Human Interactions 6-2

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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 (n ¼ 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

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

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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

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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 view may 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

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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

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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)

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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

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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

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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

(Significance ¼ .000).

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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 (SD ¼ 8.07), with a range from 30–64. Mean years of hospice experience was 9.90 (SD ¼ 6.17). The professional discipline of the directors was 80.5% nursing (n ¼ 33), 9.8% social work (n ¼ 4), 2.4% spiritual caregiver (n ¼ 1), and 7.3% other (n ¼ 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 (r ¼ �.09, p ¼ .62), or years of experience and total items (r ¼ .10, p ¼ .52). It was not possible to test

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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 (SD ¼ 6.08). Nurses thought that social work- ers were most qualified to provide 9.21 of the interventions (SD ¼ 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 (SD ¼ 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 (n ¼ 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%).

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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 and making 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

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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 a major 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,

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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 (r ¼ .16, p ¼ .01), and by whether the social worker obtained spiritual support in the case (r ¼ .17, p ¼ .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 who were 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.

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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:___

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:___

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:___

Crisis intervention— address urgent patient=family problems

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:___

Bereavement counseling after patient’s death

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:___

Assessment of emotional=social problems

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:___

(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:___

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:___

Supervising hospice workers—serving in a middle management capacity

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

Serving as hospice director

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:___

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:___

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

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:___

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

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:___

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

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:___

406 D. J. Reese

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