Gender and Observed Complexity in Palliative Home Care: A Prospective Multicentre Study Using the HexCom Model
Abstract
:1. Background
2. Objectives
3. Methods
4. Results
5. Discussion
Strengths and Limitations
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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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 | |
CLINIC | PHYSICAL | Physical discomfort due to symptoms (pain, dyspnoea...) and/or injuries (tumorous ulcer...). | ||||
THERAPEUTICS | Difficulty in adherence to prescriptions and/or access to drugs/techniques. | |||||
PSYCHO-EMOTIONAL | PERSONALITY | Psychological vulnerability: rigid personality traits with difficulty adapting to changes (perfectionism, thoroughness, control...), or psychopathology (alcoholism, drug addiction, psychiatric disease, dementia with behavioural disturbance, delirium...). | ||||
EMOTIONAL | Maladaptive emotional distress (intense, persistent, interfering with relationships and functionality). | |||||
SPIRITUAL | SENSE | Deep distress with feelings of rupture due to illness, with difficulty finding meaning in the situation, feelings of incoherence with the actions and decisions taken throughout life. | ||||
CONNECTION | Deep distress with isolation and rupture of relationships, feelings of guilt, does not feel at peace with others or that they are one of them, difficulty forgiving, inability to use insight. | |||||
TRANSCENDENCE | Deep distress with difficulty facing everything that will come, in the face of the unknown: panic at dying, at disappearing, the future of those left, difficulty seeing what they will leave, feelings of injustice. | |||||
SOCIAL AND FAMILY | RELATIONAL | Relational distress in the family environment that makes patient care difficult. | ||||
EMOTIONAL | Emotional maladjustment of the caregiver/s (intense, persistent, hindering relationships and functionality) and which makes patient care difficult. | |||||
PRACTICE | Distress due to difficulty in managing the basic needs of the patient (hygiene, food, safety...). | |||||
EXTERNAL | Distress due to the lack of effective external support for the cohabiting nucleus. | |||||
MONEY | Financial distress and/or difficulties in hiring external help and/or accessing resources. | |||||
ETHICS | INFORMATION | Distress due to difficulties in the management of information concerning diagnosis and/or prognosis. | ||||
CLINICAL DECISIONS | Difficulties in clinical decision making (adequacy of diagnostic and/or therapeutic effort). | |||||
DESIRE TO ADVANCE DEATH | Desire to advance death (DAD) in any degree: thought, intention, decision, plan and/or explicit request. | |||||
DIRECT RELATIONSHIP WITH DEATH/DYING PROCESS | LOCATION | Difficulties in planning the place to die (no agreement between patient-caregiver) or request to change location. | ||||
SITUATION IN THE LAST DAYS (LDS) | Difficulties in managing the dying process (maladaptive denial of the situation, refractory symptoms, difficult sedation). | |||||
MOURNING | Risk factors during mourning. | |||||
COMPLEXITY LEVEL: The highest observed in any of the affected sub-areas: |
≤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 |
≤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 Complexity | 156 (52.3%) | 297 (56.1%) | 0.293 | 129 (36.3%) | 146 (42.0%) | 0.127 | 285 (43.6%) | 443 (50.5%) | 0.008 |
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 Complexity | 231 (76.7%) | 414 (77.2%) | 0.870 | 230 (62.7%) | 246 (70.1%) | 0.036 | 461 (69.0%) | 660 (74.4%) | 0.019 |
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 |
>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 |
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Busquet-Duran, X.; Moreno-Gabriel, E.; Jiménez-Zafra, E.M.; Tura-Poma, M.; Bosch-DelaRosa, O.; Moragas-Roca, A.; Martin-Moreno, S.; Martínez-Losada, E.; Crespo-Ramírez, S.; Lestón-Lado, L.; et al. Gender and Observed Complexity in Palliative Home Care: A Prospective Multicentre Study Using the HexCom Model. Int. J. Environ. Res. Public Health 2021, 18, 12307. https://doi.org/10.3390/ijerph182312307
Busquet-Duran X, Moreno-Gabriel E, Jiménez-Zafra EM, Tura-Poma M, Bosch-DelaRosa O, Moragas-Roca A, Martin-Moreno S, Martínez-Losada E, Crespo-Ramírez S, Lestón-Lado L, et al. Gender and Observed Complexity in Palliative Home Care: A Prospective Multicentre Study Using the HexCom Model. International Journal of Environmental Research and Public Health. 2021; 18(23):12307. https://doi.org/10.3390/ijerph182312307
Chicago/Turabian StyleBusquet-Duran, Xavier, Eduard Moreno-Gabriel, Eva Maria Jiménez-Zafra, Magda Tura-Poma, Olga Bosch-DelaRosa, Anna Moragas-Roca, Susana Martin-Moreno, Emilio Martínez-Losada, Silvia Crespo-Ramírez, Lola Lestón-Lado, and et al. 2021. "Gender and Observed Complexity in Palliative Home Care: A Prospective Multicentre Study Using the HexCom Model" International Journal of Environmental Research and Public Health 18, no. 23: 12307. https://doi.org/10.3390/ijerph182312307
APA StyleBusquet-Duran, X., Moreno-Gabriel, E., Jiménez-Zafra, E. M., Tura-Poma, M., Bosch-DelaRosa, O., Moragas-Roca, A., Martin-Moreno, S., Martínez-Losada, E., Crespo-Ramírez, S., Lestón-Lado, L., Salamero-Tura, N., Llobera-Estrany, J., Salvago-Leiracha, A., López-García, A. I., Manresa-Domínguez, J. M., Morandi-Garde, T., Persentili-Viure, E. S., & Torán-Monserrat, P. (2021). Gender and Observed Complexity in Palliative Home Care: A Prospective Multicentre Study Using the HexCom Model. International Journal of Environmental Research and Public Health, 18(23), 12307. https://doi.org/10.3390/ijerph182312307