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The “La Caixa” Foundation and WHO Collaborating Center Spanish National Program for enhancing psychosocial and spiritual palliative care for patients with advanced diseases, and their families: Preliminary findings

Published online by Cambridge University Press:  15 August 2011

Xavier Gómez-Batiste ,
Montse Buisan ,
M. Pau González ,
David Velasco ,
Verónica de Pascual ,
Jose Espinosa ,
Anna Novellas ,
Marisa Martínez-Muñoz ,
Marc Simón  and
Candela Calle
...Show all authors
Xavier Gómez-Batiste*
Affiliation:
The “Qualy” End-of-Life Observatory/WHO Collaborating Center for Palliative Care Programs, Catalan Institute of Oncology, Barcelona, Spain
Montse Buisan
Affiliation:
Area of Social Integration, La Caixa Foundation, Obra Social La Caixa, Barcelona, Spain
M. Pau González
Affiliation:
The “Qualy” End-of-Life Observatory/WHO Collaborating Center for Palliative Care Programs, Catalan Institute of Oncology, Barcelona, Spain
David Velasco
Affiliation:
Area of Social Integration, La Caixa Foundation, Obra Social La Caixa, Barcelona, Spain
Verónica de Pascual
Affiliation:
Area of Social Integration, La Caixa Foundation, Obra Social La Caixa, Barcelona, Spain
Jose Espinosa
Affiliation:
The “Qualy” End-of-Life Observatory/WHO Collaborating Center for Palliative Care Programs, Catalan Institute of Oncology, Barcelona, Spain
Anna Novellas
Affiliation:
The “Qualy” End-of-Life Observatory/WHO Collaborating Center for Palliative Care Programs, Catalan Institute of Oncology, Barcelona, Spain
Marisa Martínez-Muñoz
Affiliation:
The “Qualy” End-of-Life Observatory/WHO Collaborating Center for Palliative Care Programs, Catalan Institute of Oncology, Barcelona, Spain
Marc Simón
Affiliation:
Area of Social Integration, La Caixa Foundation, Obra Social La Caixa, Barcelona, Spain
Candela Calle
Affiliation:
Catalan Institute of Oncology, Barcelona, Spain
Jaume Lanaspa
Affiliation:
Area of Social Integration, La Caixa Foundation, Obra Social La Caixa, Barcelona, Spain
William Breitbart
Affiliation:
Psychiatry Service, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York
*
Address correspondence and reprint requests to: Xavier Gómez-Batiste, The “Qualy” End-of-Life Observatory/WHO Collaborating Center for Palliative Care Programs, Catalan Institute of Oncology, Hospital Duràn-Reynals, Avda Granvia 199, 08907 Hospitalet (Barcelona), Spain. E-mail: [email protected]
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Abstract

Objective:

The psycho-social needs of patients with advanced chronic illness and their families include emotional, spiritual, and bereavement care. With a funding initiative by the La Caixa Foundation and design by the WHO Collaborating Center, we developed and implemented a program for the comprehensive care of terminally-ill individuals and their families, in Spain. The intent was to improve the psycho-social and spiritual dimensions of care, to generate experience and evidence, to explore models, and to act as catalyst in the Spanish National Strategy for Palliative Care.

Method:

We reviewed the process of design, implementation, and initial evaluation of the program at 18 months.

Results:

Thirty psycho-social teams’ (PST) acting as support teams projects were initiated. There were 120 full-time healthcare professionals appointed (58% clinical psychologists). These professionals received training through a comprehensive postgraduate course, and all used the same documentation. Some results were collated 18 months post-implementation. The total number of patients attended to was 10,954, and the number of relatives was 17,715. The preliminary clinical outcomes show a significant improvement in well-being, and a decrease in anxiety and insomnia, although there was a smaller impact on alleviating depression. Healthcare professionals collated results on satisfaction with palliative care (PC) services.

Significance of results:

Based on these preliminary results, we suggest that the PST can be a model of organization that is effective and efficient in improving the psycho-social and spiritual aspects of care of terminally ill patients. Further follow-up and evaluation with validated tools are the main goals for the immediate future.

Keywords

Psychosocial careSpiritual carecare of patients with advanced illnesses and their familiesPsychosocial servicesPsychosocial programsPalliative care services
Type
Original Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 3 , September 2011 , pp. 239 - 249
Copyright
Copyright © Cambridge University Press 2011

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References

REFERENCES

Agnew, A., Mankltelow, R., Taylor, B.J., et al. (2010). Bereavement needs assessment in specialist palliative care: a review of the literature. Palliative Medicine, 24, 46–59.CrossRefGoogle ScholarPubMed
Altshuler, J. (2005). Illness and loss within the family. In Loss, Change, and Bereavement in Palliative Care. Firth, P., Luff, G. & Oliviere, D. (eds). pp. 53–64. London: Open University Press.Google Scholar
Arranz, P., Barbero, J., Barreto, P., et al. (eds). (2003). Intervención emocional en cuidados paliativos: modelo y protocolos. Barcelona: Ariel; Modelos de Intervención http://www.iconcologia.net/catala/qualy/centre_descripcio.htm.Google Scholar
Balboni, T.A., Paulk, M.E., Balboni, M.J., et al. (2010). Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. Journal of Clinical Oncology, 28,445–452.CrossRefGoogle ScholarPubMed
Barreto, P., Bayés, R., Comas, M.D., et al. (1996). Assessment of the perception and worries in terminally ill patients in Spain. Journal of Palliative Care, 12, 43–46.CrossRefGoogle ScholarPubMed
Bayés, R. (2001). Psicología del sufrimiento y de la muerte. Barcelona: Martínez–Roca Editorial.Google Scholar
Benito, E. & Barbero, J. (2008). Espiritualidad en Cuidados Paliativos: la dimensión emergente. Medicina Paliativa, 15, 191–193.Google Scholar
Benito, E., Barbero, J., Payás, A. & Grupo de Trabajo sobre espiritualidad de la SECPAL. (2008). El acompañamiento espiritual en cuidados paliativos. Madrid: ARAN ediciones.Google Scholar
Breitbart, W. (2001). Spirituality and meaning in supportive care: spirituality – and meaning – centered group psychotherapy interventions in advanced cancer. Supportive Care in Cancer. doi:10.1007/s005200100289.CrossRefGoogle Scholar
Breitbart, W. (2006). The goals of palliative care: beyond symptom control. Palliative & Supportive Care, 4, 1–2.Google Scholar
Breitbart, W., Gibson, C., Poppito, S.R., et al. (2004). Psychotherapeutic interventions at the end of life: a focus on meaning and spirituality. Canadian Journal of Psychiatry, 49, 366–372.Google Scholar
Breitbart, W., Rosenfeld, B., Pessin, H., et al. (2000). Depression, hopelessness and desire for hastened death in terminally ill patients with cancer. Journal of the American Medical Association, 284, 2907–2911.CrossRefGoogle ScholarPubMed
Brugulat, P., de la Puente, M.L., Masachs, E., et al. (2008). La millora de l'atenció al final de la vida: la perspectiva dels familiars de pacients i dels professionals de la salut. Barcelona: Planificació i avaluació; 25. Generalitat de Catalunya, Departament de Salut.Google Scholar
Caraceni, A., Cherny, N., Fainsinger, R., et al. (2002). The Steering Committee of the EAPC Research Network. Pain measurement tools and methods in clinical research in palliative care: recommendations of an expert working group of the European Association of Palliative Care. Journal of Pain and Symptom Management, 23, 239–255.CrossRefGoogle Scholar
Carlsson, L.E. & Bultz, B.D. (2004). Efficacy and medical cost offset of psychosocial interventions in cancer care: making the case for economic analyses. Psycho-Oncology, 13, 837–849.CrossRefGoogle Scholar
Centeno, C., Noguera, A., Lopez, B., et al. (2004). Algunos instrumentos de evaluacion utilizados en Cuidados Paliativos (I): el cuestionario de evaluacion de sıntomas de Edmonton (ESAS). Medicina Paliativa (Madrid), 11, 239–245.Google Scholar
Center for Improving the Care of the Dying at the George Washington University. http://www.chcr.brown.edu/pcoc/toolkit.htm.Google Scholar
Chochinov, H.M. (2007). Dignity and the essence of medicine: The A, B, C, and D of dignity conserving care. BMJ, 335, 184–187.Google Scholar
Chochinov, H.M. & Cann, B.J. (2005). Interventions to enhance the spiritual aspects of dying. Journal of Palliative Care, 8 (Suppl 1), S103–115.Google ScholarPubMed
Chochinov, H.M., Hassard, T., McClement, S., et al. (2008). The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care. Journal of Pain and Symptom Management, 36, 559–571.CrossRefGoogle ScholarPubMed
ENCP Estrategia Cuidados Paliativos del Sistema Nacional de Salud. Ministerio Sanidad y Consumo, Madrid. (2007). www.estrategiaencuidadospaliativos.es.Google Scholar
Ferris, F.D., Balfour, H.M., Bowen, K., et al. (2002). A model to guide patient and family care: based on nationally accepted principles and norms of practice. Journal of Pain and Symptom Management, 4, 106–123.Google Scholar
Ferris, F., Gómez–Batiste, X., Furst, C.J., et al. (2007). Implementing quality palliative care. Journal of Pain and Symptom Management, 33, 533–541.Google Scholar
George, R. (2009). Suffering and healing – Our core business. Palliative Medicine, 23, 385–387.Google Scholar
Gómez–Batiste, X., de la Mata, I., Fernández, M, et al. (2002). Guia de criterios de calidad en Cuidados Paliativos. SECPAL, Madrid: Ministerio de Sanidad y Consumo.Google Scholar
Gómez–Batiste, X., Fernández, E., Lacasta, M.A., et al. (2008a). Guía SECPAL de prevención de “burnout” para profesionales de cuidados paliativos. Madrid: ARAN ediciones.Google Scholar
Gómez–Batiste, X., Ferris, F., Paz, S., et al. (2008b). How to ensure good quality palliative care: a Spanish Model. European Journal of Palliative Care, 15, 142–147.Google Scholar
Gómez–Batiste, X., Ferris, F., Paz, S. et al. (2008c). Ensure quality public health programmes. A Spanish Model. European Journal of Palliative Care, 15, 195–199.Google Scholar
Gómez–Batiste, X., Nabal Vicuña, M., Trelis Navarro, J., et al. (2008d). Evaluación cualitativa del desarrollo del proyecto Demostrativo OMS de Cuidados Paliativos de Cataluña a los 15 años de su implementación y propuestas de mejora. Medicina Poliativa (Madrid), 15, 293–300.Google Scholar
Gómez-Batiste, X., Paz, S., Porta–Sales, J., et al. (2009). Basic definitions, principles, and concepts on the organization of public health palliative care programmes and services. http://www.iconcologia.net.Google Scholar
Gómez–Batiste, X., Porta–Sales, J., Espinosa–Rojas, J., et al. (2010). Effectiveness of palliative care services in symptom control of patients with advanced terminal cancer: a Spanish multi-centered, prospective, quasi-experimental, pre-post study. Journal of Pain and Symptom Management, 40, 652–660.CrossRefGoogle Scholar
Gómez–Batiste, X., Porta–Sales, J., Paz. S., et al. (2008e). Palliative medicine: Models of organization. In Palliative Medicine. Walsh, D (ed). pp. 23–29. Philadelphia: Elsevier.Google Scholar
Gysels, M., Richardson, A. & Higginson, I.J. (2004). Communication training for health professionals who care for patients with cancer: A systematic review of effectiveness. Supportive Care in Cancer, 12, 692–700.CrossRefGoogle Scholar
Hanson, L.C., Dobbs, D., Usher, B.M., et al. (2008). Providers and types of spiritual care during serious illness. Journal of Palliative Medicine, 11, 907–914.CrossRefGoogle ScholarPubMed
Harding, R. & Higginson, I.J. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17, 63–74.CrossRefGoogle ScholarPubMed
Hudson, P.L., Kristjanson, L.J., Ashby, M., et al. (2006). Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines. Palliative Medicine, 20, 693–701.Google Scholar
Kazis, L.E., Anderson, J.J. & Meenan, R.F. (1989). Effect sizes for interpreting changes in health status. Medical Care, 27(Suppl. 3), S178–189.Google Scholar
Kellehar, A. (2009). On dying and human suffering. Palliative Medicine, 23, 388–397.CrossRefGoogle Scholar
Lacasta Reverte, M.A., Rocafort Gil, J., Blanco Toro, L., et al. (2008). Intervención psicológica en cuidados paliativos. Análisis de los servicios prestados en España. Medicina Paliativa, 15, 39–44.Google Scholar
McClain, C.S., Rosenfeld, B. & Breitbart, W. (2003). Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients. Lancet, 361, 1603–1607.Google Scholar
O'Connor, M., Abbott, J., Payne, S., et al. (2009). A comparison of bereavement services provided in hospice and palliative care settings in Australia, the UK and the USA. Progress in Palliative Care, 17, 69–74.CrossRefGoogle Scholar
Payás, A., Barbero, J. & Bayés, R. (2008) ¿Cómo perciben los profesionales de paliativos las necesidades espirituales del paciente al final de la vida? Medicina Paliativa, 15, 225–237.Google Scholar
Payne, S. & Hudson, P. (2009). EAPC Task Force on Family Carers: aims and objectives. European Journal of Palliative Care, 16, 77–81.Google Scholar
Pessin, H., Potash, M. & Breitbart, W. (2003). Diagnosis, assessment, and treatment of depression in palliative care. Psychosocial issues in Palliative Care. Oxford: Oxford University Press.Google Scholar
Porta–Sales, J., Codorniu, N., Gómez–Batiste, X., et al. (2005). Patient appointment process, symptom control and prediction of follow-up compliance in a palliative care outpatient clinic. Journal of Pain and Symptom Management, 30, 145–153.CrossRefGoogle Scholar
Puchalski, C., Ferrell, B., Virani, R., et al. (2009). Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. Journal of Palliative Medicine, 12, 885–904.CrossRefGoogle Scholar
Thomas, C., Hudson, P., Oldham, L., et al. (2010). Meeting the needs of family carers: an evaluation of three home-based palliative care services in Australia. Palliative Medicine, 24, 183–191.CrossRefGoogle ScholarPubMed
Vivat, B. (2008). Measures of spiritual issues for palliative care patients: a literature review. Palliative Medicine, 22, 859–868.Google Scholar