Journal of Multidisciplinary Healthcare Dovepress open access to scientific and medical research Open Access Full Text Article ORIGINAL RESEARCH Describing Complexity in Palliative Home Care Through HexCom: A Cross-Sectional, Multicenter Study This article was published in the following Dove Press journal: Journal of Multidisciplinary Healthcare Xavier Busquet-Duran 1–3 Background: Complexity has become a core issue in caring for patients with advanced Eva Maria Jiménez-Zafra 1 disease and/or at the end-of-life. The Hexagon of Complexity (HexCom) is a complexity Josep Maria Manresa- assessment model in the process of validation in health-care settings. Our objective is to use Domínguez 2,4,5 the instrument to describe differences in complexity across disease groups in specific home care for advanced disease and/or at the end-of-life patients, both in general and as relates to Magda Tura-Poma 1 each domain and subdomain. Olga Bosch-delaRosa 6 Methods: Cross-sectional study of home care was conducted in Catalonia. The instrument Anna Moragas-Roca 1 includes 6 domains of needs (clinical, psychological/emotional, social/family, spiritual, ethical, Maria Concepción Galera and death-related), 4 domains of resources (intrapersonal, interpersonal, transpersonal, and Padilla 1 practical), and 3 levels of complexity (High (H), Moderate (M), and Low (L)). Interdisciplinary Susana Martin Moreno 1 home care teams assessed and agreed on the level of complexity for each patient. Emilio Martínez-Losada 1 Results: Forty-three teams participated (74.1% of those invited). A total of 832 patients were Silvia Crespo-Ramírez 6 assessed, 61.4% of which were cancer patients. Moderate complexity was observed in 385 (47.0%) Ana Isabel López-Garcia 1 cases and high complexity in 347 (42.4%). The median complexity score was 51 for cancer patients Pere Torán-Monserrat 2,4 and 23 for patients with dementia (p<0.001). We observed the highest level of complexity in the 1 social/family domain. Patients/families most frequently used interpersonal resources (80.5%). Home Care Program, Support Team, PADES Granollers, Vallès Oriental Conclusions: This study sheds light on the high-intensity work of support teams, the Primary Health Care Services, Catalan importance of the social/family domain and planning the place of death, substantial differ- Institute of Health, Barcelona, Spain; 2 Multidisciplinary Research Group on ences in needs and resources across disease groups, and the importance of relationship Health and Society (GREMSAS), wellbeing at the end-of-life. Barcelona, Spain; 3Department of Keywords: home care services, palliative care, terminally ill, terminal care, non-cancer Nursing, University Foundation of Bages (FUB), University of Vic. Central patient, complexity, interdisciplinary research University of Catalunya, Barcelona, Spain; 4 Metropolitan Nord Unit of Research Support, University Institute of Research in Primary Care (IDIAP) Jordi Gol, Barcelona, Spain; 5Department of Background Nursing, Autonomous University of Complexity has become a core issue in caring for patients with advanced disease and/or Barcelona, Barcelona, Spain; 6 Psychosocial Care Team (EAPS), Red at the end-of-life (AD/EOL patients).1–4 The very nature of end-of-life circumstances Cross, Granollers, Barcelona, Spain (which are ever-changing, unpredictable and full of contradictions, ambiguities, sur- prises, and insecurities)5 makes end-of-life care a paradigmatic situation of complexity.6,7 Applying traditional approaches (such as reductionism or compartmentalization) to complex situations may be counterproductive, which means it necessary to establish conceptual frameworks that accommodate the multiple dimensions of complexity through comprehensive and pragmatic approaches.8,9 Correspondence: Xavier Busquet-Duran Based on the definition of complexity levels and the inclusion and referral Email xbusquet@umanresa.cat criteria of patients,10 a model for the care of people with advanced illness and/or submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 297–308 297 DovePress © 2020 Busquet-Duran et al. This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/ http://doi.org/10.2147/JMDH.S240835 terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License (http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms (https://www.dovepress.com/terms.php). Busquet-Duran et al Dovepress at the end-of-life (the Hexagon of Complexity, HexCom) which are broken down into 18 subdomains.2,15 The level has been published11 and partially validated,12 with an of complexity for each domain or subdomain can be low, inter-observer Kappa of 0.92 moderate, or high. The model also includes four domains of This model10,11 was created to address complexity in resources or strengths (intrapersonal, interpersonal, trans- Catalonia (Spain). It is based on the conceptual frame- personal, and practical) based on a consensual model of work of the Multiple Chronic Conditions Research spirituality by Puchalski and which is applied in our clinical Network of the University of Washington, which defines practice.16,17 complexity as the “gap between patient needs and health- The literature provides information on the relevance of care services,”13 or rather, a mismatch between patient the family in home care, as both the caregiver and recipi- needs and services.4 The instrument defines situations ent of care, which clearly distinguishes home care from that are refractory to treatment options as “high complex- institutional care.18 It also describes varying needs accord- ity,” and situations that are difficult to resolve as “mod- ing to the different pathologies that result in death.19 These erate complexity.” In this sense, classifying patients most prevalent of these diseases can be grouped into five according to the level of complexity they present helps categories: cancer, organ failure, neurological disorders, distinguish between those who need specialized palliative dementia, and frailty/multimorbidity.3,20,21 care and those who do not.14 Our objective is to use the instrument to describe Based on the work of Ferris, the model (Figures 1 and 2) differences in complexity across disease groups in specific offers six domains of need (clinical, psychological/emo- home care for AD/EOL patients, both in general and as tional, social/family, spiritual, ethical, and death-related), relates to each domain and subdomain. Figure 1 HexCom form (previous page): analysis of needs. Notes: Collects information about the Complexity observed in each domain and subdomain of Necessity, at the beginning (I) and at the end (F) of the Follow-up, with 3 complexity levels: High (H) (Refractory situation), Medium (M) (Difficult situation), Low (L) (Without Complexity), or N if it cannot be assessed. R&S: Resources & Strengths; STE: Suitability of treatment efforts; DHD: Desire to hasten death; SLD: Situation during last days of life. Interv: interveners. Soc: Social worker; Psyc: Psychologist; Vol: Volunteer; PCU: Palliative care unit; CHC: Hospital. submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 298 DovePress Dovepress Busquet-Duran et al Figure 2 HexCom form (later page): analysis of resources and strengths. Notes: Collects information about Resources and Strengths observed in the home and that help sustain the actual situation. It is indicated if resource determination is detected. Abbreviation: R&S, resources and strengths. Methods Inclusion/exclusion criteria: Patients with advanced dis- ease and/or at the end-of-life attended by PADES teams at Design: Cross-Sectional Study Study Population: AD/EOL Patients Treated by their home. Patients who received care in a residential insti- PADES Teams at Catalonia (Spain) tution are excluded. We used consecutive sampling during In Catalonia, home care is shared between primary care the recruitment period (15/02/6 to 15/12/16) to assign services and home care support teams (PADES teams). patients that met inclusion requirements to one of the PADES teams support primary and community care by visit- PADES teams that agreed to participate in the study. ing the homes of patients with complex cases who may benefit from interdisciplinary and specialized intervention. Generally, Variables they are made up of medical, nursing, and social-work staff, Level of Complexity (Outcome) although some teams also include physiotherapists, occupa- The instrument includes six domains of needs (clinical, tional therapists and/or psychologists. In 2015, PADES teams psychological, spiritual, social/family, ethical, and death- treated 15,337 patients, thus providing coverage for 34.8% of related) and 18 subdomains (Figures 1 and 2). patients at the end-of-life.22 PADES teams have demonstrated Each domain and subdomain may be classified accord- effectiveness, efficiency, and user satisfaction.23,24 There are ing to three qualitative levels of complexity: 1.15 PADES teams per 100,000 inhabitants. However, it is worth pointing out the significant differences in structure, ● High (H): Refractory situation, in which suffering occurs dedication, and training across these teams25 as well as the ● Moderate (M): Difficult situation that requires shared impact of budget cuts to health care.26 care submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 299 DovePress Busquet-Duran et al Dovepress ● Low (L): Low-level complexity ● Health-care data: duration (total days) of home care; ● Not Assessed (NA): Domain cannot be assessed. total number of visits during home care, psycholo- gist, social worker, and volunteer visits. The PADES team of each patient came to a consensus on ● Location of death and cause of PADES team discharge. the level of complexity she/he presented for each subdo- ● PADES team characteristics. main. Then, each domain takes its score from the highest degree of complexity observed in any of its subdomains. Training and data collection process: The Department of The overall level of complexity is, in turn, based on the Health of the Government of Catalonia invited all 58 highest level of complexity observed in any of the six Catalan PADES teams to participate in this study. In total, domains. 52 of these teams (89.6%) participated in one or two in- Both high and moderate complexity require interven- person training sessions at the Department of Health head- tion from a PADES team. This is why we established the quarters. The sessions lasted 5 hrs each and participants dichotomous variable “high/moderate complexity” vs “low watched four videos of clinical cases to learn how to use complexity.” the instrument and standardize data collection and compila- tion. Participants received a user’s guide and were offered Complexity Score a phone number to call should they have doubts during We calculated complexity scores by first determining the fieldwork. PADES teams assessed complexity using the total number of domains classified as H, M, and L. These instrument during interdisciplinary meetings after at least totals were then multiplied as follows: Hx100, Mx10, and one home visit. They used an online formula to enter Lx1 (the NA category was excluded). The result is an information into a centralized database, which contained ordinal variable that constitutes a complexity score for no personal data that could reveal patient identity. each patient in which the hundredth place represents the total number of Hs, the decimal place represents the total Statistical Analysis number of Ms and the ones place represents the total Categorical variables are expressed as the absolute fre- number of Ls. Therefore, a patient with a score of 231 quency and percentage. The Kolmogorov–Smirnov test has 2 Hs, three Ms, and one L (and no NAs). In this way, was used to determine the normality of the quantitative variables and their frequency histogram, skewness, and we were able to obtain a complexity score for each patient. kurtosis were inspected. Quantitative variables are described as the mean and standard deviation or the med- Resource and Strength Domains ian and first and third quartiles (Q1–Q3) for those with These domains address the values, attitudes, and beliefs that a non-normal distribution. We used Pearson’s Chi-square promote adaptation and/or the potential for transformation test to compare proportions, the Student’s t-test for con- (change) as demonstrated by the patient/family in facing the tinuous variables, and the Kruskal–Wallis test for ordinal end-of-life situation. They are divided into four domains variables or non-normal variables. (intrapersonal, interpersonal, transpersonal, and practical). Complexity was evaluated by combining “moderate” and Disease groups: Medical diagnosis (ICD-10) and “high” into one category, thus establishing a dichotomous advanced disease groups: cancer, advanced chronic organ variable (“high/moderate complexity” vs “low complexity”). failure, neurological disorders, dementia, or geriatric We used the Chi-square test to compare the prevalence frailty. Concomitant diagnosis of dementia (Yes/No). The of “moderate/high complexity” across disease groups and PADES team came to a consensus about which diagnosis analyzed the standardized residual as a measure of the most greatly contributed to the process of death for each strength of the difference between observed and expected patient and classified him or her accordingly. values: if the residual was less than −1.96, the observed frequency of the cell was less than the expected frequency; Another Information if it was greater than 1.96, the observed frequency was ● Socio-demographic data (age, gender, relationship to greater than the expected frequency. caretaker, family support worker). Statistical significance for comparisons was p ≤ 0.05. ● Patient’s status: functional status (Barthel Index) and All analyses were performed with SPSS for Windows, mental status (SPMSQ). version 23.0. submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 300 DovePress Dovepress Busquet-Duran et al Ethics Committee Approval the study: 511 (61.4%) had cancer and 321 had non-cancer The study was approved by the Clinical Research Ethics diseases (38.6%) (Table 1). The mean age was 78.73 Committee of the University Insitute of Research in (SD=13.0) and 394 (47.6%) participants were female. Primary Care (IDIAP) Jordi Gol (registration number Patients’ partners took on the role of caretaker in 40.4% P15/171) and by the clinical research ethics committees of cases and their sons/daughters did so in 41.9%. In 554 of all participating centers. All participants read and (66.9%) cases there was no involvement of a family support signed an informed consent form. worker. Patients presented moderate functional dependency (Barthel Index mean: 49.83), and a total of 566 (68.3%) Results participants presented no cognitive impairment. A total of 43 PADES teams (74.1% of those invited) parti- We observed differences in socio-demographic data as cipated in the study. We recruited 832 AD/EOL patients for well as status between groups as regards age, gender, Table 1 Main Variables: Total and per Disease Group Cancer Organ Failure Neurological Dementia Frailty/ Total Disorders Multimorbidity N(%) 511(61.4%) 168(20.1%) 47(5.6%) 78(9.3%) 26(3.1%) 832(100%) P Average agea 74.5 (12.3) 85.1(8.8) 77.7(17.9) 89.5(7.8) 90.12(8.6) 78.7(13.0) <0.001e Range 22–100 53–105 24–101 66–107 70–101 22–107 Female 213(41.8%) 80(47.6%) 30(63.8%) 56(71.8%) 15(57.7%) 394 (47.6%) <0.001f Caretaker: <0.001f Partner 253(49.9%) 49(29.3%) 11(23.4%) 17(21.8%) 3(11.5%) 333 (40.4%) Children 181(35.7%) 77(46.1%) 23(48.9%) 46(59.0%) 19(73.1%) 346(41.9%) Other Fam 35(6.9%) 17(10.2%) 7(14.9%) 7(9.0%) 1(3.8%) 67(8.1%) Other 38(7.5%) 24(14.4%) 6(12.8%) 8(10.3%) 3(11.5%) 79(9.6%) External caretaker <0.001f No 385(75.6%) 94(56.0%) 21(44.7%) 40(51.3%) 14(53.8%) 554(66.9%) Part time 82(16.1%) 42(25.0%) 18(38.3%) 20(25.6%) 9(34.6%) 171(20.7%) 24 hrs 42(8.3%) 32(19.0%) 8(17.0%) 18(23.1%) 3(11.5%) 103(12.4%) Functional status 61.9(27.3) 48.3(28.9) 13.1(15.5) 6.2(12.8) 19.8(27.7) 49.8(32.4) <0.001e (Barthel Index)a Cognitive impairment <0.001f No 419(82.2%) 113(67.3%) 18(38.3%) 0(0.0%) 14(53.8%) 566(68.3%) Mild 46(9.0%) 21(12.5%) 9(19.1%) 1(1.3%) 6(23.1%) 83(10.0%) Moderate 26(5.1%) 18(10.7%) 2(4.3%) 7(9.2%) 3(11.5%) 56(6.8%) Severe 19(3.7%) 16(9.5%) 18(38.3%) 68(89.5%) 3(11.5%) 124(15.0%) Medical diagnosisb C34: 123 I50: 58(34.5%) G31: 26(55.3%) G30: 46 R54: 12(46.2%) (24.1%) J44: 51(30.4%) G12: 8(17.0%) (59.0%) I70: 4(15.4%) C18: 68 G31: 25 (13.3%) (32.1%) Dementiac 33 (6.5%) 25(14.9%) 20(42.6%) 75(100%) 5(19.2%) 158 (19.1%) <0.001f Total daysd 31(14–65) 37.5(16.25–104.00) 35(13–116.25) 37.5(9–68.5) 13.5(4.75–60.75) 33(14–74) 0.064g PADES visitsd 5(3–9) 5(3–10) 5(2–9.25) 4(2–7) 3(2–7.25) 5(2–9) 0.240g Social worker visit 337(66.7%) 120(71.9%) 37(80.4%) 49(63.6%) 13(50.0%) 556(67.7%) 0.055 f Psychologist visit 135(26.7%) 17(10.3%) 11(23.9%) 8(10.7%) 2(7.7%) 173(21.2%) <0.001f Complexity Scored 51(24–201) 33(23–132) 32(22–213) 23(11.5–111) 32.5(21–122) 42(23–141) <0.001g Notes: N(%): number of patients in each disease group and their percentage with respect to the total. PADES: Home care support team program. aMean and Standard Deviation; bICD-10 Code: C34: Neoplasm of lungs; C18: Neoplasm of colon; I50: Heart failure; J44: Chronic obstructive pulmonary disease; G31: Degenerative diseases of the nervous system; G12: Motor neuron disease; G30: Alzheimer’s disease; R54: Senility; I70: Atherosclerosis. cConcomitant dementia. dMedian. 25th and 75th percentiles; e t Student test; fChi-square test; gKruskal–Wallis test. submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 301 DovePress Busquet-Duran et al Dovepress relationship to caretaker, family support worker, and cogni- Table 2 Level of Complexity per Domain, Subdomain, and Global tive and functional status (p<0.001) (Table 1). The cancer Domain/Subdomain Complexity group had the youngest mean age and the greatest number of Low Moderate High participants. Cancer patients’ partners usually took on the role of caretaker and patients presented the best mental and Clinical 297(36.3%) 387(47.3%) 135(16.5%) Physical 336(41.1%) 365(44.6%) 127 (14.3%) functional status. Other groups consisted predominantly of Therapeutic 502(61.5%) 243(29.8%) 71(8.7%) older (except for the neurological disorders group, which was younger) females (except for the organ failure group, in Psychological 415(52.3%) 279(35.2%) 99(12.5%) Personality 594(76.4%) 130(16.7%) 53(6.8%) which gender was equally distributed). Patients in these Emotional 419(55.7%) 251(33.4%) 82(10.9%) groups were mostly cared for by their sons/daughters with the aid of a family support worker and presented worse Spiritual 441(68.7%) 150(23.4%) 51(7.9%) functional and mental status. Neoplasm of the lungs, Meaning 420(74.5%) 105(18.6%) 39(6.9%) Connection 530(84.1%) 73(11.6%) 27(4.3%) advanced heart failure, degenerative disorders of the central Transcendence 384(73.1%) 110(21.0%) 31(5.9%) nervous system, Alzheimer’s disease, and senility were the most common diagnoses for each group. We observed a high Social/Family 257(31.4%) 364(44.4%) 198(24.2%) Relationships 534(65.5%) 210(25.8%) 71(8.7%) prevalence of concomitant dementia (42.6%) in the neurolo- Emotional 425(52.5%) 289(35.7%) 96(11.9%) gical disorders group. Practical 454(55.7%) 267(32.8%) 94(11.5%) Patients received home care for a total of 33 days on External 420(54.6%) 254(33.0%) 95(12.4%) average, during which they received an average of 5 Financial 668(85.3%) 82(10.5%) 33(4.2%) visits, without much variance across groups. The major- Ethical 554(70.4%) 169(21.5%) 64(8.1%) ity of patients received visits from social workers Information 601(81.5%) 91(12.3%) 45(6.1%) (67.7%), especially those in the neurological disorders STE 556(80.3%) 112(16.2%) 24(3.5%) and organ failure groups (80.4% and 71.9%; p=0.05). DHD 540(87.7%) 59(9.6%) 17(2.8%) Psychologists treated 173 (21.2%) patients, above all Death-related 313(42.2%) 272(36.7%) 156(21.1%) those in the cancer and neurological disorders groups Place 290(48.5%) 175(29.3%) 133(22.2%) (26.7% and 23.9%; p<0.001). Volunteer support was less SLD 171(62.6%) 61(22.3%) 41(15.0%) than 1.5%. Grief 459(62.8%) 201(28.6%) 44(6.3%) Most patients presented either moderate 385 (47.0%) Global complexity 87(10.6%) 385(47.0%) 347(42.4%) or high 347 (42.4%) complexity. We observed the highest Abbreviations: STE, suitability of treatment efforts; DHD, desire to hasten death; level of complexity (Score 51) in the cancer group and the SLD, situation during last days of life. lowest level (Score 23) in the dementia group (p<0.001) (Table 1, Figure 3). Table 2 presents a summary of complexity observed in all patients. High complexity was most frequent in the social/family domain (24.2%) and in the place-of-death subdomain (22.2%), while it was least frequent in the ethical (8.1%) and spiritual (7.9%) domains. Table 3 compares “Moderate or high complexity” across disease groups: clinical and physical complexity were high- est in the organ failure group and lowest in the dementia group. Psychological Complexity Was Lowest in the Dementia Group Spiritual complexity was lowest in the dementia group and the subdomain of transcendence was lowest in the organ failure group. Social/family complexity was lowest in the Figure 3 Comparison of complexity scores of each disease group. frailty/multimorbidity groups. Ethical complexity was lowest Note: The dashed line represents the median Complexity Score of all participants. in the organ failure group. Death-related complexity and its submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 302 DovePress Dovepress Busquet-Duran et al Table 3 Differences in Complexity Across Disease Groups: Patients with Moderate or High Complexity (N%) Domain/Subdomain Cancer Organ Neurological Dementia Frailty/ Total P Failure Disorder Multimorbidity Clinical 318 (63.0%) 121 (73.3%)a 30 (63.8%) 36 (47.4%)b 17 (65.4%) 522 (63.7%) 0.004 a Physical 292 (57.9%) 114 (69.1%) 28 (59.6%) 31 (40.8%)b 17 (65.4%) 482 (58.9%) 0.001 Therapeutic 192 (38.2%) 73 (44.2%) 17 (37.0%) 22 (28.9%) 10 (38.5%) 314 (38.5%) 0.258 Psychological 252 (50.5%) 71 (44.9%) 24 (54.5%) 22 (32.8%)b 9 (36.0%) 378 (47.7%) 0.037 Personality 119 (24.3%) 38 (24.5%) 8 (18.6%) 14 (21.9%) 4 (16.0%) 183 (23.6%) 0.790 Emotional 224 (46.0%) 64 (43.0%) 21 (55.3%) 15 (27.3%) 9 (39.1%) 333 (44.3%) 0.055 Spiritual 149 (33.6%) 38 (29.7%) 9 (33.3%) 1 (3.7%)b 4 (23.5%) 201 (31.3%) 0.023 Meaning 103 (26.4%) 29 (24.2%) 8 (38.1%) 1 (6.3%) 3 (17.6%) 144 (25.5%) 0.222 Connection 71 (16.2%) 24 (19.0%) 3 (11.5%) 0 (0.0%) 2 (11.8%) 100 (15.9%) 0.191 Transcendence 110 (30.5%) 20 (17.2%)b 7 (36.8%) 0 (0.0%)b 4 (23.5%) 141 (26.9%) 0.010 Social/Family 348 (68.9%) 121 (73.3%) 34 (72.3%) 47 (61.8%) 12 (46.2%)b 562 (68.6%) 0.045 Relationships 172 (34.1%) 64 (39.3%) 18 (38.3%) 20 (26.7%) 7 (26.9%) 281 (34.5%) 0.323 Emotional 236 (47.0%) 80 (49.4%) 27 (58.7%) 32 (43.2%) 10 (38.5%) 385 (47.5%) 0.409 Practical 222 (44.0%) 80 (48.8%) 23 (48.9%) 28 (37.3%) 8 (32.0%) 361 (44.3%) 0.312 External 210 (44.0%) 83 (52.9%) 19 (47.5%) 28 (39.4%) 9 (37.5%) 349 (45.4%) 0.232 Financial 74 (15.2%) 25 (16.0%) 3 (7.5%) 8 (10.7%) 5 (20.0%) 115 (14.7%) 0.477 Ethical 156 (31.6%) 42 (26.3%) 14 (31.8%) 13 (20.0%) 8 (33.3%) 233 (29.6%) 0.295 Information 109 (23.0%) 16 (10.5%)b 4 (10.5%) 4 (7.7%)b 3 (13.6%) 136 (18.5%) 0.001 Suitability of treatment 78 (18.7%) 27 (18.6%) 12 (29.3%) 12 (18.5%) 7 (29.2%) 136 (19.7%) 0.384 efforts Desire to hasten death 50 (12.9%) 16 (12.2%) 3 (9.1%) 3 (7.0%) 4 (20.0%) 76 (12.3%) 0.618 Death 283 (61.9%) 82 (58.2%) 21 (46.7%) 28 (38.9%)b 14 (53.8%) 428 (57.8%) 0.003 a b Location 215 (58.9%) 59 (54.1%) 10 (30.3%) 15 (22.7%)b 9 (36.0%) 308 (51.5%) 0.000 Situation of last days 67 (42.7%) 18 (36.0%) 5 (29.4%) 6 (18.8%) 6 (35.3%) 102 (37.4%) 0.128 Grief 169 (38.9%) 39 (29.5%) 17 (38.6%) 14 (20.6%)b 6 (24.0%) 245 (34.8%) 0.015 Notes: N(%): number of patients in each disease group and their percentage with respect to the total. The significant differences according to the standardized residuals for Pearson’s Chi-square test are marked in bold: aGreater than 1.96 (observed frequency is greater than expected); bLess than −1.96 (observed frequency is less than expected). subdomains of location, situation of last days and grief were relationships) were the type most frequently employed to lowest in the dementia group, while the location subdomain cope with the end-of-life situation.28 was highest in the cancer group. In specialized home care, the situations professionals Regarding resources used to face the situation, cancer attend to are highly complex and transitory. patients most frequently used all three types of resources, Our results corroborate those found in the bibliography. whereas dementia patients used them least frequently In one study, a home hospitalization team found that 79% of (Table 4). Patients with organ failure most frequently patients presented highly complex situations.29 We also used practical resources and those with neurological dis- know that the needs of cancer patients are radically different orders used transpersonal resources least frequently. from those of terminal patients with organ failure.19,20,30,31 Waller observed physical complexity in 51% of participants, Discussion practical social/family complexity in 33%, and high spiritual There are significant differences in needs and resources complexity in 8.8%.32 Waller also observed high psycholo- across disease groups: cancer patients presented the great- gical/emotional complexity in 38.8% of patients. Both est complexity, while dementia patients made the least use Waller’s figures and ours are greater than those found by of resources.27 Potash, who noted that between 20% and 35% of patients Complexity was greatest in the social/family domains required specific psychological care.33 Regarding the ethical and place of death. Interpersonal resources (positive domain, Chochinov found that 8.5% of patients persistently submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 303 DovePress Busquet-Duran et al Dovepress Table 4 Resources and Strengths Used to Face the End-of-Life Across Disease Groups Domain/Subdomain Cancer Organ Neurological Dementia Frailty Total P Failure Disorders Multimorbidity Intrapersonal 410(80.1%)a 120(71.4%) 27(57.4%)b 32(41.0%)b 17(63.0%) 606(72.8%) <0.001 a Strong and resilient 221(43.2%) 61(36.3%) 13(27.7%) 15(19.2%)b 11(40.7%) 321(38.6%) 0.001 personality Self-decision making 327(63.9%)a 94(56.0%) 20(42.6%) 7(9.0%)b 10(37%)b 458(55.0%) <0.001 a b Self-emotional control 311(60.7%) 81(48.2%) 19(40.4%) 20(25.6%) 10(37%) 441(53.0%) <0.001 Interpersonal 439(85.7%)a 126(75.0%)b 35(74.5%) 53(67.9%)b 17(63.0%)b 670(80.5%) <0.001 Capacity to feel loved 305(59.6%) 98(58.3%) 27(57.4%) 39(50%) 15(55.6%) 484(58.2%) 0.620 Positive relationships 387(75.6%)a 107(63.7%) 26(55.3%)b 37(47.4%)b 16(59.3%) 573(68.9%) <0.001 Family & Roles: caring family 258(50.4%)a 69(41.1%) 20(42.6%) 26(33.3%)b 13(48.1%) 386(46.4%) 0.028 environment Transpersonal 359(70.1%)a 111(66.1%) 21(44.7%)b 17(21.8%)b 16(59.2%) 524(63.0%) <0.001 a b Future-focused: confident 273(53.3%) 85(50.6%) 14(29.8%) 3(3.8%)b 12(44.4%) 387(46.5%) <0.001 about the future Present-focused: living the 263(51.4%)a 77(45.8%) 13(27.7%)b 14(17.9%)b 9(33.3%) 376(45.2%) <0.001 here & now Religiosity and rituals 86(16.8%) 34(20.2%) 6(12.8%) 6(7.7%) 7(25.9%) 139(16.7%) 0.083 Practical 364(71.1%) 131(78%)a 32(68.1%) 33(42.3%)b 19(70.4%) 579(69.6%) <0.001 Organization: organizational 289(56.4%) 105(62.5%) 29(61.7%) 33(42.3%) 15(55.6%) 471(56.6%) 0.052 capacity Capacity to entertain oneself 214(41.8%)a 79(47.0%)a 12(25.5%) 3(3.8%)b 9(33.3%) 317(38.1%) <0.001 Notes: The significant differences according to the standardized residuals for Pearson’s Chi-square test are marked in bold: aGreater than 1.96 (observed frequency is greater than expected); bLess than −1.96 (observed frequency is less than expected). desired to hasten death.34 A recent systematic review yielded subdomain of connection, 29.7% in meaning, and 35.5% great variability in results for this subdomain, ranging from in transcendence. 3.3% to 28%.35 Lastly, prevalence of moderate to high com- We know that unmet needs in end-of-life care are mostly plexity indicators of grief was 32%36 and prevalence of related to communication issues.45 Thus, by promoting team pathological grief was 28%.37 consensus and communication, the instrument fulfills an The fact that the highest level of clinical (physical) important role. In our analysis of other tools, we found that complexity was observed in the organ failure group is PCPSS46 does not include an ethical or death-related domain, likely related to a less predictable trajectory and develop- nor does it differentiate between the spiritual and psycholo- ment of crises in these diseases.38 The higher level of gical/emotional domains that PC-NAT does;47,48 NAT- psychological (emotional) complexity observed in the neu- PD-C49 is exclusively used for cancer cases and NAT-PD- rological disorders group is perhaps related to the expecta- HF50 for advanced heart disease; CSNAT51 is specifically tion of loss over a longer period of time.39,40 aimed at caretakers; NA-ACP52 and NEST1353 test patient The low level of complexity in the dementia group response; and, lastly, IDCPAL is focused more on manage- may be related to cognitive impairment presented by ment than clinical practice.54 None of the aforementioned patients.41–43 The lower level of ethical and spiritual com- tools specifically examines resources and strengths. plexity observed may be related to the difficulty that health-care professionals had in detecting these needs.44 Limitations Based on the open comments collected in the survey, it is These results are a reflection of regular specialized home clear that teams had a heavy workload and some difficulty care and allow us to analyze complexity based on different in clearly defining some of the contents of the assessment disease groups. The concept of end-of-life complexity tool, especially those related to spiritual needs. While used for this study is based on clinical judgment, which clinical complexity is described as undeterminable in is controversial and awaits consensus. The subjectivity that 0.2% of cases, this percentage reaches 22.6% in the comes with making such clinical judgments is mitigated to submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 304 DovePress Dovepress Busquet-Duran et al some extent by prior training and the entire evaluation in needs and resources across disease groups, and the impor- team coming to an agreement on complexity levels. tance of relationship wellbeing at the end-of-life. This tool is currently in the process of validation. However, partial validations not yet published in English Abbreviations have been conducted and have demonstrated high inter- “Organ failure”, Advanced chronic organ failure; AD/ rater reliability (Kappa=0.92).12 Based on these results, the EOL, Advanced disease and/or end-of-life; HexCom, Department of Health of the Government of Catalonia has Hexagon of Complexity; PADES, Home care support decided to implement the tool in the management of such team program. patients. The sample size of neurological and frailty/multimor- Consent for Publication bidity patients was lower than necessary and might have Not applicable, as the manuscript does not contain perso- affected statistical power in these groups.55 However, due nal data. to the larger size of the other groups, important differences were detected in frailty/multimorbidity patients and the Data Sharing Statement trends observed are plausible. While the IDIAP Jordi Gol does not plan on storing anonymous data in a public database, it will provide access to files should reviewers request it. Generalizations and Perspectives The results of our study can be extrapolated to the field in question, or rather, to AD/EOL patients treated by specific Ethics and Consent Statement This study was conducted in accordance with the Declaration home care teams, regardless of population differences.56 of Helsinki. This project was assessed by the Clinical The patterns observed suggest that specialized pallia- Research Ethics Committee (CEIC) of the IDIAP Jordi tive home care should be focused mainly on cancer, neu- Gol. Participating patients gave their informed consent. All rology, and organ failure rather than fragility and participants read and signed an informed consent form. dementia. Specifically, in the case of patients with cancer or organ failure, quick access to palliative care beds must be available and preferences regarding place of death must Acknowledgments We would like to thank Maria Jesús Micó for her adminis- be taken into consideration. Our results also show that the trative support and Colleen McCarroll for translating and role of the social worker on these teams and their integra- reviewing the English version of this article. We would also tion in the social and community network must be like to thank the professionals from the participating PADES reinforced57–63 and that, due to the intensity of this type teams: Alt-Empordà, Alt-Maresme (Blanes), Bages, Baix- of care (refractoriness, changing circumstances and short Camp, Baix-Litoral (Sant Boi), Baix-Penedès (Vendrell), duration), health-care teams and professionals must be Cerdanya, Cornellà, Delta-Hospitalet Sud, El Prat De encouraged to practice self-care.64–68 LLobregat (Delta del Llobregat), Garraf (Vilanova i La These findings highlight the importance of the presence Geltrú), Geriàtric (Sabadell), Gironés i Pla de l’Estany, of a skilled caregiver in the home, as well as the need for Gràcia, Horta Guinardó, Baix Llobregat-Litoral SAP Delta, assessment of all areas included in the model due to the Les Corts, Mataró, Martorell, Mollet, Nou Barris, Pallars, heavy burden that the psychosocial field can have on Pal·liació Cerdanyola, Palliació Sabadell, Pius Hospital de suffering at the end-of-life.45,69 Valls, Pla d’Urgell-Garrigues, Reus, Ripollès, Sant Cugat, We also recommend further analysis of complexity as Sant Feliu de Llobregat, Sant Martí Nord, Santa Coloma de observed in non-cancer groups, and it will be interesting to Gramenet, Santa Susanna Caldes de Montbui, Segrià Sud de see the evolution of complexity. Future research should Lleida, Selva Marítima (Blanes), Tarragona, Tarragonès, focus on specific validation studies of this instrument. Tortosa, Badalona-Sant Adrià, Igualada-Anoia, Baix Ebre- Montsià, Dreta Eixample, Sants-Montjuic. We would like to Conclusions thank the team managers: Anna Serra Plana, Cristina Prat This study sheds light on the high-intensity work of support Asensio, Marta Camprubí Rovira, Montse Bonet Martí, teams, the importance of the social/family domain and plan- J. Cristina Cabrera Bermúdez, Sandra Barceló Castelló, ning the place of death in home care, substantial differences Maica Vallbona González, Lourdes Cortés Bofill, Mercedes submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 305 DovePress Busquet-Duran et al Dovepress Liras García, Marta Sierra García, José M. Cantalejo 4. Codorniu N, Tuca A. Complexity levels of interventions in a hospital support team: descriptive study about prevalence, clinical character- Moreno, Montserrat López Postigo, Montse Parés Feu, istics and team organisation for each level. In: EAPC Abstrats, editor. Carme Bassedas Ballús, Angela Cadena Andreu, M. Dolors 3rd European Association for Palliative Care Research Congress - Martí Colomer, Josep M. Picaza Vilà, Santi Bernades Stresa, Italy 2004. Palliative Medicine;2004; 303–393 5. Tercero-Talavera F. Conceptos básicos para manejar la complejidad. Teixidó, Francesc-Xavier Bosch Petit, Alba Feixa Quer, 1st ed. Tercero-Talavera F, editor. Managua. 2016;143–168 p. Priscila Muñoz San Juan, Glòria Rovira Oliva, Ramona 6. Normand C. Setting priorities in and for end-of-life care: challenges González Rubió, Manel Esteban Pérez, Montserrat in the application of economic evaluation. Heal Econ Policy Law. 2012;7:431–439. doi:10.1017/S1744133112000229 Bonamaison Tena, Carles Gener Turón, Montse Bonilla 7. Marshall D, Myers J. Complexity science and palliative care: draw- Martos, Francisco Cordero Higuero, Alex López Català, ing from complex adaptive systems theories to guide our successes. J Palliat Med. 2018;21(9):1210–1211. doi:10.1089/jpm.2017.0667 Anna Torrents Iglesias, M. Núria Arraràs Torrelles, Jéssica 8. Plsek PE, Greenhalgh T. Complexity science: the challenge of com- Galán Fernández, Gemma Serra Recasens, Marta Blasco plexity in health care. BMJ. 2001;323:625–628. Pastor, Cinta Castellà Valldepérez, Núria Miralles Banqué, 9. Sturmberg JP, Martin CM. Complexity and health - yesterday’s traditions, tomorrow’s future. J Eval Clin Pract. 2009;15:543–548. Anna Vidal Basalo, Sonsoles Frutos Díaz, Enric Martínez doi:10.1111/j.1365-2753.2009.01163.x Vieites, Aïna Puig Rodríguez. 10. Generalitat de Catalunya Departament de Salut. Descripció i Consens dels Criteris de Complexitat Assistencial i Nivells d’intervenció en l’atenció al Final de la vida. Barcelona: Direcció General de Author Contributions Planificació i Avaluació; 2009. Available from: http://canalsalut.gen All authors made substantial contributions to conception and cat.cat/web/.content/contingut_responsiu/salutAZ/C/cures_paliatives/ documents_prof/treballcomplexi2010.pdf. design, acquisition of data, and data analysis and interpreta- 11. Esteban-Pérez M, Grau IC, Castells-Trilla G, et al. Complejidad tion. They took part in drafting the article and revising its asistencial en la atención al final de la vida: criterios y nivelesde content, approved the final version to be published and intervención en atención comunitaria de salud. Med Paliat. 2015;22:69–80. doi:10.1016/j.medipa.2013.03.007 agreed to be held accountable for all aspects of the work. 12. Esteban-Pérez M, Fernández-Ballart J, Boira-Senlí R, Martínez- Serrano T, Nadal-Ventura S, Castells-Trilla G. Concordancia entre la complejidad observada desde diferentes niveles asistenciales en Funding pacientes crónicos complejos, con enfermedad avanzada o al final de The IDIAP Jordi Gol funded this project’s databases, and la vida mediante un modelo de abordaje de la complejidad. Med the main researcher (XB) received an internal grant from Paliat. 2018;25:236–244. 13. Grembowski D, Schaefer J, Johnson KE, et al. Conceptual model of the the Metropolitan Nord Primary Care Service (Catalan role of complexity in the care of patients with multiple chronic conditions. Health Institute), the objective of which is to promote Med Care. 2014;52:7–14. doi:10.1097/MLR.0000000000000045 14. Radbruch L, Payne S. White paper on standards and norms for research strategies in Primary Care by providing exclusive hospice and palliative care in Europe: Part 1. Eur J Palliat Care. work packages (60 to 120 hrs) to clinicians to conduct 2009;16:278–289. research. This is a public institution that provides logistical 15. Busquet-Duran X. L’hexàgon de la complexitat (HexCom). Intercanvis/Intercambios Psicoanàlisi. 2017;38:86–106. and methodological support for research projects without 16. Puchalski CM, Vitillo R, Hull SKRN. Improving the spiritual dimension interfering in their design or the collection, analysis and of whole person care: reaching national and international consensus. J Palliat Med. 2014;17(6):1–15. doi:10.1089/jpm.2014.9427 interpretation of data or the drafting of manuscripts. 17. Benito E, Oliver A, Galiana L, Barreto P, Pascual A, Gomis CBL. Development and validation of a new tool for the assessment and Disclosure spiritual care of palliative care patients. J Pain Symptom Manag. 2014;47(6):1008–1018. doi:10.1016/j.jpainsymman.2013.06.018 The authors report no conflicts of interest in this work. 18. Finlay IG, Higginson IJ, Goodwin DM, et al. Palliative care in hospital, hospice, at home: results from a systematic review. Ann Oncol. 2002;13:257–264. doi:10.1093/annonc/mdf668 References 19. Kimbell B, Murray SA, MacPherson S, Boyd K. Embracing inherent 1. Connor S, Gómez-Batiste X. Assesing the need for palliative care in uncertainty in advanced illness. BMJ. 2016;354:1–4. populations and contexts. In: Gómez-Batiste X, Connor S, editors. 20. World Health Organization Regional Office for Europe. Palliative Building Integrated Palliative Care Programs and Services. Barcelona; care the solid facts. 2004. Available from: https://apps.who.int/iris/ 2017:79–92. handle/10665/107561. Accessed March 11, 2020. 2. Ferris FD, Balfour HM, Bowen K, et al. A model to guide patient and 21. Gómez-Batiste X, Martínez-Muñoz M, Blay C, et al. Prevalence and family care: based on nationally accepted principles and norms of characteristics of patients with advanced chronic conditions in need practice. J Pain Symptom Manag. 2002;24:106–123. doi:10.1016/ of palliative care in the general population: a cross-sectional study. S0885-3924(02)00468-2 Palliat Med. 2014;28(4):302–311. doi:10.1177/0269216313518266 3. Ministerio de Sanidad Política Social e Igualdad. Estrategia en 22. Generalitat de Catalunya. Agència de Qualitat i Avaluació Sanitàries Cuidados Paliativos del Sistema Nacional de Salud. Actualización de Catalunya. Central de Resultats, Ambit Sociosanitari, Dades 2016 2010–2014. 2011 1–72. Available from: http://www.msssi.gob.es/orga (OBSERVATORI DEL SISTEMA DE SALUT DE CATALUNYA) nizacion/sns/planCalidadSNS/cuidadosPaliativos.htm. Accessed Apr [Internet]. Barcelona (Spain); 2016. Available from http://observator 1, 2018. isalut.gencat.cat. submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 306 DovePress Dovepress Busquet-Duran et al 23. Espinosa J, Gomez-Batiste X, Picaza JM, Limon E. Equipos de 41. Fox S, FitzGerald C, Harrison Dening K, et al. Better palliative soporte domiciliario de cuidados paliativos en Espa?. Med care for people with a dementia: summary of interdisciplinary Clin (Barc). 2010;135(10):470–475. doi:10.1016/j.medcli.2010.06. workshop highlighting current gaps and recommendations for 004 future research. BMC Palliat Care. 2018;17:9. doi:10.1186/ 24. Alonso-Babarro A, Bruera E, Varela-Cerdeira M, et al. Cant this s12904-017-0221-0 patient be discharged home? Factors associated with at-home death 42. Emanuel L, Powell RA, Handzo G, Michelson KN, Dhingra L. among patients with cancer. J Clin Oncol. 2011;29:1159–1167. Validated assessment tools for psychological, spiritual, and family doi:10.1200/JCO.2010.31.6752 isues. In: Cherny N, M F, S K, RK P, DC C, editors. Oxford Textbook 25. Doblado R, Herrera E, Librada S, Lucas MÁ, Muñoz I, Rodríguez Z. of Palliative Medicine. 5th ed. Oxford University Press; 2015:398– Análisis y evaluación de los recursos de Cuidados Paliativos de 405. España. Sociedad Española de Cuidados Paliativos. 2016;1–139 p. 43. Kupeli N, Leavey G, Moore K, et al. Context, mechanisms and 26. Woitha K, Garralda E, Martin-Moreno JM, Clark DCC. Ranking of outcomes in end of life care for people with advanced dementia. palliative care development in the countries of the european union. BMC Palliat Care. 2016;15:31. doi:10.1186/s12904-016-0103-x J Pain Symptom Manag. 2016;52:370–377. doi:10.1016/j.jpainsymman. 44. Esteban-Pérez M, Fernández-Ballart J, Boira-Senlí RM, Martínez- 2016.03.008 Serrano T, Nadal-Ventura SC-TG. Concordancia entre la complejidad 27. Seidel D, Thyrian JR. Burden of caring for people with dementia – observada desde diferentes niveles asistenciales en pacientes crónicos comparing family caregivers and professional caregivers. complejos, con enfermedad avanzada o al final de la vida mediante A descriptive study. J Multidiscip Healthc. 2019;12:655–663. doi:10. un modelo de abordaje de la complejidad. Med Paliat. 2018;25 2147/JMDH.S209106 (4):236–244. doi:10.1016/j.medipa.2017.05.008. 28. van Schrojenstein Lantman M, Mackus M, Otten L, et al. Mental 45. Ventura AD, Burney S, Brooker J, Fletcher J, Ricciardelli L. Home- resilience, perceived immune functioning, and health. J Multidiscip based palliative care: a systematic literature review of the Healthc. 2017;10:107–112. doi:10.2147/JMDH.S130432 self-reported unmet needs of patients and carers. Palliat Med. 2014; 29. Martín-Utrilla S, Villasana-Sarabia A, Gallart-Gomez P, Mancheno- 28:391–402. doi:10.1177/0269216313511141 Alvaro A. Diagnóstico de la complejidad de la atención paliativa en 46. Girgis A, Waller A. Palliative care needs assessment tools. In: hospitalización a domicilio versus hospitalización convencional. Cherny N, Fallon M, Kaasa S, Russell K, Portenoy and DCC, editors. Therapeía. 2016;8:31–45. Oxford Textbook of Palliative Medicine. 5th ed. Oxford University 30. Stiel S, Heckel M, Seifert A, Frauendorf T, Hanke RM, Ostgathe C. Press; 2015:363–375. Comparison of terminally ill cancer- vs. non-cancer patients in spe- 47. Waller A, Girgis A, Currow D, Lecathelinais C. Development of the cialized palliative home care in Germany – a single service analysis. palliative care needs assessment tool (PC-NAT) for use by BMC Palliat Care. 2015;14(1):34. doi:10.1186/s12904-015-0033-z multi-disciplinary health professionals. Palliat Med. 2008;22(8):95 31. Aira Ferrer P, Domínguez Lorenzo C, Cano González JM, et al. 6–964. doi:10.1177/0269216308098797 Características de los pacientes con enfermedad crónica avanzada 48. Masso M, Allingham SF, Johnson CE, et al. Palliative care problem incluidos en un programa de cuidados paliativos domiciliario. Med severity score: reliability and acceptability in a national Paliat. 2017;24(4):179–187. doi:10.1016/j.medipa.2015.08.001 study_XXX. Palliat Med. 2016;30(5):479–485. doi:10.1177/026921 32. Waller A, Girgis A, Johnson C, et al. Improving outcomes for people 6315613904 with progressive cancer: interrupted time series trial of a needs 49. Waller A, Girgis A, Lecathelinais C, et al. Validity, reliability and assessment intervention. J Pain Symptom Manag. 2012;43 clinical feasibility of a needs assessment tool for people with pro- (3):569–581. doi:10.1016/j.jpainsymman.2011.04.020 gressive cancer. Psychooncology. 2010;733:726–733. 33. Potash M, Breitbart W. Affective disorders in advanced cancer. 50. Waller A, Girgis A, Davidson PM, et al. Facilitating needs-based Hematol Oncol Clin North Am. 2002;16(3):671–700. doi:10.1016/ support and palliative care for people with chronic heart failure: S0889-8588(02)00013-8 preliminary evidence for the acceptability, inter-rater reliability, and 34. Chochinov H, Wilson K, Enns M. Desire for death in the terminally validity of a needs assessment tool. J Pain Symptom Manag. ill. J Psychiatry. 1995;152:1185–1191. 35. Bellido-Pérez M, Monforte-Royo C, Tomás-Sábado J, Porta-Sales J, 2013;45:912–925. doi:10.1016/j.jpainsymman.2012.05.009 Balaguer A. Assessment of the wish to hasten death in patients with 51. Ewing G, Brundle C, Payne S, Grande G. The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at advanced disease: a systematic review of measurement instruments. Palliat Med. 2016;1:1–16. home: a validation study. J Pain Symptom Manage. 2013;46:39 36. Naudeillo Cosp M, Fustero AE, Ayma DQ, et al. Análisis del duelo 5–405. doi:10.1016/j.jpainsymman.2012.09.008 en una muestra de familiares de pacientes ingresados en una unidad 52. Rainbird KJ, Perkins JJ. The needs assessment for advanced cancer de cuidados paliativos. Med Paliat. 2012;19:10–16. doi:10.1016/j. Patients (Na-Acp): a measure of the perceived needs of patients with medipa.2010.11.007 advanced, incurable cancer. a study of validity, reliability and 37. Blanco Toro L, Librada Flores S, Rocafort Gil J, Cabo Domínguez R, acceptability. Psychooncology. 2005;306:297–306. doi:10.1002/pon. Galea Marín T, Alonso Prado ME. Perfil del cuidador principal del 845 enfermo en situación terminal y análisis del riesgo de desarrollar 53. Scandrett KG, Reitschuler-Cross EB, Nelson L, et al. Feasibility and duelo patológico. Med Paliat. 2007;14:164–168. effectiveness of the NEST13+ as a screening tool for advanced illness 38. Vicent L, Nuñez Olarte JM, Puente-Maestu L, et al. Degree of care needs. J Palliat Med. 2010;13:161–169. doi:10.1089/jpm.2009. dyspnoea at admission and discharge in patients with heart failure 0170 and respiratory diseases. BMC Palliat Care. 2017;16:35. doi:10.1186/ 54. Salvador Comino R, Garrido Torres N, Perea Cejudo I, Martin s12904-017-0208-x Rosello ML, Regife Garcia V, Fernandez Lopez A. El valor del 39. Veronese S. The challenges of palliative care for those with neurolo- instrumento diagnostico de la complejidad en cuidados paliativos gical diseases. Palliat Med. 2018;32:706–707. doi:10.1177/0269216 para identificar la complejidad en pacientes tributarios de cuidados 318760767 paliativos. Med Paliat. 2017;24:196–203. doi:10.1016/j.medipa.2016. 40. Hogden A, Foley G, Henderson R, James N, Aoun S. Amyotrophic 01.003 lateral sclerosis: improving care with a multidisciplinary approach. 55. Sørbye LW, Sverdrup S, Pay BB. Should frail older adults be in J Multidiscip Healthc. 2017;10:205–215. doi:10.2147/JMDH.S134 long-term care facilities? J Multidiscip Healthc. 2018;11:99–107. 992 doi:10.2147/JMDH.S155372 submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 307 DovePress Busquet-Duran et al Dovepress 56. Nabal M, Barcons M, Moreno R, et al. Patients attended by palliative 64. Bayes R. Necesidad y uso del método poético en el ámbito sanitario. care teams: are they always comparable populations? Springerplus. Rev Iberoam Psicosomática. 2017;121. 2013;2:177. doi:10.1186/2193-1801-2-177 65. Pask S, Pinto C, Bristowe K, et al. A framework for complexity in 57. Thomsen KT, Guldin M-B, Nielsen MK, Ollars CL, Jensen AB. palliative care: a qualitative study with patients, family carers and A process evaluation of systematic risk and needs assessment for care- professionals. Palliat Med. 2018;026921631875762. givers in specialised palliative care. BMC Palliat Care. 2017;16:23. 66. Orellana-Rios CL, Radbruch L, Kern M, et al. Mindfulness and doi:10.1186/s12904-017-0196-x compassion-oriented practices at work reduce distress and enhance 58. Weibull A, Olesen F, Neergaard MA. Caregivers’ active role in pallia- self-care of palliative care teams: a mixed-method evaluation of an tive home care – to encourage or to dissuade? A qualitative descriptive “on the job“ program. BMC Palliat Care. 2018;17:3. doi:10.1186/ study. BMC Palliat Care. 2008;7:15. doi:10.1186/1472-684X-7-15 s12904-017-0219-7 59. Wang C-W, Chan CLW, Chow AYM. Social workers’ involvement in 67. Benito Oliver E, De Albornoz PAC, López HC. Herramientas para el advance care planning: a systematic narrative review. BMC Palliat autocuidado del profesional que atiende a personas que sufren. FMC Care. 2018;17(1):5. doi:10.1186/s12904-017-0218-8 Form Medica Contin en Aten Primaria. 2011;18(2):59–65. doi:10.10 60. Payne S, Eastham R, Hughes S, Varey S, Hasselaar J, Preston N. 16/S1134-2072(11)70023-8 Enhancing integrated palliative care: what models are appropriate? A 68. Los Morandi T. PADES: red de vida. Med Paliat. 2018;25(2):11 cross-case analysis. BMC Palliat Care. 2017;16. 4–115. doi:10.1016/j.medipa.2016.10.005 61. Payne S. White paper on improving support for family carers in 69. Costa V, Earle CC, Esplen MJ, et al. The determinants of home and palliative care: part 1. Eur J Palliat Care. 2010;17:238–245. nursing home death: a systematic review and meta-analysis. BMC 62. Sociedad Española de Cuidados Paliativos. Monografías SECPAL. Palliat Care. 2016;15(1):8. Trabajo social en cuidados paliativos. 2015. 171 p. 63. Sandsdalen T, Wilde-Larsson B, Grøndahl VA. Patients’ perceptions of the quality of palliative care and satisfaction – a cluster analysis. J Multidiscip Healthc. 2019;12:903–915. doi:10.2147/JMDH.S22 0656 Journal of Multidisciplinary Healthcare Dovepress Publish your work in this journal The Journal of Multidisciplinary Healthcare is an international, peer- covers a very wide range of areas and welcomes submissions from reviewed open-access journal that aims to represent and publish practitioners at all levels, from all over the world. The manuscript research in healthcare areas delivered by practitioners of different management system is completely online and includes a very quick and disciplines. This includes studies and reviews conducted by multi- fair peer-review system. Visit http://www.dovepress.com/testimonials. disciplinary teams as well as research which evaluates the results or php to read real quotes from published authors. conduct of such teams or healthcare processes in general. The journal Submit your manuscript here: https://www.dovepress.com/journal-of-inflammation-research-journal submit your manuscript | www.dovepress.com Journal of Multidisciplinary Healthcare 2020:13 308 DovePress