All Aboard. Mercedes Bern Klug PhD, MSW a, Betty J. Kramer PhD b & John F. Linder MSW, LCSW c a School of Social Work and Aging Studies Program,

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1 This article was downloaded by: [University of Iowa Libraries] On: 07 April 2015, At: 15:06 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: Registered office: Mortimer House, Mortimer Street, London W1T 3JH, UK Journal of Social Work in End- Of-Life & Palliative Care Publication details, including instructions for authors and subscription information: All Aboard Mercedes Bern Klug PhD, MSW a, Betty J. Kramer PhD b & John F. Linder MSW, LCSW c a School of Social Work and Aging Studies Program, The University of Iowa, Iowa City, IA, 52242, USA b University of Wisconsin-Madison, School of Social Work, 1350 University Avenue, Madison, WI, 53706, USA c UC Davis Cancer Center, 4501 'X' Street, Room 3016, Sacramento, CA, 95817, USA Published online: 20 Nov To cite this article: Mercedes Bern Klug PhD, MSW, Betty J. Kramer PhD & John F. Linder MSW, LCSW (2005) All Aboard, Journal of Social Work in End-Of-Life & Palliative Care, 1:2, 71-86, DOI: /J457v01n02_06 To link to this article: PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the Content ) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or

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3 All Aboard: Advancing the Social Work Research Agenda in End-of-Life and Palliative Care Mercedes Bern-Klug, PhD, MSW Betty J. Kramer, PhD John F. Linder, MSW, LCSW ABSTRACT. Social workers in all practice areas have the potential to contribute to the National Agenda for Social Work Research in Palliative and End-of-Life Care. The purpose of this article is to invite social work practitioners and researchers to identify research needs and work with others to address them. We offer a conceptualization of the broad scope of social work s involvement in end-of-life issues, and articulate the difference between end-of-life care and end-of-life is- Mercedes Bern-Klug, PhD, MSW, is Hartford Geriatric Social Work Faculty Scholar, Soros Foundation Project on Death in America Social Work Leader, and Assistant Professor, School of Social Work and Aging Studies Program, Room 354 North Hall, The University of Iowa, Iowa City, IA ( Mercedes-bern-klug@uiowa.edu). Betty J. Kramer, PhD, is Associate Professor and Hartford Foundation Geriatric Social Work Faculty Scholar, Soros Foundation Project on Death in America Social Work Leader, University of Wisconsin-Madison, School of Social Work, 1350 University Avenue, Madison, WI ( ejkramer@wisc.edu). John F. Linder, MSW, LCSW, is Soros Foundation Project on Death in America Social Work Leader, Specialist and Clinical Social Worker, UC Davis Cancer Center, 4501 X Street, Room 3016, Sacramento, CA ( John.linder@ucdmc. ucdavis.edu). The authors would like to thank Drs. Aloen Townsend and Sara Sanders for reading this manuscript and offering constructive comments. The authors offer thanks to Madelyn Bowersox for graphics assistance, and to the PDIA Social Work Leaders who participated in the July 2004 brain-storming session. Journal of Social Work in End-of-Life & Palliative Care, Vol. 1(2) 2005 Available online at by The Haworth Press, Inc. All rights reserved. Digital Object Identifier: /J457v01n02_06 71

4 72 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE sues in social work. Suggestions are offered to advance the national research agenda. [Article copies available for a fee from The Haworth Document Delivery Service: HAWORTH. address: <docdelivery@haworth press.com> Website: < by The Haworth Press, Inc. All rights reserved.] KEYWORDS. Social work, end-of-life, dying, bereavement, research agenda Social workers have important scholarly contributions to make to enhance end-of-life practice and research. The goal of this paper is to stimulate interest among social workers to consider end-of-life research opportunities. We do this by presenting a conceptual framework underscoring the broad scope of end-of-life issues and then by describing strategies to advance the national agenda for social work research in palliative and end-of-life care (Kramer, Christ, Francoeur, & Bern- Klug, in press). The National Association of Social Work s (NASW) Code of Ethics enumerates standards defining the professional s ethical responsibilities to monitor and evaluate policies, programs, and interventions, and to promote research that will contribute to the development of knowledge (NASW,1996; Reamer, 2000). Conducting and disseminating rigorous research is imperative in social work s efforts to improve palliative and end-of-life care. It is fitting then, to issue an invitation in this first volume of the Journal of Social Work in End-of-Life & Palliative Care to all social workers regardless of practice setting to climb aboard and help advance the end-of-life research agenda. As you think about the type of end-of-life research you could engage in, consider how your clients are confronted with, experience, or are impacted by loss, grief, death, and other end-of-life issues. Think about the contextual factors (e.g., cultural, ethical, financial, legal, organizational, spiritual) of the setting in which you are employed that have bearing on your clients end-of-life needs and experiences. How might you participate in research that would enhance knowledge and improve outcomes for your clients and the populations you serve? To stimulate and guide social work research to address palliative and end-of-life care issues, Kramer, Christ, Francoeur, and Bern-Klug (in press) have recently proposed a national agenda for social work research in palliative and end-of-life care. The agenda is a product of a multi-method effort comprised of:

5 Bern-Klug, Kramer, and Linder 73 an extensive analysis of the gaps in the social work literature; focus groups with PDIA (Project on Death in America) social work leaders; and consideration of established national research priorities in end-oflife care. That agenda identifies 11 equally important priority areas (see Box 1) that are consistent with social work s mission and value base. Why is it important to get on board in advancing the social work end-of-life research agenda? First, there has never been a more pressing time to pursue end-of-life and palliative care research. The deficiencies in end-of-life care have been clearly documented. People approaching death are suffering needlessly, their advance directives are not invoked, and they are dying in institutions rather than at home as preferred (SUPPORT Principal Investigators, 1995; Pritchard, Fisher, Teno, Sharp, Reding, Knaus, Wennberg, & Lynn, 1998; Lunney, Foley, Smith, & Gelband, 2003). The deficiencies in end-of-life care affect family members also. Surviving loved ones report financial hardship, a desire for more contact with health professionals, and increased stress related to trying to support a loved one as death approaches (SUPPORT Principal Investigators, 1995; Hanson, Danis, & Garrett, 1997; Teno, Clarridge, Casey, Welch, Wetle, Shield, & Mor, 2004; Berzoff, 2004). When these deficiencies are considered in tandem with the wave of aging baby boomers just over the horizon, palliative and end-of-life care could be facing a near-perfect storm. Box 1. Priority Areas Identified for the National Agenda for Social Work Research in Palliative and End-of-Life Care Continuity, Gaps, Fragmentation and Transitions in Care Diversity and Health Care Disparities Financing and the Policy Practice Nexus Mental Health Concerns and Services Individual and Family Care Needs and Experiences Communication and Coordination of Care Quality of Care and Services Decision Making, Family Conferencing, and Family Caregiver Support Grief and Bereavement Pain and Symptom Management Curriculum Development, Training, and Evaluation Source: Kramer et al., in press.

6 74 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE With the recognition of these shortcomings, the federal government, private foundations, and national organizations have spearheaded important initiatives and directed unprecedented financial and organizational support to enhance social work research and to advance social work practice related to end-of-life issues. For example, the National Cancer Institute, the National Institute on Aging, and the National Institute of Nursing Research are all calling for research to enhance understanding and improve palliative and end-of-life care. 1 Foundations, professional organizations, and working groups have similarly recognized the need to build capacity in social work research, leadership, and practice competence for improving care of the dying. While in operation, The Project on Death in America (PDIA) ( supported over 40 social workers from around the country in diverse projects designed to improve social work education and professional skills for end-of-life care. Several awardees of The John A. Hartford Foundation Geriatric Social Work Faculty Scholars and Doctoral Fellows programs have been funded to pursue end-of-life research ( NASW s recent online training initiatives have sought to help social workers be more aware of the social work role in end-of-life care and the need to improve service provision to persons with cancer ( The first issue of this journal published essential knowledge, skill, and values competencies vital to social work practice in palliative and end-of-life care (Gwyther, Altilio, Blacker, Christ, Csikai, Hooyman, Kramer, Linton, Raymer, & Howe, 2005). Similarly, the NASW has also recently issued a set of 11 standards for this area (NASW, 2004). Furthermore, in 2004, the Journal of Palliative Medicine issued a special call for social work-related manuscripts. The second reason social workers should get on board with this movement to advance the end-of-life research agenda is because social workers have vital and unique roles, perspectives, and values not fully considered in prior research (Kramer & Bern-Klug, 2004). Our conceptual frameworks and indeed the broad scope of practice in varied and divergent medical and non-medical practice settings across the life span offer potential meaningful contributions to end-of-life research from diverse social work settings (Kramer et al., in press). We also have unique access to patients and caregivers. As a relatively new and emerging area of inquiry, end-of-life research is needed across all areas of social work practice. Insights, input, and involvement are needed from social workers across the country, covering the diverse populations, and in the varied service settings in which social workers are employed. Before

7 Bern-Klug, Kramer, and Linder 75 discussing the broad scope of social work research in end-of-life issues, we must articulate the ambiguity surrounding the use of two terms: dying and palliative care. DEFINITIONS There is no consensus in the research literature on what we mean by dying. How should people who are approaching the end of life be referred to? There are several options, including: people with terminal disease, people with life-limiting illness, people with life-threatening illness, and people who are dying. The confusion over this term is compounded by the fact that many people who are at death s door are not considered to be in the dying role because the timing of their death is highly ambiguous (Bern-Klug, 2004). In the landmark Institute of Medicine book, Approaching death: Improving care at the end of life,(field& Cassel, 1997), the authors explain: Life s end can come at any age and time, and death at a young age is a special sorrow. Although people can, in some respects, be considered to be approaching death from the moment they are born, the committee used the phrase approaching death partly to be more explicit and partly to take advantage of the idea that death is approached not just by those who are dying but with varying degrees of intimacy and openness by families, friends, caregivers, and communities. In one formulation, people are considered to be dying when they have progressive illness that is expected to end in death and for which there is no treatment that can substantially alter the outcome (AGS, 1997), Dying, however, is not a precise or descriptive term.... This report tends to focus on those expected to die within days or months; much of the discussion also applies to care for all those with life-threatening illness. (pp ) Similarly, there is ongoing debate and a lack of consensus regarding the meaning of palliative care. The training program, Education for Physicians on End-of-Life Care (EPEC) (1999), explains that some researchers and clinicians believe that palliative care issues should be part of all health care experiences regardless of the proximity to the time of dying and death, while other people reserve the term to be used as end-of-life care. In this manuscript, we use the term palliative care to mean symptom control and supportive care from the time of diagnosis

8 76 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE through the time of dying and death, as well as bereavement support for the loved ones, as illustrated in Figure 1, which is borrowed from EPEC. Figure 1 depicts the widely accepted and generally desirable changing proportion of care focused on disease modification as well as care focused on symptom control and comfort from the time of diagnosis to the time of death. The lower area represents palliative care, which also includes bereavement care as depicted in Figure 1. Regardless of which definition of palliative care one employs, endof-life care is an essential component. The Institute on Medicine (Field & Behrman, 2002) uses the term end-of-life care to refer to care focused on preparing for an anticipated death and managing the end stage of a fatal medical condition. Because this is a primary goal of hospice programs, end-of-life care would fall in the same column as hospice in Figure 1. Hospice is one vehicle for delivering end-of-life care. Using a broad definition of palliative care is conducive to a social work perspective that recognizes that challenging psychosocial issues can be present throughout a disease process, not just at the end of a Disease-modifying therapy (curative, life prolonging, or palliative in intent) FIGURE 1. Continuum of Care Hospice Bereavement care Palliative care Presentation/ diagnosis Symptom Control, supportive care Death Illness Bereavement Source: EPEC, 1999

9 Bern-Klug, Kramer, and Linder 77 life-threatening illness. The National Consensus Project and the World Health Organization also use a broad definition of palliative care as presented below. The National Consensus Project, a consortium of organizations including the American Academy of Hospice and Palliative Medicine, The Center to Advance Palliative Medicine, the Hospice and Palliative Nurses Association, Last Acts Partnership, and the National Hospice and Palliative Care Organization, developed and issued clinical practice guidelines for palliative care. In their guidelines they state that care of the imminently dying is just one of eight domains of palliative care (National Consensus Project, 2004). The World Health Organization s (WHO) definition states that palliative care is: An approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. The WHO (2004) states that palliative care: provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten nor postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patient s illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. One of the challenges confronting researchers and practitioners is the ambiguity and variability in the terminology associated with palliative and end-of-life care. Social workers must be part of the process of bringing greater clarity and consistency in terminology. This clarity can help to move the research agenda forward.

10 78 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE SCOPE OF END-OF-LIFE ISSUES IN SOCIAL WORK Social workers have an integral role in the delivery of excellent health care services to people who are approaching dying and to their loved ones. Social workers are employed in a wide variety of settings that provide various forms of palliative and end-of-life care. Social workers serve clients in hospitals and nursing homes where 70% of U.S. deaths occur (CDC, 2001). The Institute of Medicine s Committee on Care at the End of Life considers social workers central to the hospice care team (Field & Cassel, 1997). Indeed, social workers provide a wide range of services and support from admissions, through transfers, and at discharge... even when the reason for discharge is death. Because we are in these settings clinically, the social work profession has an obligation to document the needs of people who are approaching death and their family members. As emphasized in Kramer et al. s (in press) National Agenda for Social Work Research in Palliative and End-of-Life Care, we must test our interventions and define, refine, and disseminate social work best practices related to end-of-life care in medical settings. Yet conducting research in medical settings will account for only part of the potential for social work contributions in end-of-life research. The scope of social work is broad (Gibelman, 1995). Many social workers address end-of-life issues outside the context of advanced chronic illness or dying in traditional health care settings. Indeed, there are several priority areas detailed in the National Agenda for Social Work Research in Palliative and End-of-Life Care that are particularly relevant to these non-medical settings. Inspired by Carroll s (1977) model of social work practice and Gibelman (1995), Figure 2 depicts the broad scope of end-of-life issues including but not limited to end-of-life care encountered in social work practice. These end-of-life issues are opportunities for social work research in a variety of settings. As shown along the top of Figure 2, end-of-life issues include, but are not limited to, palliative and end-of-life care in medical settings. Furthermore, end-of-life care can be delivered in non-medical settings, such as in prisons and individual homes. As illustrated in the columns in Figure 2, end-of-life issues include a host of concerns that arise at the individual, family, organizational, and community levels related to preparing for death and dying, supporting individuals and families through the process of dying, supporting the family at the time of death (even when the death was sudden and there was no dying process per se), helping with body disposition

11 Settings (examples) Non-Medical Aging Services Child Welfare Child protective services Domestic violence Foster care / adoption Gay and lesbian, trans-gendered Homeless families Migrant workers Refugees Criminal Justice Community-based Prisons Disability Services Housing Services Mental Health Community mental health Disaster relief Employee assistance programs Military social programs Private practice Public Welfare Schools (all levels) Adjustment programs Alternative programs Substance Abuse Services Veterans Services Medical Home health Hospice Hospitals Emergency rooms Intensive care units Neonatal units Oncology Palliative care service Nursing Homes Out-patient Clinics Dementia care Eating disorders Genetic counseling HIV-AIDS FIGURE 2. Scope of Social Work Practice in End-of-Life Issues: Opportunities for Research End-of life Issues Education, Awareness, and Capacity Building Education Developing public information regarding end-of-life issues: Financial Medical Physical Psychosocial Spiritual Awareness Building among: Individual/Family Organizational Community Program planners Policy makers Capacity Building Community, state, national, and international levels: Availability of appropriate medical and psychosocial support. Care for People with Life Threatening Illness End-of-life Decision-Making and Planning Support: For people (and families) diagnosed with progressive illness expected to end in death. Also for people whose dying status is ambiguous because of progressive chronic illness or serious accidents which put them at increased risk of death, but who are not considered to be dying per se. End-of-life Care for People at the Terminal Stage of Dying: Palliative care for people at the end of life. This includes hospice, which is one vehicle for palliative end-of-life care. Time of Death Support Sudden Death: Psychosocial Support for Individuals and Families Affected by: Accidents, Acute illness Complications at birth Homicide Natural disasters Suicide Terrorism Information and Support for Body-Related Decisions: Autopsy Body identification Donation of body Donation of organ/tissue Final Arrangements Funeral and burial related decisions regarding merchandise and services for final disposition and memorialization Post-Death Support Bereavement Support Survivor psychosocial support Individual Group Legacy Planning and Support Transition Support Assessment/referral to: Community services Financial Housing Legal Spiritual Social Work Roles (examples) Administration Advocacy Assessment Case management Community organizing Crisis intervention Counseling Discharge planning Group work Referrals Program planning Public policy Special Arrangements for When the Body has not been Found 79

12 80 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE decisions, funeral or memorial service and legacy planning, and issues related to loss resulting from a death (bereavement). Many social workers encounter end-of-life issues in: elementary, middle, and secondary schools; counseling centers; refugee services agencies; crisis hotlines; migrant worker advocacy programs; alcohol dependency programs; gay/lesbian support centers; Red Cross disaster settings; and in senior citizens centers. Consequently, conducting relevant and rigorous research in these areas presents many opportunities for exciting new partnerships. In addition to conducting research with nurse and physician colleagues, we must also collaborate with emergency personnel and first responders, employee assistance personnel, unions, funeral directors, chaplains and other spiritual care providers, coroners, attorneys, teachers and educators at all levels, and others who work with the same clients we do, but whose work is in a different capacity in relation to end-of-life issues. Because we encounter end-of-life issues in all these areas, social workers have a duty to contribute to the body of research that will help enhance client services. Therefore, while social work research is needed in palliative and end-of-life care, it is also needed in all the settings and in each column listed in Figure 2. End-of-life issues affect all social work settings. As underscored in Figure 2, particularly in the social work profession, end-of-life issues are much broader than end-of-life care. End-of-life research is needed in the broad scope of social work settings, especially with people who are vulnerable because of discrimination and/or lack of economic, social, or other resources. End-of-life research issues need to be pursued at the individual, family, and community levels. As reported by Kramer et al. (in press), the end-of-life research agenda is and must continue to have a much broader focus than just the medical concerns at the end-of-life. We must expand our conceptualization of end-of-life issues, and build the research base to ensure that practitioners in all settings are using the best tools available. Social work research should investigate what the client/family considers to be important issues, which interventions social workers can employ to enhance our ability to serve clients, how best to work with other professions, and how systems (organization and policy) can be improved to better serve clients, families and communities facing end-of-life issues. The eleven research priority areas in the Kramer et al. (in press) National Agenda for Social Work Research in Palliative and End-of-Life Care (see Box 1) are relevant to the end-of-life issues in Figure 2. For example, the research priority area continuity, gaps, fragmentation and transitions in care lends itself to the important support that social work-

13 Bern-Klug, Kramer, and Linder 81 ers engage in as people with life threatening illness move across service settings. By way of illustration, social workers should be involved in helping the family of a person with advanced dementia discharge the person from the hospital to a nursing home (if appropriate). When the time comes, the social workers will also work with the family to establish hospice services in the nursing home setting. An example of the research priority area diversity and health care disparities is when a social worker assists a refugee family who is encountering problems in accessing information about palliative care for a loved one who has been seriously wounded in a life-threatening accident. The research priority financing and policy practice nexus can be reflected in the first column on the left in Figure 2, education, awareness and capacity building, as social workers participate in ensuring that communities have the capacity to care for people with life threatening illness or accidents. The research priority area mental health concerns and services can be operationalized in all columns in Figure 2. For instance, mental health needs can arise when a family faces the likely death of a loved one, but the body has not been recovered, or when social workers engage in counseling with survivors of a natural disaster. In the case of the research priority individual and family care needs and experiences, an example would be when a social worker assists a woman to develop ties with community financial, legal, and spiritual resources that can address her well-being following the death of her life-long lesbian partner. When social workers help people with serious illness consider and anticipate the type of care they would like at the end of life, and then help to connect the person with resources as the end draws near, this is an example of research priority area communication and coordination of care. The research priority area quality of care and services can be operationalized as social workers evaluating the care provided in all areas of end-of-life issues as illustrated in Figure 2. An example of decision making, family conferencing, and family care giving support is when a social worker helps the parents of a young child with advanced cancer meet with the medical team to discuss the advantages and drawbacks of pursuing further chemotherapy. The social worker can help develop a care plan that includes emotional support for the parents as they deal with the loss associated with the illness, dying and anticipated death of the child (Rando, 1997). Figure 2 also includes bereavement support. An example of the research priority area for grief and bereavement is when social workers in marital and family therapy address the legacy of loss in the family context

14 82 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE (McGoldrick, 1991). Another example is when a high school student fails to complete homework and attend class because of profound grief associated with the death of a parent or friend, or when a social worker includes an individual who is self-medicating with alcohol in response to the suicide of a spouse to participate in a support group. Most instances of the research priority pain and symptom management would likely be addressed in the medical settings mentioned in Figure 2; however, pain and symptom management can also affect social workers in foster care wanting to place a child with HIV-AIDs with a family, or in a criminal justice setting where access to pain medications may be limited. Another example is when a social worker in an assisted living center supports an older client to articulate advance directives and appoint a durable power of attorney who will pursue aggressive care for pain at the end of life. The last research priority area listed in Box 1, curriculum development, training, and evaluation applies to all the columns in Figure 2 in which social workers must test the effectiveness of interventions, and then educate fellow social workers and the public in best practices. MOVING THE AGENDA FORWARD Kramer et al. (in press) recommend and describe four ways in which the social work research agenda in end-of-life issues can be advanced. First, capacity building is critical to ensuring that social workers receive the training and support necessary to conduct rigorous research. Second, the development and support of practice research partnerships between established researchers, social work practitioners, and palliative care programs is needed. Third, adequate funding for social work research will help to advance the research agenda, and fourth, establishment of a professional leadership organization with a primary focus on palliative and end-of-life care will serve to organize and articulate the infrastructure needed to push ahead with the agenda. To these four previously published recommendations, we add two more: (1) the need for developing social work research methods specifically tailored to end-of-life issues, and (2) the imperative to rapidly and broadly disseminate research findings. 2 Developing Social Work Research Methods The field of social work is grounded on the six core values of: service, social justice, dignity and worth of the person, importance of hu-

15 Bern-Klug, Kramer, and Linder 83 man relationships, integrity, and professional competence (NASW, 1996). These core values affect the selection of theories used in clinical practice, policy advocacy, and in our educational settings. Social work values affect both what the field considers worth knowing and how social work research should be conducted. To further guide the conduct of social work research, we have the professional ethical standards which are: commitment to clients, self-determination, informed consent, and cultural competency. Each of these ethical standards is germane to how social work end-of-life research is designed, undertaken, and disseminated. Elizabeth Kübler-Ross taught us that many hospitalized dying persons want to talk about their dying (1965). But that willingness and indeed the ability to discuss these issues with researchers, or complete a survey may vary by age, gender, ethnicity, primary language, diagnosis, prognosis, setting, and the researcher s rapport-building skills. There are likely participant-investigator interactions that can affect the comfort level of participants and the quality of data obtained. Fears of imposing additional burdens on patients and caregivers may cause some to be hesitant or resistant to conducting rigorous research in this area. One method to overcoming these concerns is by enlisting cross-disciplinary care professionals as co-researchers. Ideally, this would mean they would be involved in all phases of the project, from selecting the question to be examined to designing and undertaking the study, to disseminating the findings. Investing the providers in the process and building in safeguards and controls to address their concerns is integral to the conduct of ethical and rigorous end-of-life research. Social workers should be involved in enhancing data collection methods that will assist all researchers in conducting research with people who are approaching dying and their loved ones with minimal intrusion or disruption at this highly stressful and vulnerable time. We must also develop training programs to educate researchers and clinicians on how to conduct this research ethically and with sensitivity. End-of-life research deals with issues that our society considers sensitive and in some cases taboo. These issues can provoke strong emotional reactions. The development of new research methods that can facilitate and improve research in end-of-life care and in end-of-life issues is needed. Social workers should be part of the culturally competent research teams that investigate how best to conduct research (i.e., meta research) with people who are facing their dying and their loved

16 84 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE ones as well as conducting research related to end-of-life issues in general (beyond the context of end-of-life clinical care in medical settings). In order to facilitate the advancement of the social work research agenda, our research methods must be advanced as well. This includes developing consensus on how to define and operationalize key terms, as alluded to earlier in the paper. Rapid and Broad Dissemination of Research Findings The dearth of end-of-life research findings in some areas of social work (Kramer et al., in press) dictates that findings be disseminated as broadly and quickly as possible. These areas of research are important to practitioners, policy makers, consumers, and communities. The initiation of this journal will help to address the urgent need for rapid dissemination. Social work researchers are also encouraged to publish findings in a broad cross-section of social work as well as interdisciplinary journals and to clearly articulate the social work practice and policy implications of end-of-life research. Our colleagues need to understand the social work perspective and the social work contribution. As important as it is to report findings in scholarly journals, it is also important to ensure that important research findings get into the hands of people who are planning and administering programs and policies, and the people who are facing end-of-life issues for themselves or loved ones. Social workers need to actively translate research findings into practice and to share findings with the public through community seminars, newspaper articles, radio and television interviews, and the Internet. SUMMARY The time is ripe for social work practitioners and researchers to collaborate in undertaking investigations that can enhance our understanding of and our ability to respond to end-of-life issues. Grounding this research in the needs of our clients and communities and on our profession s core values will help to ensure that the issues we investigate are the most important and the methods we use to collect data are the most

17 Bern-Klug, Kramer, and Linder 85 humane. In this article we underscore the broad scope of social work practice and potential research in end-of-life issues. All aboard! NOTES 1. In addition, the National Institutes of Health, Office of Behavioral and Social Sciences Research, issued the NIH Plan for Social Work Research, which details mechanisms for social workers interested in submitting competitive research proposals to NIH in all areas of health including palliative and end-of-life issues (NIH, 2003). 2. These two suggestions emerged during a brain-storming session which was dedicated to how to advance the National Agenda for Social Work Research in Palliative and End-of-Life Care. The session occurred at the 2004 PDIA Social Work Leadership Retreat. Additionally, the brain-storming session validated the four methods for advancing the Agenda that are included in the Kramer et al. article. REFERENCES Bern-Klug, M. (2004). The ambiguous dying syndrome. Health & Social Work, 29(1), Berzoff, J., & Silverman, P.R. (2004). Introduction, in J. Berzoff & P.R. Silverman (Eds.), Living with dying: A handbook for practitioners. New York: Columbia University Press, pp Carroll, N.K. (1977). Three-dimensional model of social work practice. Social Work 22(Sept), CDC. (2001). Deaths by place of death, age, race, and sex: United States, (Work Table 309). Accessed September 10, 2004: mortfinal2001_work309.pdf EPEC. (1999). EPEC participant s hand book, Plenary 3: Elements and models of end-of-life care, p. P Accessed August 7, 2004: ama/pub/category/2910.html Field, M.J., & Behrman, R.E. (Eds.) (2002). When children die: Improving palliative and end-of-life care for children and their families. Institute on Medicine, Washington DC: National Academy Press. Field, M.J., & Cassel, C.K. (1997). Approaching death: Improving care at the end of life. Institute on Medicine, Washington DC: National Academy Press. Gibelman, M. (1995). What social workers do. Washington DC: NASW Press. Gwyther, L.P., Altilio, T., Blacker, S., Christ, G., Csikai, E. L., Hooyman, N. Kramer, B., Linton, L. M., Raymer, M., & Howe, J. (2005). Social work scope of practice and competencies essential to palliative care, end-of life care, and grief work, Journal of Social Work in End-of-Life and Palliative Care, 1(1), Hanson, L.C., Danis, M., & Garrett, J. (1997). What is wrong with end-of-life care? Opinions of bereaved family members. Journal of the American Geriatrics Society, 45,

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