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Conceptual foundations of a palliative approach: a knowledge synthesis Sawatzky, Richard; Porterfield, Pat; Lee, Joyce; Dixon, Duncan; Lounsbury, Kathleen; Pesut, Barbara; Roberts, Della; Tayler, Carolyn; Voth, James; Stajduhar, Kelli Jan 15, 2016

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RESEARCH ARTICLE Open AccessConceptual foundations of a palliativeapproach: a knowledge synthesisRichard Sawatzky1*, Pat Porterfield2, Joyce Lee1, Duncan Dixon1, Kathleen Lounsbury1, Barbara Pesut3, Della Roberts4,Carolyn Tayler5, James Voth6 and Kelli Stajduhar7AbstractBackground: Much of what we understand about the design of healthcare systems to support care of the dyingcomes from our experiences with providing palliative care for dying cancer patients. It is increasingly recognizedthat in addition to cancer, high quality end of life care should be an integral part of care that is provided for thosewith other advancing chronic life-limiting conditions. A “palliative approach” has been articulated as one way ofconceptualizing this care. However, there is a lack of conceptual clarity regarding the essential characteristics of apalliative approach to care. The goal of this research was to delineate the key characteristics of a palliative approachfound in the empiric literature in order to establish conceptual clarity.Methods: We conducted a knowledge synthesis of empirical peer-reviewed literature. Search terms pertaining to“palliative care” and “chronic life-limiting conditions” were identified. A comprehensive database search of 11research databases for the intersection of these terms yielded 190,204 documents. A subsequent computer-assistedapproach using statistical predictive classification methods was used to identify relevant documents, resulting in afinal yield of 91 studies. Narrative synthesis methods and thematic analysis were used to then identify andconceptualize key characteristics of a palliative approach.Results: The following three overarching themes were conceptualized to delineate a palliative approach: (1) upstreamorientation towards the needs of people who have life-limiting conditions and their families, (2) adaptation of palliativecare knowledge and expertise, (3) operationalization of a palliative approach through integration into systems andmodels of care that do not specialize in palliative care.Conclusion: Our findings provide much needed conceptual clarity regarding a palliative approach. Such clarity is offundamental importance for the development of healthcare systems that facilitate the integration of a palliativeapproach in the care of people who have chronic life-limiting conditions.Keywords: Palliative approach, Palliative care, Life-limiting illness, Knowledge synthesisBackgroundAs life expectancy increases, more people are living intoold age and dying from serious chronic conditions ratherthan acute illnesses [1]. Planning care for these andother individuals who are facing life-limiting conditionsis vital to a well-managed and person-focused healthcaredelivery system. High quality care at the end of life hasprimarily focused on cancer patients and been deliveredby specialist palliative care teams [2]. As such, much ofwhat we understand about the design of healthcaresystems to support care of the dying comes from ourexperiences with caring for dying cancer patients [3, 4].It is increasingly recognized, however, that in addition tocancer, high quality end of life care should be an integralpart of care that is provided for those with other chronicconditions (e.g., heart failure, chronic obstructivepulmonary disease, neurological diseases, renal disease,and dementias) [2, 5–13] and who are being cared for ina variety of settings (e.g., acute care, home care, andresidential care) [14–19]. Healthcare managers, policymakers, clinical leaders, and educators are thus facedwith questions about how to develop healthcare systems,* Correspondence: Rick.Sawatzky@twu.ca1School of Nursing, Trinity Western University, 7600 Glover Road, Langley, BCV2Y 1Y1, CanadaFull list of author information is available at the end of the article© 2016 Sawatzky et al. 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.Sawatzky et al. BMC Palliative Care  (2016) 15:5 DOI 10.1186/s12904-016-0076-9practice models, and education strategies to best servethis population of people who have advancing chroniclife-limiting conditions and their family members.In 2003, Kristjanson and colleagues articulated a need tounderstand the potential contribution of palliative care inconditions other than cancer [20]. They articulated a“palliative approach” as one way of conceptualizing carefor those with advancing chronic illnesses who may notrequire specialized palliative care services and who wouldbenefit from having their end of life care concerns identi-fied much earlier in the illness trajectory [3, 17, 20]. Aspart of their cancer control strategy, the World HealthOrganization (WHO) similarly defined palliative care asan approach that is applicable early on in illness trajector-ies [21]. The Worldwide Palliative Care Alliance (2014)affirmed and adapted the WHO definition emphasizingthat palliative care be adopted by all, not just by profes-sionals specializing in palliative care [22].Others have written about the need to extend palliativecare to the care of people with advancing chronic life-limiting conditions, suggesting the need for “early pallia-tive care” [23, 24], “geriatric palliative care” [16, 25],“dementia proofing end of life care” [8], among others.Health services initiatives focusing on a broader imple-mentation of palliative care principles included the Aus-tralian Palliative Residential Aged Care (APRAC) Projectand the Program of Experience in the Palliative Approachfunded by the Australian Government [26] as well as theGold Standards Framework [27] that was initially devel-oped to enhance primary palliative care in the UnitedKingdom. Such initiatives provided an important impetusfor research on a palliative approach and have contributedto the development of tools and guidelines for improvedend of life care (e.g., Guidelines for a Palliative Approachin Residential Aged Care [28]) that would better guideclinician education and care provision. Indeed, in the lastdecade there has been a proliferation of research focusedon the palliative care needs of people with advancingchronic and life-limiting conditions [29–33]. Inasmuch asan articulation of the need for a broader approach hasbeen expressed and evidence suggests that such an ap-proach may have positive outcomes for people who are ona progressive life-limiting trajectory [23, 34], there is a lackof conceptual clarity regarding the essential characteristicsof what a palliative approach entails.As part of a program of research to address how andin which contexts a palliative approach can better meetthe needs of people with chronic life-limiting conditionsand their family members, the iPANEL team (Initiativefor a Palliative Approach in Nursing: Evidence and Lead-ership – www.ipanel.ca [35]) is pursuing several primaryresearch and integrated knowledge translation activitiesthat address research questions relevant to a palliativeapproach [4, 36]. A core focus of our applied healthservices research program involves an overarchingknowledge synthesis regarding healthcare systems policy,education, and practice initiatives for a palliative ap-proach. In this paper we report on one aspect of thisknowledge synthesis focusing specifically on delineatingkey characteristics of a palliative approach that are foundin the empiric literature in order to establish conceptualclarity. Our goal is to provide guidance to healthcareprofessionals wishing to integrate a palliative approachinto their practice, health systems managers and decisionmakers interested in integrating a palliative approachinto their care delivery models, and researchers needingto articulate core conceptual features of a palliativeapproach to guide their studies.MethodsWe conducted a comprehensive mixed-methods know-ledge synthesis of empirical peer-reviewed literature,including quantitative and qualitative research andreviews. Established knowledge synthesis procedureswere implemented to search for relevant sources, extractrelevant information from each source, and conduct asynthesis [37–40].Search and selection of articlesThe search strategy was designed to identify articles ofpotential relevance to a palliative approach, even thoughthe term “palliative approach” may not have been used.In other words, we sought to identify those articles thataddress the integration of hospice, palliative, or end oflife care principles and practices for people with chroniclife-limiting conditions. Accordingly, the followingsearch terms were delineated to focus on the intersec-tion of the following two domains: (a) concepts associ-ated with palliative care (including hospice care, comfortcare, end of life care, etc.) and (b) concepts reflective ofchronic life-limiting conditions (including a selection ofthe most common chronic conditions) (see Fig. 1). Searchterms for each domain were identified based on a prelim-inary scoping search and in consultation with the iPANELteam and other expert researchers and clinicians.Reed and Baxter’s [41] recommendations for searchingreference databases were followed. Separate search strat-egies were designed by combining keywords and applic-able subject headings (where a thesaurus was available)for each of the following databases: Ageline, BiomedicalReference Collection: Comprehensive, CINAHL, CochraneDatabase of Systematic Reviews, Embase, HealthsourceNursing/Academic, Medline, ProQuest Dissertations &Theses, PsycINFO, and Web of Science. The searches werelimited to English language articles published betweenJanuary 1 1990 and December 31 2011. The searchresults were subsequently imported into a database andSawatzky et al. BMC Palliative Care  (2016) 15:5 Page 2 of 14duplicates were removed. The final combined searchesyielded 190,204 citations.Because a palliative approach is often not explicitlymentioned or referred to in a consistent way, it wasimpossible to further delineate the search without inad-vertently excluding potentially relevant documents. Wetherefore designed and implemented a computer-assistedapproach using a statistical predictive classificationmethod [42–45] to probabilistically identify citations thatare likely to be relevant. Terminology (in this case, words)was extracted from a “computer training set” of citationsthat were manually screened and classified as either beingrelevant or not relevant, and was then used to progres-sively refine the predictive classification model (see Fig. 2).If an unclassified citation contained similar terminology tothose manually classified as relevant in the training sets,then it was considered more likely to also be relevant.Conversely, if an unclassified citation contained similarterminology to those citations that were manually classi-fied as irrelevant, then it was considered more likely tonot be relevant.To begin, a random selection of 5,000 citations(“screening set 1”) was drawn from the complete searchresult set and was manually screened; this created thefirst computer training set. The predictive classificationmodel was generated using this training set and used toidentify another set of 1,000 citations that were likely tobe relevant (“screening set 2”) from the complete searchresult set. These citations were subsequently manuallyscreened and added to the training set to refine the pre-dictive classification model. The model was reapplied toidentify another set of 1,000 citations (“screening set 3”),which was then manually screened. In addition to thearticles identified through predictive classification, 198articles that included the term “palliative approach” inthe title or abstract (“screening set 4”), and 243 articlesrecommended as being relevant to a palliative approachby the iPANEL team members and experts in the field(“screening set 5”), were manually screened. Throughthis process, a total of 338 relevant documents (includ-ing both research and non-research based articles) wereidentified. Of these, 91 articles reported on primaryresearch and literature reviews.The following inclusion criterion was used to identifyrelevant documents: the document must be clearly aboutor focused on a palliative approach, defined as the inte-gration of palliative care principles into healthcare set-tings by professionals who do not specialize in palliativecare, even though the term “palliative approach” maynot be explicitly mentioned. Documents that focusedpredominantly on specialized palliative care (provided byspecialized palliative care professionals) or on the man-agement of one particular symptom (rather than overallcare of a person who has a life-limiting condition) wereexcluded. In addition, only articles reporting on primaryresearch and literature reviews were included. Aconsensus-based approach was used to double-screenthe articles. Articles that were inconsistently classified bydifferent screeners as both relevant and not-relevantwere reviewed by two additional team members toestablish consensus. The Evidence for Policy and Prac-tice Information and Co-ordinating Centre Reviewersoftware (EPPI-Reviewers version 4.1) [46] was used tocombine all documents into a common database andextract relevant information using a data extractioncodebook designed for this review.Analysis methodsWe used narrative synthesis methods and thematic ana-lysis to identify and conceptualize essential characteris-tics of a palliative approach [37–40]. A data extractionform was developed and applied in EPPI-Reviewer toinitially classify articles in terms of their focus onparticular disease populations, healthcare sectors, and aFig. 1 Identifying a palliative approach in the literatureSawatzky et al. BMC Palliative Care  (2016) 15:5 Page 3 of 14range of study characteristics (e.g., study design, studymethods, sample characteristics). We subsequently com-pared the patient populations and the nature of the careprovided across different conditions and contexts ofhealthcare delivery. Following general guidelines to narra-tive synthesis described by Pope and Popay [40], thematicanalysis was applied by first extracting and organizing ver-batim quotes and paraphrased text pertaining to apalliative approach into categories that represent commoncharacteristics of a palliative approach. Higher levelabstract themes were iteratively inferred by comparingand contrasting similarities and differences across categor-ies and classifications as the basis for arriving at aconceptualization of key characteristics of a palliativeapproach that applies across disease groupings andcontexts of care.Fig. 2 Literature search and selection strategySawatzky et al. BMC Palliative Care  (2016) 15:5 Page 4 of 14LimitationsAlthough our search and analysis methods were com-prehensive, there are several limitations that need to betaken into account when considering the findings. First,considering the scope of literature relevant to our topic,it was not feasible to conduct a synthesis of all relevantliterature. We therefore used a probabilistic computer-assisted approach to identify studies that were likely tobe relevant. In addition, our analysis was limited to re-search articles. Nonetheless, we have found that our syn-thesis findings are consistent with studies and othersources that were not identified through this process [6,7, 12, 47–49], and are therefore confident that inclusionof these additional sources would not substantiallychange the conceptualization of a palliative approachthat arose from our synthesis. Second, the method ofanalysis is inherently interpretive in nature. Well-established qualitative knowledge synthesis methodswere followed to reach a higher level of abstraction thanwhat was explicitly stated in any individual article. Third,it is important to keep in mind that only articles writtenin English were considered. Consequently, studiesarising from non-English speaking countries will beunderrepresented.Results and discussionA description of the articles included in the analysis is pre-sented in Tables 1 and 2. The included quantitative andqualitative studies are predominantly based on study pop-ulations from the US and UK; nine studies are fromCanada (Table 1). The studies cover a range of healthconditions and healthcare sectors (Table 2). Most of thestudies address multiple chronic conditions (32 %),followed by cancer (14 %), and dementia (10 %) and focuson hospital, residential, and home/community sectors.A palliative approach to careA palliative approach builds on many of the key princi-ples foundational to specialized palliative care services.Like specialized palliative care, a palliative approach em-phasizes patient- and family-centered care that focuseson the person and not just the disease, where quality oflife is seen as the primary goal [5, 6, 17, e.g. 50].Literature on a palliative approach highlights the import-ance of therapeutic relationships between providers andthe patient and family with an emphasis on buildingpartnerships to enhance care quality [9, 51]. Clear com-munication throughout the illness trajectory is stressedin the literature as significant, particularly in relation toconversations about advance care plans, goals of care,“breaking bad news”, and shifts in the management ofthe disease process or the plan of care. A palliativeapproach is based on the foundations of palliative carein its emphasis on careful assessment and managementof disease-associated symptoms and on the importanceof compassionate and skilled care for patients who areimminently dying.Findings from our narrative synthesis and thematicanalysis suggest that there are key distinctions to bemade between a palliative approach and the way inwhich specialized palliative care has conventionally beenenacted as a healthcare service. Although the notion of apalliative approach has been represented and taken upin different ways, there is an emerging understandingthat, broadly conceptualized, a palliative approach in-volves adopting the foundational principles of palliativecare, adapting the palliative care knowledge and expert-ise to the illness trajectories of people with chronic life-limiting conditions, and embedding this adapted know-ledge and expertise “upstream” into the delivery of careacross different healthcare sectors and professions.Consistent with this conceptualization, our synthesis ofthe literature resulted in three themes that representessential characteristics of a palliative approach: (a) anupstream orientation to care, (b) adaptation of palliativecare knowledge and expertise, and (c) operationaliza-tion of a palliative approach through integration andcontextualization within healthcare systems. Thesethemes are further discussed below and are illustratedby examples of citations and quotes in Table 3.Theme 1: upstream orientation to careA key characteristic of a palliative approach is an up-stream orientation that ensures that the needs of patientsand families are addressed early on and throughout theillness trajectory of people who have chronic life-limitingconditions. The importance of recognizing the life-limiting nature of many chronic conditions that will ultim-ately lead to death, and the need to consider principles ofpalliative care early on in the illness trajectory, even assoon as the time of diagnosis, has been noted in severalstudies as well as in an expert review [2, 15, 23, 52].Although this upstream orientation applies to manypotential chronic life-limiting conditions, it has thus farbeen predominantly articulated in contexts of care forpeople who have chronic obstructive pulmonarydisease (COPD), congestive heart failure (CHF), renalTable 1 Description of relevant studies (n = 91)Study type No. Study method No. Country No.Published/Presentedpaper88 Quantitative 33 Australia 9Thesis/Dissertation 3 Qualitative 33 Canada 9Mixed methods 16 UK 28Knowledge synthesis 9 US 35Othera 10aChina (1), Germany (2) Global (2), Israel (1), Italy (1), Netherlands (2), Sweden (1)Sawatzky et al. BMC Palliative Care  (2016) 15:5 Page 5 of 14disease, neurological diseases (in particular dementiasand amyotrophic lateral sclerosis), and general frailty[2, 9, 10, 16, 53–56]. Across domains of chronicdisease literature, experts consistently identify twoconditions required of care providers to achieve anupstream orientation: (1) recognition and understand-ing of different chronic illness trajectories, and (2)identification of where people are on those trajector-ies (see citations and quotes in Table 3). People onthose trajectories require care that is oriented by theknowledge that their illness is life-limiting.Lynn’s [49] characterization of chronic life-limiting ill-ness trajectories is widely referenced. Three dominanttrajectories of functional decline and wellbeing aredescribed: (1) the “cancer” trajectory, characterized by along period of relatively good function with a suddendecline leading to death; (2) the “organ system failure”trajectory that involves an ongoing gradual decline withperiods of severe exacerbation with death often comingrather suddenly (e.g., COPD, CHF, and kidney diseases);and (3) the “dementia/frailty” trajectory associated witha prolonged decline, relatively low function, and slow de-terioration. Palliative care has predominantly been devel-oped in relation to the first trajectory, which, originally,was primarily applicable to people with cancer who nolonger receive curative treatments. Within the cancer ill-ness trajectory, palliation has been considered a distinctand relatively predictable phase occurring near the endof life. It should be noted, however, that cancer trajector-ies themselves are changing and that certain forms ofcancer now follow trajectories that are similar to thoseof other chronic conditions [57].Although there are some illnesses with a relatively pre-dictable end-stage, it is increasingly recognized that thecancer trajectory is not representative of the course ofmany chronic life-limiting conditions. The above secondand third trajectories described by Lynn [49] are distin-guished from the cancer trajectory in that they have anelement of uncertainty regarding illness progression andestimation of when death will occur. The studies in oursynthesis consistently emphasize that the uncertainty as-sociated with these trajectories and the correspondingchallenge of prognostication necessitates an upstreamorientation to emerging end of life care needs (see cita-tions and quotes in Table 3). In addition, attending tothe progressive nature of the illness, while at the sametime recognizing that these people may live for a longperiod of time, requires concurrent chronic disease man-agement. Thus, a palliative approach is achieved throughthe blending of palliative care and chronic disease man-agement with a focus on quality of life as the primarygoal [9].Significant advances have been made in finding waysto identify people who are on advancing illness trajector-ies and in need of a palliative approach [54] as people onthese chronic illness trajectories were formerly consid-ered in need of end of life care only during the lastweeks and days of life. An upstream orientation to carefacilitates proactive care planning [15], advance careplanning [2, 19, 51], goals of care conversations [57],and the ability for patients and family members to bepart of decision making regarding their care [2, 9]. Iden-tification criteria and tools have been developed to revealpatient needs that arise along the chronic illness trajec-tories and to identify people at high risk of dying. Anexample includes the widely-cited prognostic indicatorsof the UK Gold Standards Framework (GSF) [58], whichconsists of three identifying triggers: (1) the “surpriseTable 2 Classification of relevant studies by health conditions and healthcare sectors (n = 91)# Articles by healthcare sectoraHealth conditions # Articles Hospital Residential Home and community OtherbMultiple chronic diseases 29 8 8 10 4Cancer 13 6 2 6 3Dementia 9 1 8 2 1COPD 4 1 0 2 1Neurological diseases 4 2 1 1 2AIDs 2 0 0 1 1Renal disease 2 2 0 1 0Frail elderly 4 0 2 2 0Congestive heart failure 2 1 0 1 0Other 1 0 1 0 0Not specified 21 12 5 3 4Total 91 33 27 29 16aCoding is not mutually exclusive as some studies addressed multiple healthcare sectorsbhospice care (3 studies), unclear/unspecified (10 studies), education (3 studies)Sawatzky et al. BMC Palliative Care  (2016) 15:5 Page 6 of 14Table 3 Thematic representation of key characteristics of a palliative approachThematic categories with citations Illustrative quotationsTheme 1: Upstream orientation to careRecognition of diverse illness trajectories [2, 8–10, 13, 15, 16, 19, 23, 25,30, 34, 51–57, 59, 61–63, 65, 67–98]“Neurological diseases present and progress with great clinical variation.In contrast to patients in many other areas in medicine, neurologicalpatients frequently live many years while developing cumulative physicaland cognitive disabilities. As a result, patients living with neurologicaldisease cope with decreasing quality of life before reaching the terminalstage of their illness” [2].“The illness trajectory of patients dying with chronic kidney disease differsfrom that of patients with cancer. There are also unique end of life issues,such as the withdrawal of dialysis, that are specific to these patients. Theexistence of different pathways to death has important implications forhealth care delivery; end of life issues that are important to chronickidney disease patients may differ from patients dying from otherillnesses” [10].Importance of identifying where people are on their illness trajectory[2, 8–10, 13, 15, 16, 19, 23, 25, 30, 34, 51–57, 59–61, 63, 64, 67–71, 74–79, 81, 82, 84, 85, 87–91, 93, 94, 96–103]“Communication of prognosis and discussions related to planning forfuture death are lacking in the routine care of CKD patients…. Answeringyes to a simple question “Would you be surprised if this patient died withthe next year?” should also prompt the nephrology team to initiate thesediscussions” [10].The challenge of prognostication [2, 9, 10, 13, 16, 23, 34, 51–57, 59, 60,63, 65, 67, 68, 70, 72, 75–78, 84–87, 90, 92, 95, 97, 101, 102, 104–110]“…determining the trajectory of an individual’s illness is an inaccuratescience, thereby making lane changes difficult…While nurses in the studyexperienced physicians as “waffling” when they were not specific aboutprognostication, the literature suggests that, because of the unreliabilityof prognostic judgements, physicians may opt to provide a range ofsurvival estimates. What makes prognostication even more difficult withinthe context of acute medical units is the range of patients that are caredfor and the manner in which their symptoms present” [102].Theme 2: Adaptation of palliative care knowledge and expertiseAdaptation throughout all aspects of the care process, including:a) individualized assessment of care needs [2, 8–10, 13, 16, 19, 23, 25,27, 30, 34, 51–57, 59–65, 67–73, 75–81, 83–85, 87–101, 103, 104,106–108, 110–121]“If end of life care does not take into account the unique circumstancesand needs of people with dementia, it is likely to fail them” [8].“Medical visits should begin with an assessment of the patient’sagenda and issues, including immediate concerns and threats toquality of life” [92].b) symptom management [2, 8–10, 13, 16, 19, 23, 25, 27, 34, 51–57, 59,61–63, 67–70, 72–74, 77–82, 85–88, 90, 91, 93, 94, 96–99, 101, 103,105, 106, 108, 110, 112–116, 118, 120–126]“Effective symptom management may require multiple therapeuticcomponents (pharmacological and nonpharmacological) or involvementof multiple disciplines. This approach is a foundation of geriatrics and isbased on the demonstrated effectiveness of programs of care thatprovide assessment and targeted remediation of multiple factors inpreventing falls and delirium” [8].c) communication and care planning (goals of care, advance careplanning, anticipatory care planning) [8–10, 13, 16, 19, 23, 25, 27, 30,34, 51–57, 59–63, 65, 67–105, 107, 109–120, 122, 123, 125, 127]“Checking the patient’s and family members’ understanding and goalsshould be an ongoing process during the course of the disease and willfacilitate the process of advance care planning” [51].“Important factors that determine when the patient and family are readyto discuss end of life issues include coping skills, depression and anxiety,cultural issues, use of functional assistive devices, and physiologic status,among others” [13].Patient, family, and caregivers as partners in care [8–10, 13, 16, 19, 25,30, 34, 51–57, 59–65, 67–70, 72–82, 84–87, 89–95, 97, 98, 100, 102,104–108, 111–116, 118–123, 126, 128]“Symptom self-management support involves helping patients and theirfamilies acquire the skills and confidence to manage their illness. Educationand support can also help patients and families weather the variable,day-to-day […] nature of common symptoms and their effect on ADLs aswell as to prepare for an emergency” [16].“To minimize hospitalizations, she is willing to participate in the distance-monitoring program offered by the local home health agency. The nursewill monitor daily weights, blood pressure, and pulse, and communicatechanges to the NP so the medication regimen can be promptlyadjusted. The agency also provides case management. In this way,Mrs. C’s complex needs can be continuously assessed and promptlyaddressed. The NP also offers a referral to a licensed clinical socialworker who can provide support and counseling to her and herfamily” [54].Sawatzky et al. BMC Palliative Care  (2016) 15:5 Page 7 of 14question” (“would you be surprised if the patient were todie in the next few months, weeks, days”); (2) general in-dicators of decline; and (3) specific clinical indicators forparticular conditions (e.g., cancer, COPD, heart diseases,renal diseases, neurological conditions, stroke, dementia,frailty). An important dimension of identification is thatit is an ongoing process of identifying end of life careneeds as they emerge throughout the illness trajectories.Theme 2: adaptation of palliative care knowledge andexpertiseAlthough a palliative approach builds on the knowledgeand expertise of palliative care, it is also apparent that itneeds to be adapted to the particular care needs of peoplewith chronic life-limiting conditions. A palliative approachis not simply applying knowledge and expertise from pallia-tive care to practice; it requires adaptation to different pa-tient populations and their unique disease profiles [2]. Thisis particularly important because of the uncertainty relatedto prognosis and the course of illness for people who havelife-limiting chronic conditions. Unlike some cancer illnesstrajectories where time until death is relatively predictable,chronic conditions are marked by exacerbations of the dis-ease and periods of stability. The individualized assessmentof care needs and the corresponding treatment decisionsmust therefore be based on the recognition that death isinevitable but may take a long time to occur. This has par-ticular implications for knowledge and expertise regardingsymptom management, communication, and partnershipswith patients and families, as is illustrated in Table 3.Table 3 Thematic representation of key characteristics of a palliative approach (Continued)“This project aims to develop a model of integrated care involvingpartnership between older adults, their carers, and health professionalsthough a system of mentorship and information technology (IT)provision. The intent is to assist older people with chronic respiratoryconditions to enjoy enhanced self-efficacy and quality of life byinteractions with a community nurse mentor, coupled with the use of atechnology-supported system of self-management” [9].Theme 3: Operationalization of a palliative approach through integration and contextualization within healthcare systemsModels/systems of care for a palliative approach:a) “early” palliative care [23, 52, 57]“A palliative approach, also referred to as simultaneous care, acknowledgesthe likelihood of gradual transition, emphasizing quality of lifeconsiderations during the active treatment phase. It recognizes thattreatment goals will evolve from seeking a cure, to control of disease andcomplications, maintaining physical functioning and quality of life, andultimately to symptom control …. Early introduction of the palliative carehealth professionals as part of the multi-disciplinary treatment team canfacilitate the transition from curative to palliative treatment. It is importantthat the palliative care professionals are seen as an integral part of thetreatment team, which will enhance the sense of continuity of care andallay any fears of abandonment” [57].b) integration into generalist practice [15, 19, 27, 34, 61–64, 78, 83, 85,88, 89, 92, 94, 99–101, 103, 107, 115, 117–119, 126, 129]“For nurses, the GSF appeared to provide structure, authority andpermission to arrange both formal meetings with general practitionersand informal communication opportunities that facilitated theachievement of professional and patient care objectives… Systems weredescribed to discuss patients within the primary health care team toensure that people were aware of patients and that they were referred atan ‘appropriate’ time” [103].c) disease/condition-specific models for care delivery [2, 8–10, 13, 16,51, 53, 55, 56, 59, 65, 68, 91, 93, 96, 97, 111]“The study’s primary finding was that there is a need to ‘dementia proof ’end of life care for people with dementia. If end of life care does not takeinto account the unique circumstances and needs of people withdementia, it is likely to fail them. This requires service providers and careprofessionals to ensure that the environments in which people live anddie – be they at home, in a care home, in NHS continuing care or in ageneral hospital – do three things: use knowledge of dementia to identifyand respond to physical care needs; go beyond task focused care; andprioritise planning and communication with the family” [8].“Patients with heart failure need comprehensive palliation, regardlessof disease stage or need for aggressive therapy. Collaborative,interdisciplinary care provided by the joint teams have benefited patients,families and staff by attending to symptoms, establishing goals of care,and planning for life outside the hospital” [96].“It seems equally evident that the respiratory community has much tolearn from the palliative care community about the breadth of serviceprovision required. We suggest that only by working together andeducating each other can we provide the expertise to respond to theabove issues and support patients/carers across the respiratory–palliativecare spectrum” [53].Sawatzky et al. BMC Palliative Care  (2016) 15:5 Page 8 of 14While the preponderance of palliative care knowledgeon symptom management is based on populations ofpeople with cancer at end of life, other illnesses alsohave high symptom burden. Studies of patients withCOPD, for instance, reveal variability in how symptomssuch as breathlessness and dyspnea are treated becausetreatment approaches may differ depending on survivalpredictions [53]. Adaptations of palliative care know-ledge about symptom management are also requiredbecause of differences in the pathophysiology of chronicconditions. For example, although patients with advancedrenal disease have pain control needs, conventionalapproaches to pain management in cancer, consisting ofhigh dose opioids, will need to be adapted for renalpatients to avoid accumulation of toxic metabolites [59].In addition to the need for adaptations in symptommanagement, studies suggest that adaptations to theways in which we communicate with patients and familymembers also are required because of the uncertainty ofthe illness trajectory. Although the possibility of death isgenerally recognized in the care of cancer patients,patients with chronic life-limiting conditions are some-times not aware of the extent of their disease or eventhat their illness is progressive and life-limiting [10].Conversations related to care planning that are moretypically associated with specialized palliative care (e.g.,goals of care, advance care planning, anticipatory careplanning, see Table 3) may require adaptations that aresensitive to the needs of those patients who have not yetidentified themselves as a person with an illness that willeventually lead to death. Studies with chronically illpeople and their care providers demonstrate that someview palliative care as giving up on treatment, whichdispels hope [10, 57, 60]. As such, adaptations in com-munication strategies and the timing of conversationsabout sensitive subjects, such as end of life closure, areneeded. The trajectory of heart failure is one example.Characterized by repeated near death exacerbations ofillness that are treated with combinations of pharmaco-logical and device therapy, heart failure patients experi-ence living in between hope for continued quality of lifeand the possibility of imminent death due to cardiacarrest. As such, communication strategies require adap-tation to guide providers in talking with patients andfamilies who are living in between the hope of remissionof symptoms and the possibility that the patient mightdie [54].The literature describing a palliative approach alsodraws heavily on the fundamental principle of partner-ship in palliative care that emphasizes the patient andfamily as the unit and focus of care. In palliative care,the partnership with patients and families is predomin-antly focused on end of life care needs and, because ofthe advanced stage of the disease and the burden ofillness, involves an active role of the healthcare providerin meeting those needs on behalf of patients and fam-ilies. The palliative approach necessitates adapting thepartnerships based on the changing needs of patientsand families in relation to their illness trajectories.Drawing from knowledge that originated from chronicdisease self-management, and because the burden of ill-ness initially tends to be less, there is a greater emphasison engaging patients and families in self-managementstrategies that include end of life considerations earlieron in the illness trajectory. This self-management phil-osophy is exemplified in the notion of a palliative ap-proach incorporated within pulmonary rehabilitation[53] or projects such as The Pathways Home Project [9],as is quoted in Table 3. Self-management is consistentwith the goal of improving quality of life, which formany patients and families means maximizing functionto enable them to do what is important and meaningfulfor them. As the patient and family approaches death,the nature of the partnering shifts with healthcare pro-viders taking a more active role in “doing for” within thecontext of compassionate care, while at the same timerespecting and being sensitive to the self-managementstrategies that have been adopted by patients withchronic conditions and their family members.Theme 3: operationalization of a palliative approachthrough integration and contextualization withinhealthcare systemsDelivering a palliative approach early on in the illnesstrajectories necessitates greater capacity within thehealthcare system to recognize and address the evolvingend of life care needs of people who have chronic life-limiting conditions, regardless of where they receivecare. It is widely acknowledged that the expertise re-quired for a palliative approach does not lie exclusivelywith any particular discipline, profession or healthcaresector, and therefore inevitably requires integration intoexisting care models and systems in partnership with arange of healthcare providers. Our analysis revealedthree prominent types of care delivery models for theintegration of a palliative approach: (a) “early” palliativecare, (b) integration into generalist practice, and (c)disease/condition-specific models for care delivery. Eachof these approaches, which are illustrated in Table 3 withexamples and citations, involves an increase in capacityon the part of care providers to provide a palliative ap-proach. However, the way in which this capacity buildingtakes place varies. For example, there are differences inhow palliative care specialists are engaged in workingwith other professionals who do not specialize in pallia-tive care (i.e., generalist care providers or specialistchronic disease management teams). In addition, thedifferent models of care delivery inform how palliativeSawatzky et al. BMC Palliative Care  (2016) 15:5 Page 9 of 14care principles and practices are systematically inte-grated and contextualized to ensure quality care fordifferent conditions and sectors of care.Some authors advocate for “early” palliative carewhereby palliative care knowledge and expertise is ap-plied upstream with minimal adaptation. This approachremains closely related to traditional palliative care thatoriginated within contexts of cancer care, but with amore upstream orientation. An example is provided in astudy by Temel et al. [23] who found that introducingpalliative care early on in the diagnosis of people whohave metastatic non-small-cell lung cancer resulted in arelative improvement in quality of life and survival. Earlypalliative care was administered at an outpatient clinicand involved at least monthly visits with specialist pallia-tive care clinicians who provided care according toguidelines with special attention to “assessing physicaland psychosocial symptoms, establishing goals of care,assisting with decision making regarding treatment, andcoordinating care on the basis of the individual needs ofthe patients” (p. 734). This model of early palliative carerelies on increased and routine involvement of palliativecare specialists early on and throughout the illness tra-jectory. It has been mostly applied to populations of can-cer patients for whom palliative care guidelines alreadyexist, and thus minimal adaptation is required.Another model of care delivery involves widespreadsystem integration of a palliative approach into general-ist practice, including primary and residential care. Akey characteristic is that the models are not uniquely fo-cused on a particular disease but rather applied to par-ticular sectors of healthcare for people who have variouslife-limiting conditions and comorbidities (e.g., frailty).The GSF is a prime example of an initiative that focusespredominantly on contexts of primary care and residen-tial care. The GSF involves a range of practice supporttools, including tools for early identification, assessment,and care planning to address patient and caregiverneeds, symptom management, and strategies for ensur-ing continuity of care and outcomes evaluation [19, 27,34, 61–63]. In addition to these practice support tools,the GSF facilitates implementation through multidiscip-linary engagement and provider education. This ap-proach involves transformation of the healthcare systemby building capacity within all members of the health-care team to address the needs of people with life-limiting conditions, while working collaboratively withpalliative care specialists. Studies suggest that the GSFhas potential to improve end of life care. Within partici-pating care homes, care providers found that the GSFimproved symptom control and team communication,assisted the homes to find helpful external support andexpertise, increased staff confidence, and fostered resi-dents’ choice [62]. Badger 2009 [34] similarly foundimprovements in care homes post-GSF implementation,including statistically significant increases in the propor-tion of residents who died in the care homes (instead ofin a hospital) and those who had an advance care plan;there was also a significant reduction in crisis admissionsto hospital. Within primary care, the GSF was shown toimprove communication, teamwork, patient identifica-tion, assessment, and care planning [27, 64]. However,implementation challenges have also been identifiedsuch as practitioner access to training [34]; ensuringconsistency and effectiveness in the use of the GSF; andthe need for greater emphasis on patient outcomes, eco-nomic evaluation, equity, and sustainability [27]. Overall,models for the integration of a palliative approach intogeneralist practice models involve working with pallia-tive care specialists to develop capacity within the gener-alist multidisciplinary care team. As noted in Table 3, wefound these models have mostly been adopted inprimary care and residential care sectors.Finally, a third approach involves the adaptation of dis-ease/condition-specific models for care delivery to inte-grate palliative care principles and practices withinhealthcare systems. Practices, such as symptom manage-ment, advance care planning, and formulation of goalsof care, are increasingly integrated with chronic diseasemanagement for people with COPD, CHF, renal disease,neurological conditions, and frailty [9, 10, 16, 53, 65].This approach is not unique to any particular sector ofcare, but rather requires coordination across healthcaresectors that are accessed by people with life-limitingconditions at various stages of their illness trajectories.This includes coordination across acute, outpatient,community, and residential care sectors [8, 9, 16, 53].For example, one study described how COPD patientsand their families connect with their chronic care teamthrough information technology and work in partnershipwith community health nurses who act as mentors tosupport the patients’ self-management [9]. A key charac-teristic is that the system of care involves both theexpertise of the chronic disease or geriatric specialists aswell as specialists in palliative care who collaborate toensure the full breadth of services required to addressthe range of needs of patients and their family care-givers. This necessitates ongoing capacity building for apalliative approach through intentional partnershipbetween specialist palliative care and chronic diseasemanagement teams [53].ConclusionFindings from our narrative synthesis and thematic analysissuggest that there are key distinctions to be made betweena palliative approach and the way in which palliative carehas conventionally been enacted as a healthcare service. ASawatzky et al. BMC Palliative Care  (2016) 15:5 Page 10 of 14particular challenge lies in the use of the term “palliativecare” to refer to either a philosophy of care, or a service, orboth. For example, in many healthcare systems, there areparticular prognostic criteria related to expected length oflife for gaining access to palliative care services. However,the application of palliative care as a philosophy does notnecessarily require specialized services. The term“palliative approach” is used, in part, to address thistension, where a palliative approach can be enactedby any healthcare professional by adapting palliativecare knowledge and expertise to meet the needs ofpeople with chronic life-limiting conditions.Our synthesis reveals that a palliative approach requireshealthcare system change and integration. It is not pos-sible to rely exclusively on expert palliative care servicesto address the emerging palliative care needs of peoplewho have life-limiting conditions. For example, mecha-nisms for early identification and advance care planningare needed to ensure that the palliative needs of peoplewho have life-limiting conditions are recognized andaddressed early on by all healthcare professionals. Thisrequires healthcare professionals in all sectors of care toacknowledge and address patient and family caregiverneeds that arise from the life-limiting nature of the condi-tion, necessitating integration into the education ofhealthcare professionals. However, there is relatively littlemention of healthcare professional education that specific-ally focuses on a palliative approach, and it is difficult toascertain to what extent the current palliative care educa-tion enables people to provide a palliative approach [66].Finally, the integration of a palliative approach requiresmodels of healthcare delivery that will facilitate the adap-tation and application of palliative care knowledge andexpertise in all healthcare sectors and for all chroniclife-limiting conditions. To achieve this, there is aneed for research to determine which models of caredelivery are most appropriate, useful, and cost-effective. This can only be achieved if palliative careknowledge and expertise is extended beyond thedomain of palliative specialist services to include thefull scope of healthcare services, and if providers arerequired to address the needs of people who havelife-limiting conditions and their families.Competing interestsThe authors declare that they have no competing interests.Authors’ contributionsRS and KS designed the study in collaboration with the iPANEL team. RS, PP,and KS designed and conducted the analyses and wrote the manuscript. DDdesigned and completed the literature search strategy. JL and KLcontributed to the selection and coding of articles. JL, DR, CT and BP wereintegrally involved in the initial design and in providing ongoing feedback tothe analysis and the emerging manuscript. JV designed the computerizedselection process and contributed to the writing of the methods. All authorsread and approved the final manuscript.AcknowledgementsThis research was supported by funding from two sources: the Michael SmithFoundation for Health Research provided funding for the iPANEL team, and theCanadian Institutes of Health Research provided funding for this research project.Author details1School of Nursing, Trinity Western University, 7600 Glover Road, Langley, BCV2Y 1Y1, Canada. 2School of Nursing, University of British Columbia,T-201-2211 Westbrook Mall, Vancouver, BC V6T 2B5, Canada. 3School ofNursing, University of British Columbia, 1147 Research Road, Kelowna, BC V1V1V7, Canada. 4Fraser Health, Delta Hospital, Hospice Palliative Care, 5800Mountain View Blvd, Delta, BC V4K 3V6, Canada. 5Fraser Health, Suite 400–Central City Tower, 13450 102nd Avenue, Surrey, BC V3T 0H1, Canada.6Intogrey Research and Development Inc., 300-34334 Forrest Terrace,Abbotsford, BC V2S 1G7, Canada. 7School of Nursing, University of Victoria,PO Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada.Received: 16 April 2015 Accepted: 6 January 2016References1. 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