financial information. Considering these results, Kulys and Davis predicted downsizing of the social work role in hospice

Interdisciplinary Perceptions 385

in an attempt to cut costs and called for demonstration of the effectiveness of social work services to prevent this from happening.

UNDERUTILIZATION OF SOCIAL WORKERS ON THE HOSPICE TEAM

Studies over the years have continued to reveal that social workers’ expertise has not been fully utilized on the hospice team (Csikai, 2002). Social workers in many areas of the country have seen their caseloads rise as colleagues were laid off or vacancies not filled (MacDonald, 1991). Hospices hire many more nurses than social workers (National Hospice and Palliative Care Organization [NHPCO], 2002). In a 2004 national review of 330 patient charts within 66 hospices (Reese & Raymer, 2004), there were 18 nurses, but only 6 social workers, for every 100 patients. In addition, some social workers still had responsibilities in addition to the social work role, such as bereavement counselor. Performing these additional duties predicted less positive social work outcomes (Reese & Raymer, 2004).

In this same study, the median number of nursing visits to a single patient was 10, while for social workers it was 2. Social workers participated in the initial intake interview in only 38% of hospices. At the same time, nursing caseloads were much lower than social worker caseloads. Nurses had an average of 5 cases and social workers had an average of 18 cases at any given time. Patients were often referred to social work services by their nurses, but research has indicated that social service needs are often not accurately identified by the nurse (Dyeson & Hebert, 2004). Some hospice professionals consider social workers unqualified to provide counseling (Hodgson, Segal, Weidinger, & Linde, 2004). As a result, social workers may have difficulty in gaining access to patients and families who most need their services (Dyeson & Hebert, 2004).

Why have nurses and administrators viewed social work services as non- essential? A number of reasons have been proposed. One is that, as noted above, most hospice administrators are nurses and competition has existed between nurses and social workers in the hospice field (Kulys & Davis, 1987; Sontag, 1996). Secondly, nurses may view themselves as equally qualified to provide psychosocial care (Kulys & Davis, 1987; Egan, 1998), and consider social workers as unqualified to provide therapy (Hodgson, Segal, Weidinger, & Linde, 2004). An explanation for this viewmay be the lack of familiarity with the content of social work education. Another reason for a lack of recognition of the importance of social work services in hospice is the lack of documentation of social work outcomes. Finally, a factor that exacer- bates these problems is the lack of end-of-life care content in social work education, which creates a workforce that is unprepared to explain its role or in fact to achieve a level of excellence in the services provided. Hospice

386 D. J. Reese

social workers have made little progress, until recent years, in developing standards for practice, or certifying or credentialing workers.

EFFORTS OF SOCIAL WORKERS TO ADVANCE THE FIELD

Since 1994, the hospice social work profession has taken a number of steps toward advancement of the field. These efforts have developed social work expertise through improving social work education, increasing the number of social work scholars devoted to hospice research, defining the social work role in hospice, documenting social work outcomes, disseminating knowl- edge and providing continuing education to practitioners, and promoting the social work role to other disciplines. This increased expertise may play a part in improving hospice directors’ views, and the views of other hospice professionals, of their ability to fulfill the social work role. The following out- lines some of these important accomplishments.

1994—Social Worker Section, National Council of Hospice and Palliative Professionals (NCHPP), National Hospice and Palliative Care Organization, Guidelines for Social Work in Hospice (NHPCO). These were the first social work guidelines developed in the field of end-of-life care.

1999—Project on Death in America (PDIA) Social Work Leadership Development Awards. Grace Christ from Columbia University obtained a grant from the Soros Foundation and created the Social Work Leadership Development Awards within the PDIA (Christ & Sormanti, 1999). This project funded 42 social work scholars and mentored their development into national leaders in end-of-life care. Information about this award program can be found at: (http://www.soros.org/resources/articles_publications/ publications/pdia_20040101/pdia_20040101.pdf).

2000—Society for Social Work Leadership in Health Care developed standards for social workers in end-of-life (see http://www.gswi.org/ programs/hfs.html).

2002—National Social Work Summit on End-of-Life and Palliative Care. Grace Christ and Susan Blacker established a consortium of organiza- tions to explore issues in the field and develop an agenda for development. This consortium met at Duke University (the ‘‘Duke Summit’’), urging social work education content as one of the top priorities (Kramer, Hovland-Scafe, & Pacourek, 2003). Developments in the field resulting from the Summit meetings included new social work curricula and continuing education pro- grams in end-of-life care. In addition, networking among these scholars and professionals led to development of a national research agenda and newly articulated standards for practice in the field.

2003—Association of Oncology Social Work Board of Oncology Social Work Certification. This Board set forth standards reflecting the knowledge base, skill sets, and ethical standards specific to psychosocial oncology. They felt that this process would ensure a higher level of competency and

Interdisciplinary Perceptions 387

demonstrate to clients as well as employers, the health care system, and the community that oncology social workers are committed to a high quality of service. This organization also developed online courses to further this effort. See the Association of Oncology Social Work website at: (http://www.aos- w.org/).

2003—End-of-Life Care Researchers’ Interest Group established within the Society for Social Work and Research. See their website at: (http:// www.sswr.org/).

2003—Journal of Social Work in End-of-Life & Palliative Care estab- lished. This journal, the first and only one specifically for social workers in the field of end-of-life and palliative care, edited by leading researcher and PDIA Social Work Leader Ellen L. Csikai, brought together information on social work standards for practice, research results, needs for further research, ethical issues, and policy and practice updates. The journal’s web- site can be found at: (http://www.informaworld.com/smpp/title~db=all~ content=t792322386~tab=summary).

2003—NASW Certified Social Worker in Health Care. To obtain this certification, a social worker must demonstrate specific standards for higher levels of experience and knowledge (see http://www.socialworkers.org/).

2004—Living With Dying: A Comprehensive Resource for End-of-Life Care was coedited by Joan Berzoff (PDIA Social Work Leader) and Phyllis Silverman. This was the first textbook on end-of-life care social work (see http://cup.columbia.edu/book/978-0-231-12794-3/living-with-dying/reviews).

2004—National Association of Social Workers Standards for Social Work Practice in Palliative and End of Life Care. Elizabeth Clark, a PDIA Social Work Leader, stated that end-of-life care was one of the top national priorities of the National Association of Social Workers (NASW). NASW pub- lished these standards in 2004, which included ethics and values, knowledge, assessment, attitude and self-awareness, empowerment and advocacy, docu- mentation, interdisciplinary teamwork, cultural competence, continuing education, and supervision, leadership, and training (see http://www.naswdc. org/practice/bereavement/standards/default.asp).

2004—National Hospice Social Work Survey (Reese & Raymer, 2004). This study surveyed a stratified random sample of 330 patient cases within 66 hos- pices. Results indicated that increased social work services predicted lower home health aide costs, lower nursing costs, lower average cost per patient, lower pain control costs, lower labor costs, lower overall hospice costs, better team functioning, fewer home health aide visits, better client satisfaction, fewer nights of continuous care, fewer patient hospitalizations, and a lower severity rating of the hospice case. Remarkably, this was accomplished with an average of two social work visits to a client (see http://findarticles.com/ p/articles/mi_hb6467/is_3_49/ai_n29107325/?tag=content;col1).

2005—Social Work End-of-Life Care Education Project, by PDIA Social Work Leaders Ellen L. Csikai and Mary Raymer. Csikai and Raymer (2005)

388 D. J. Reese

conducted research on the educational preparation needed in end-of-life care, and then developed a train-the-trainer workshop to promote this education.

2006—Social Work Assessment Tool (SWAT; Reese et al., 2006). The SWAT was the first measure of hospice and palliative care social work out- comes based on social work research. Previous assessment of social work services has been largely limited to process evaluations conducted by nonso- cial workers. The SWAT included items measuring the major psychosocial and spiritual variables known to predict hospice outcomes for clients— cultural and religious beliefs, suicidal ideation, desire to hasten death, death anxiety, preferences about environment, social support, financial resources, safety issues, comfort issues, complicated anticipatory grief, denial, and spirituality. A national model performance improvement project with a convenience sample of 101 patients and 81 primary caregivers showed that SWAT scores for patients improved significantly between the first and second social work visit. Although there was a trend for scores to improve for primary caregivers, the difference was not statistically significant. Available for NHPCO members at: (http://nhpco.org/templates/1/homepage.cfm).

2008—Social Work in Hospice and Palliative Care Network was founded (see http://www.swhpn.org/).

2008—National Hospice and Palliative Care Organization, National Council of Hospice and Palliative Professionals, Social Worker Section, Guidelines for Social Work in Hospice, was updated with the new Medicare Conditions of Participation. Can be obtained in the Members Only section at: (http://nhpco.org/templates/1/homepage.cfm).

Many additional efforts were also made during the last decade, including establishment of the Smith College End-of-Life Care Certificate Program by Joan Berzoff (http://www.smith.edu/ssw/geaa/academics_cecertificate.php# elc) and the Advanced Professional Certificate Program in Palliative and End-of-Life Care at New York University (http://www.nyu.edu/socialwork/ pdf/1241189616.pdf), established by Barbara Dane and now led by Susan Gerbino. Research has begun to reflect changes in the field; for example, a study which documented a moderate (as opposed to previous minimal) level of educational preparedness of social workers to assist elders with end-of-life care preferences (Kane, Hamlin, & Hawkins, 2005). And in 2005, in proposing new hospice conditions of participation, the Center for Medicare and Medi- caid Services reflected awareness of the importance of social work services to hospice outcomes, referring to Reese & Raymer’s (2004) finding that MSW-prepared social workers have better service outcomes.

PURPOSE OF THE STUDY

In consideration of the efforts made by end-of-life care social workers to advance the field, the purpose of the current study was to explore whether

Interdisciplinary Perceptions 389

interdisciplinary perceptions about the social work role have changed since the classic Kulys and Davis study in 1986. The study explored the same variables as Kulys and Davis: disciplines most qualified to provide a list of interventions and that spend the most time providing these interventions. However, the way in which they were measured differed. The Kulys and Davis’ list of interventions was augmented based on current literature and standards for practice. Kulys and Davis used in-person interviews of hospice staff and directors, while this study used a self-administered mailed survey of hospice directors and a few telephone interviews of those who did not respond. Thus, the study is not an exact replication of the Kulys and Davis study, but it provides an assessment of developments in the hospice social work field, in terms of the participation of social workers in interventions they consider their own role, as well as opinions of directors of their expertise.

Understanding hospice directors’ perceptions of the social work role is vital to full utilization of social workers on the hospice team, and thus to patient and family outcomes. There has been a trend in cost-reduction efforts by directors to reduce social work services, as predicted by Kulys and Davis, reflecting a view of social work as an ‘‘ancillary service’’; in other words, nice, but not necessary. Social workers have gathered evidence to the contrary. Not only are social work services vital to improved client outcomes, but they reduce hospice costs as well. As hospice directors become aware of this evidence, they may increase social work services, leading to better quality of life in dying for hospice clients.

METHODOLOGY

In order to assess whether hospice director views of social work services have changed, a mail survey was conducted of the directors of 100 hospices nation- wide. A systematic random sample was developed from a list of approximately 2,560 hospice members of NHPCO (2006) at that time. The first two member hospices listed on the NHPCO’s website were selected from each state. Tele- phone interviews were also conducted of some who did not respond to the mail survey, in order to increase our response rate. Forty-three hospices parti- cipated, representing 34 states and Washington, DC (a 43% response rate).

Measures

A questionnaire, ‘‘Perceived Roles of Team Members in Hospice,’’ was developed for the study (See Appendix 1). It listed 24 interventions considered by social workers to represent their role in hospice (see Table 1). These inter- ventions were based on Kulys and Davis’ (1986) original questionnaire (see starred items in Table 1), as well as on subsequent social work research regarding the social work role in hospice. Items reflected the author’s model

390 D. J. Reese

of psychosocial and spiritual variables that predict hospice outcomes (Reese, 1995–1996), as well as the Social Work Assessment Tool (Reese et al., 2006). Use of these items was justified by existing evidence that social workers address these issues in the field; and in most cases address them more often than nurses (Reese & Brown, 1997). The items are consistent with NASW’s Standards for Social Work Practice in Palliative and End of Life Care, and with NHPCO’s Guidelines for Social Work in Hospice.

Interventions were listed and briefly defined in the first column. In the second column, directors were asked to circle the number of the discipline

TABLE 1 Hospice Directors’ Views of Which Professional Discipline Is Most Qualified to Provide Psychosocial and Spiritual Interventions

Discipline most qualified to provide intervention—Directors from all disciplines

Intervention Nurse (%)

Social worker (%)

Spiritual caregiver

(%) All (%)

Multiple disciplines

most qualified

(%)

�Financial counseling 0 98 0 0 2 �Referrals 7 83 0 7 2 Assessment of emotional and social problems

12 79 2 2 5

Counseling about suicide 0 67 12 5 16 �Facilitating social support 0 66 7 0 27 Counseling about denial 20 54 2 10 15 Promoting cultural competence 8 54 5 14 19 Community outreach 3 50 8 13 26 �Counseling about anticipatory grief 5 46 27 7 15 �Crisis intervention 32 45 0 12 10 �Bereavement counseling 0 42 28 0 30 Counseling about death anxiety 21 28 27 16 9 Intake interview 18 2 0 0 75 �Civil & legal assistance 95 0 0 0 5 On-call responsibilities 90 0 0 5 5 �Counseling about safety issues 77 7 0 5 12 �Supervising hospice workers 71 7 2 5 14 �Directing the hospice 71 7 2 2 16 Discharge planning 63 28 0 0 9 Upholding preferences about the environment

45 33 0 10 12

�Advocacy 42 24 0 22 12 Supporting direct spiritual experience 0 0 88 5 7 Discussing meaning of life 2.3 19 58 12 9 Ensuring culturally competent end-of-life decisions

5 14 52 17 11

Note. �Interventions included in the 1986 Kulys and Davis study. Valid of respondents indicating that disci-

pline is most qualified to conduct each activity; most qualified predicts spending most time for all items

(Significance¼ .000).

Interdisciplinary Perceptions 391

that spends the most time providing each intervention. Options were given for Nurse, Social Worker, Spiritual Caregiver, All, or Other. A blank line was provided for the respondent to write in an additional discipline for ‘‘Other.’’ The third column was set up the same way, asking directors to circle the number of the discipline that he=she thinks is most qualified to provide the intervention.

The questionnaire was not pilot-tested before use. It was tested for reliability, however. Cronbach’s alpha for the subscale of which discipline spent the most time providing each intervention was .79. Alpha for the subscale of which discipline was most qualified to provide each intervention was .81.

RESULTS

The sample of hospice directors was 95.3% white (non-Hispanic), 2.3% Hawaiian=Okinawan=Chinese, and 2.3% Native American. Gender was 88.4% female, and 11.6% male. The mean age was 49.76 (SD¼ 8.07), with a range from 30–64. Mean years of hospice experience was 9.90 (SD¼ 6.17). The professional discipline of the directors was 80.5% nursing (n¼ 33), 9.8% social work (n¼ 4), 2.4% spiritual caregiver (n¼ 1), and 7.3% other (n¼ 3). The highest degree held by directors who were nurses was 39.4% BSN, 21.2% MSN, 21.2% Associate Degree, 9.1% BA, 3.0% MPH, and 6.1% missing. Of the four directors who were social workers, one held a MS degree (25%), and three held MSW degrees (75%). The degree held by the one spiri- tual caregiver was a Master of Divinity.

Results indicated changes in a number of areas since the Kulys and Davis (1986) study. Although hospice directors still believe that nurses are most qualified to supervise workers (71%) and to direct the hospice (71%), they considered social workers to be the most qualified to address 12 out of 24 areas (See Table 1).

Directors were in close agreement about which discipline was the most qualified to address each issue. The distinctions between roles were quite clear, with large differences between the percentage of directors indicating that a certain discipline was most qualified for a task and the percentage of directors indicating that another discipline was qualified. The directors reported for all items that the discipline most qualified to address the issue also spent the most time addressing that issue. In all cases, chi square was significant at the .000 level, indicating that the discipline considered most qualified to address an issue is in the directors’ perception the discipline that spends the most time addressing that issue.

There was no correlation between age and total items for which a direc- tor indicated that social workers were most qualified (r¼�.09, p¼ .62), or years of experience and total items (r¼ .10, p¼ .52). It was not possible to test

392 D. J. Reese

for differences in opinions by discipline of director, since only four directors were social workers and only one director was a spiritual caregiver. On average, social workers thought that social workers were most qualified to provide 9.75 of the interventions (SD¼ 6.08). Nurses thought that social work- ers were most qualified to provide 9.21 of the interventions (SD¼ 3.41). The one spiritual caregiver thought that social workers were most qualified to pro- vide 9.00 of the interventions (no standard deviation calculation possible), and other disciplines 9.33 (SD¼ 6.81). There was some variation in for which interventions each discipline thought social workers were most qualified; the sample as a whole indicated social workers were most qualified for 12 of the interventions.

Since social workers only felt they were most qualified for 9.75 of the interventions, this raises the question of who they thought was most qualified to provide the other roles in hospice. Since the number of directors who were social workers by discipline was so small (n¼ 4), no generalizations can be made. It is interesting, though, to note their views. These directors who were social workers unanimously agreed that social workers were most qualified in only three areas: referrals (100%), financial counseling (100%), and assess- ment of psychosocial problems (100%). Seventy-five percent of them thought social workers were most qualified in counseling about thoughts of suicide or wanting to hasten death. Only 1=3 thought the social worker was most quali- fied for supervising hospice social workers or directing the hospice. They thought the nurse was more qualified for crisis intervention (50%), on-call responsibilities (75%), and upholding preferences about the environment (50%). They thought the spiritual caregiver was more qualified for supporting direct spiritual experience (75%).

Social Work Role

Consistent with the Kulys and Davis study (1986), financial counseling was still the primary function of social workers according to the sample of hos- pice directors as a whole; 98% noted that social workers were most qualified for this intervention (see Table 1). Also, social workers were perceived as best qualified to refer clients to services (83% of directors).

The other 10 issues in Table 1 for which social workers were con- sidered the most qualified represent a major change in directors’ percep- tions of the social work role. Assessment of psychosocial problems was clearly seen as part of the social work role (79%). It is interesting that, nevertheless, 21% of directors did not think the social worker was most qualified in this area. Hospice directors considered social workers most qualified for counseling in a number of areas—including crisis intervention (45%) and counseling about thoughts of suicide or wanting to hasten death (67%), denial (54%), anticipatory grief (46%), death anxiety (28%), and bereavement (42%).

Interdisciplinary Perceptions 393

Several other issues were also considered part of the social work role: facilitating social support (66%), promoting cultural competence (54%), and community outreach (50%). Also, notably, directors thought social work- ers and nurses were both qualified to conduct the intake interview (75% said both social workers and nurses were qualified).

Nursing Role

In the view of these professionals, nurses were most qualified in eight of the areas considered by social workers to represent their own role (See Table 1). Ninety-five percent of directors thought that nurses were most qualified to provide civil and legal assistance. Directors also thought nurses were most qualified to provide on-call services (90%), counsel about safety issues (77%), supervise hospice workers (71%), direct the hospice (71%), and pro- vide discharge planning (63%). Finally, they considered nurses most quali- fied to advocate to uphold the patient’s preferences about the environment (45%) and to advocate for the patient in general (42%).

Spiritual Caregiver Role

Directors considered spiritual caregivers to be most qualified to address three areas: supporting direct spiritual experience (88%), discussing the meaning of life (58%), and ensuring culturally competent end-of-life decisions (52%). Interestingly, for ensuring culturally competent decisions, all staff were con- sidered equally competent by 17% of the directors, and social workers were considered most qualified to address this area by only 14%.

DISCUSSION

These findings reflected some of the traditional views of other disciplines of the social work role in hospice, as well as some striking departures. The following discussion will focus on these points, as well as limitations to keep in mind when interpreting the results, relevance for the literature and current articulations of the social work role, and implications for further research and social work education.

Views of Social Work Role and Functions

The perception that a primary social work role includes responsibility for finan- cial counseling andmaking referrals has not changed since the Kulys and Davis study (1986); this is not surprising. What may be somewhat surprising and encouraging is the great increase in the number of areas that are attributed to the social work role. Seventy-five percent of directors thought that social workers and nurses were both qualified to conduct the intake interview. Direc- tors overwhelmingly wrote in ‘‘both nurse and social worker’’ next to their

394 D. J. Reese

answer indicating that multiple disciplines were most qualified. Based on this author’s practice experience, this may have meant that the social worker and the nurse should jointly conduct the intake interview. Still, only 18% thought nurses were most qualified for this task, and 2% thought social workers were most qualified to conduct this interview on their own.

This is an important finding since in the National Hospice Social Work Survey (Reese & Raymer, 2004), social workers participated in the intake interview in only 38% of the hospices. The evidence from that study as well as others (i.e., Mahar, Eickman, & Bushfield, 1997; Paquette, 1997; Silberstein, 1998) showed that social work involvement in the intake inter- view predicted lower hospice costs, leading these researchers to predict that early social work involvement prevents crisis and the need for other services. As mentioned above, it would be helpful to collect more objective current information about the extent to which social workers provide each inter- vention. In other words, in what percentage of hospices do social workers conduct or jointly conduct the intake interview?

The most surprising finding of this study is that social workers believed that they were most qualified for only 9.75 out of 24 interventions considered within the hospice social work profession to comprise their role. There were only four directors that identified with the social work discipline, so no con- clusions can be made. This finding raises important questions for future research, however. The areas not considered by directors to represent the social work role will be discussed below.

CIVIL AND LEGAL ASSISTANCE

None of the directors thought that social workers were most qualified for this service; 95% thought that nurses were most qualified. This represents a striking change since civil and legal assistance was amajor social work role according to the Kulys and Davis (1986) study. This responsibility is also currently included in the NASW Standards for Social Work Practice in Palliative and End of Life Care and is part of addressing end-of-life care decisions as included in the Social Work Assessment Tool (SWAT; Reese et al., 2006). Civil and legal assist- ance includes helping patients establish advance directives, which is enhanced through social work intervention (Schonwetter, Walker, & Robinson, 1995) and through a home visit by a social worker (Ratner, Norlander, & McSteen, 2001).

ON-CALL RESPONSIBILITIES

Ninety percent of directors thought nurses were most qualified to provide on-call services. It may be interesting to remember that for all categories where a discipline was considered most qualified, directors also estimated that the same discipline was spending the most time providing that inter- vention. Thus, it is likely that nurses, as opposed to social workers, were overwhelmingly responsible for on-call duties. Research indicates though,

Interdisciplinary Perceptions 395

that with an increased level of social work services, fewer on-call visits by nurses are needed (Reese & Raymer, 2004). This may imply that in many cases, on-call visits are requested based on unmet psychosocial needs. Failing to participate in on-call duties communicates to the other staff that social workers are not essential to the care of patients and families.

COUNSELING ABOUT SAFETY ISSUES

Seventy-seven percent of directors thought nurses were most qualified to counsel about safety issues. This is understandable if information is needed about physical care. Denial of terminality may also pose safety issues, how- ever. For example, a lack of awareness of the severity of the illness on the part of the patient or loved one can result in lack of proper care for the patient or the patient’s children. Addressing denial requires knowledge about intervention with the family system, helping family members with changing roles as the patient becomes vulnerable, and helping to resolve death anxiety with which clients may cope through denial. A social worker may be helpful in addressing these issues.

SUPERVISING HOSPICE WORKERS AND DIRECTING THE HOSPICE

Seventy-one percent of directors thought that nurses were most qualified to supervise hospice workers and direct the hospice. Reese and Raymer (2004) found, though, that if a social worker is supervised by a social worker, s(h)e will provide consultation to the hospice team on a greater number of issues—such as cultural diversity, psychosocial issues, spirituality, viewing client concerns from a systems perspective, advocacy for client self- determination, providing emotional support or counseling to other members of the team, etc. In turn, they found that if there are more issues addressed by the social worker on the hospice team, there are fewer home health aide visits to the patients, thereby saving the hospice money. No research was found on the supervision of other disciplines, or direction of hospices by social workers; this is an important area for future study.

DISCHARGE PLANNING

Sixty-three percent of directors thought nurses were most qualified for discharge planning. In the author’s practice experience, this was traditionally the social worker’s role in the medical setting. Medical social workers have been reluctant to engage in referral to concrete services though, feeling overqualified for this task. As social workers gave up this role, and adminis- trators made efforts to downsize social work services in order to cut costs, nurses were assigned this ‘‘case management’’ role. This traditional function of the social worker has been lost through medical social workers’ reluctance

396 D. J. Reese

to engage in it. This contributes to the view that social workers are an ‘‘ancillary service’’ in a medical setting.

UPHOLDING CLIENTS’ PREFERENCES ABOUT THE ENVIRONMENT AND ADVOCACY

Hospice philosophy emphasizes client self-determination, and hospice social workers serve as advocates for client wishes. One area of advocacy is upholding a client’s preferences about the environment; this refers to prefer- ences for remaining at home or in an inpatient setting, whether s(h)e wants his=her bed to be placed in the bedroom or living room, etc. Directors’ opinions of who was most qualified for these roles were more equally div- ided between nurses and social workers. These roles, reflecting foundational social work values, are part of the NASW Standards and the SWAT.

SUPPORTING DIRECT SPIRITUAL EXPERIENCE AND DISCUSSING MEANING OF LIFE

Spirituality is defined by this author as a two-dimensional construct, including philosophy of life and unity consciousness. Direct spiritual experience, often observed in hospice patients’ experience (Reese, 2011; Pflaum & Kelley, 1986; Pollner, 1989), can be viewed as falling within the unity consciousness dimen- sion. Discussing meaning of life can be seen as falling within the philosophy of life dimension. Relationship with God, at times part of a patient’s direct spiritual experience, was the issue most frequently addressed by social work- ers in a chart review of spiritual and psychosocial issues addressed with patients in one Midwestern hospice (Reese & Brown, 1997). The National Hospice Social Work Survey (Reese & Raymer, 2004) found that the family functioning score was predicted by the total number of spiritual issues addressed by the social worker in the case (r¼ .16, p¼ .01), and by whether the social worker obtained spiritual support in the case (r¼ .17, p¼ .004). In the current study, 75% of directors who were social workers thought spiritual caregivers were most qualified for this intervention. This reflects a lack of knowledge about advances in the field of spirituality and social work.

ENSURING CULTURALLY COMPETENT END-OF-LIFE DECISIONS

Although models of cultural competence have been developed specifically for hospice, they are not generally being used (Ahmann, 2002; Kemp, 2001), and some hospice directors have denied a need for cultural competence among their staff members (Reese, Melton, & Ciaravino, 2004). New Medicare Conditions of Participation require that hospices document their attempts toward cultural competence. Social workers have a responsibility to use their specific training in this area to lead the team. The hospice directors in this study recognized social workers’ expertise in promoting cultural competence, and in community outreach, which is an important aspect of culturally

Interdisciplinary Perceptions 397

competent services, but see ensuring culturally competent end-of-life deci- sions as the purview of the spiritual caregiver.

Quality of Interventions Provided to Hospice Patients and Families

The findings of the current study revealed that social workers are not engaged in over one-half of the roles ascribed to them by their profession, and that these interventions are left to be fulfilled by other disciplines. This raises a concern about the quality of the psychosocial and spiritual inter- ventions that are being provided to hospice patients and families by other professionals without specific training in these interventions. It should be noted that research has documented a striking impact of social work ser- vices on patient and hospice outcomes (Mahar et al., 1997; Paquette, 1997; Reese & Raymer, 2004; Reese et al., 2006; Silberstein, 1998). Regardless of this, there remains a need for specific social work training in interventions to address the psychosocial and spiritual needs of hospice patients and families.

In this study, all of the directors whom were social workers held a mas- ter’s degree. The participating spiritual caregiver held a Master of Divinity degree, but 21.2% of the nurses held an associate degree, 48.5% had a bache- lor’s degree, and only 24.2% held a master’s degree. Conclusions about the qualifications of hospice staff are limited here because these respondents held the position of director rather than direct service provider. The National Hospice Social Work Survey documented similar results: 81% of the social workers held a MSW degree, while the majority of nurses held a bachelor’s degree or less (Reese & Raymer, 2004). The shortage of bachelor’s prepared nurses in this country makes it an ever more common necessity to hire nurses with associate degrees and therefore development of training in the skills they lack is essential (Chaya et al., 2008). Further research is needed to explore whether hospice staff members possess the training and skills required to fulfill the social work functions in the areas in which social work intervention is absent.

IMPLICATIONS FOR SOCIAL WORK EDUCATION

The results of this study clearly indicate that the perception of the social work- er’s role on the hospice team has greatly expanded since the classic Kulys and Davis study in 1986. The efforts of the social work profession outlined above have most likely played a major role in this development. At the same time, the hospice directors still view other disciplines as most qualified to perform over one-half of the activities that social workers typically claim as their own; so much work remains to be done. Ongoing education with other hospice disciplines about the social work role is essential. However, before this can

398 D. J. Reese

be done, the social work profession must be clear about the appropriate role. The fact that directors whowere social workers by discipline claimed less than one-half of the roles as their own shows that social work education content has not played out as important in this respect in the practice world.

In the last decade, social work literature has decried the lack of attention in social work education to end-of-life care. Social workers have not con- sidered themselves well-trained for hospice social work and have not been clear about their role on the team (Csikai & Raymer, 2003; Kovacs & Bronstein, 1999; Kramer, 1998).The efforts in the end-of-life care field, as discussed above in this article, have greatly contributed to the development of curricu- lum and understanding of the contributions of social workers in the practice environment. Results of this study imply that efforts to increase the knowledge of social workers may have been effective in increasing their reputation in the field. It is vital, in order to continue this progress, that the following areas are addressed:

. incorporate a holistic approach including biopsychosocial=spiritual aspects of end-of-life care;

. address micro, mezzo, and macro levels of practice;

. incorporate current standards for practice developed by professional social work organizations;

. incorporate current literature;

. stress research skills and orient students toward documentation of social work outcomes.

Areas to include in education about direct practice on the micro level include bereavement issues; intervention with spirituality; issues of suicide including suicidal ideation and assisted suicide, denial of terminality, crisis intervention and on-call responsibilities, advance directives, and theoretical frameworks for practice. Areas to address on the mezzo level are skills in advo- cacy with the interdisciplinary team for client self-determination, articulating the social work role to other disciplines, and promotion of high-functioning interdisciplinary teams.

A very challenging but exciting and effective approach to this is through an interdisciplinary class. In such a class, disciplines can learn about each other’s expertise and differences in values and theoretical perspectives. In the author’s academic experience, this may be challenging due to conflicts over values and beliefs that are likely to arise in class. This experience in itself is very illuminating for students though, who learn firsthand what the con- flicts are and are prepared to respect each other’s knowledge and negotiate differences on interdisciplinary teams in practice.

Additionally, social workers should be prepared to function in the role of supervisor and administrator in the hospice setting. Finally, on the macro level, social work education should prepare students to take on leadership

Interdisciplinary Perceptions 399

roles in hospice organizations and assist in the development of cultural competence, including community outreach efforts.

Limitations of the Study

Several limitations of this study should be kept in mind when considering the results. The study is not an exact replication of the Kulys and Davis (1986) study, using somewhat different measures and procedures. The updated measure could also be considered a strength of the study, however, since it reflects current research and standards in the field. It is not possible to know the cause of the change in directors’ opinions of the social work role; we can only assume (and hope) that part of it may have been from the efforts of social workers to advance the field. The small sample size is another limi- tation. A larger, random sample, and one that includes an equal number of nurses, social workers, and spiritual caregivers would be helpful in obtaining a clearer picture of differences in perceptions between the disciplines.

The measure was developed for this study and was not tested for val- idity or pilot-tested, although reliability was acceptable. The item referring to counseling about suicidal ideation or desire for a hastened death could possibly be separated into two items, to clarify the difference between suicidal ideation stemming from depression and requiring a mental health assessment, as opposed to desire for a hastened death based on a rational preference for assisted suicide. Future research should further test the instru- ment and revise the items to more objectively measure the exact amount of time spent on each intervention.

CONCLUSION

This study provided updated information about hospice directors,’ including directors who were social workers by discipline, views of social work contri- butions to the team. It provided evidence of the advancement of the field since the Kulys and Davis (1986) study. It also provided a reliable instrument measuring a concise list of interventions comprising the hospice social work role, based on current research and policy statements in our field, and provides evidence regarding which discipline is providing each intervention.

It must be reemphasized, though, that one of the reasons for the limited regard of directors and nurses toward social work expertise is that social work education and documentation of outcomes has been lacking. Social workers themselves have a view of the social work role that differs from research evidence and professional guidelines for practice. This indicates that this information is not being communicated to them effectively.

New challenges still await us in incorporating cutting edge research and practice knowledge in end-of-life care into content conveyed in social work education. Questions remain about the quality of psychosocial and spiritual

400 D. J. Reese

care being provided, especially if it is not being provided by social workers. In addition, despite quite a bit of development in documenting hospice social work outcomes, in terms of developing an instrument based on social work research and its increasing implementation in the field, the need expressed by Kulys and Davis in 1986 for documenting social work outcomes has not been fulfilled. After developing this documentation, it must be trans- mitted to the other disciplines in the field in order to enhance the conceptua- lization of the role of the hospice social worker on the team.

Despite these remaining challenges, this study indicated that a great deal of progress has been made in the field of hospice social work, brought about by our own efforts to advance our practice. This is quite gratifying and shows that in the social work tradition of taking the initiative to create change, ‘‘we are the ones we have been waiting for’’ (Jordan, 1980). We are at a new level of development now in this area of practice.

REFERENCES

Ahmann, E. (2002). Developing cultural competence in health care settings. Pediatric Nursing, 28(2), 133–138.

Berzoff, J., & Silverman, P. (Eds.). (2004). Living with dying: A comprehensive resource for end-of-life care. New York, NY: Columbia University Press.

Buckingham, R., & Lupu, D. (1982). A comparative study of hospice services in the United States. American Journal of Public Health, 17(5), 455–463.

Chaya, J., Reilly, M., Davin, D., Moriarty, M., Nero-Reid, V., & Rosenfeld, P. (2008). Preparing newly licensed associate degree nurses to work in home health care. Home Health Care Management & Practice, 21(1), 44–53.

Christ, G., & Sormanti, M. (1999). Advancing social work practice in end-of-life care. Social Work in Health Care, 30(2), 81–99.

Csikai, E. L. (2002). The state of hospice ethics committees and the social work role. Omega: Journal of Death and Dying, 45(3), 261–275.

Csikai, E. L., & Raymer, M. (2003). The social work end-of-life care education project: An assessment of educational needs. Hospice & Palliative Care Insights, 2, 8–9.

Csikai, E. L., & Raymer, M. (2005). Social workers’ educational needs in end-of-life care. Social Work in Health Care, 41(1), 53–72.

Dyeson, T., & Hebert, C. (2004). Discrepant perceptions of home health care professionals regarding psychosocial issues of older patients. The Gerontologist, 44(1), 409.

Egan, K. (1998). Patient-family value based end-of-life care model. Largo, FL: The Hospice Institute of the Florida Suncoast.

Hodgson, H., Segal, S., Weidinger, M., & Linde, M. B. (2004). Being there: Contribu- tions of the nurse, social worker, and chaplain during and after a death. Genera- tions, 28(2), 47–52.

Jordan, J. (1980). Poem for South African women. In Passion: New poems 1977–1980. Boston, MA: Beacon Press.

Interdisciplinary Perceptions 401

Kane, M. N., Hamlin, E. R. II, & Hawkins, W. E. (2005). Perceptions of preparedness to assist elders with end-of-life care preferences. Journal of Social Work in End-of-Life and Palliative Care, 1(1), 49–69.

Kemp, C. (2001). Culture and the end of life. Journal of Hospice and Palliative Nursing, 3(1), 29–33.

Kovacs, P., & Bronstein, L. (1999). Preparation for oncology settings: What hospice workers say they need. Health and Social Work, 24(1), 57–64.

Kramer, B. (1998). Preparing social workers for the inevitable: A preliminary inves- tigation of a course on grief, death, and loss. Journal of Social Work Education, 34(2), 1–17.

Kramer, B., Hovland-Scafe, C., & Pacourek, L. (2003). Analysis of end-of-life content in social work textbooks. Journal of Social Work Education, 39(2), 299–320.

Kulys, R., & Davis, M. (1986). An analysis of social services in hospice. Social Work, 11(6), 448–454.

Kulys, R., & Davis, M. (1987). Nurses and social workers: Rivals in the provision of social services? Health & Social Work, 12(2), 101–112.

MacDonald, D. (1991). Hospice social work: A search for identity. Health and Social Work, 16(4), 274–280.

Mahar, T., Eickman, L., & Bushfield, S. (1997, September). Efficacy of early social work intervention. Paper presented at the National Hospice and Palliative Care Organization’s 11th Management and Leadership Conference, Washington, DC.

Millett, N. (1979). Hospice: Challenging society’s approach to death. Health and Social Work, 4(1), 130–150.

National Association of Social Workers. (1982). Hospice care: Policy statement. NASW News, 27(1), 19.

National Association of Social Workers. (2004). NASW standards for social work practice in palliative and end of life care. Washington, DC: Author.

National Hospice, & Palliative Care Organization. (1994). Guidelines for social work in hospice. Alexandria, VA: Author.

National Hospice, & Palliative Care Organization. (2002). The 2001 Data Set Survey: Building a national hospice database. Newsline, 12(1), 1–8.

National Hospice, & Palliative Care Organization. (2006). NHPCO facts and figures. Alexandria, VA: Author.

National Hospice, & Palliative Care Organization. (2008). Guidelines for social work in hospice, revised. Alexandria, VA: Author.

Olsen, K. M., & Olsen, M. E. (1967). Role expectations and perceptions for social workers in medical settings. Social Work, 12, 70–78.

Paquette, S. (1997, September). Social work intervention and program cost reduction outcomes. Paper presented at the National Hospice and Palliative Care Organization’s 11th Management and Leadership Conference, Washington, DC.

Pflaum, M., & Kelley, P. (1986). Understanding the final messages of the dying. Nursing, 86, 16(60), 26–29.

Pollner, M. (1989). Divine relations, social relations, and well-being. Journal of Health and Social Behavior, 30, 92–104.

402 D. J. Reese

Ratner, E., Norlander, L., & McSteen, K. (2001). Death at home following a targeted advance-care planning process at home: The kitchen table discussion. Journal of the American Geriatrics Society, 49(6), 778–781.

Reese, D. (formerly Ita, D., 1995–1996). Testing of a causal model: Acceptance of death in hospice patients. Omega: Journal of Death and Dying, 32(2), 81–92.

Reese, D. (2011). Spirituality and social work practice in palliative care. In T. Altilio & S. Otis-Green (Eds.), Oxford textbook of palliative social work (pp. 201–214). New York, NY: Oxford University Press.

Reese, D., & Brown, D. (1997). Psychosocial and spiritual care in hospice: Differences between nursing, social work, and clergy. The Hospice Journal, 12(1), 29–41.

Reese, D., Melton, E., & Ciaravino, K. (2004). Programmatic barriers to providing cul- turally competent end of life care. American Journal of Hospice and Palliative Medicine, 21(5), 357–364.

Reese, D., & Raymer, M. (2004). Relationships between social work services and hospice outcomes: Results of the National Hospice Social Work Survey. Social Work, 49(3), 415–422.

Reese, D., Raymer, M., Orloff, S., Gerbino, S., Valade, R., Dawson, S., . . .Huber, R. (2006). The Social Work Assessment Tool (SWAT). Journal of Social Work in End-of-Life and Palliative Care, 2(2), 65–95.

Schonwetter, R., Walker, R., & Robinson, B. (1995). The lack of advance directives among hospice patients. The Hospice Journal, 10(3), 1–11.

Silberstein, M. J. (1998). Work redesign reduces home health care visits. Continuum, 18(3), 9–16.

Sontag, M.-A. (1996). Hospices as providers of total care in one western state. The Hospice Journal, 11(3), 71–94.

Sontag, M.-A. (1997). The team functioning scale. Unpublished measure.

Interdisciplinary Perceptions 403

APPENDIX 1 Perceived Roles of Team Members in Hospice

Please circle the number of the discipline that spends the

MOST time on each activity:

Please circle the number of the discipline that you think is MOST qualified to address

each area:

Advocacy—represent patients’ wishes to the family, doctor, etc.

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 All 5 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 All 5 Other:___

Referrals to various service providers on behalf of the patient= family

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 All 5 Other:___

Financial counseling— aid patient=family in money management, obtain financial assistance

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Civil & legal assistance— aid the patient=family in civil and legal matters (insurance problems, wills, advance directives, etc.)

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Crisis intervention— address urgent patient=family problems

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

On-call responsibilities 1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Addressing anticipatory grief with patient= family before patient’s death

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Bereavement counseling after patient’s death

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Please circle the number of the discipline that spends the MOST time on each activity:

Please circle the number of the discipline that you think is MOST qualified to address each area:

Facilitating social interaction and social support—including support groups

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Assessment of emotional=social problems

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Discharge planning— making sure everything is in order for discharge

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

(Continued )

404 D. J. Reese

APPENDIX 1 Continued

Please circle the number of the discipline that spends the

MOST time on each activity:

Please circle the number of the discipline that you think is MOST qualified to address

each area:

Discussing the meaning of life and suffering— helping patient see value in life and dying

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Supporting patient in direct spiritual experience—feelings of unity and connection with others, nature, God, etc.

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Supervising hospice workers—serving in a middle management capacity

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Serving as hospice director

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Leading outreach into the community to increase access for diverse cultural groups

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Please circle the number of the discipline that spends the MOST time on each activity:

Please circle the number of the discipline that you think is MOST qualified to address each area:

Promoting cultural competence on the team

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Counseling about denial—when it leads to a lack of safety for the patient

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Counseling patient= family about safety issues

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Upholding preferences about environment (e.g., pets, own bed, etc.)

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Counseling about patient’s thoughts of suicide or wanting to hasten death

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

Making sure end-of-life decisions are consistent with patients’ religious and

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

(Continued )

Interdisciplinary Perceptions 405

What is your race=ethnicity: ___White (non-Hispanic) ___ Hispanic ___ African American ___ Asian ___ Other: ____________________________________ Your professional discipline (check all that apply): ___ Management ___ Nursing ___ Spiritual Caregiver ___ Social Work ___ Other: ___________________________________ Gender: ___ Female ___ Male Age: ___ Years of hospice experience: ______ Your highest degree: ______ In what discipline of study? _______________________________ What professional discipline or combination of disciplines is best qualified to conduct the

intake interview? ______________________________________________________________

THANK YOU VERY MUCH FOR YOUR HELP!!!

APPENDIX 1 Continued

Please circle the number of the discipline that spends the

MOST time on each activity:

Please circle the number of the discipline that you think is MOST qualified to address

each area:

cultural norms Counseling patient about death anxiety

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

1 Nurse 2 Social Worker 3 Spiritual Caregiver 4 Other:___

406 D. J. Reese

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.