Keywords
How to Cite
Abstract
The role of the patient’s family with chronic disease in advanced situation is of great importance in decision-making. The Go Wish Card (GWG) is a tool develo-ped to facilitate conversations about these aspects.
Aims: To identify the wishes and concerns of patients with chronic conditions and advanced chronic conditions from the perspective of family members, using the GWG as a enabling tool.
Method: Family members of patients admitted to a nursing home intermediate care unit and long stay unit are included. Sociodemographic characteristics were collected, and two instruments were used for data collection: the GWC and the short version of the Zarit Burden Interview. From the topics of the GWC, family members were asked to identify the ten most important and the least important. In addition, they were asked about the utility and appropriateness of the interview.
Results: The sample consisted of 4 men and 15 women, with an average age of 59.47 (SD: ± 11.8). The desires identified as the most important were «having my family with me» (84.2%), «being without pain» (78.8%), and «not dying alone» (63.2%). The interview was useful in 89.5% of the cases and appropriateness in 89.4%.
Conclusion: Facilitating encounters between family members of patients with advanced disease and professionals improves decision-making. The GWG is a useful and appropriate instrument to facilitate these interventions.
References
Aasmul, I., Husebo, B.S. y Flo, E. (2018). Description of an advance care planning intervention in nursing homes: outcomes of the process evaluation. BMC Geriatrics, 18, 26. doi:10.1186/s12877-018-0713-7
Abdul-Razzak, A., Heyland, D.K., Simon, J., Ghosh, S., Day, A.G. y You, J.J. (2017). Patient-family agreement on values and preferences for life-sustaining treatment: results of a multicentre observational study. BMJ Supportive & Palliative Care, 22 (July). doi:10.1136/bmjspcare-2016-001284
Altisent, R. (2013). Atención Primaria Planificación anticipada de la asistencia. Se necesita una revolución educativa. Atención Primaria, 45 (8), 402-403. doi: 10.1016/j.aprim.2013.08.001
Brazil, K., Carter, G., Cardwell, C., Clarke, M., Hudson, P., Froggatt, K. y Kernohan, W.G. (2018). Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial. Palliative Medicine, 32 (3), 603–612. doi:10.1177/0269216317722413
Bruce, A., Schreiber, R., Petrovskaya, O. y Boston, P. (2011). Longing for ground in a ground(less) world: a qualitative inquiry of existential suffering. BMC Nursing, 10 (1), 2. doi:10.1186/1472-6955-10-2
Delgado-Guay, M.O., Rodríguez-Núñez, A., De la Cruz, V., Frisbee-Hume, S., Williams, J., Wu, J. y Bruera, E. (2016). Advanced cancer patients’ reported wishes at the end of life: a randomized controlled trial. Supportive Care in Cancer, 24 (10), 4273-4281. doi:10.1007/s00520-016-3260-9
Dionne-Odom, J.N., Applebaum, A.J., Ornstein, K.A., Azuero, A., Warren, P.P., Taylor, R.A. y Bakitas, M.A. (2018). Participation and interest in support services among family caregivers of older adults with cancer. Psycho-Oncology, 27 (3), 969–976. doi:10.1002/pon.4603
Downey, L., Engelberg, R.A., Randall Curtis, J., Lafferty, W.E. y Patrick, D.L. (2009). Shared Priorities for the End-of-Life Period. J Pain Symptom Manage, 37 (2), 175-188. doi:10.1016/j.jpainsymman.2008.02.012
Fegg, M.J., Brandstätter, M., Kramer, M., Kögler, M., Haarmann-Doetkotte, S. y Borasio, G.D. (2010). Meaning in life in palliative care patients. Journal of Pain and Symptom Management, 40 (4), 502-509. doi:10.1016/j.jpainsymman.2010.02.010
Gómez-Batiste, X., Martínez-Muñoz, M., Blay, C., Amblàs, J., Vila, L., Costa, X. y Espinosa, J. 2012). Identifying patients with chronic conditions in need of palliative care in the general population: development of the NECPAL tool and preliminary prevalence rates in Catalonia. BMJ Supportive & Palliative Care, 0, 1-9. doi:10.1136/bmjspcare-2012-000211
Gort, A.M., March, J., Gómez, X., De Miguel, M., Mazarico, S. y Ballesté, J. (2005). Escala de Zarit reducida en cuidados paliativos. Medicina Clínica, 124 (17), 651-653. doi:10.1157/13074742
Huang, H., Chiu, T., Lee, L., Yao, C., Chen, C. y Hu, W. (2012). Family experience with difficult decisions in end-of-life care. Psycho-Oncology, 21 (May), 785-791. doi:10.1002/pon
Lankarani-Fard, A., Knapp, H., Lorenz, K.A., Golden, J.F., Taylor, A., Feld, J.E. y Asch, S.M. (2010). Feasibility of Discussing End-of-Life Care Goals with Inpatients Using a Structured, Conversational Approach: The Go Wish Card Game. Journal of Pain and Symptom Management, 39 (4), 637-643. doi:10.1016/j.jpainsymman.2009.08.011
March, J., Jordi, B., De, M.M., Xavier, G. y Silvia, M. (2005). Escala de Zarit reducida en cuidados paliativos. Medicina Clínica, 124 (17), 651-653. doi:10.1157/13074742
Menkin, E.S. (2007). Go Wish: a tool for end-of-life care conversations. Journal of Palliative Medicine, 10 (2), 297-303. doi:10.1089/jpm.2006.9983
Menkin, E.S. (2010). Nourishment While Fasting. Journal of Palliative Medicine, 13 (10), 1288-1289. doi:10.1089/jpm.2010.0138
Pérez-Agote, A. (2012). Cambio religioso en España: los avatares de la secularización. Madrid: Centro de Investigaciones Sociológicas.
Rietjens, J.A.C., Sudore, R.L., Connolly, M., Van Delden, J.J., Drickamer, M.A., Droger, M., Van derHaide, A., Heyland, D.K., Houttekier, D., Janssen, D.J.A., Orsi, L., Payne, S., Seymour, J., Jox, R.J. y Korfage, I.J. (2017). Definition and recommendations for advance care planning: An international consensus Supported by the European Association for Palliative Care. The Lancet Oncology, 18 (9), 543-551. doi:10.1016/ S1470-2045(17)30582-X
Simon, J., Porterfield, P., Raffin Bouchal, S. y Heyland, D. (2013). ‘Not yet’ and ‘Just ask’: barriers and facilitators to advance care planning--a qualitative descriptive study of the perspectives of seriously ill, older patients and their families. BMJ Supportive & Palliative Care, 5, 54-62. doi:10.1136/ bmjspcare-2013-000487
Stiefel, F., Krenz, S., Zdrojewski, C., Stagno, D., Fernandez, M., Bauer, J. y Fegg, M. (2008). Meaning in life assessed with the ‘Schedule for Meaning in Life Evaluation’ (SMiLE): a comparison between a cancer patient and student sample. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 16 (10), 1151-1155. doi:10.1007/ s00520-007-0394-9
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., McNeilly, M., Grambow, S., Parker, J. y Tulsky, J.A. (2001). Preparing for the End of Life: Preferences of Patients, Families, Physicians, and Other Care Providers. Journal of Pain and Symptom Management J Pain Symptom Manage, Vol. 22 (3), 727-737. doi:10.1016/S0885-3924(01)00334-7
Villavicencio-Chávez, C., Garzón-Rogríguez, C., Vaquero-Cruzado, J., Ortega-Carrillo, A., Crespo, S. y Loncan, P. (2018). Values and Wishes of Patients with Chronic Conditions (PCC) and Advanced Chronic Conditions (PACC) from Caregiver’s Point of View. Differences between Nursing Home and at Home. End-of-Life Discussions. Palliative Medicine, 32 (1_Suppl), 280. doi:10.1177/0269216318769196
Villavicencio-Chávez, C., Garzón-Rodríguez, C., Vaquero-Cruzado, J., Gracia, E., Torrens, A. y Loncan, P. (In-Press). Exploración de los Valores y Deseos de Pacientes con Enfermedad Crónica Avanzada y con Enfermedad Crónica Compleja. Conversaciones Acerca del Final de la Vida. Med. Palliat., 2018.
Villavicencio-Chávez, C. (2016). El Deseo de Adelantar la Muerte en Pacientes con Cáncer Avanzado. Barcelona: Universitat Internacional de Catalunya.
Walace, C.L. (2015). Family communication and decision making at the end of life: a literature review. Palliative and Supportive Care, 13, 815–825. doi:10.1017/S1478951514000388
Woodman, C., Baillie, J., Sivell, S. y Curie, M. (2016). The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence. BMJ Supportive & Palliative Care, 6, 418–429 doi:10.1136/bmjspcare-2014-000794