Seminars in Oncology Nursing, Vol 27, No 3 (August), 2011: pp 211-217 211

TECHNOLOGIES TO SUPPORT

END-OF-LIFE CARE

GEORGE DEMIRIS, DEBRA PARKER OLIVER, AND ELAINE WITTENBERG-LYLES

George Demvioral Nursin

University of

Oliver, MSW,Ann H. Long

Medicine, Sc

Columbia, M

ciate Profess

of North Texa

ManuscriptWashington,of North Texa

OBJECTIVES: To describe the current level of utilization of informatics systems

in hospice and palliative care and to discuss two projects that highlight the role

of informatics applications for hospice informal caregivers.

DATA SOURCES: Published articles, Web resources, clinical practice, and

ongoing research initiatives.

CONCLUSION: There are currently few informatics interventions designed

specifically for palliative and hospice care. Challenges such as interoperability,

user acceptance, privacy, the digital divide, and allocation of resources all

affect the diffusion of informatics tools in hospice.

IMPLICATIONS FOR NURSING PRACTICE: Caregiver support through use of

information technology is feasible and may enhance hospice care.

KEY WORDS: Informatics, hospice, palliative care, information technology,

Internet

THE FIELD of biomedical and healthinformatics, defined as the study of theuse of information technology (IT)to support and enhance health care

delivery, biomedical research, and education, hasexperienced rapid growth in recent years. Infor-matics applications including electronic medicalrecords, hospital information systems, medicalimaging applications, and telemedicine platformsare widely used in health care settings.

iris, PhD: Associate Professor, Biobeha-

g and Health Systems, School of Nursing,

Washington, Seattle, WA. Debra Parker

PhD: Associate Professor, Curtis W. and

Department of Family and Community

hool of Medicine, University of Missouri,

O. Elaine Wittenberg-Lyles, PhD: Asso-

or, Communication Studies, University

s, Denton, TX.

work completed at the University ofUniversity of Missouri and the Universitys.

Initially developed with an emphasis onimproving care delivery within an institution,advances in technology have shifted the designof IT-based systems to a focus on patient applica-tions that allow patients to be actively involved inthe decision-making process and to access theirown records and other resources.Government initiatives worldwide are currently

in place to foster and expedite the adoption anddiffusion of informatics applications. In the United

Supported in part by the National Institutes of Health(NIH) National Institute on Nursing grant nos.R21NR010744 (Demiris, PI) and R01NR011472 (Parker

Oliver, PI).Address correspondence toGeorge Demiris, PhD, Bi-

obehavioral Nursing and Health Systems, Box 357266,

University of Washington, Seattle, WA 98195-7266.

e-mail: gdemiris@uw.edu

� 2011 Elsevier Inc. All rights reserved.

0749-2081/2703-$36.00/0.

doi:10.1016/j.soncn.2011.04.006

212 G. DEMIRIS, D. PARKER OLIVER, AND E. WITTENBERG-LYLES

States (US), for example, the federal governmentestablished an ambitious goal of providing elec-tronic health records for all Americans that willensure information is accessible at the time andplace of care, regardless of the informationsource.1 These records are to be designed to allowfor secure and private exchange of informationamong health care providers when authorized bythe patient. The federal government is takingseveral steps to realize this goal, such as an adop-tion of health information standards, increasedfunding for demonstration projects, and coordina-tion of efforts at a federal level. Furthermore, withthe Health Information Technology for Economicand Clinical Health Act (HITECH), the govern-ment authorized incentive payments to cliniciansand hospitals when they use Electronic HealthRecords privately and securely to achieve speci-fied improvements in care delivery, promoting‘‘meaningful use’’ of IT.1

While informatics tools are widely used in mostdomains of health care, their diffusion has notfully reached the field of palliative and hospicecare where the focus is on providing care for theseriously ill and dying. The goal in this setting isto minimize suffering and improve patients’quality of life at the end of life, with an emphasison palliation rather than treatment of the terminaldisease. In the US, one of four deaths is caused bycancer.2 As reviewed by Murray et al,3 while themajority of patients with cancer continue to diewithin institutions, those who die at home typi-cally have identified caregivers. Communicationand connection between providers, hospice/pallia-tive care services, and the home vary widely. Palli-ative care services may be delivered under theumbrella of a large health care facility that utilizesIT, but it is less frequent that system designers willimplement applications specifically for homehospice or palliative care services. For example,findings from the 2000 National Home andHospice Care Survey in the US indicated thatapproximately 32% of all agencies, and about onefifth of hospice agencies specifically (18.6%), re-ported using computerized medical records.4

CURRENT USE OF INFORMATICS FOR

END-OF-LIFE CARE

Studies have examined the potential of telecom-munications; ways in which technology can func-tion as a support mechanism for caregivers of

hospice patients,5 an assessment of the readinessof hospice organizations to accept technologicalinnovation,6 and the creation of a Web-basedworksheet that allows for expert feedback ina community-based hospice.7 Long et al8 exploredwhether computers and the Internet are used inhome care and hospice agencies, conductinga survey that indicated the potential of advancedtechnologies remains to a great extent unexplored.Finally, several studies focused on the use oftelehealth or videoconferencing technologies inhospice (telehospice) describing the conceptand potential of telehospice,9-13 pilot projectswith a small numbers of subjects,14-16 ethicalconsiderations associated with the use oftelehealth technologies in hospice care,17 hospiceagencies’ readiness to adopt telehealth,6 providers’acceptance,18-21 and patients’ acceptance.22,23

In spite of the limited evidence of IT use, specif-ically in hospice, there are successful demonstra-tions of IT implementation in home care thathighlight the potential of informatics to improvepalliative and hospice care. Home-based tele-health applications (also known as telehomecareapplications) are based on the use of telecommu-nication and videoconferencing technologies toenable a health care provider at the clinical siteto communicate with patients in their home.Such an interaction via videoconferencing iscalled a ‘virtual visit.’ Johnston et al24 evaluatedthe use and costs of remote video technology inthe home care setting for congestive heart failurepatients. They determined that this approachachieved cost savings and improved access tohome care support while producing no differencesin clinical outcomes when compared with tradi-tional home care. Similarly, a telehealth applica-tion developed at Columbia University25 fordiabetic home care patients showed that the inter-vention led to measurable improvements in clin-ical status for the patients. Obviously, theevaluation of telehealth in hospice will focus onoutcomes such as patient’s comfort or caregiveranxiety or cost, rather than long-term clinicaloutcomes that are the focus of the chronic condi-tion, telehealth interventions in home care.The Internet provides a platform for consumers

to access health information and can thereforeplay a role in end-of-life care as well. Over theyears, the number of Web-based patient educationsites that allow patients to access informationrelated to their condition has been increasing.Such sites, however, do not always protect visitors

TECHNOLOGIES TO SUPPORT END-OF-LIFE CARE 213

from misleading or inaccurate data. There areexamples of successful implementation of Web-based systems that empower patients, such asthe home asthma telemonitoring (HAT) system26

that provides patients with continuous Web-based individualized help in the daily routine ofasthma self-care, or a Web-based system forpatients who manage insulin-dependent diabetesmellitus.27 Again, this domain has not beenstudied extensively in the hospice setting. Williset al28 conducted a systematic literature reviewto identify current Internet-based interventionsin hospice and palliative care and the evidence oftheir effectiveness. The authors found only sixstudies evaluating Web-based clinical interven-tions for patients, caregivers, and hospice/pallia-tive care providers.

Mobile devices are widely used in other clinicalsettings and may find utility in palliative care aswell. For health care practitioners, the use ofmobile IT not only can bring additional resourcesto the point-of-care, but it can actually change thepoint of care itself. Within the mobile IT diseasemanagement literature, there appears to bea gradual transition from provider-centric applica-tions to applications that include the patientwithin the process. Earlier research into usingmobile IT devices, such as PDAs or cellularphones, emphasized the collection of data fromthe patient to facilitate clinician decision-making.29 Decision support for these devices hasbeen mainly on the clinician (receiver) side.However, there are a few applications that arealso providing real-time decision support topatients.30 Interestingly, despite the movementtoward patient-centric applications, most of thecurrent application descriptions rely on an oldermedical model of decision-making, in which thepatient is a receiver of instructions rather thana participant in the management process.31 Inhospice care, the use of mobile devices has beenstudied by Kuziemsky et al32 as a tool to enhancepain management. However, the tool is used solelyby health care providers and does not involvepatients.

When considering the potential of IT, the digitaldivide becomes a challenge that needs to be ad-dressed. The term ‘‘digital divide’’ is used to referto the gap in computer and Internet accessbetween population groups segmented by income,age, educational level, or other parameters.Several efforts have been made to address thisdivide, focusing primarily on providing access to

computers, the Internet, and training. While lowersocioeconomic groups are increasingly gainingInternet access, it is considered likely that thedigital divide will persist as new technologiesbecome available. For example, as sophisticatedmultimedia services become an integral part ofInternet-based applications, broadband accessmay become as important for accessing healthcare sites as narrowband access is today for ob-taining Web-based health information. In thatcase, the digital divide can exist between twogroups that both have PC hardware and Internetaccess, simply because of different access proto-cols. Furthermore, access to infrastructure isonly one dimension of the digital divide, of whichhealth literacy and appropriate Web content areadditional key components. These issues playa key role in the diffusion of informatics applica-tions in hospice and palliative care, especiallysystems that are to be used or implemented inthe patient’s and families’ homes.

IT AND THE CAREGIVING EXPERIENCE

Our own work focuses specifically on thehospice setting and ways to utilize IT to supportinformal caregivers, namely family, spouses,friends, or others who assume the primary unpaidcaregiver role, often parallel to diminished func-tion or abilities in the patient. Recent researchhas underscored the importance of understandingthe risks and unmet needs of informal caregiverswho care for patients at the end of life.33 The pres-ence of a caregiver in the home is required foradmission to many US hospices as non-professional caregiving is crucial to providingend-of-life care for patients with terminal illnesswho chose to die at home. Caregivers are atgreater risk for depression, deteriorating physicalhealth, financial difficulties, and prematuredeath.34,35 Health and psychological risks arecompounded by the fact that caregivers are lesslikely to engage in preventive health behaviors,or otherwise attend to their own health needs,which places them at risk for exacerbation ofexisting chronic health problems.36

In many instances, hospice agencies struggle toprovide adequate or frequent support to caregiversas they are faced with a series of challenges. TheInstitute of Medicine has identified systemic defi-ciencies in end-of-life care37 that can be groupedinto (1) legal, organizational, and economic

FIGURE 1. TheAssessingCaregivers for Team interventionsmodel45 illustrating caregiver needs,mediators, hospice inter-ventions, and outcomes. (From Demiris et al. Am J Hospice Palliat Med, pp 128-134, copyright� 2009. Reprinted with permis-sion from SAGE Publications.)

214 G. DEMIRIS, D. PARKER OLIVER, AND E. WITTENBERG-LYLES

obstacles to palliative care; and (2) the systemiclack of appropriate end-of-life care, education ofhealth care professionals and the public, andcommunication between all involved parties.Caregivers rate communication as essential tothe support they receive and seek regular contactwith hospice providers, appreciating both face-to-face communication and the security of the phoneas an ‘‘emergency back-up tool.’’38 The use ofinformation technologies can bridge geographicdistance and enhance hospice services providedto informal caregivers in cases where additionalface-to-face interactions may be costly or non-feasible.

A growing number of researcher teams areexploring strategies to enhance traditional hospicecare through the use of Web-based technologies.Although the field is in its infancy, early resultsappear promising. Many hospice caregivers andpatients access information about their illnessesonline.39 Often spending the majority of time inthe home, both patients and caregivers seekremote mutual support from others who arecoping with a terminal illness, often enjoying theanonymity provided by the Internet.40,41 Lindand Karlsson41 found that both hospice providersand service recipients benefited from Web-basedservices in that patients reported a high level of

access to providers, while providers receivedinformation from patients in a timely manner.

FOCUS ON THE CAREGIVER

Kinsella et al42 categorized caregiver burdeninto an objective form represented by tangiblecosts, physical care demands, disruptions to dailyroutines, and a subjective form represented by thecaregiver’s own appraisal of the impact of caring,emotions aroused by caregiving, and copingresources. Factors that affect the caregiving expe-rience included personality, stressor appraisal,use of coping strategies, the availability andadequacy of social support, family functioning,and competing commitments.42 Based on thisconceptual foundation, a comprehensive modelof stress and coping indicating the mediatingfactors in the process of caregiving was developedby Pearlin et al, 43 and has been further developedby Meyers and Gray.44

Our work of integrating technology for hospicecaregivers, based on previous work cited above,is a theoretical model labeled ACT (AssessingCaregivers for Team Interventions). ACT (Fig. 1)incorporates ongoing assessment of the back-ground context, primary, secondary, and intrapsy-chic stressors, as well outcomes of the caregiving

FIGURE 2. The videophone used for the study operatesover regular phone lines and plugs into the phone alreadyin use in the household, thus, reducing the need for trainingprior to operation. Both parties have to consent by pressingthe ‘‘Video’’ button for a video call to be established; if one orboth parties choose not to enable the video feature, they canuse their regular phone for audio interactions.

TECHNOLOGIES TO SUPPORT END-OF-LIFE CARE 215

experience and, subsequently, the design anddelivery of appropriate interventions to be deliv-ered by the hospice team (ensuring a holisticapproach to addressing the multifaceted chal-lenges of the caregiving experience).45 ACT cantherefore act as one of the mediators affectingthe overall caregiver experience and improveoutcomes such as satisfaction with hospice care,reduced anxiety, and improved overall quality ofcare.45 Next, we describe two projects based onthe ACT model that use informatics tools todeliver supportive services to hospice informalcaregivers.

A VIDEO PLATFORM TO INVITE CAREGIVERS TO

INTERDISCIPLINARY HOSPICE TEAMS: THE

ACTIVE INTERVENTION

Patient and family participation in hospiceinterdisciplinary team (IDT) meetings is consis-tent with the hospice philosophy of care thatrecognizes the family caregiver along with thepatient as the dyad that receives services anddrives decision-making.46 Yet, significant barriersexist to fully involving patients and their familymembers in IDT meetings. In our preliminarywork,47 we found that less than half of hospicessurveyed ever had a caregiver attend theirmeeting, and in no case was caregiver attendancea standard of care. The barriers identified for thislack of attendance included the frail condition ofthe patient and the time and distance requiredfor travel to meet at the hospice office.7

The ACTIVE (Assessing Caregivers for TeamIntervention through Videophone Encounters)intervention was designed to overcome thesebarriers by allowing patients and/or their informalcaregivers to participate in meetings from theirown homes using commercially available video-phone technology (Fig. 2). By eliminating logis-tical barriers, ACTIVE was designed to providethe context for patient and family participationin hospice IDT meetings.48 Staff installed a video-phone unit in the homes of participating families,connecting them to the hospice office using a stan-dard telephone line. The hospice office was equip-ped with compatible videophone technology thatcould be viewed on a large television screen,thereby permitting numerous members of thehospice IDT to view the participant simulta-neously. The intervention was designed primarilyfor family caregivers; patients could participate as

their health condition(s) allowed.48 Results indi-cated that ACTIVE enhanced team functioningin terms of context, structure, processes, andoutcomes. Participants discussed challenges andoffered corresponding recommendations to makethe intervention more efficient and effective.Data supported ACTIVE as a way for hospiceproviders to more fully realize their goal ofmaximum patient and family participation incare planning.48 Caregivers readily asked ques-tions while virtually attending the meeting, espe-cially of the hospice medical director. Thosequestions primarily involved issues of painmanagement.49 Caregivers’ perceptions of painmedication management and quality of lifeimproved in phase 2 (when the video interventionwas introduced) as compared with caregivers inphase 1 (where traditional hospice services wereobserved).50 The caregivers in the interventionphase had significantly fewer perceptions of pain

216 G. DEMIRIS, D. PARKER OLIVER, AND E. WITTENBERG-LYLES

management that were regarded as barriers.50

Both caregivers and hospice staff members re-ported ACTIVE as valuable, both reporting thatthe intervention created trust in the relationshipas the ‘‘voices and faces’’ were more real duringthe meetings.44

USING VIDEOPHONES TO DELIVER PROBLEM-

SOLVING THERAPY TO HOSPICE CAREGIVERS

Videophones are a feasible method for thedelivery of problem-solving therapy to informalhospice caregivers.51 Because audio-only commu-nication is poor at capturing nonverbal behaviors,it may not be as efficient as a mechanism forcomprehensive assessment of the caregiver andpatient situation, followed by delivery of a cogni-tive-behavioral intervention. In our pilot studywe used the same commercially available, low-cost videophone technology as in previous work.Informal hospice caregivers were randomly as-signed to receive problem-solving therapy fromresearchers using videophones, instead of commu-nicating in face-to-face sessions. Outcomemeasures included caregiver anxiety, quality-of-life and problem-solving abilities, technical qualityof video sessions, and satisfaction of participants(including both subjects and researchers). Theoverall technical quality of the video calls wasvery good. Caregivers reported a slightly higherquality of life post-intervention than at baseline.51

Caregivers reported lower levels of anxiety post-intervention than at baseline. The subjects weregenerally satisfied with the videophones during

their exit interviews, suggesting this as a cost-effective way to deliver cognitive behavioral inter-ventions without investment in travel.

CONCLUSION

There is an emerging body of literature thatshowcases the potential of informatics applica-tions for patients and caregivers in hospice. WhileIT has not been used in the hospice setting to thesame extent as in other clinical domains, studiessuggest the potential of videoconferencing, Webapplications, and mobile tools to support clini-cians as well as patients and their families. As isthe case with any health information system,end-user satisfaction is key to successful systemimplementation. Health care is an information-intensive industry, yet stakeholders may resistIT as it may change roles and responsibilities.52

Hospice end-users represent different professionaldisciplines, patients, family members, andinformal caregivers. Testing of new hospice ITrequires that the user groups be involved in allstages of the system development.If IT is to play a role in hospice and palliative

care, more research is needed to explore theappropriate ways of designing and implementinginformation systems in this domain, and to deter-mine the technology’s impact on patient clinicaloutcomes and the caregiving experience. An inter-disciplinary approach will ensure that we movebeyond silos of expertise and design systemsdriven not by the technological advances butrather by the needs of the stakeholders.

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