International Journal of Environmental Research and Public Health Article Gender and Observed Complexity in Palliative Home Care: A Prospective Multicentre Study Using the HexCom Model Xavier Busquet-Duran 1, * , Eduard Moreno-Gabriel 2, * , Eva Maria Jiménez-Zafra 1 , Magda Tura-Poma 1 , Olga Bosch-DelaRosa 1 , Anna Moragas-Roca 1 , Susana Martin-Moreno 1 , Emilio Martínez-Losada 1 , Silvia Crespo-Ramírez 1 , Lola Lestón-Lado 1 , Núria Salamero-Tura 1 , Joana Llobera-Estrany 1 , Ariadna Salvago-Leiracha 1 , Ana Isabel López-García 1 , Josep María Manresa-Domínguez 2,3 , Teresa Morandi-Garde 1 , Eda Sara Persentili-Viure 1 and Pere Torán-Monserrat 2 1 Home Care Program, Granollers Support Team (PADES), Vallès Oriental Primary Care Service, Catalan Health Institute, 08520 Granollers, Spain; evajiza@gmail.com (E.M.J.-Z.); turapoma@hotmail.com (M.T.-P.); olga.bosch@creuroja.org (O.B.-D.); amoragas_roca@hotmail.com (A.M.-R.); susmartin0@hotmail.com (S.M.-M.); emlosada1974@gmail.com (E.M.-L.); silvia.crespo@creuroja.org (S.C.-R.); lestonlola@gmail.com (L.L.-L.); nsalamero.mn.ics@gencat.cat (N.S.-T.); jolloes@hotmail.com (J.L.-E.);  aln1982@hotmail.com (A.S.-L.); anaisabellg@hotmail.com (A.I.L.-G.); 12450@comb.cat (T.M.-G.);  eda.persentili@creuroja.org (E.S.P.-V.) 2 Research Support Unit Metropolitana Nord, Primary Care Research Institute Jordi Gol (IDIAPJGol), Citation: Busquet-Duran, X.; 08303 Mataró, Spain; jmanresa@idiapjgol.info (J.M.M.-D.); ptoran.bnm.ics@gencat.cat (P.T.-M.) Moreno-Gabriel, E.; Jiménez-Zafra, 3 Department of Nursing, Autonomous University of Barcelona, 08193 Barcelona, Spain E.M.; Tura-Poma, M.; * Correspondence: xbusquet@umanresa.cat (X.B.-D.); emoreno@idiapjgol.info (E.M.-G.) Bosch-DelaRosa, O.; Moragas-Roca, A.; Martin-Moreno, S.; Abstract: This study analyses gender differences in the complexity observed in palliative home care Martínez-Losada, E.; Crespo-Ramírez, through a multicentre longitudinal observational study of patients with advanced disease treated S.; Lestón-Lado, L.; et al. Gender and by palliative home care teams in Catalonia (Spain). We used the HexCom model, which includes Observed Complexity in Palliative six dimensions and measures three levels of complexity: high (non-modifiable situation), medium Home Care: A Prospective (difficult) and low. Results: N = 1677 people, 44% women. In contrast with men, in women, cancer Multicentre Study Using the HexCom Model. Int. J. Environ. Res. Public was less prevalent (64.4% vs. 73.9%) (p < 0.001), cognitive impairment was more prevalent (34.1% vs. Health 2021, 18, 12307. https:// 26.6%; p = 0.001) and professional caregivers were much more common (40.3% vs. 24.3%; p < 0.001). doi.org/10.3390/ijerph182312307 Women over 80 showed less complexity in the following subareas: symptom management (41.7% vs. 51,1%; p = 0.011), emotional distress (24.5% vs. 32.8%; p = 0.015), spiritual distress (16.4% vs. 26.4%; Academic Editors: Alessandra p = 0.001), socio-familial distress (62.7% vs. 70.1%; p = 0.036) and location of death (36.0% vs. 49.6%; Casuccio, Vincenzo Restivo and p < 0.000). Men were more complex in the subareas of “practice” OR = 1.544 (1.25–1.90 p = 0.000) Claudio Costantino and “transcendence” OR = 1.52 (1.16–1.98 p = 0.002). Observed complexity is related to male gender in people over 80 years of age. Women over the age of 80 are remarkably different from their male Received: 8 October 2021 counterparts, showing less complexity regarding care for their physical, psycho-emotional, spiritual Accepted: 20 November 2021 and socio-familial needs. Published: 23 November 2021 Keywords: end-of-life; gender; palliative care; home care; complexity Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affil- iations. 1. Background There is currently a certain consensus that, beyond the vital prognosis or the disease, the backbone of palliative care should be the level of care complexity required by the Copyright: © 2021 by the authors. person with advanced disease [1]. Complexity emerges from the interdependence between Licensee MDPI, Basel, Switzerland. those elements involved in each case, yielding non-linearity, blurriness and chaoticity [2]. This article is an open access article This means that complexity goes beyond the needs of independent physical, psychological, distributed under the terms and social and spiritual domains, and includes how patients interact with their families and conditions of the Creative Commons professionals and how services respond to their needs [3,4]. Attribution (CC BY) license (https:// The complexity and uniqueness of each patient and each situation calls for an open and creativecommons.org/licenses/by/ multiple approach, bearing in mind that the application of conventional approaches—such 4.0/). as reductionism and compartmentalisation—can be potentially counterproductive [5]. Int. J. Environ. Res. Public Health 2021, 18, 12307. https://doi.org/10.3390/ijerph182312307 https://www.mdpi.com/journal/ijerph Int. J. Environ. Res. Public Health 2021, 18, 12307 2 of 11 To this end, a systemic understanding of these situations emphasises the ecological framework in which they unfold [6], taking into account the interactions between the people who make up the unit to be treated, and between it and their care, socioeconomic and cultural environment, as well as their evolution over time [7]. The history of a complex system evolves permanently, linked to its context and its changes [8]. Over time, androcentrism in biomedical sciences has invisibilised women, assimilating them to men [9]. To give just one example, gender differences in opiate receptors are not taken into account, and women and men are prescribed indistinctly [10]. Unfortunately, this gender bias also affects social research. As Carol Gilligan noted, Kohlberg’s foundational work on moral development drew exclusively on studying male children, yet it has strongly influenced bioethics [3,11]. Standing at the crossroads of biomedical and social research and practice, palliative care has not escaped this tendency to ignore women’s singularities. For instance, Gott et al. have recently shown that while cancer guidelines recommend an early administration of palliative care, women have shown lesser improvements in quality of life and emotional status than men [12]. Similarly, one of the most prevalent and severe symptoms in women, asthenia, is rarely registered in clinical records. In a study conducted in two Swedish hospitals, 76% of the 720 people treated in palliative care units reported having asthenia; however, only 19% of the clinical records contained this symptom [13]. Additionally, this study shows that women need to report higher levels of pain than men in order for it to be registered [13]. As a result of this emerging evidence, the status quo of considering the palliative care patients “male by default” has recently been contested [12,14]. Furthermore, this bias is compounded as it coexists with other stereotypical depictions of men and women. These exclude men from activities related to care and assume care expertise and selflessness in women [15]. Currently, there is a lack of studies on these gender dynamics in the practice of pal- liative home care. In this article, we explore the role of gender in the process of defining the complexity of each case. To do so, we draw on the Hexagon of Complexity (Hex- Com) [16,17], which defines complexity as the gap between the needs of the patient and available resources [4], registering it as a key element in the practice of palliative care [18]. 2. Objectives Our objectives were to analyse differences by gender in the complexity of patients registered by a home palliative care team and describe the role of age in these differences. 3. Methods Design: Longitudinal observational study of a multicentre cohort. Population: Patients requiring advanced illness and/or end-of-life treatment provided by home care support teams in Catalonia (PADES) [19]. Inclusion/exclusion criteria: Patients requiring advanced illness and/or end-of-life treatment provided by PADES teams in their own home. Patients receiving care in a resi- dential institution were excluded. Consecutive sampling was used during the recruitment period (January 2016–December 2019) to assign the patients who met the inclusion criteria to any of the PADES teams who agreed to participate in the study. Complexity was assessed after the demise of the patient by the interdisciplinary PADES teams using the HexCom model. HexCom includes six dimensions (clinical, psychological, spiritual, social/family, ethical and death-related) and 18 subareas, with three levels of complexity: low, medium and high. High complexity occurs when the team cannot respond to the need and has to refer the case and/or assume that they can only act as support. Medium complexity occurs when the management is considered difficult and requires the support of other services. In cases of low complexity, the need of the patient and/or family can be easily managed (Table 1). The HexCom model presents a high internal consistency (Cronbach alpha > 0.80) and stability (test-retest: weighted kappa > 0.80), and usefulness for oncological and non- Int. J. Environ. Res. Public Health 2021, 18, 12307 3 of 11 oncological patients, regardless of the stage of their condition and for all levels of care (agreement between evaluators: kappa weighted > 0.80) [20]. The apparent validity shows a high level of agreement, with a content validity index (CVI-I) over 0.92 for the model and over 0.80 for all the derived instruments [17,21]. A recently published systematic review considers the HexCom model one of the most comprehensive for assessing complexity [18]. Table 1. The HexCom model. HexCom-Clin2019 Model for the care of people with advanced disease and/or end of life situation. Extended version for the assessment of needs and resources. OBSERVED CARE COMPLEXITY. NEEDS: Identify the patient’s areas of discomfort and relate it to the possibility of response from the service. Mark the level of complexity of the affected areas: L Low, M Medium, H High. Mark N for areas Not evaluated/Not applicable. COMPLEXITY AND INTERPRETATION LEVELS: L—Low (little difficulty). Guarantees of being able to attend to the situation with the resources of the service. M—Medium (moderate difficulty). Guarantees of taking on the situation with the support of other professionals and/or specialised teams. H—High (refractory difficulty). Little chance of change. It is necessary to escort and/or probably refer to another resource/level of care. Area Sub-Area N L M H Physical discomfort due to symptoms (pain, dyspnoea...) and/or injuries PHYSICAL CLINIC (tumorous ulcer...). THERAPEUTICS Difficulty in adherence to prescriptions and/or access to drugs/techniques. Psychological vulnerability: rigid personality traits with difficulty adapting to changes (perfectionism, thoroughness, control...), or psychopathology (alcoholism, PERSONALITY PSYCHO- drug addiction, psychiatric disease, dementia with behavioural disturbance, EMOTIONAL delirium...). Maladaptive emotional distress (intense, persistent, interfering with relationships EMOTIONAL and functionality). Deep distress with feelings of rupture due to illness, with difficulty finding SENSE meaning in the situation, feelings of incoherence with the actions and decisions taken throughout life. Deep distress with isolation and rupture of relationships, feelings of guilt, does not SPIRITUAL CONNECTION feel at peace with others or that they are one of them, difficulty forgiving, inability to use insight. Deep distress with difficulty facing everything that will come, in the face of the TRANSCENDENCE unknown: panic at dying, at disappearing, the future of those left, difficulty seeing what they will leave, feelings of injustice. RELATIONAL Relational distress in the family environment that makes patient care difficult. Emotional maladjustment of the caregiver/s (intense, persistent, hindering EMOTIONAL relationships and functionality) and which makes patient care difficult. SOCIAL AND Distress due to difficulty in managing the basic needs of the patient (hygiene, food, PRACTICE FAMILY safety...). EXTERNAL Distress due to the lack of effective external support for the cohabiting nucleus. Financial distress and/or difficulties in hiring external help and/or accessing MONEY resources. Distress due to difficulties in the management of information concerning diagnosis INFORMATION and/or prognosis. CLINICAL Difficulties in clinical decision making (adequacy of diagnostic and/or therapeutic ETHICS DECISIONS effort). DESIRE TO Desire to advance death (DAD) in any degree: thought, intention, decision, plan ADVANCE DEATH and/or explicit request. Difficulties in planning the place to die (no agreement between patient-caregiver) DIRECT LOCATION or request to change location. RELATIONSHIP SITUATION IN WITH Difficulties in managing the dying process (maladaptive denial of the situation, THE LAST DAYS DEATH/DYING refractory symptoms, difficult sedation). (LDS) PROCESS MOURNING Risk factors during mourning. COMPLEXITY LEVEL: The highest observed in any of the affected sub-areas: Disease groups: Medical diagnosis (ICD-10) and advanced disease groups: cancer, advanced chronic organ failure, advanced neurological disease, dementia and geriatric frailty/multimorbidity. The PADES team had to agree on the main diagnosis associated with death. Socio-demographic data: Age; gender; relationship with caregiver: partner, yes or no; professional caregiver: yes or no. Patient status: Functional status (Barthel index) and mental status (Pfeiffer test). Int. J. Environ. Res. Public Health 2021, 18, 12307 4 of 11 Procedure: To standardise data collection, the 43 PADES teams (74.3% teams accepted our invitation to participate) received 10 h of face-to-face training, a user guide, and were able to call the researchers during fieldwork if necessary. Statistical analysis: Gender (female or male) was analysed in relation to complexity, using a logistic regression analysis, adjusted for age. Each specific subarea was considered for the analysis. Except for length of care, all variables analysed were categorical and are described with their absolute and relative frequencies. To compare proportions, we used Pearson’s Chi Square test. The significance level was set at p ≤ 0.05. SPSS (IBM, Armonk, NY, USA) for Windows statistical package, version 25.0, was used for all analyses. Ethics Committee Approval: The study was approved by the Clinical Research Ethics Committee of the Institute for Research in Primary Care (IDIAP) Jordi Gol (registration number P15/171) and by the Clinical Research Ethics Committees of all participating centres. All participants read and signed an informed consent form. 4. Results A total of 1677 patients were recruited (44% women) (Table 2). Only 19% patients were under 65 years of age. In the group over 80 years, 52% patients were women (52%) (Table 2). In the group of women, there were fewer cancer patients (64.4% vs. 73.9%) (p < 0.001), more cognitive impairment (34.1% vs. 26.6%; p = 0.001), less partners as primary caregivers (25.2% vs. 64.5%; p < 0.001) and more professional caregivers (40.3% vs. 24.3%; p < 0.001) Table 2. Key characteristics stratified by gender and age groups N (%). ≤80 Years N: 892 (53.2%) >80 Years N: 785 (46.8%) Total N: 1677 Women Men p Women Men p Women Men p 326 (36.5%) 566 (63.5%) 410 (52.2%) 375 (47.8%) 736 (43.9%) 941 (56.1%) Type a 0.664 0.015 0.000 Cancer 260 (79.8%) 469 (82.9%) 214 (52.2%) 226 (60.3%) 474 (64.4%) 695 (73.9%) Organ failure 28 (8.6%) 48 (8.5%) 85 (20.7%) 85 (22.7%) 113 (15.4%) 133 (14.1%) Neurologic 16 (4.9%) 23 (4.1%) 26 (6.3%) 11 (2.9%) 42 (5.7%) 34 (3.6%) Dementia 14 (4.3%) 16 (2.8%) 65 (15.9%) 40 (10.7%) 79 (10.7%) 56 (6.0%) Frailty 8 (2.5%) 10 (1.8%) 20 (4.9%) 13 (3.5%) 28 (3.8%) 23 (2.4%) Functional impairment b 267 (81.9%) 431 (76.1%) 0.045 397 (96.8%) 338 (90.1%) 0.000 664 (90.2%) 769 (81.7%) 0.000 Cognitive impairment c 67 (20.6%) 113 (20.0%) 0.833 184 (44.9%) 137 (36.5%) 0.018 251 (34.1%) 250 (26.6%) 0.001 PADES assistance in days d 43 (16–105) 39 (15–93) 0.314 39 (12–106) 31 (11–68) 0.038 41 (14–105) 35 (14–87) 0.077 Caregiver: partner 149 (46.6%) 431 (76.7%) 0.000 34 (8.4%) 169 (45.9%) 0.000 183 (25.2%) 600 (64.5%) 0.000 Professional caregiver 65 (21.2%) 69 (12.9%) 0.002 218 (54.9%) 149 (41.2%) 0.000 283 (40.3%) 218 (24.3%) 0.000 Notes: a Team agreement on the cause of death in cases with multimorbidity. b Barthel Index < 100. c Pfeiffer Test > 2 errors. d Median and Quartiles 1–3. PADES (Home Care Program, Support Team). As a result of statistically analysing the six dimensions of complexity as a whole, observed complexity was significantly lower in women than in men in all areas except for ethics (Table 3). The dimensions with the largest differences (around 10%) were the clinical, the spiritual and death (Figure 1). These differences in complexity occurred only in patients over the age of 80. Women over 80 years of age presented less complexity than men in the management of symptoms (41.7% vs. 51.1%; p = 0.011), of psycho-emotional (24.5% vs. 32.8%; p = 0.015), spiritual (16.4% vs. 26.4%; p = 0.001) and socio-familial distress (62.7% vs. 70.1%; p = 0.036), and in relation to the location of the death (36.0% versus 49.6%; p < 0.000). In the group of 80 years and under, the only subarea with a statistically significant difference was transcendence, which relates to fear of death or the future, with less complexity detected for women than for men (24.6% versus 31, 1%; p = 0.046). Logistic regression (Table 4) shows that people over 80 are less complex in all subareas except for the desire to accelerate death OR = 1.16 (0.79–1.71 p = 0.54), and that men are more complex especially in the socio-family subarea “practice” OR = 1.544 (1.25–1.90 p = 0.000) and the spiritual subarea “transcendence” OR = 1.52 (1.16–1.98 p = 0.002). Int. J. Environ. Res. Public Health 2021, 18, 12307 5 of 11 Table 3. Evaluation of Complexity: Includes patients with medium or high complexity. N (%). Gender differences adjusted by age. ≤80 Years >80 Years Total Women Men p Women Men p Women Men p Clinical Complexity 198 (65.6%) 366 (68.2%) 0.442 166 (45.0%) 202 (57.4%) 0.001 364 (54.2%) 568 (63.9%) 0.000 Physical 175 (57.9%) 342 (63.7%) 0.101 154 (41.7%) 180 (51.1%) 0.011 329 (49.0%) 522 (58.7%) 0.000 Therapeutical 130 (43.0%) 203 (37.9%) 0.142 101 (27.4%) 119 (33.8%) 0.061 231 (34.4%) 322 (36.3%) 0.453 Psychological 156 (52.3%) 297 (56.1%) 0.293 129 (36.3%) 146 (42.0%) 0.127 285 (43.6%) 443 (50.5%) 0.008 Complexity Personality 72 (23.9%) 154 (28.7%) 0.132 82 (22.3%) 76 (21.7%) 0.823 154 (23.1%) 230 (25.9%) 0.193 Emotional 129 (42.9%) 257 (47.9%) 0.156 90 (24.5%) 115 (32.8%) 0.015 219 (32.8%) 372 (41.9%) 0.000 Spiritual Complexity 109 (36.5%) 221 (41.8%) 0.133 59 (16.4%) 91 (26.4%) 0.001 168 (25.5%) 312 (35.7%) 0.000 Meaning 82 (27.2%) 169 (31.5%) 0.194 42 (11.4%) 70 (19.9%) 0.002 124 (18.6%) 239 (26.9%) 0.000 Connection 36 (12.0%) 70 (13.1%) 0.646 21 (5.7%) 35 (10.0%) 0.035 57 (8.5%) 105 (11.8%) 0.036 transcendence 74 (24.6%) 167 (31.1%) 0.046 28 (7.6%) 47 (13.4%) 0.012 102 (15.3%) 214 (24.1%) 0.000 Socio-familial 231 (76.7%) 414 (77.2%) 0.870 230 (62.7%) 246 (70.1%) 0.036 461 (69.0%) 660 (74.4%) 0.019 Complexity Relational 71 (23.6%) 128 (23.8%) 0.935 71 (19.3%) 70 (19.9%) 0.840 142 (21.3%) 198 (22.3%) 0.623 Emotional 165 (54.8%) 299 (55.8%) 0.787 125 (34.1%) 142 (40.5%) 0.076 290 (43.4%) 441 (49.7%) 0.014 Practical 137 (45.5%) 260 (48.6%) 0.391 100 (27.2%) 159 (45.3%) 0.000 237 (35.5%) 419 (47.3%) 0.000 External 157 (52.2%) 286 (53.4%) 0.739 170 (46.2%) 186 (53.0%) 0.068 327 (48.9%) 472 (53.2%) 0.090 Financial 59 (19.6%) 109 (20.3%) 0.799 32 (8.7%) 36 (10.3%) 0.489 91 (13.6%) 145 (16.3%) 0.142 Ethical Complexity 84 (28.0%) 149 (28.2%) 0.959 80 (22.3%) 77 (22.5%) 0.942 164 (24.9%) 226 (25.9%) 0.637 Information 32 (10.6%) 63 (11.8%) 0.623 23 (6.3%) 34 (9.7%) 0.088 55 (8.2%) 97 (10.9%) 0.075 STE 61 (20.3%) 96 (17.9%) 0.402 65 (17.7%) 47 (13.4%) 0.111 126 (18.9%) 143 (16.1%) 0.157 DHD 20 (6.6%) 37 (6.9%) 0.887 25 (6.8%) 30 (8.5%) 0.382 45 (6.7%) 67 (7.6%) 0.537 Complexity with Death 230 (76.4%) 431 (80.4%) 0.173 181 (49.3%) 222 (63.2%) 0.000 411 (61.5%) 653 (73.6%) 0.000 Location 190 (63.1%) 356 (66.4%) 0.337 132 (36.0%) 174 (49.6%) 0.000 322 (48.2%) 530 (59.8%) 0.000 SLD 51 (16.9%) 101 (18.8%) 0.494 54 (14.7%) 50 (14.2%) 0.858 105 (15.7%) 151 (17.0%) 0.492 Mourning 151 (50.2%) 238 (44.4%) 0.109 80 (21.8%) 87 (24.8%) 0.343 231 (34.6%) 325 (36.6%) 0.402 Notes: STE, suitability of treatment efforts; DHD, desire to hasten death; SLD, situation during last days of life. Table 4. Logistic regression analysis to determine the complexity odds ratio by gender, adjusting for age. >80 Years Gender: Man OR (CI95%) p OR (CI95%) p Clinical Complexity 0.53 (0.43–0.65) 0.000 1.36 (1.11–1.68) 0.004 Physical 0.56 (0.46–0.69) 0.000 1.36 (1.11–1.67) 0.003 Therapeutical 0.67 (0.54–0.83) 0.000 1.02 (0.82–1.26) 0.862 Psychological Complexity 0.54 (0.44–0.67) 0.000 1.21 (0.98–1.49) 0.070 Personality 0.78 (0.61–0.98) 0.035 1.12 (0.89–1.43) 0.333 Emotional 0.49 (0.39–0.60) 0.000 1.34 (1.08–1.66) 0.008 Spiritual Complexity 0.43 (0.34–0.54) 0.000 1.45 (1.15–1.82) 0.001 Meaning 0.45 (0.35–0.58) 0.000 1.45 (1.13–1.87) 0.003 Connection 0.61 (0.43–0.86) 0.005 1.34 (0.95–1.88) 0.098 transcendence 0.31 (0.23–0.41) 0.000 1.52 (1.16–1.98) 0.002 Socio-familial Complexity 0.60 (0.48–0.75) 0.000 1.21 (0.97–1.52) 0.098 Relational 0.79 (0.62–1.01) 0.057 1.02 (0.80–1.31) 0.846 Emotional 0.49 (0.40–0.60) 0.000 1.16 (0.94–1.43) 0.159 Practical 0.66 (0.54–0.81) 0.000 1.54 (1.25–1.90) 0.000 External 0.89 (0.73–1.09) 0.272 1.17 (0.95–1.43) 0.132 Financial 0.42 (0.31–0.57) 0.000 1.09 (0.82–1.46) 0.544 Ethical Complexity 0.74 (0.58–0.94) 0.012 1.01 (0.80–1.28) 0.931 Information 0.70 (0.49–0.99) 0.046 1.30 (0.91–1.85) 0.144 STE 0.77 (0.59–1.01) 0.061 0.79 (0.61–1.04) 0.092 DHD 1.16 (0.79–1.71) 0.454 1.16 (0.78–1.72) 0.470 Complexity with Death 0.36 (0.29–0.45) 0.000 1.53 (1.22–1.91) 0.000 Location 0.41 (0.34–0.51) 0.000 1.42 (1.15–1.75) 0.001 SLD 0.77 (0.58–1.01) 0.062 1.06 (0.80–1.39) 0.693 Mourning 0.35 (0.28–0.43) 0.000 0.93 (0.75–1.16) 0.520 NOTES: STE, suitability of treatment efforts; DHD, desire to hasten death; SLD, situation during last days of life. OR(CI95%): odds ratio and 95% confidence interval. DHD 1.16 (0.79–1.71) 0.454 1.16 (0.78–1.72) 0.470 Complexity with Death 0.36 (0.29–0.45) 0.000 1.53 (1.22–1.91) 0.000 Location 0.41 (0.34–0.51) 0.000 1.42 (1.15–1.75) 0.001 SLD 0.77 (0.58–1.01) 0.062 1.06 (0.80–1.39) 0.693 Int. J. Environ. Res. PublicMourning Health 2021, 18, 12307 0.35 (0.28–0.43) 0.000 0.93 (0.75–1.16) 0.520 6 of 11 NOTES: STE, suitability of treatment efforts; DHD, desire to hasten death; SLD, situation during last days of life. OR(CI95%): odds ratio and 95% confidence interval. Women Men p = 0.000 p = 0.008 p = 0.000 p = 0.019 p = 0.637 p = 0.000 80.00% 74.40% 73.60% 69.00% 70.00% 63.90% 61.50% 60.00% 54.20% 50.50% 50.00% 43.60% 40.00% 35.70% 30.00% 25.50% 24.90% 25.90% 20.00% 10.00% 0.00% Clinical Complexity Psychological Spiritual Complexity Socio-familial Ethical Complexity Death-Related Complexity Complexity Complexity Figure 1. Evaluation of Complexity: Includes patients with medium or high complexity. Gender differences. Figure 1. Evaluation of Complexity: Includes patients with medium or high complexity. Gender differences. 5.5.Discussion Discussion The results of this study highlight important gender differences in observed com- The results of this study highlight important gender differences in observed com- plexity in patients from palliative home care over 80 years of age. In this group, there are plexity in patients from palliative home care over 80 years of age. In this group, there are more women who, compared with men, have a lower prevalence of cancer, more cogni- more women who, compared with men, have a lower prevalence of cancer, more cognitive tive impairment, less partners as primary caregivers and more caregivers who are pro- impairment, less partners as primary caregivers and more caregivers who are professional. fessional. The complexity observed by the professionals in this group of women was The complexity observed by the professionals in this group of women was lower than lower than in men regarding location of death, management of symptoms and psy- in men regarding location of death, management of symptoms and psycho-emotional, cho-emotional, spiritual and socio-familial distress. spiritual and socio-familial distress. Currently, more men than women require specialised home palliative care (the Currently, male/female more men proportion than women of people require requiring specialised palliative home carehome is 52%palliative carein(the versus 48%), male/female proportion of people requiring palliative home care is 52% agreement with the literature and with predictions of the World Health Organisationversus 48%), in agreement with the literature and with predictions of the World Health Organisation based on the different causes of death according to gender [21]. However, from the age of 80 onwards, the proportion of women increases, with more women in the group of the very elderly [22]. According to Etkind et al. [22], dementia is amongst common causes of death in women in the very elderly group and will be, alongside cancer, the main drivers of a marked increase in the demand for palliative care. Observed complexity is higher for both men and women under 80 years of age. The inverted association between age and complexity, also observed in other studies [23], may result from a greater acceptance of death by older adults and their families. Additionally, older people with cancer tend to report less pain and negative psychosocial impact [24]. When studying patients with breast cancer, young women present more psychological distress, poorer quality of life and greater difficulties with their partners compared to older ones [25]. Importantly, the association between complexity, gender and age in relation with home palliative care agrees with recent findings showing that the proportion of hospital deaths decreases with increasing age and is higher among men than women [26], and that fewer end-of-life location changes are reported in women [27]. Finally, we should underscore that the subgroup of women over 80 years shows less complexity. In the Catalan context, this could be explained by the resilience of this subgroup, which has endured wars, post-war hardship, dictatorship, emigration and widowhood, and have been great fighters and caregivers. In addition, this could be related to different approaches to end of life. Most women have lost their partners (only 8.4% have their partner as primary caregiver versus 45.9% of men), and might have accepted that death is the next step in their biography, adopting coping strategies focused on problem solving and help seeking, whereas men draw more on avoidance and disengagement [28]. Int. J. Environ. Res. Public Health 2021, 18, 12307 7 of 11 Similarly, while women actively participate in doctor–patient communication, men acquire a passive role and often refuse to talk about problems related to death [29]. Likewise, women with advanced cancer develop a more accurate understanding of their disease than men do [30]. Women sign more advance directives, reject proposed treatments more often and tend to agree more to palliative care, while men demand more continuous palliative sedation or euthanasia [31,32]. In a recent study in the Mediterranean area, Tuca et al. [33] observed a higher prevalence of ethical dilemmas in men than in women. The higher prevalence of dementia (46.9% versus 36.5% of men) might also contribute to the lower levels of observed complexity in women. The impact of having a partner might partly explain these differences: emotional ties are crucial for older cancer patients, and male patients, unlike women, depend mainly on the social support of their partners [34]. Distress is enhanced in stressful situations when communication with the partner is dys- functional and presents negative dyadic coping patterns [17,35,36]. Moreover, having an elderly, fragile partner can increase the feeling of burden and distress [37]. Studies indicate that men and women face the end-of-life situation differently [29]. Normative gender roles often put men in fight mode and whereas women focus on seeking help, men tend to avoid and detach themselves from the problem at hand. It has been observed that while women actively engage in doctor–patient communication, men as- sume a passive role and often refuse to talk about issues related to death [30]. Similarly, women with advanced cancer develop a more accurate understanding of their disease, and acknowledge the advanced stage of their condition up to 6 times more than men [30]. According to our results, spirituality is more used by women than by men as a coping mechanism for extreme situations such as death. In our study, women show less fear of death and the future. Many studies conducted in various cultural settings [4] confirm a greater degree of spirituality and religiosity in women [34,38]. A Danish study with 6640 women cancer survivors observed that women showed more spiritual, religious and existential concerns (OR 1.38) and that these were related to existential questioning and guilt [39]. Existential questioning emerges in extreme situations. Feelings of guilt might be related to normative femininity, with subordination to the judgment of others, which is closely linked to low self-esteem, the pursuit of models of perfection and, consequently, to guilt [40]. Finally, we should emphasise that no differences were found between men and women in relation to ethics, even though the literature shows that while more women sign ad- vanced directives [32], reject more often the treatments proposed [41] and accept more readily the prescribed palliative care [31], more men request continuous palliative sedation and even euthanasia [42]. In a context like ours where euthanasia and medically assisted suicide are penalised, we anticipated more complexity in men. Strengths and Limitations Gender biases and inequalities exist at multiple levels of health research and practice, affecting each other’s significance [9,43]. For instance, our analysis has not considered the gender of the primary caregiver, even though we know that three out of four informal caregivers are women [28]. Moreover, we cannot rule out a potential gender bias in the observers, since 90.8% (196/216) of the researchers were women, and women might normalise and minimise the needs of older women. Some studies point at the relevance of the gender of the evaluator [29,44], even indicating that women with heart attacks have higher mortality rates when treated by male doctors. Additionally, female doctors use a closer communicative style and female nurses spend much more time than male nurses interacting with patients [45–47]. Lastly, we are still constrained by gender binarism, where the gold standard is male. Other genders have not been yet taken into account, and their perspectives should be incorporated in future studies. Intersectionality is one of the strengths of this study [14], as reflected in the multidi- mensional approach of the HexCom model. We avoided the unidimensional approach to understanding end-of-life circumstances, since an individual’s experiences are not shaped Int. J. Environ. Res. Public Health 2021, 18, 12307 8 of 11 “by a single axis of social division, whether by race, gender, or class, but by many axes that work together and influence each other” [12]. Another strength of the study is the interdisciplinarity of our teams, which undoubtedly provides a more accurate assessment of reality than the gaze of a single observer. We should also ask whether a change in traditional patterns is taking place. For instance, while the number of women caregivers is higher than men, a recent national survey conducted in Sweden indicated an equal number of men and women acting as informal caregivers [48]. The experienced gender inequities in home care should also be studied using qualitative methodology similarly to Sutherland’s approach [15], who asks the following straightforward question to patients, caregivers and professionals: “Do you think that the fact of being a man/woman affects your experience and, if so, how?” Finally, the role of spirituality by gender as a coping mechanism at the end of life should also be investigated. Our results aim to raise awareness of gender inequities amongst palliative care pro- fessionals to prevent pattern perpetuation, feelings of guilt and to provide unconditional support to the “obligated caregiver”. This is one of the most extensive and comprehensive series published, which underlines the lack of resources in home palliative care derived from the inequalities and iniquities inherent of a patriarchal and neo-liberal socio-political context [15], where power discourses favour individualism and efficiency. We strongly believe in the importance of raising awareness about these differences in the context of palliative home care as a crossroads of invisibilities: women with respect to men, the dying versus the healthy, the old with respect to the young, death with respect to life, the home with respect to the hospital. 6. Conclusions Our study highlights the need to address the social determinants of health with active and all-encompassing policies, as well as an intersectional viewpoint. That is, public health policies should not focus exclusively on the economic determinants, nor consider a gender perspective only and in isolation within organisational development plans or research programs. As we have shown, especially regarding men over 80 years old, gender stereotypes increase patients’ needs and the necessary resources to address them, insofar as these cultural representations normalise lacking coping strategies and a healthier acceptance of death. Consequently, developing a “pedagogy of death and dying” with a gender perspective and at a population level would be adequate. This would be particularly urgent and timely in the Spanish context, since the passage of the euthanasia law has brought to the fore a social debate on death and dying. Finally, more research that is inclusive is also needed, taking into account aspects such as non-binary categories and the gender of the formal and informal caregivers, who are key figures in palliative home care. Author Contributions: Conceptualization, X.B.-D., M.T.-P., E.M.-L. and L.L.-L.; methodology, X.B.-D., J.M.M.-D. and P.T.-M.; software, J.M.M.-D.; validation, J.M.M.-D. and P.T.-M.; formal analysis, J.M.M.-D. and P.T.-M.; investigation, X.B.-D., E.M.J.-Z., E.M.-L., O.B.-D., S.C.-R., E.S.P.-V., N.S.-T., J.L.-E., A.S.-L., T.M.-G., A.I.L.-G., A.M.-R. and S.M.-M.; resources, X.B.-D.; data curation, J.M.M.-D.; writing—original draft preparation, X.B.-D., E.M.-G. and J.M.M.-D.; writing—review and editing, X.B.-D., E.M.J.-Z., E.M.-G., O.B.-D., S.C.-R., E.S.P.-V., N.S.-T., J.L.-E., A.S.-L., T.M.-G., A.M.-R. and S.M.-M.; supervision, P.T.-M. and E.M.-G.; project administration, X.B.-D.; funding acquisition, X.B.-D. and P.T.-M. All authors have read and agreed to the published version of the manuscript. Funding: This study obtained partial funding from the University Institute for Primary Care Re- search IDIAP JGol (4R17/053) for the creation of the database and a research grant for the principal investigator (X.B.-D.). Institutional Review Board Statement: The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by the Institutional Review Board (or Ethics Committee) of Int. J. Environ. Res. Public Health 2021, 18, 12307 9 of 11 Institute for Research in Primary Care Jordi Gol (IDIAP Jordi Gol) (protocol code P15/177, approved 3 December 2015). Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. Data Availability Statement: The data presented in this study are available on request from the corresponding author. The data are not publicly available due to IDIAP Jordi Gol not storing personal health data in a public database. Acknowledgments: To Maria Jesús Micó for her efficiency, to Ingrid Búllich, and to Pau Sánchez of the Sociosanitary Plan of the Health Department, Generalitat de Catalunya. To participating PADES: Alt-Empordà, Alt-Maresme (Blanes), Bages, Baix-Camp, Baix-Litoral (Sant Boi), Baix-Penedès (Vendrell), Cerdanya, Cornellà, Delta-Hospitalet Sud, El Prat De LLobregat (Delta del Llobregat), Garraf (Vilanova i La Geltrú), Geriàtric (Sabadell), Gironés i Pla de l’Estany, Gràcia, HortaGuinardó, Baix Llobregat-Litoral SAP Delta, Les Corts, Mataró, Martorell, Mollet, Nou Barris, Pallars, Pal·liació Cerdanyola, Pal·liació Sabadell, Pius Hospital de Valls, Pla d’Urgell-Garrigues, Reus, Ripollès, Sant Cugat, Sant Feliu de Llobregat, Sant Martí Nord, Santa Coloma de Gramenet, Santa Susanna Caldes de Montbui, Segrià Sud de Lleida, Selva Marítima (Blanes), Tarragona, Tarragonès, Tortosa, Badalona- Sant Adrià, Igualada-Anoia, Baix Ebre-Montsià, Dreta Eixample, Sants-Montjuic. 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