Existencial suffering of the person in a palliative situation: an integrative reviex
Article Sidebar
Main Article Content
Abstract
Introduction: The proximity of death transforms the human experience, leading the person in a palliative care (PC) to confront feelings of loss of autonomy, despair and isolation. Existential suffering (ES) is influenced by awareness of finitude, fear of death, existential emptiness and guilt. Understanding and addressing ES is essential in PC, promoting a dignified journey to the end of life, underpinned by Jean Watson’s Transpersonal Care Theory (TCT), which emphasizes a humanistic and holistic approach. Objective: To understand the perception, characteristics and interpretation of the palliative care patient’s SE.nMethodology: The integrative literature review included articles from 2014 to 2024, selected from databases such as PubMed, PsycInfo and the Cochrane Library. The analysis followed the holistic perspective of TCT, with a final sample of 21 studies. Results: Five categories were identified: 1) Meaning of ES, namely loss of control and lack of purpose; 2) Assessment and strategies, including the ES Scale; 3) Interventions, such as Meaning of Life Therapy; 4) Emotional and family support; and 5) Factors that influence overcoming ES, such as spirituality. Discussion: ES affects physical, emotional and spiritual well-being, intensified by demoralization. Interventions focused on meaning show promise, with palliative sedation being the last resort for refractory cases. Watson’s TCT supports a person-centered practice, with family involvement and promotion of emotional and spiritual well-being, highlighting the need for specialized training. Conclusion: The management of ES in PC requires a holistic approach that integrates emotional, spiritual and social dimensions, in order to offer sensitive and humanized care. The importance of training professionals and continuous research to improve care for ES in PC is reinforced.
Article Details
Section
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use.
NonCommercial — You may not use the material for commercial purposes.
NoDerivatives — If you remix, transform, or build upon the material, you may not distribute the modified material.
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License
How to Cite
References
Alesi, E. R., Ford, T. R., Chen, C. J., Fletcher, D. S., Morel, T. D., Bobb, B. T., & Lyckholm, L. J. (2015). Development of the CASH Assessment Tool To Address Existential Concerns in Patients with Serious Illness. Journal of Palliative Medicine , 18 (1), 71–75. https://doi.org/10.1089/jpm.2014.0053
Amonoo, H. L., Harris, J. H., Murphy, W. S., Abrahm, J. L., & Peteet, J. R. (2020). The Physician’s Role in Responding to Existential Suffering: What Does It Mean to Comfort Always? Journal of Palliative Care , 35 (1), 8–12. https://doi.org/10.1177/0825859719839332
Barbosa, A. (2016). Ser pessoa, vulnerabilidade e sofrimento. In A. Barbosa, P. Pina, F. Tavares, & I. Galriça Neto (Eds.), Manual de Cuidados Paliativos (3rd ed., pp. 665–690). Faculdade de Medicina de Lisboa.
Beserra, E. P., Oliveira, F. C. de, Ramos, I. C., Moreira, R. V. O., Alves, M. D. S., & Braga, V. A. B. (2014). Sofrimento humano e cuidado de enfermagem: múltiplas visões. Escola Anna Nery - Revista de Enfermagem, 18 (1). https://doi.org/10.5935/1414-8145.20140026
Bolmsjö, I. (2001). Existential issues in palliative care: Interviews of patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine , 4 (4), 499–505. https://doi.org/10.1089/109662101753381647
Bolton, L. E., Seymour, J., & Gardiner, C. (2022). Existential suffering in the day to day lives of those living with palliative care needs arising from chronic obstructive pulmonary disease (COPD): A systematic integrative literature review. Palliative Medicine , 36 (4), 567–580. https://doi.org/10.1177/02692163221074539
Bovero, A., Botto, R., Adriano, B., Opezzo, M., Tesio, V., & Torta, R. (2019). Exploring demoralization in end-of-life cancer patients: Prevalence, latent dimensions, and associations with other psychosocial variables. Palliative and Supportive Care , 1–8. https://doi.org/10.1017/S1478951519000191
Bovero, A., Sedghi, N. A., Botto, R., Tosi, C., Ieraci, V., & Torta, R. (2018a). Dignity in cancer patients with a life expectancy of a few weeks. Implementation of the factor structure of the Patient Dignity Inventory and dignity assessment for a patient-centered clinical intervention: A cross-sectional study. Palliative and Supportive Care , 16 (6), 648–655. https://doi.org/10.1017/S147895151700102X
Bovero, A., Sedghi, N. A., Opezzo, M., Botto, R., Pinto, M., Ieraci, V., & Torta, R. (2018b). Dignity-related existential distress in end-of-life cancer patients: Prevalence, underlying factors, and associated coping strategies. Psycho-Oncology , 27 , 2631–2637. https://doi.org/10.1002/pon.4884
Byrne, C. M., & Morgan, D. D. (2020). Patterns of Religiosity, Death Anxiety, and Hope in a Population of Community-Dwelling Palliative Care Patients in New Zealand—What Gives Hope If Religion Can’t? American Journal of Hospice and Palliative Medicine , 37 (5), 377–384. https://doi.org/10.1177/1049909119891148
Cardoso, A. R., Remondes-Costa, S., Veiga, E., Almeida, V., Rocha, J., Teixeira, R. J., Macedo, G., & Leite, M. (2023). Meaning of Life Therapy: A Pilot Study of a Novel Psycho-Existential Intervention for Palliative Care in Cancer. Omega - Journal of Death and Dying , 0 (0), 1–30. https://doi.org/10.1177/00302228231209654
Chaves, E. de C. L., Carvalho, E. C. de C., Terra, F. de S., & Souza, L. (2010). Validacao clinica de espiritualidade prejudicada em pacientes com doenca renal cronica. Revista Latino-Americana de Enfermagem , 18 (3).
Chochinov, H. M. (2002). Dignity-conserving care - A new model for palliative care: Helping the patient feel valued. Journal of the American Medical Association , 287 (17), 2253–2260. https://doi.org/10.1001/jama.287.17.2253
Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement, S., & Harlos, M. (2005). Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology, 23 (24), 5520–5525. https://doi.org/10.1200/JCO.2005.08.391
Chochinov, H. M., Hassard, T., McClement, S., Hack, T., Kristjanson, L. J., Harlos, M., Sinclair, S., & Murray, A. (2009). The Landscape of Distress in the Terminally Ill. Journal of Pain and Symptom Management , 38 (5), 641–649. https://doi.org/10.1016/j.jpainsymman.2009.04.021
Evangelista, C. B., Lopes, M. E. L., Nóbrega, M. M. L. da, Vasconcelos, M. F. de, & Viana, A. C. G. (2020). Análise da teoria de Jean Watson de acordo com o modelo de Chinn e Kramer. Revista de Enfermagem Referência, 5 (4), 1–6. https://doi.org/10.12707/RV20045
Favero, L., Meier, M. J., Lacerda, M. R., Mazza, V. de A., & Kalinowski, L. C. (2009). Aplicação da Teoria do Cuidado Transpessoal de Jean Watson: uma década de produção brasileiras. Acta Paul Enferm , 22 (2), 213–218.
Grech, A., & Marks, A. (2017). Existential Suffering Part 2: Clinical Response and Management #320. Journal of Palliative Medicine , 20 (1), 95–96. https://doi.org/10.1089/jpm.2016.0423
Julião, M., Barbosa, A., & Oliveira, F. (2012). Efficacy of dignity therapy in psychological and existential distress of terminally-ill patients: randomized controlled trial. Palliative Medicine , 26 (4).
Kabir, M., Rice, J. L., Bush, S. H., Lawlor, P. G., Webber, C., Grassau, P. A., Ghaedi, B., Dhuper, M., & Hackbusch, R. (2020). A mixed-methods pilot study of ‘LIFEView’ audiovisual technology: Virtual travel to support well being and quality of life in palliative and end-of-life care patients. Palliative Medicine , 34 (7), 954–965. https://doi.org/10.1177/0269216320918514
Lai, C. K. Y., Lau, C. K. Y., Kan, W. Y., Lam, W. M., & Fung, C. Y. Y. (2017). The effect of horticultural therapy on the quality of life of palliative care patients. Journal of Psychosocial Oncology , 35 (3), 278–291. https://doi.org/10.1080/07347332.2017.1286699
Laursen, L., Schønau, M. N., Bergenholtz, H. M., Siemsen, M., Christensen, M., & Missel, M. (2019). Table in the corner: A qualitative study of life situation and perspectives of the everyday lives of oesophageal cancer patients in palliative care. BMC Palliative Care , 18 (1), 1–10. https://doi.org/10.1186/s12904-019-0445-2
Lichtenthal, W. G., Nilsson, M., Zhang, B., Trice, E. D., Kissane, D. W., Breitbart, W., & Prigerson, H. G. (2009). Do rates of mental disorders and existential distress among advanced stage cancer patients increase as death approaches? Psycho-Oncology , 18 (1), 50–61. https://doi.org/10.1002/pon.1371
Lo, C., Panday, T., Zeppieri, J., Rydall, A., Murphy-Kane, P., Zimmermann, C., & Rodin, G. (2016). Preliminary psychometrics of the Existential Distress Scale in patients with advanced cancer. European Journal of Cancer Care , 00 , 1–8. https://doi.org/10.1111/ecc.12597
Mendes, K. D. S., Silveira, R. C. de C. P., & Galvão, C. M. (2008). Revisão Integrativa: Método de Pesquisa para a Incorporação de Evidências na Saúde e na Enfermagem. Texto Contexto Enfermagem , 17 (4), 758–764.
Oechsle, K., Wais, M. C., Vehling, S., Bokemeyer, C., & Mehnert, A. (2014). Relationship between symptom burden, distress, and sense of dignity in terminally ill cancer patients. Journal of Pain and Symptom Management, 48 (3), 313–321. https://doi.org/10.1016/j.jpainsymman.2013.10.022
Osse, B. H. P., Vernooij-Dassen, M. J. F. J., Schadé, E., & Grol, R. P. T. M. (2005). The problems experienced by patients with cancer and their needs for palliative care. Supportive Care in Cancer , 13 (9), 722–732. https://doi.org/10.1007/s00520-004-0771-6
Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., … Moher, D. (2021). The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. The BMJ , 372 (71), 1–9. https://doi.org/10.1136/bmj.n71
Paulo, J. M. R. (2006). As Vivências da Dor e do Sofrimento na Pessoa com Doença Oncológica em Tratamento Paliativo [Universidade Aberta]. http://www.painexhibit.com/Themes/Original_Art/sufbeal.html
Riegel, F., Crossetti, M. da G. O., & Siqueira, D. S. (2018). Contribuições da teoria de Jean Watson ao pensamento crítico holístico do enfermeiro. Revista Brasileira de Enfermagem, 71 (4), 2193–2197. https://doi.org/10.1590/0034-7167-2017-0065
Rodrigues, P., Ostyn, J., Mroz, S., Ronsse, A., Menten, J., & Gastmans, C. (2022). Ethics of sedation for existential suffering: palliative medicine physician perceptions - qualitative study. BMJ Supportive and Palliative Care, 1–9. https://doi.org/10.1136/bmjspcare-2021-003395
Silva, C. M. C. Da, Valente, G. S. C., Bitencourt, G. R., & Nogueira De Brito, L. (2010). A Teoria do Cuidado Transpessoal na Enfermagem: Análise Segundo Meleis. Cogitare Enfermagem , 15 (3), 548–551.
Simões, P. J. L. (2007). “Isto é mesmo uma questão de Vida ou de Morte!”: Preocupações Existenciais no Doente Oncológico . Universidade de Lisboa.
Souza, A. A. de, Borges, G. S., Oliveira, E. R. N. C. de, & Bretones, L. A. L. (2023). Sedação paliativa para controle de sofrimento existencial refratário: um fluxograma. Revista Bioetica , 31 , 1–8. https://doi.org/10.1590/1983-803420233605PT
The Joanna Briggs Institute. (2015). Joanna Briggs Institute Reviewers’ Manual: 2015 edition / Supplement . The Joanna Briggs Institute.
Thomas, C., Kulikowksi, J. D., Breitbart, W., Alici, Y., Bruera, E., Blackler, L., & Sulmasy, D. P. (2024). Existential suffering as an indication for palliative sedation: Identifying and addressing challenges. Palliative and Supportive Care , 22 (4), 633–636. https://doi.org/10.1017/S1478951524000336
Torralba, F. (2009). Antropologia do Cuidar . Vozes.
Turiel, F. D. V. G., Feiteira, B. M. G. P., & Sousa, C. dos P. F. (2024). Perceção do Sofrimento pelo Doente em Cuidados Paliativos: uma Scoping Review. Revista Onco.News , 48 .
Vehling, S., Kamphausen, A., Oechsle, K., Hroch, S., Bokemeyer, C., & Mehnert, A. (2015). The preference to discuss expected survival is associated with loss of meaning and purpose in terminally ill cancer patients. Journal of Palliative Medicine , 18 (11), 970–976. https://doi.org/10.1089/jpm.2015.0112
Warth, M., Kessler, J., Van Kampen, J., Ditzen, B., & Bardenheuer, H. J. (2018). “Song of Life”: Music therapy in terminally ill patients with cancer. BMJ Supportive and Palliative Care, 8 (2), 167–170. https://doi.org/10.1136/bmjspcare-2017-001475
Watson, J. (2012). The Philosophy and Science of Caring . Watson Caring Science Institute.
Wong, P. T. P., & Yu, T. T. F. (2021). Existential Suffering in Palliative Care: An Existential Positive Psychology Perspective. Medicina , 57 , 1–21. https://doi.org/10.3390/medicina57090924