Preparing Family Caregivers for the Death of a Loved One: Implications for Hospital Social Workers

This article was downloaded by: [Heriot-Watt University]On: 07 October 2014, At: 01:46Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH,UK

Journal of Social Work in End-Of-Life & Palliative CarePublication details, including instructions forauthors and subscription information:http://www.tandfonline.com/loi/wswe20

Preparing Family Caregiversfor the Death of a Loved One:Implications for Hospital SocialWorkersRandy S. Hebert a , Valire C. Copeland b , RichardSchulz c , Charlene A. Amato d & Robert M. Arnold ea Forbes Hospice , Pittsburgh, Pennsylvaniab School of Social Work , University of Pittsburgh inPittsburgh , Pennsylvaniac University Center for Social and Urban Research ,University of Pittsburgh in Pittsburgh , Pennsylvaniad Case Management Department , UPMC PresbyterianHospital in Pittsburgh , Pennsylvaniae Division of General Internal Medicine, Sectionof Palliative Care and Medical Ethics , Universityof Pittsburgh School of Medicine in Pittsburgh ,PennsylvaniaPublished online: 22 Jul 2009.

To cite this article: Randy S. Hebert , Valire C. Copeland , Richard Schulz , CharleneA. Amato & Robert M. Arnold (2008) Preparing Family Caregivers for the Death of aLoved One: Implications for Hospital Social Workers, Journal of Social Work in End-Of-Life & Palliative Care, 4:4, 269-285, DOI: 10.1080/15524250903081533

To link to this article: http://dx.doi.org/10.1080/15524250903081533

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all theinformation (the “Content”) contained in the publications on our platform.However, Taylor & Francis, our agents, and our licensors make norepresentations or warranties whatsoever as to the accuracy, completeness,or suitability for any purpose of the Content. Any opinions and viewsexpressed in this publication are the opinions and views of the authors, andare not the views of or endorsed by Taylor & Francis. The accuracy of theContent should not be relied upon and should be independently verified withprimary sources of information. Taylor and Francis shall not be liable for anylosses, actions, claims, proceedings, demands, costs, expenses, damages,and other liabilities whatsoever or howsoever caused arising directly orindirectly in connection with, in relation to or arising out of the use of theContent.

This article may be used for research, teaching, and private study purposes.Any substantial or systematic reproduction, redistribution, reselling, loan,sub-licensing, systematic supply, or distribution in any form to anyone isexpressly forbidden. Terms & Conditions of access and use can be found athttp://www.tandfonline.com/page/terms-and-conditions

PEER-REVIEWED ARTICLES

Preparing Family Caregivers for theDeath of a Loved One: Implications

for Hospital Social Workers

Randy S. HebertValire C. CopelandRichard Schulz

Charlene A. AmatoRobert M. Arnold

Preparation of this manuscript was supported by grants from the NIMH(1K23 MH074963–01) and the Cancer and Aging Program at the Universityof Pittsburgh in Pittsburgh, Pennsylvania (P20 CA103730).

Randy S. Hebert, MD, MPH, is Medical Director at Forbes Hospice inPittsburgh, Pennsylvania. Valire C. Copeland, PhD, MPH, is an AssociateProfessor in the School of Social Work at the University of Pittsburgh inPittsburgh, Pennsylvania. Richard Schulz, PhD, is a Professor of Psychiatryand Director of the University Center for Social and Urban Research atthe University of Pittsburgh in Pittsburgh, Pennsylvania. Charlene A.Amato, MSW, BCD, LCSW, is a Palliative Care Social Worker in the CaseManagement Department at UPMC Presbyterian Hospital in Pittsburgh,Pennsylvania. Robert M. Arnold, MD, is a Professor in the Division of Gen-eral Internal Medicine, Section of Palliative Care and Medical Ethics at theUniversity of Pittsburgh School of Medicine in Pittsburgh, Pennsylvania.

Address correspondence to Randy S. Hebert, Medical Director, ForbesHospice, 115 South Neville Street, Pittsburgh, PA 15213. E-mail: rhebert@wpahs.org

doi: 10.1080/15524250903081533 269

ABSTRACT. Providing care to a seriously ill loved one at end of lifeis very difficult. Many family caregivers, however, are not preparedfor the death and may suffer more psychological morbidity as aresult. Although the scope of social workers’ practice makes themideal professionals to work with caregivers, there is little researchabout the role they play in preparing caregivers for the death. Focusgroups and semistructured interviews conducted with caregivers ofterminally ill patients revealed that hospital social workers werenot generally perceived as helpful in preparing them for the death.Caregivers reported many unmet needs for which social workers’expertise would have been invaluable—i.e., needs for better com-munication with health care providers, psychosocial support, andaccessing resources. Future work should be directed to verifyingour findings and determining how to overcome barriers that preventhospital social workers from preparing caregivers for the death of aloved one.

KEYWORDS. Bereavement, caregivers, palliative care, social work,terminally ill

BACKGROUND

Providing care to a family member or loved one with terminalillness can be very stressful, as family and friends provide personaland medical (e.g., administering medications, changing dressings)care while balancing home and work responsibilities. In fact, care-givers spend an average of more than 100 hours a week with thesetasks when patients are at end of life (Haley, LaMonde, Han,Narramore, & Schonwetter, 2001). Despite the intense nature ofthe care provided, however, many caregivers perceive themselves asunprepared for the death. For example, in one national sample,23% of approximately 1600 decedents reported that the death was‘‘extremely’’ unexpected (Teno et al., 2004). In another study, 25%of bereaved caregivers thought that health care providers should havedone more to prepare them (Barry & Prigerson, 2002). Being un-prepared for the death is not without consequence. Caregivers whoperceived themselves as unprepared suffer from more depression,anxiety, and complicated grief (Barry, Kasl, & Prigerson, 2002;Hebert, Dang, & Schulz, 2006). The scope of this problem istremendous when one considers that of the 2.4 million deaths a year

270 JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE

in the United States, the great majority are preceded by a period offamily caregiving (Emanuel et al., 1999; National Center for HealthStatistics, 2007).

Preparedness has been a focus of recent investigation. Forexample, several studies have demonstrated that preparing for thedeath of a loved one has medical, practical, psychosocial, andreligious or spiritual components (Clayton, Butow, Arnold, &Tattersall, 2005; Steinhauser et al., 2001). Caregivers, therefore, oftenneed more than prognostic information in order to prepare. Theymay also need information about financial, family, or spiritual con-cerns (Hebert, Schulz, Copeland, & Arnold, 2008). Preparedness alsodepends on getting consistent, accurate information from credibleauthorities, including the various health care providers involved inthe patient’s care. Credible authorities help prepare caregivers by pro-viding reliable information and demonstrating empathic behaviorssuch as acknowledging caregivers’ emotions, listening, providingemotional support, and eliciting questions (Parker et al., 2007).Unfortunately, many health care providers do not use or possessthese skills. They feel uncomfortable discussing death and dying,use ambiguous language, answer caregivers’ questions inappropri-ately, provide conflicting information, or adopt strategies that blockcaregivers’ emotional reactions (Fallowfield, Jenkins, & Beveridge,2002; Maguire, 1985). As a result, although preparing caregiversfor the death of a loved one is a key task for health care providerswho provide care to dying patients, caregivers report that this compo-nent of end-of-life care is often neglected (Hanson, Danis, & Garrett,1997; Russ & Kaufman, 2005).

The education and training of social workers makes them idealprofessionals to help address this deficiency in end-of-life care(Bern-Klug, Gessert, & Forbes, 2001; Kovacs, Bellin, & Fauri,2006). Social worker competencies linked to preparedness includeknowledge of the biopsychosocial aspects of death and dying andexpertise with the practical, informational, and spiritual needs offamily caregivers (Gwyther et al., 2005). By explaining the processof dying, supporting the family before and after the death, and pro-viding caregivers with access to community resources, social workersare uniquely qualified to prepare families for death and bereavement(Bern-Klug, Kramer, & Linder, 2005; Quinn, 1998). Social workershave in fact been described as the ‘‘glue’’ that links palliative carepatients and families to needed health, economic, and social systems

Hebert et al. 271

(Berzoff et al., 2006). By counseling families and providing them withadaptive coping strategies, social workers can also assist grievingfamily members manage emotions which could otherwise limittheir ability to process information (Kissane, Bloch, McKenzie,McDowall, & Nitzan, 1998; Roberts, Baile, & Bassett, 1999). Finally,because poor communication with members of the health care teamcan hinder preparation for the death, social workers can help betterprepare caregivers by fostering effective communication betweenmembers of the interdisciplinary team, patients, and families(Gwyther et al., 2005). In summary, the scope of social work practiceallows social workers to use their expertise in counseling, familysystems, bereavement, and interdisciplinary communication to imp-rove the care of family members of terminally ill patients (Rose &Shelton, 2006; Zittle, Lawrence, & Wodarski, 2002).

Although social workers can play a vital role in palliative care,there is, however, little research about the role they play in preparingcaregivers for the death of a loved one. The goal of this article is todescribe family caregivers’ experiences with hospital social workersas they were preparing for the death of their loved one.

METHODS

Study Design

The data reported below were collected as part of larger data setdescribing the factors caregivers believe are important to preparefor death and bereavement (Hebert, Schulz, Copeland, & Arnold,2009).

Sample

As is standard in qualitative research, we recruited a purposefulsample, or one expected to provide in-depth information about anissue about which little is known (Patton, 2002). Current caregiverswere English-speaking adults involved in the care of a patient witha life expectancy of less than 6 months and receiving care from auniversity-based palliative care consult service or community-basedhospice. Bereaved caregivers were those whose family member wasdeceased for less than 12 months. This sample was chosen for several

reasons. First, current caregivers were likely to have considered thepossibility of their loved one’s death. Second, bereaved caregiverswere interviewed because current caregivers are sometimes soengrossed with providing care that they may have difficulty reflectingon their needs (Rabow, Hauser, & Adams, 2004). Finally, unlikehospice, the consult service sees patients who are receiving care withlife-prolonging intent. Interviewing caregivers from both settingsallowed us to obtain broader insights on preparedness.

Data Collection

We planned focus groups for six to eight caregivers, the idealnumber to ensure meaningful dialogue without hindering partici-pation (Carey, 1995). However, cancellations reduced the first twogroups to only three and five participants, respectively. Becauseseveral caregivers commented on the emotional difficulty of beinginterviewed at the hospital where their loved one died, the formatwas therefore changed to ethnographic interviews held at the hospitalor in caregivers’ homes. A moderator guide was used to structure theinterviews. Interviews were conducted by an experienced moderator,audiotaped, and transcribed. A research assistant took notes. Datacollection and data analyses were iterative and interviews wereconducted to the point of redundancy, or until no additional topicswere raised.

Data Analysis

Data were analyzed using the constant comparative method(Patton, 2002). Two investigators read all transcripts independentlyto generate a list of preliminary codes, met regularly to refine thecoding structure, and developed a codebook used to structure dataanalyses (MacQueen, McLellan, Kay, & Milstein, 1998). Any men-tion of the words social worker or social workers was noted.Transcripts were then independently coded by two coders who werenot members of the study team. Coders met regularly with themoderator to discuss the utility of codes, the consistency of codeapplication, and to resolve inconsistencies. This iterative codingprocess continued until consensus was reached. The ATLAS softwareprogram (ATLAS.ti 5.0 Scientific Software Development, Berlin,Germany) was used to manage data. Steps used to ensure reliability

Hebert et al. 273

and validity included comparing the accuracy of all audiotapes withwritten notes, independent coding of data in a standardized manner,and review of the data analyses by the study team consisting ofindividuals with complimentary areas of expertise in social work,palliative care, qualitative methods, end-of-life communication,cultural competence, and caregiving.

Study procedures were approved by the University of PittsburghInstitutional Review Board.

RESULTS

Caregivers were predominantly female, adult children, and providingcare to loved ones with cancer or cardiopulmonary disease (Table 1).Table 2 provides a list of the main questions asked of caregivers. Withno prompting by the moderator, seven (21%) of the caregiversdiscussed their interactions with hospital social workers. The majorfinding was that none of these caregivers thought that social workerswere helpful in preparing them for the death of their love one.Rather, the comments were negative in nature.

The most common comments referred to the perception that socialworkers were more interesting in discharging patients, or ‘‘shippingthem out,’’ than addressing families’ questions.

They (doctors) were talking about how we were to meet thesocial worker, saying ‘‘Someone will come in and talk toyou.’’ . . .Next thing I know the social worker is shipping meout of the hospital. Nobody communicated with me. I justhad no idea what I was going to do . . . I didn’t know whatwas going on. (Bereaved, Caucasian, sister of patient)

The following caregiver, a nurse, describes her experience trying tohave her mother-in-law transferred to hospice rather than a nursinghome.

They were ready to get her (mother-in-law) out of the hospital.They wanted her out . . . so the social worker told me,‘‘She doesn’t go to a hospice facility. She has to go to ____(the nursing home).’’ I had to fight to get her out of ____ (thenursing home) and into a hospice. I don’t think you should have

to fight for those kinds of things. And I wouldn’t even haveknown to ask for that (hospice) had I not been a nurse and knewa little bit about that . . .That was the most overwhelmingexperience . . . you’re so vulnerable at that time and you’re sodependent upon them to help you . . .She (social worker) was

TABLE 1. Characteristics of Study Participants

Caregivers (n¼ 33) No. (%)

Caregiving Status

Bereaved 27 (82)

Active 6 (18)

Gender

Female 27 (82)

Male 6 (18)

African American=Black 15 (45)

Caucasian=White 18 (55)

20–29 1 (3)

30–39 2 (6)

40–49 1 (3)

50–59 12 (37)

60–69 4 (12)

70 and over 4 (12)

Unknown 9 (27)

Education

Some high school 3 (9)

High School Diploma=GED 2 (6)

Some College 11 (33)

College Graduate 2 (6)

Graduate Degree 3 (9)

Unknown 12 (36)

Relationship to the Patient

Spouse=Fiance 7 (21)

Child 14 (43)

Other 12 (36)

Primary Patient Illness No. (%; 23 patients)

Cancer 10 (44)

Cardiovascular Disease 6 (26)

COPD=Pneumonia 2 (9)

Cirrhosis 1 (4)

Dementia 1 (4)

Multiple illness=Other 3 (13)

Hebert et al. 275

more interested in getting her to go to a nursing home . . .(Bereaved, Caucasian, sister-in-law of patient)

The following two caregivers reported that social workers wereunhelpful in helping them access resources that would have allowedthem to better care for their loved one at home prior to the death.

What started out as a job (caregiving) to keep me occupied for acouple of hours a day became a fulltime necessity . . .That’swhere the social workers failed me . . . I had no one to help me(care for the patient at home) . . . (Bereaved, Caucasian, wife)

The social worker kept telling me what to do but didn’t giveme a means to do it. We didn’t have no money. Instead of saying‘‘I know of resources . . .’’ he kept saying ‘‘Can’t you just dothis?’’ He was all talk and no action. (Bereaved, AfricanAmerican, mother)

The following woman had years of experience caring for herhusband who had multiple hospital admissions for diabetes, renalinsufficiency, and severe congestive heart failure.

What I need is an advocate. I need somebody that’s going to bethere. . . I’ve been going crazy trying to get these stupid forms(insurance) filled out. These forms are a nightmare . . . they(social workers) don’t give enough information . . .we foundthings out by accident . . . I need a person to serve as an advocateand help me gather resources as needed so I don’t have to try tofigure out who to contact, how to get them, how to pull it alltogether, and all the questions I need to ask and keep pounding,pound, pounding . . . In the old days I thought that’s what a

TABLE 2. Moderator Guide for Interviews

1. Please tell us a little bit about your loved one’s illness.

2. Think back to when you first realized that your loved one’s illness was progressing or was

not curable, what questions came to mind?

3. How do=did you prepare for the future?

4. What is=was important to you in preparing for your loved one’s death?

5. How can health care providers� help caregivers prepare?

Note. �We defined health care providers for participants as doctors, nurses, social workers,

therapists, clergy, or others involved in the care of their loved one.

social worker was supposed to help you with, but that doesn’tseem to be the case anymore. In fact, you don’t even hear fromthem. (Current, Caucasian, wife)

More disturbingly, when caregivers were asked, ‘‘How can healthcare providers help caregivers prepare?’’ (Table 2, Question #5),caregivers’ recommendations focused on what physicians, nurses,and clergy can do to help prepare them for the death of their lovedone. No caregivers included social workers in their recommendations.The fact that social workers were not included in the recommenda-tions should not be taken to imply that caregivers had no needs thatsocial workers could help address. On the contrary, caregivers neededhelp with several issues for which social workers’ assistance wouldhave been invaluable. A common need was the need for better com-munication with health care providers. This caregiver described herfrustration in attempting to get answers from the multiple health careproviders involved in her mother’s care. She had no clear idea who wascoordinating the care or to whom she should turn to for questions.

I could never get in touch with the doctor associated with herpersonal care home. They had other doctors associated withthe hospital attending her . . . you’ve got 100 people (health careproviders) to see . . . It looks like a phone book . . .Where do Istart? . . . So I try to talk to one person, she can’t talk . . . thenurses don’t really want to talk to you so they push you offon a doctor . . . and it wasn’t the doctor who took care of her(patient) at the personal care home . . . and they are unable toreach him. He never calls back . . . so now I’m talking to a doctorI don’t know and he doesn’t know her (patient) . . . it’s just a lackof communication. (Bereaved, African American, daughter)

Social workers could also have been helpful in addressingcaregivers’ unmet psychosocial and practical needs. The followingcaregiver, whose loved one died of chronic obstructive pulmonarydisease after a long illness, had few close family or friends.

I wish somebody could help me cope with a lot of things likewith him passing and not being here . . . (I wish I could havehad help) coping with grief . . .Like I said, I had already startedgrieving and missing him before he was even gone . . . after he

Hebert et al. 277

passed and I was here (home), I thought he’s never going to behere again. (Bereaved, Caucasian, wife)

Several caregivers were distressed by disrupted family dynamics orfamily conflict as a result of the illness.

I didn’t feel right bringing it (the conflict between the caregiver’shusband and sister-in-law) up. My husband is very private. Ithink if he (the social worker) had said to us, ‘‘Has there beenfamily conflict because of the death of your mother?’’ I thinkthat my husband might have opened up to him. (Bereaved,Caucasian, sister-in-law)

Finally, some would have liked more help with practical matterssuch as making funeral arrangements and estate planning.

We had to decide which funeral she (the patient) wanted . . .Wehad to get a funeral home . . .We also started looking intoinsurance policies . . .We knew that we had to take care ofit . . .But we couldn’t do it (make funeral arrangements andestate planning) while she (patient) was there (in the hospi-tal) . . .We knew this (the death) was coming . . .We should haveprepared for this but nobody brought it (making funeralarrangements and estate planning) up . . . I wasn’t thinkingabout what to do next. (Bereaved, African American, niece)

DISCUSSION

Preparing for the death of a loved one is important to familycaregivers of terminally ill patients. Among the factors that areimportant to preparing include receiving medical, practical, psycho-social, religious, or spiritual information, being provided with clearand accurate communication from credible health care providers,and having access to resources that allow one to complete tasks suchas estate planning, funeral arrangements, etc. Although socialworkers clearly have expertise in each of these areas, we found thatcaregivers did not generally perceive hospital social workers ashelpful in preparing them for the death. In addition, when asked what

health care providers could do to help better prepare them for thedeath, caregivers did not mention social workers, possibly implyingthat social workers did not have a role in or did not identifythemselves as interested in preparing them for the death. Finally,despite not mentioning social workers, caregivers discussed severalareas in with social workers could be helpful—areas such as facilitat-ing communication between health care providers and the family,counseling=providing support, conflict resolution, and helping accesscommunity resources. Although these skills are acquired as part ofsocial work education, our caregivers did not connect them withhospital social workers.

Our findings that hospital social workers were not perceived ashelpful to caregivers of terminally ill patients are in stark contrastto their historical role as advocates for families (MassachusettsGeneral Hospital Social Work, (n.d.); Taylor-Brown & Sormanti,2004). Because preparing families for the death remains an integraldimension hospital social work, a discussion of the barriers thatsocial workers face is in order (Sheldon, 2000). It deserves mentionthat social workers’ attitudes about preparing caregivers are likelynot the primary barriers. On the contrary, social workers perceivepreparing caregivers as very important (Lord & Pockett, 1998;Luptak, 2004; Sheldon). Despite positive attitudes, however, socialworkers are constrained from preparing caregivers because of factorsbeyond their immediate control. The current health care environmentis not very conducive to preparing caregivers (Colone, 1993).Traditionally, physicians and nurses relied on social workers toaddress the interrelationships between the physical, emotional, andsocial factors in disease. The push to control and decrease health carecosts, however, has moved the role of the social worker away frompsychosocial assessment and made discharge planning a major partof their practice (Holliman, Dziegielewski, & Datta, 2001). In fact,physicians now utilize social workers not for counseling but forassistance with patient discharges from the hospital or to obtainresources needed for care after discharge (Cowles & Lefcowitz,1995; Mizrahi & Abramson, 2000). Economic realities have also ledto larger caseloads which limit the number of psychosocial-orientedvisits possible (Parker Oliver & Peck, 2006). Therefore, in busy,short-staffed, acute care units, social workers may not have the requi-site time to prepare caregivers. Second, role ambiguity may be aproblem. More than ever, the social work role is blurring with that

Hebert et al. 279

of nurse case managers, which may in turn lead to competition forturf and autonomy (Ben-Sira & Szyf, 1992; Keigher, 1997; Mizrahi &Abramson). Physicians and social workers also sometimes disagreeabout who should best coordinate the care of patients and families(Abramson & Mizrahi, 2003). As a result, social workers maymarginalize their role and defer to physicians for end-of-life com-munication (Back, 2000). Third, it is possible that hospital socialworkers may be involved too late in the end-of-life trajectory to prop-erly prepare caregivers for the death. Health care providers involvedin discharge planning generally characterize palliative care as end-of-life or hospice care that is initiated after the decision to limit curativetreatment is made (Rodriguez, Barnato, & Arnold, 2007). If palliativecare is initiated very late in the illness trajectory, social work involve-ment with family caregivers may be limited. Finally, several studieshave demonstrated that social workers receive very little exposureto palliative care during their training (Christ & Sormanti, 1999). Astudy of hospice social workers in two Southeastern states reportedthat more than 90% received less than 6 hours of formal educationin palliative care (Arnold, Artin, Griffith, Person, & Graham,2006). The training is often uneven and not sufficiently integratedinto the broader social work education.

What can be done to overcome these barriers? The economic pres-sures that hinder social workers from preparing caregivers are notlikely to go away. Nonetheless, given the important role that socialworkers can play in preparing caregivers for the death of a lovedone, we believe social workers need to better advocate for expandingtheir role. A necessary step is for social work education to focus morespecifically on the care of the dying and their families. Without bettereducation, hospital social workers will lack role models who can laythe foundation for future training, leadership development, andadvocacy. Next, preparing family caregivers for the death of a lovedone is best done using the combined expertise of social workers, phy-sicians, nurses, clergy, etc. (Hebert, Prigerson, Schulz, & Arnold,2006). Unlike many colleagues from these other disciplines, socialworkers are well versed in the intricacies of interdisciplinary teams.As such, they should take the lead in educating their colleagues aboutthe benefits of interdisciplinary collaboration; many health careprofessionals are unaware of the expertise that social workers canbring to end-of-life care (Leipzig et al., 2002). Finally, one of the mostconvincing arguments that social workers can use for expanding their

role in end-of-life care is to demonstrate improved clinical outcomesor reduced costs because of their involvement (Clark, Rubenach, &Winsor, 2003; Miller et al., 2007).

Our findings should be placed in the context of several studylimitations. First, our data was obtained from caregivers of patientsseen at one university-based hospital and community-based hospice.With one exception, all patients had received care from the same hos-pital system. Social workers work in many other settings (e.g., nurs-ing homes, community, prisons, and pediatric hospitals) that care forterminally ill patients. Each has its own culture and regulations thatmay impact how social workers prepare caregivers. For example, theconcept of family-centered care provided by social workers may bemore established in pediatric hospitals than in adult hospitals(Gilmer, 2002). While the focus on hospital-based social work iscertainly a limitation to the generalizabilty of our findings, we believethat it is a reasonable place to begin investigation as approximately50% of all deaths in the United States occur in hospitals (NationalCenter for Health Statistics, 2009). Nonetheless, it would be impor-tant to verify our findings in other hospitals and settings. In addition,approximately 80% of our sample was bereaved. Although caregiversperceived social workers as generally unhelpful, we have no data onwhat social workers actually did or did not do in regards to preparingcaregivers. It is possible that caregivers’ perceptions of the helpfulnessof social workers were negatively affected by the death itself.Finally, our study was not designed specifically to explore caregivers’perceptions of social workers. Rather, the data was abstracted fromdata obtained from a larger project designed to explore the factorscaregivers believe are important for preparing for the death of a lovedone. Future work should be geared specifically to exploring this topicin more detail.

Implications for Practice

Family caregivers are invaluable to the care of patients with seriousillness. Despite providing intense care, sometimes for years, manycaregivers are not prepared for the death and may suffer morepsychological morbidity as a result. The scope of social work trainingand practice makes social workers ideal professionals to help addressthis deficiency in end-of-life care. Addressing caregivers’ unmetneeds are among the skills and competencies basic to the education

Hebert et al. 281

and training of social workers. Through this training, the expertisenecessary to provide psychosocial support, facilitate communicationbetween members of the interdisciplinary health care team, patients,and caregivers, and help caregivers access needed material, psycho-social, and spiritual resources is gained. The need for more socialwork intervention is clear from our sample. Our data demonstratethat hospital social workers may not be adequately preparingfamily caregivers. Future work should be directed to verifying ourfindings and determining how best to overcome the barriers thatprevent hospital social workers from preparing caregivers for thedeath of a loved one.

REFERENCES

Abramson, J. S., & Mizrahi, T. (2003). Understanding collaboration between socialworkers and physicians: Application of a typology. Social Work in Health Care,37(2), 71–100.

Arnold, E. M., Artin, K. A., Griffith, D., Person, J. L., & Graham, K. G. (2006).Unmet needs at the end of life: Perceptions of hospice social workers. Journal ofSocial Work in End-of-Life & Palliative Care, 2(4), 61–83.

Back, A. (2000). Communication between professions: Doctors are from mars, socialworkers are from venus. Journal of Palliative Medicine, 3(2), 221–222.

Barry, L. C., Kasl, S. V., & Prigerson, H. G. (2002). Psychiatric disorders amongbereaved persons: The role of perceived circumstances of death and preparednessfor death. American Journal of Geriatric Psychiatry, 10(4), 447–457.

Barry, L. C., & Prigerson, H. G. (2002). Perspectives on preparedness for a deathamong bereaved persons. Connecticut Medicine, 66(11), 691–696.

Ben-Sira, Z., & Szyf, M. (1992). Status inequality in the social worker-nursecollaboration in hospitals. Social Science and Medicine, 34(4), 365–374.

Bern-Klug, M., Gessert, C., & Forbes, S. (2001). The need to revise assumptionsabout the end of life: Implications for social work practice. Health & Social Work,26(1), 38–48.

Bern-Klug, M., Kramer, B. J., & Linder, J. F. (2005). All aboard: Advancing thesocial work research agenda in end-of-life and palliative care. Journal of SocialWork in End-of-Life & Palliative Care, 1(2), 71–86.

Berzoff, J., Lucas, G., Deluca, D., Gerbino, S., Browning, D., Foster, Z., et al. (2006).Clinical social work education in palliative and end-of-life care: Relationalapproaches for advanced practitioners. Journal of Social Work in End-of-Life &Palliative Care, 2(2), 45–63.

Carey, M. (1995). Concerns in the analysis of focus group data. Qualitative HealthResearch, 5(4), 487–495.

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

Clark, M. S., Rubenach, S., Winsor, A. (2003). A randomized controlled trial ofan education and counseling intervention for families after stroke. ClinicalRehabilitation, 17(7), 703–712.

Clayton, J. M., Butow, P. N., Arnold, R. M., & Tattersall, M. H. (2005). Discussingend-of-life issues with terminally ill cancer patients and their carers: A qualitativestudy. Support Care and Cancer, 13(8), 589–599.

Colone, M. (1993). Case management and managed care. Balancing quality and costcontrol. Social Work Administration, 19(1), 7–10.

Cowles, L. A., & Lefcowitz, M. J. (1995). Interdisciplinary expectations of themedical social worker in the hospital setting: Part 2. Health & Social Work,20(4), 279–286.

Emanuel, E. J., Fairclough, D. L., Slutsman, J., Alpert, H., Baldwin, D., & Emanuel,L. L. (1999). Assistance from family members, friends, paid care givers, andvolunteers in the care of terminally ill patients. New England Journal of Medicine,341(13), 956–963.

Fallowfield, L. J., Jenkins, V. A., & Beveridge, H. A. (2002). Truth may hurt butdeceit hurts more: Communication in palliative care. Palliative Medicine, 16(4),297–303.

Gilmer, M. J. (2002). Pediatric palliative care: A family-centered model for criticalcare. Critical Care Nursing Clinics of North America, 14(2), 207–214.

Gwyther, L. P., Altilio, T., Blacker, S., Christ, G., Csikai, E. L., Hooyman, N., et al.(2005). Social work competencies in palliative and end-of-life care. Journal ofSocial Work in End-of-Life & Palliative Care, 1(1), 87–120.

Haley, W. E., LaMonde, L. A., Han, B., Narramore, S., & Schonwetter, R. (2001).Family caregiving in hospice: Effects on psychological and health functioningamong spousal caregivers of hospice patients with lung cancer or dementia.Hospice Journal, 15(4), 1–18.

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(11), 1339–1344.

Hebert, R. S., Dang, Q., & Schulz, R. (2006). Preparedness for the death of a lovedone and mental health in bereaved caregivers of patients with dementia: Findingsfrom the REACH study. Journal of Palliative Medicine, 9(3), 683–693.

Hebert, R. S., Schulz, R., Copeland, V. C., & Arnold, R. M. (2008). What questionsdo family caregivers want to discuss with healthcare providers in order to preparefor the death of a loved one? An ethnographic study of caregivers of patients atend of life. Journal of Palliative Medicine, 11(3): 476–483.

Hebert, R. S., Schulz, R., Copeland, V. C., & Arnold, R. M. (2009). Preparing familycaregivers for death and bereavement. Insights from caregivers of terminally illpatients. Journal of Pain and Symptom Management, 37(1), 3–12.

Hebert, R. S., Prigerson, H. G., Schulz, R., & Arnold, R. M. (2006). Preparingcaregivers for the death of a loved one: A theoretical framework and suggestionsfor future research. Journal of Palliative Medicine, 9(5), 1164–1171.

Holliman, D. C., Dziegielewski, S. F., & Datta, P. (2001). Discharge planning andsocial work practice. Social Work in Health Care, 32(3), 1–19.

Hebert et al. 283

Keigher, S. M. (1997). What role for social work in the new health care practiceparadigm? Health & Social Work, 22(2), 149–155.

Kissane, D. W., Bloch, S., McKenzie, M., McDowall, A. C., & Nitzan, R. (1998).Family grief therapy: A preliminary account of a new model to promote healthyfamily functioning during palliative care and bereavement. Psycho-Oncology,7(1), 14–25.

Kovacs, P. J., Bellin, M. H., & Fauri, D. P. (2006). Family-centered care: A resourcefor social work in end-of-life and palliative care. Journal of Social Work in End-of-Life & Palliative Care, 2(1), 13–27.

Leipzig, R. M., Hyer, K., Ek, K., Wallenstein, S., Vezina, M. L., Fairchild, S., et al.(2002). Attitudes toward working on interdisciplinary healthcare teams: Acomparison by discipline. Journal of the American Geriatrics Society, 50(6),1141–1148.

Lord, B., & Pockett, R. (1998). Perceptions of social work intervention withbereaved clients: Some implications for hospital social work practice. Social Work& Health Care, 27(1), 51–66.

Luptak, M. (2004). Social work and end-of-life care for older people: A historicalperspective. Health & Social Work, 29(1), 7–15.

MacQueen, K. M., McLellan, E., Kay, K., & Milstein, B. (1998). Codebookdevelopment for team-based qualitative analysis. Cultural Anthropology Methods,10(2), 31–36.

Maguire, P. (1985). Barriers to psychological care of the dying. British MedicalJournal (Clinical Research Edition), 291(6510), 1711–1713.

Massachusetts General Hospital Social Work. (n.d.). Social work history. RetrievedNovember 22, 2007, from http://www.mghsocialwork.org/history.html

Miller, J. J., Frost, M. H., Rummans, T. A., Huschka, M., Atherton, P., Brown, P.et al. (2007). Role of a medical social worker in improving quality of life forpatients with advanced cancer with a structured multidisciplinary intervention.Journal of Psychosocial Oncology, 25(4), 105–119.

Mizrahi, T., & Abramson, J. S. (2000). Collaboration between social workers andphysicians: Perspectives on a shared case. Social Work in Health Care, 31(3), 1–24.

National Center for Health Statistics. (2007). Deaths by place of death, age, race, andsex: United States, 1999–2004. Retrieved November 22, 2007, from http://www.cdc.gov/nchs/data/dvs/MortFinal2004_Worktable309.pdf

National Center for Health Statistics. (2009). Faststats A to Z. Death and mortality2004. Retrieved November 22, 2007, from http://www.cdc.gov/nchs/fastats/deaths.htm

Parker, S.M., Clayton, J. M., Hancock, K., Walder, S., Butow, P. N., Carrick, S., et al.(2007). A systematic review of prognostic=end-of-life communication with adults inthe advanced stages of a life-limiting illness: Patient=caregiver preferences for thecontent, style, and timing of information. Journal of Pain and SymptomManagement,34(1), 81–93.

Parker Oliver, D., & Peck, M. (2006). Inside the interdisciplinary team experiences ofhospice social workers. Journal of Social Work in End-of-Life & Palliative Care,2(3), 7–21.

Patton, M. Q. (2002). Qualitative research & evaluation methods. Thousand Oaks,CA: Sage Publications, Inc.

Quinn, A. (1998). Learning from palliative care: Concepts to underpin the transfer ofknowledge for specialist palliative care to mainstream social work settings. SocialWork Education, 17(1), 9–20.

Rabow, M. W., Hauser, J. M., & Adams, J. (2004). Supporting family caregivers atthe end of life: ‘‘They don’t know what they don’t know.’’ Journal of the AmericanMedical Association, 291(4), 483–491.

Roberts, C. S., Baile, W. F., & Bassett, J. D. (1999). When the care giver needs care.Social Work in Health Care, 30(2), 65–80.

Rodriguez, K. L., Barnato, A. E., & Arnold, R. M. (2007). Perceptions andutilization of palliative care services in acute care hospitals. Journal of PalliativeMedicine, 10(1), 99–110.

Rose, S. L., & Shelton, W. (2006). The role of social work in the ICU: Reducingfamily distress and facilitating end-of-life decision-making. Journal of Social Workin End-of-Life & Palliative Care, 2(2), 3–23.

Russ, A. J., & Kaufman, S. R. (2005). Family perceptions of prognosis, silence, andthe ‘‘suddenness’’ of death. Culture, Medicine and Psychiatry, 29(1), 103–123.

Sheldon, F. M. (2000). Dimensions of the role of the social worker in palliative care.Palliative Medicine, 14(6), 491–498.

Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., Grambow, S.,Parker, J., et al. (2001). Preparing for the end of life: Preferences of patients,families, physicians, and other care providers. Journal of Pain and SymptomManagement, 22(3), 727–737.

Taylor-Brown, S., & Sormanti, M. (2004). End-of-life care. Health & Social Work,29(1), 3–5.

Teno, J. M., Clarridge, B. R., Casey, V., Welch, L. C., Wetle, T., Shield, R., et al.(2004). Family perspectives on end-of-life care at the last place of care. Journalof the American Medical Association, 291(1), 88–93.

Zittle, K. M., Lawrence, S., & Wodarski, J. S. (2002). Biopsychosocial model ofhealth and healing: Implications for health social work practice. Journal of HumanBehavior in the Social Environment, 5(1), 19–33.

Date Received: 12/04/07Date Revised: 02/03/08

Date Accepted: 02/18/08

Hebert et al. 285

Preparing Family Caregivers for the Death of a Loved One: Implications for Hospital Social Workers

Documents

Savvy Strategies for Caregivers with Loved Ones Living with Dementia Ken Hepburn, PhD Nell Hodgson Woodruff School of Nursing Emory Alzheimer’s Disease

folkways-media.si.edustudy the master" of children's music as well as learn repertoire that young children and their parents, teachers, and caregivers have loved for over 40 years

NEWSLETTERstorage.cloversites.com/stjohnslutheranchurch2/... · extends beyond the patients. She also looks out for the caregivers who bring their loved ones to the Clinic, going

JAMES ELLIOTT NAMI MP PRESENTATIONnamila.org/wp-content/uploads/2016/05/NAMI-MissingPerson.pdf · WHEN!A!MENTALLY!ILL!LOVED!ONE!GOES!MISSING!! Preparation!&!Response!Protocols!For!NAMI!Families!&!Caregivers!!!!!

Guidebook for Caregivers of Persons - Cami Singapore · Guidebook for Caregivers of Persons with Mental Illness 1 Understanding Our Loved Ones a) In order to help our loved ones,

United Way Caregivers Coalition PATHWAYS FOR … Way Caregivers Coalition PATHWAYS FOR ... people for their hard work and ... the challenges of caring for an aging loved one. The first

Preparing caregivers, family and patients for end of life care at home. 1

TOOLS FOR CAREGIVERS Balancing work and caregiving ...€¦ · 5. ASK QUESTIONS, GET ANSWERS. EDUCATE YOURSELF AS MUCH AS POSSIBLE. Understand your loved one’s health condition,

Caregiving for loved ones with a brain tumoursummit.sfu.ca/system/files/iritems1/6521/b34636936.pdf · Caregivers 1 I INTRODUCTION Statistics indicate that over 136,000 new cases

Caregiver ToolkiT - Hospice Hearthospiceheart.org/wp-content/uploads/2016/09/CC_Toolkit__San-Joaq… · number of educational tools for family caregivers helping their loved one with

10 Resources for Family Caregivers and Their Loved Ones with Special Needs

Legal Essentials for Caregivers - Rocket Lawyergo.rocketlawyer.com/rs/rocketlawyerinc/images/RocketLawyer_Guide… · or Living Will (or any other legal document). If your loved one

CAREGIVERS SELF-CARE WORKBOOK€¦ · Caregivers are integral to the health care system and our loved ones well-being. As such, the physical health and emotional state of caregivers

Estate Planning Toolkit: Protecting and Preparing for the ... · Estate Planning Toolkit: Protecting and Preparing for the Future The Essentials for You and Your Aging Loved Ones

AN UPDATE ON SUSTAINING SOUTH CAROLINA’S FAMILY … · Carolinians who serve as caregivers for loved ones of any age or need. Please read the plan and take steps to help all caregivers

Caregivers and Stroke - National Stroke · PDF fileCaregivers . and Stroke. Taking care of your . loved one and yourself. As the primary caregiver for a stroke survivor, ... Plan meals

A Salute to Caregivers During National Family Caregivers

T ALZHEIMER S URVIVAL GUIDE FOR CAREGIVERS · 4 The Alzheimer’s Survival Guide for Caregivers responsibilities as a caregiver increase, and taking care of your loved one becomes

Reducing Stress for Healthcare Professionals and Caregivers · of Cruising Through Caregiving: Reducing The Stress of Caring For Your Loved One, she helps healthcare providers and

Preparing for the Incarceration of a Loved · PDF file · 2015-10-10Preparing for the Incarceration of a Loved One ... • You can ask the parent to sign a letter of parental designation