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Nurse-led navigation to provide early palliative care in rural areas: a pilot study Pesut, Barbara; Hooper, Brenda; Jacobsen, Marnie; Nielsen, Barbara; Falk, Miranda; O ‘Connor, Brian P Jun 5, 2017

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RESEARCH ARTICLE Open AccessNurse-led navigation to provide earlypalliative care in rural areas: a pilot studyBarbara Pesut1*, Brenda Hooper2, Marnie Jacobsen2, Barbara Nielsen3, Miranda Falk4 and Brian P. O ‘Connor5AbstractBackground: Few services are available to support rural older adults living at home with advancing chronic illness.The objective of this project was to pilot a nurse-led navigation service to provide early palliative support for ruralolder adults and their families living at home with advancing chronic illness.Methods: Twenty-five older adults and 11 family members living with advancing chronic illness received bi-weeklyhome visits by a nurse navigator over a 2-year period. Navigation services included symptom management,education, advance care planning, advocacy, mobilization of resources, and psychosocial support. The nursenavigator collected longitudinal data on older adult and family needs, and older adult quality of life and healthcareutilization.Results: Satisfaction with the service was high. There was no attrition over the 2-year period except through death,and few cancelled visits, indicating a high degree of acceptability of the intervention. The navigator addressedcomplex, multi-faceted needs through connecting health, social, and informal community resources. Participantswho indicated a preferred place of death were able to die in that preferred place (n = 7). Emergency room use byparticipants was minimal and largely unpreventable by the nurse navigator. Longitudinal health-related quality oflife scores for many participants were poor, lending further support to the need for more focused attention to thisupstream palliative population.Conclusions: Using a nurse navigator to facilitate early palliative care for rural older adults living with advancedchronic illness is a promising innovation for meeting the needs of this population. Further research is required toevaluate outcomes on a larger scale.Keywords: Rural health services, Chronic disease, Palliative care, Patient navigation, Nursing, Palliative approachBackgroundFinding innovative ways to care for a population agingwith complex, chronic illness is high on the healthcarepolicy agenda [1, 2]. Of particular concern is the need toclose gaps in support for those transitioning from chronicillness management to palliative care [3, 4], a time of ad-vancing chronic illness. This is an early palliative popula-tion; they are not imminently dying, but death within ayear would not come as a surprise [5]. A palliative ap-proach has been used to describe ideal care for this popu-lation [6–8]. However, little evidence exists on how torealize this ideal [9]. A palliative approach is defined aspalliative care that is adapted to non-specialist contexts,chronic disease conditions, and provided early in thepalliative trajectory with the intent to ease the transi-tion between chronic disease management and end-of-life care [10].Evidence describing the challenges facing older adultsliving at home with advanced chronic illness is compel-ling [11, 12], illustrating the urgent need for enhancedsupport. This population lives with heavy symptom bur-den [13–15] and are at risk for social isolation [16]. Theyhave high needs for support, anticipatory guidance, ad-vocacy, and assistance with decision-making [17]; how-ever, they may not yet be eligible for home-basednursing services, which in Canada are often providedlater in the palliative trajectory. Further, older adults andfamily are often unaware of the health and social ser-vices available to them in their community [18]. Indeed,* Correspondence: barb.pesut@ubc.ca1School of Nursing, University of British Columbia, Okanagan, 1147 ResearchRoad, Kelowna, BC V1V 1V7, CanadaFull list of author information is available at the end of the article© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Pesut et al. BMC Palliative Care  (2017) 16:37 DOI 10.1186/s12904-017-0211-2because of a lack of suitable supports, this time on thepalliative trajectory may be more problematic than theactively dying phase [19].Rurality adds a layer of complexity to this already chal-lenging picture. Rural healthcare services are limited [20]and inaccessible, in part, because of personnel shortages[21]. As a result, rural persons living with a palliative diag-nosis undergo more transitions in care than their urbancounterparts [22]. However, rural communities also haveunique capacity to provide high quality care [23]. The in-herent accountability that arises from caring for those forwhom personal and professional relationships co-exist,and the commitment of local palliative champions, sup-port good care [24]. As such, the solutions to rural health-care service limitations often lie in building this inherentrural community capacity. This in turn supports the idealof aging and dying in place for rural individuals.In keeping with this community-capacity building ap-proach, the aim of this study was to pilot a nurse-led,rural early palliative service. Individuals living with ad-vanced chronic illness received in-home visits by a nursewho performed a supportive navigation role. A previouspublication provided data on community-capacity build-ing strategies in preparation for the service and earlyfeasibility findings [25]. This publication provides sum-mative evaluation findings.MethodsThis was a single-centre, 2-year (2013–2014) observa-tional study. Specifically, we sought to answer threequestions: Is the service feasible, and if so, what is theoptimal visit schedule, navigator to client ratio, and spe-cific nature of the services provided? What is the accept-ability of the service for all stakeholders? What arepreliminary outcomes of the intervention on older adultquality of life, family needs, and healthcare utilization?Evaluation data was collected using mixed method ap-proaches. After ethical approval by the university andhealth authority, older adults living with advancedchronic illness and a family member, if applicable, wererecruited to participate. All participants provided writ-ten, informed consent. Older adults were visited in thehome by the nurse navigator who provided symptommanagement, education, advance care planning, advo-cacy, mobilization of resources, and psychosocial sup-port. The role resembled that of a nurse navigatordescribed in the literature [26–28]. However, the naviga-tion intervention entailed more intensive contact than istypically provided by either navigators or case managersand focused beyond formal healthcare services to in-clude community social care and informal networks.The nurse navigator was supported by a nurse practi-tioner and general practitioner with palliative expertise;monthly meetings were held to discuss participants’progress. The nurse practitioner provided coverage whenthe nurse navigator was not available (e.g., holidays, illness).Participants were provided with an on-call line, available24/7, for assistance between visits. To ensure good commu-nication with the primary care physician and other health-care providers, participants signed an information sharingconsent. Primary care physicians received regular faxesabout relevant clinical issues. Telephone consultation wasused for more pressing clinical issues. Older adults wereprovided with an in-home journal that detailed relevant is-sues to share with their other care providers.Setting and participantsThe study was conducted across two rural communitieswith populations of under 10,000, located 30 min apartby car. Healthcare services included a shared hospitaland limited home care services, but no specialized pallia-tive services or hospice beds. In the Canadian context,specialized services mean the availability of a multi-disciplinary palliative team and dedicated palliative beds.Further, in rural areas limited home care services are typ-ically reserved for those patients who require specificnursing tasks (e.g., wound management). The nurse navi-gator had a graduate degree in counseling, extensive clin-ical experience in home-based palliative care, and hadlived and worked in the rural community for most of hercareer. Participants were 25 older adults living with ad-vanced chronic illness (see Table 1) who were recruitedthrough public advertising (n = 10) and healthcare pro-viders (n = 15). Recruitment was ongoing to keep enroll-ment at capacity after attrition due to death. Eligibilitycriteria were adults, aged 55 or older, living with oneor more chronic illnesses that could reasonably leadto death within the next year [5]. Exclusion criteriaincluded dementia because this population within thisrural community was likely to be institutionalized inTable 1 Demographic information for study participantsSex Female: n = 11Male: n = 14Age on enrollment Range: 57–93Mean (SD): 74.12 (10.27)Living arrangements At home: n = 6At home with family: n = 17In supportive living: n = 2Time on study (in days) Alive at study conclusion: n = 14Range: 54–664Mean (SD): 421.07 (193.68)Deceased: n = 11Range: 30–628Mean (SD): 246.45 (213.53)Participant primary diagnosis Cancer: n = 13Heart Failure: n = 4COPD: n = 1Neurodegenerative: n = 1Other: n = 6Pesut et al. BMC Palliative Care  (2017) 16:37 Page 2 of 10their final year of life. In addition to the 25 recruited,25 were screened but did not participate. Fifteen declinedparticipation after receiving further information. Ten weredeemed ineligible; reasons included too close to death andalready had services in the home (n = 5); dementia (n = 2);and condition not life-limiting (n = 3). Eleven family mem-bers were recruited, 8 partners and 3 adult children.Data collection and analysisAt each scheduled visit the nurse navigator recorded dataon visit characteristics (e.g., length, type, persons present),needs and services provided, participant quality of life(QOL) using the McGill QOL Questionnaire (MQOL)[29, 30], family needs using the Caregiver Support NeedsSurvey (CSNS) [31, 32], and healthcare utilization sincethe previous visit. The MQOL is a 17-item instrumentmeasuring both overall and health-related quality of lifeusing physical, psychosocial and existential subscales. TheCSNS asks participants to rate 25 common caregiver taskson two dimensions, importance of the need, and the de-gree to which it is being met. Administration schedulesvaried as participants completed questionnaires only whenthey felt well enough to do so. Visit characteristics wererecorded using a structured reporting form that requiredthe navigator to fill in needs identified and care providedunder six domains. Healthcare utilization was recorded onthe research report using a tick-box of available services.Quantitative was managed using SPSS Software IBM.Data regarding acceptability and satisfaction were col-lected from older adults who remained alive at studyconclusion, family members, and other stakeholders(e.g., advisory group, physicians, health region decisionmakers) using semi-structured interviews. Interviews wereconducted by the principal investigator or trained researchassistant either in person or by telephone. An interviewguide was used to gather data on experiences with the ser-vice. Interviews were audio-taped, transcribed verbatim,and analyzed using NVIVOQSR software. A thematicanalysis [33] was constructed based upon the researchquestions of experiences of the service, services provided,satisfaction with services, and advice for improvements.ResultsFeasibility, acceptability and outcomes are reportedthrough the services provided, longitudinal MQOL andCSNS scores, healthcare utilization, and qualitativeevaluation interviews.Services providedParticipants were visited weekly during the first 9 monthsof the study and then biweekly for the remainder of thestudy. This change was implemented to increase servicecapacity. Visit schedules were flexible to accommodateparticipant needs. Table 2 provides an overview of thevisits conducted over the 2-year period. This flexible ap-proach resulted in only 28 (0.05%) cancelled visits overthe study period. Half of these were cancelled by 2 partici-pants who were experiencing heavy symptom burden.There was no study attrition, except through death; oneparticipant declined visits for 6 months and then resumedparticipation. Mean visit duration of scheduled, in-personvisits, even for long-term participants, remained stable atapproximately 1 h. This time was necessary to address thecomplex challenges participants were experiencing, whilerespecting the hospitality central to rural relationships(e.g., the requisite cup of tea). Unscheduled visits occurredwhen either the nurse navigator, participant, or familymember identified a need that required attention beyondthe regularly scheduled visit. These unscheduled visitsrepresented 20% of the total visits, of which 38% were ini-tiated by study participants. The on-call line was used 47times over the 2-year period by a participant or familymember; participants indicated that their needs were wellmet through the regular visits.Data revealed the multi-faceted problems (e.g., familyconflict, financial challenges, troubling symptoms, mo-bility issues) with which these participants were coping.The nurse navigator addressed these challenges incre-mentally over subsequent visits. Part of her role includedbridging the gaps between health and social care. For ex-ample, one older adult had a persistent environmentalproblem, which was impacting his health, that requiredseveral months of negotiation by the navigator with agen-cies and contractors. Table 3 provides examples of typicalinterventions performed by the nurse navigator. Primaryinterventions were teaching about symptom managementand psychosocial support for the emotional challengescharacteristic of living with advanced illness. Assistingolder adults to comprehend healthcare information andmake decisions about care was also central to the role.Participant QOL and family needs scoresLongitudinal collection of older adult QOL and familyneeds served two purposes: to describe outcomes andtheir trajectories over time and to act as a patient-reported outcome measure to guide clinical care. Figure 1illustrates longitudinal scores of health-related QOL(scores calculated from five sub-domains) for participants.Overlaying lines provide norm-referenced scores derivedfrom another study [34] that describe a “good day” (meansof 7.9) and a “bad day” (means of 5.3). Trajectoriesreflected a stable pattern for most participants. Four par-ticipant graphs illustrate declining scores over the studyperiod; two illustrate mildly improved scores.Obtaining high quality data on the Caregiver SupportNeeds Survey was challenging. Over subsequent admin-istrations, 14.7% of total data was missing, renderingmany of the questionnaires unusable for analysis. NinePesut et al. BMC Palliative Care  (2017) 16:37 Page 3 of 10of 11 family members provided valid data on admission tothe study. Top four unmet needs were related to informa-tion support: receiving information on ways of comfortingthe patient (n = 5); receiving information on patient’s psy-chological needs (n = 4); receiving information on symp-toms (n = 3); and receiving information on activities andexercises for the patient (n = 3). Seven family membersproduced usable questionnaires whereby data could becompared over two time points, the first administrationand the last administration (Table 4). Families of patientswho died prior to study conclusion reported increasingunmet needs in information, tangible support andemotional support. Families of patients who were alive atstudy conclusion, reported better information and tangiblesupport scores at the second measurement interval.Experiences of using the MQOL and CSNS were col-lected in the evaluation interviews. Use of the MQOLwas well received once participants became comfortablewith the personal nature of the questions. Participantssuggested that the questionnaire facilitated open conver-sations and enabled them to reflect on their lives in away they might not otherwise have done. Others sug-gested that some of the questions were not relevant andindicated that it should be done less frequently.Table 2 Visit characteristicsTotal contacts N = 631aIn person: n = 553, By telephone: n = 78Length of visit by nature and person present. Visit method and persons present Length, in minutesMean (SD)In person with participant only: n = 326 57 (23)In person with participant dyads only: n = 77 85 (37)Telephone with participant only: n = 37 10 (3)In person with family caregiver only: n = 7 49 (27)Telephone with family caregiver only: n = 26 9 (3)In person with both participant and family caregiver: n = 137 67 (21)Telephone with both participant and family caregiver: n = 6 10 (0)In person with other family (non-registrant): n = 6 18 (9)Telephone with other family (non-registrant): n = 9 13 (4)Scheduled versus Unscheduled Scheduled: n = 508Unscheduled: n = 123 of which 76 (62%) initiated by navigatorUse of 24/7 call line By participant: n = 19, 4 resulted in home visitBy family/friend: n = 28, 8 resulted in home visitPhone call from other family/friend: n = 8, 2 resulted in home visitaThis number excludes bereavement visits with familyTable 3 Examples of nurse navigator interventionsDomain of supporta Examples of interventionsDisease management Teaching about disease treatment, trajectories, medication and side effect management. Coaching regardingcommunicating with healthcare providers and healthcare utilization. Accessing disease management resourcesin the community, at tertiary treatment centres, and online. Discussing decisions regarding treatment choices.Spiritual Conversations about fear of dying, spiritual guidance, negative religious coping, afterlife, suffering, involvementin church. Referrals to community chaplain. Life reminiscing and dignity therapy.Physical Teaching and assistance with managing common symptoms such as fatigue, pain, mobility limitations, skin irritation,shortness of breath, and bowel and bladder problems. Referrals to healthcare services. Falls prevention strategies.Practical Obtaining equipment from Red Cross Loan Cupboard. Mobilizing assistance for transportation, meals, housekeeping,and assistance with ADLs.Psychological Support for concerns such as anxiety, depression, stress, and grief. Practical interventions to attenuate psychologicalconcerns (e.g., stress management strategies and art therapy). Referrals to family physician or mental health services.EOL Advance care planning including funeral arrangements, planning regarding place of death, representation agreements,palliative benefits, wills. Dignity therapy. Teaching on what to expect at end of life. Support during last days at home.Social Negotiating family challenges. Facilitating connections to supportive networks. Strategies to cope with social isolation.Providing resources when commuting outside of rural area for care.Loss and Grief Supporting through anticipatory grief and into the bereavement period. Practical strategies to cope with multiple losses.Attended funerals.aDomains were developed based upon A Model to Guide Hospice Care by the Canadian Hospice Palliative Care AssociationPesut et al. BMC Palliative Care  (2017) 16:37 Page 4 of 10Challenges getting quality data on the CSNS were ex-plained in the evaluation interviews. Family membersindicated confusion about whether they were filling itout correctly. For example, if they felt a need wasbetter addressed by someone other than the nursenavigator (e.g., spiritual needs), they were not certainhow to answer. One participant was reluctant to answerthe questions because they “forced her into things shedid not want to say.”Place of death and healthcare utilizationAll participants who indicated a preferred place of death(7/11) were able to die in that preferred place, 5 at homeand 2 in institutional settings. Emergency room usagefor participants was minimal (see Table 5). Of the 11 de-cedents, 4 recorded no use of the emergency room, and3 recorded one use. Importantly, only 6 of the 64 totalemergency room admissions could have been preventedby the nurse navigator if she had been contacted (e.g.,Fig. 1 Quality of Life Scores (x) for Older Adult Participants over Days on Service (y). Three participants did not complete MQOL scores. A = Aliveat study conclusion D = Deceased at study conclusion. Green line indicates a score that would be consider a “good day” and red line indicates ascore that would be considered a “bad day” [34]Pesut et al. BMC Palliative Care  (2017) 16:37 Page 5 of 10skin tears and constipation). Those participants whodied while on the service reported more physician visitsand hospitalizations than those who remained alive atstudy conclusion. Over the study period, these partici-pants were involved with 23 different physician special-ities and a total of 33 different healthcare related groups(e.g., physicians, physician specialties, allied healthpersonnel, and volunteers). An important role of thenurse navigator was to promote continuity for these par-ticipants and to assist them to make sense of the infor-mation that came from these many providers.Patient, family and stakeholder satisfactionEvaluation interviews were conducted with 9 olderadults who completed the study and 7 family members.Participants were highly satisfied. They described howthe nurse navigator provided support that enabled themto cope with the loss and anxiety that attends chronic ill-ness while navigating a healthcare system fraught withchallenges. Participants valued the person-centred ap-proach: adequate time to discuss their concerns, flexiblevisits in the home, practical action to assist (e.g., pickingup equipment), contact with a single credible individual,and an immediate response to a request for assistance.They contrasted this with system-oriented care where theywere required to fit into structured, hurried, and over-whelming environments. The personality of the nursenavigator, who was described as personal rather than clin-ical, was an important factor in the success. Participantsdescribed feeling uplifted after the visit – “like a breath offresh air.”Participants gave a number of reasons for why they feltthey needed a service of this nature including: social andphysical isolation; poor access to information; need foremotional support; family conflict; desire to die in theirpreferred place (either home or institution); and difficul-ties negotiating physician relationships, particularly whenmultiple physicians were involved across urban and ruralcontexts. Benefits of the service included assistance withpreparing for what was to come; negotiating family andhealthcare system conflict; providing information and as-sistance with decision-making; normalizing experiences;providing hope; attenuating the burden on family andfriends; identifying and obtaining available resources; andhaving a continuing presence of emotional support. Par-ticipants described two challenges with the service. Attimes they were reluctant to ask for assistance becausethey did not want to be a “burden”, but participants attrib-uted this to their own way of being rather than any per-ceptions related to the nurse navigator. Further, in thelatter stages of illness they experienced a loss of privacy asa result of the number of individuals visiting in the home.Evaluation interviews were conducted with the pro-gram advisory group (n = 6), clinical team (n = 3) and acommunity physician who had referred participants tothe service. Respondents were unanimous in the beliefthat the service filled an important role for this under-served population, citing similar benefits to those men-tioned by participants such as education, advocacy,instrumental assistance, support with decision-making,and the person-centred approach. They suggested thatthe success of the service was largely related to the cred-ibility of the nurse navigator who was known and trustedTable 4 Family need scores over two time pointsInformation supportneeds (max 172)Mean (SD)Tangible supportneeds (max 112)Mean (SD)Emotional supportneeds (max 112)Mean (SD)T1, All 59.29 (22.52) 23.57 (13.34) 26.75 (6.02)T2, All 58.14 (23.49) 22.29 (16.30) 27.86 (10.84)T1, Deceased 54.00 (35.37) 10.67 (1.15) 25.67 (9.50)T2, Deceased 77.67 (15.95) 19.67 (13.50) 26.33 (12.01)T1, Alive at study conclusion 63.25 (11.48) 33.25 (7.97) 27.56 (3.20)T2, Alive at study conclusion 43.50 (16.34) 24.25 (19.94) 29.00 (11.60)Comparative rural samplefrom another study [46]55.8 (25.4) 28.3 (18.3) 26.9 (12.9)Higher scores indicate more unmet needs. The maximum values represent worst possible scoresTime 1 (T1) and Time 2 (T2) are first and last usable scores. The length of time between T1 and T2 varied between participantsTable 5 Healthcare utilization over study periodEmergency roomvisitsTotal visits: n = 64 (37 visits accounted for by 3participants)Participants that used emergency room: n = 14Mean number of visits across participants: n = 2.67Mode of visits across participants: n = 0Range of visits across participants: n = 0–21Physician visits perperson per 30 daysCombined (n = 24): mean 1.81Deceased (n = 11): mean 2.53Alive at study conclusion (n = 13): mean 1.20Hospital length ofstay in days perperson per 30 daysCombined (n = 24): mean 1.20Deceased (n = 11): mean 2.08Decedents final 30 days (n = 11): mean 5.2Alive at study conclusion (n = 13): mean 0.45Data is reported on 24 of 25 participants. One participant had unreliablehealthcare utilization dataPesut et al. BMC Palliative Care  (2017) 16:37 Page 6 of 10in the community. In light of the multiple benefits, theyrecommended that the service be promoted broadlywithin the community and connections made to othercommunity-based services for older adults. A critique ofthe program was its lack of visibility within the largercommunity. The nurse navigator engaged in strategies topromote visibility, but once the pilot reached capacity, itwas difficult for her to continue this work while con-ducting clinical visits. Keeping physicians informedabout the service was challenging. Physicians receivedfaxes every 3 months about the progress of their patients;however, at least two physicians could not remember hav-ing seen any reports. The need for innovative ways tocommunicate more strategically with physicians was animportant finding.The lack of formal integration with healthcare serviceswas perceived as the most problematic aspect of this ser-vice. Health authority representatives who served on theAdvisory Committee were supportive of this person-centred approach for older adults, but were concernedabout the cost of the intervention and its potential over-lap with other healthcare services once participants wereactively dying and more in-home services were available.Overlap did not occur to any substantial degree in thisproject. With her longstanding work history in the com-munity, the nurse navigator was careful to respectboundaries between her role and that of the communitynurses. This was not difficult to do in this context, be-cause community nursing typically became involvedwhen specific tasks, such as wound care or pain manage-ment, were required. These tasks were not a substantivepart of the navigator’s role. However, it is likely that thenavigator’s surveillance and advocacy role enabled cli-ents to gain early and increased access to communitycare nursing and other relevant services. Overall, theservice was viewed as the “ideal” of care, but sustainabil-ity was a concern.DiscussionThe aim of this study was to pilot a nurse-led navigationservice to provide early palliative support for rural olderadults and family members living at home with advan-cing chronic illness. Research questions for this pilotwere aimed at evaluating feasibility, acceptability, andpreliminary outcomes. The service was feasible, accept-able, and effective in meeting the needs of this popula-tion. Preliminary outcomes indicated that healthcareutilization was minimal and appropriate, client satisfac-tion was high, the use of the MQOL was feasible andyielded stable client scores over time. The use of theCSNS was challenging for caregivers of this early pallia-tive population.Once recruited, older adults remained on the servicefor prolonged periods of time with no study attrition.Only 28 of the 553 in-person visits were cancelled overthe 2-year period. All participants who expressed a pre-ferred place of death were able to die in that preferredplace. Emergency room usage for this group of partici-pants was minimal, appropriate (i.e., conditions couldnot have been managed at home), and lower thanCanadian averages. A recent study examining the rela-tionship of home care nursing and emergency depart-ment usage in Ontario, Canada indicated that 85% ofdecedents had an emergency department visit in the last6 months of life [35]. Four of the 11 participants whodied while on our study had no emergency room usage,and a further three participants who died used it onlyonce. These findings are important because Canadian re-search comparing healthcare utilization between ruraland urban populations indicates that rural costs aregreater for emergency room usage [36, 37].Qualitative evaluation data indicated that older adultsand family members were highly satisfied with the ser-vice, citing specific benefits such as provision of infor-mation, psychosocial support, practical assistance, andassistance with decision-making. They particularly val-ued the person-centred nature of the service wherebysomeone whom they knew and trusted came into theirhome to assist at their discretion and on their schedule.The need for a service of this nature was supported byparticipants ‘longitudinal QOL scores. Similar to the find-ings of other studies with this population [12, 13, 15, 38],the burden of chronic illness had a significant effect onQOL. Many participants reported longitudinal health-related QOL scores that would match the descriptor of a“bad day,” and the most prevalent troubling symptomswere identical to those reported in other literature: pain,fatigue, sleep disturbance and gastrointestinal difficulties[34]. This early palliative population is coping with similarchallenges to those who are actively dying, but withoutthe important home supports that are available in ruralareas for those closer to death. Our findings further attestto the urgent need to close the gaps in care for this popu-lation. In future studies it would be important to adapt theservice to the needs of those living with dementia.However, the question arises of why the longitudinalQOL scores did not reflect the improvements in quality oflife that participants reported in the interviews. Failure toachieve increased QOL scores as a result of home-basedpalliative services have been reported elsewhere in the lit-erature [39]. Perhaps stabilization of scores was in itself apositive outcome in this population who are experiencingdeclining health. The increasing unmet need scores re-ported by the families of patients who died also suggest alevel of complexity for the families of those who are ex-periencing declining health. However, it is also possiblethat the service provided an intervention that may not bereflected on a multi-dimensional QOL instrument. ThisPesut et al. BMC Palliative Care  (2017) 16:37 Page 7 of 10explanation is supported by the interview data. Partici-pants reflected on how the presence of the nurse navigatorprovided support amidst challenges, which qualitativelychanged their perception of the challenges, but not thechallenges themselves. They still struggled with chronicillness – the healthcare system was still complex andchallenging. Using the quality of life instrument as apatient-reported outcome measure was important becauseit provided a structured means through which adultscould communicate their challenges. However, not allparticipants agreed that it was useful. In future it will beimportant to select evaluation measures that are sensitiveto how participants experienced this intervention.The many different types of healthcare providers in-volved with this sample of individuals over this 2-yearperiod support the importance of having a navigatorwho can enable older adults to understand options andnegotiate best-fit care. Her interventions crossed do-mains of care (e.g., physical to spiritual) and helped tobridge the silos of health and social care in the commu-nity. With broad knowledge of the resources available inthe community, and of the existing social connections, shewas able to mobilize support in an integrated way. An ap-proach that uses caring connections to facilitate access tocommunity supports has strong evidentiary support[17, 18] and the individualized nature of the interventionillustrates best practices for this population [9, 40],particularly as it pertains to end-of life communication[41]. The nurse navigator ‘s long history of working as anurse within this community, and participant’s relationalcontinuity with one nurse, were important factors inimplementation.In summary, evaluation of the service was positive anddata collected illustrate the potential of a navigator tobetter meet the needs of this growing population. Fur-ther research is required to address issues of sustainabil-ity and potential applicability of the role for urbancontexts. Sustainability issues are related to better inte-gration with formal healthcare services and to the costof the service. In a previous publication, we describedhow this service was planned as part of a community-based intervention that was guided by key stakeholdersfrom municipal government, healthcare leaders, and pa-tients and families, with the intent that the service wouldbe sustained and well integrated into the community[25]. This goal was not realized, perhaps in part, becausethere was significant turnover in leaders in the health-care region during this time, and it was difficult toproduce a cost/benefit analysis within a single pilot site.However, sustainability of the project was achievedthrough additional research funding in which we piloted anavigation model that was developed around volunteer/healthcare provider partnerships [42]. Clients who finishedthe study described in this paper had the option of re-enrolling on the new service. In the new service they re-ceived visits every 2 weeks by a volunteer, who receivedadditional training in navigation, and visits every 3 monthsby the nurse navigator. The nurse navigator role changedfrom providing direct care to providing oversight andmentorship to volunteers. Whether implemented inde-pendently, or partnered with volunteers, a nurse-led navi-gation service can meet the unique needs of ruralcommunities by enhancing support and access in the faceof limited healthcare resources.Although formal integration was not achieved in thisstudy, it would not be difficult to do so. As this is anearly palliative population, the most logical connection isto the primary care system. At this early stage, manyadults are not yet being seen by home nursing services.Therefore, family physicians, particularly those who workwithin integrated care networks that include nurses,would be the most appropriate connection for integration.This would support physicians’ capacities to provide betterhome-based care and facilitate an early palliative approachto care without the requirement of a formal palliative des-ignation and its attending stigma [43].The cost of the service may also be a significant sustain-ability issue for constrained healthcare budgets. Basedupon a biweekly visit schedule, a nurse navigator can sup-port between 25 and 30 clients. In future, we recommendflexible visit schedules of 1–4 weeks, depending upon cli-ent acuity, and nurse navigator caseloads of 40 clients.This would extend the capacity of the service beyond whatwas obtainable in this pilot. Further, in light of the limiteduse of the 24/7 call line during this pilot, we recommendfinding more cost effective ways of providing this out ofhours service. Preliminary findings from this pilot suggestthat a nurse navigator may reduce other healthcareutilization costs; however, this needs to be tested morerigorously in future research. It is feasible that a nursenavigator, through advanced care planning and activemanagement at home, can reduce emergency room usage,hospital admissions, and primary care physician visits.Similarly, an important role for the nurse navigator ishelping clients to identify available benefits and cost-effective alternatives to care, therefore, cost savings to cli-ents and families should be considered as well.When considering scaling up and adapting this serviceto other contexts, there are important factors to con-sider. Implementation in rural contexts should follow asimilar community-based approach, which draws uponexisting palliative champions who are well known in thecommunity, to maximize the potential for sustainabilityand effectiveness [44, 45]. Although this service was de-signed to meet the unique needs of rural communities,the nurse navigator role could be adapted to urban con-texts. The relatively resource-rich nature of urban com-munities may mean that the navigator focuses more onPesut et al. BMC Palliative Care  (2017) 16:37 Page 8 of 10integrating services than on solving the challenges oflimited services. Further, when the navigator is not aperson known within the community, older adults maybe less willing to have someone come into their home.This would require careful consideration of how to bestrecruit older adults onto the service.ConclusionUsing a nurse navigator to facilitate a palliative ap-proach to care for rural older adults living with advancedchronic illness is a promising innovation for meeting theneeds of this population. The person-centred approach,whereby complex problems were addressed in an indi-vidualized and incremental manner, is typical of bestpractices for this population. The service provided con-tinuity for patients and families who were seeing mul-tiple healthcare providers and resulted in a high degreeof satisfaction from participants. Further research needsto be done to determine how to integrate the model intocurrently existing services to enhance sustainability andto evaluate outcomes on a broader scale.AbbreviationsMQOL: McGill Quality of life questionnaire; QOL: Quality of lifeAcknowledgementsThe authors would like to thank the Advisory Committee and Drs J. Bottorff,C. Robinson and R. Sawatzky for their intellectual contributions to this projectand to the research participants who shared their journeys.FundingFunding for this study was provided by the Peter Wall Institute for AdvancedStudies at the University of British Columbia [PW-11-020] and the VancouverFoundation [UNR-12-0950].Pesut is supported by a Canada Research Chair. Funding sources had no role instudy design, data collection and analysis, or writing the manuscript.Availability of data and materialsData that supports the writing of this manuscript, and the findings of this researchstudy, are not publicly available due to concerns of risking the confidentiality andanonymity of research participants.Authors‘ contributionsBP conducted the research and wrote the manuscript. BH, MJ, BN assistedwith service implementation, provided feedback on the manuscript draft. MFand BO collected and analyzed research data, provided feedback on themanuscript draft. All authors read and approved the final manuscript.Competing interestsBH, MJ, BN, and MF received financial remuneration from grant funds for servicesrendered in the conduct of the project. The authors declare that there are noother competing interests.Consent for publicationNot applicable.Ethics approval and consent to participateEthical approval was granted by the University of British Columbia OkanaganBehavioural Research Ethics Board and the Interior Health Research Ethics Board(reference: H12–00786). All participants provided written informed consent toparticipate in the research study.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims in publishedmaps and institutional affiliations.Author details1School of Nursing, University of British Columbia, Okanagan, 1147 ResearchRoad, Kelowna, BC V1V 1V7, Canada. 2Greater Trail Hospice Society, 1500Columbia Ave, Suite 7, Rossland, BC V1R 1J9, Canada. 3Quesnel Primary CareClinic, Quesnel, BC, Canada. 4School of Nursing, University of BritishColumbia, Okanagan, 1147 Research Road, Kelowna, BC V1V 1V7, Canada.5Department of Psychology, University of British Columbia, Okanagan, 1147Research Road, Kelowna, BC V1V 1V7, Canada.Received: 7 February 2017 Accepted: 23 May 2017References1. Albrecht H, Comartin J, Valeriote F, Block K, Scarpaleggia F. 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