Spirituality in Patients at the End of Life—Is It Necessary? A Qualitative Approach to the Protagonists
Abstract
:1. Introduction
2. Materials and Methods
3. Results
3.1. Participant Characteristics
3.2. Lines of Argument
“I am really well attended to by all of my family. My sister-in-law comes every other day to see me and asks me many questions. I am grateful to my wife for all of the help and love that she is giving me, and of course for caring for me completely. I feel really loved by the people who are around me, they really go out of their way”.(Patient Palliative 02)
“I tell my daughter not to suffer because of me, that she has to live he r life. My daughter gets scared a lot because she thinks that I am going to bleed out and I have to cheer her up”.(Patient Palliative 04)
“I believe so, the idea that there is someone and that I turn to them at certain times. I believe in a higher being, accompaniment exists at certain moments. Yes at times when I need them, when it gives me stability. But I am not practicing at all”.(Patient Palliative 02)
“I when I lead a normal and acceptable life I feel super satisfied, I have learned to enjoy the small things. Get up and do three things in my house, it’s the most wonderful thing in the world to me, because maybe in the future I won’t be able to. I have hope again. I am able to cling onto anything. With really small things, share time with others. I think that that is really positive and it helps me a lot in these moments”.(Patient Palliative 01)
“In palliative patient they do it really well, because they approach that facet, they treat your symptoms, but also your concerns”.(Patient palliative 03)
“I’ll sum it up in a really simple way, if when the moment comes you are not capable of standing 25 minutes of hugs and grief with a person in your arms, you’re not qualified. We are used to working with the pain ladder and when one approaches on an existential level the reality of a person who is dying they must be able to open up, to tremble with the other and above all to look with them into the abyss, I think that it isn’t done well because I think that we live with little awareness us professionals”.(Professional expert 08)
“Because there isn’t the custom of talking about this, and less in those moments at the end of life. For me it was much more difficult to do it at other services where there was a lot of need because it wasn’t expected of me, in the palliative context it is. But there isn’t any assessment of the life project, religious dimension, celebrations, last rites; rites are really important to the spiritual dimension. It isn’t integrated as a part of the job. Because there is a need to respond to what is expected of the nurse”(Professional expert 02)
“If it isn’t taught or if no experience is given of spirituality in the teaching of medicine or nursing, well we run the big risk of putting ourselves in front of a sick person without criteria that help us to understand beyond what is presented in their illness. It is never our job to judge anybody, but to be the doctor to whom the person can flow what they really want to express from inside of them. And all of this in a climate of confidence and serenity. Embodied spirituality is also this expression of support in daily things that make life more dignified”.(Professional expert 10)
“The patients open up the path to this search and I study. A lot of things come out of your own free will, but, are you doing it right or not? It isn’t easy to bring serenity to someone who is dying, that this process that they go through is a process of personal and family growth, if you yourself don’t believe it. First you have to wake up within yourself, then you have to train yourself to not do things wrong, because without wanting to you can do harm”.(Professional expert 04)
“From our daily experience in hospitals at no time is a formal meeting space found where it is possible to work on teamwork in all of the required areas. And this is a mistake because it limits a lot the reach of care to patients and to those around them. Medical care and nursing slip into healthcare, but the spiritual is not integrated”.(Professional expert 07)
4. Discussion
Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Conflicts of Interest
References
- Volker, G. Filosofía de la Psicología; Herder: Barcelona, Spain, 2006. [Google Scholar]
- Mytko, J.J.; Knight, S.J. Body, mind and spirit: Towards the integration of religiosity and spirituality in cancer quality of life research. Psychooncology 1999, 8, 439–450. [Google Scholar] [CrossRef]
- Puchalski, C.; Ferrell, B.; Virani, R.; Otis-Green, S.; Baird, P.; Bull, J.; Chorchinov, H.; Handzo, G.; Nelson-Becker, H.; Prince-Paul, M.; et al. La mejora de la calidad de los cuidados espirituales como una dimensión de los cuidados paliativos: El informe de la Conferencia de Consenso. Med. Paliativa 2011, 1, 20–40. [Google Scholar] [CrossRef]
- Benito, E.; Barbero, J.; Dones, M. Espiritualidad en Clinica. Una Propuesta de Evaluación y Acompañamiento Espiritual en Cuidados Paliativos; Sociedad Española de Cuidados Paliativos: Madrid, Spain, 2014; ISBN 978-84-940224-3-2. [Google Scholar]
- Vincensi, B.B. Interconnections: Spirituality, spiritual care, and patient-centered care. Asia-Pac. J. Oncol. Nurs. 2019, 6, 104. [Google Scholar] [CrossRef]
- Arrieira, I.C.D.O.; Thofehrn, M.B.; Porto, A.R.; Moura, P.M.M.; Martins, C.L.; Jacondino, M.B. Espiritualidade nos cuidados paliativos: Experiência vivida de uma equipe interdisciplinar. Rev. da Esc. Enferm. da USP 2018, 52, 3312. [Google Scholar] [CrossRef]
- Reich, K.H. Spiritual development: Han F. de Wit’s and Stanislav Grof’s differing approaches. Zygon® 2001, 6, 509–520. [Google Scholar] [CrossRef]
- Pinedo, M.T.; Jiménez, J.C. Cuidados del personal de enfermería en la dimensión espiritual del paciente. Revisión sistemática. Cult. Cuid. Rev. Enfermería Humanid 2017, 48, 110–118. [Google Scholar] [CrossRef] [Green Version]
- Velosa, T.; Caldeira, S.; Capelas, M. Depression and Spiritual Distress in Adult Palliative Patients: A Cross-Sectional Study. Religions 2017, 19, 156. [Google Scholar] [CrossRef] [Green Version]
- Caldeira, S.; Pinto, S.; Capelas, M. Spiritual care at the end of life. Nurs Stand. 2013, 28, 41–45. [Google Scholar] [CrossRef]
- Codorniu, N.; Guanter, L.; Molins, A.; Utor, L. Competencias Enfermeras en Cuidados Paliativos; Sociedad Española de Cuidados Paliativos: Madrid, Spain, 2013; ISBN 978-84-940224-0-7. [Google Scholar]
- Ortega, Á.M.; Ruiz-Fernández, M.D.; Ortiz-Amo, R.; Cabrera-Troya, J.; Carmona-Rega, I.M.; Ibáñez-Masero, O. Atención recibida al final de la vida en los servicios de urgencias desde la perspectiva de los cuidadores: Estudio cualitativo. Enferm. Clin. 2019, 29, 10–17. [Google Scholar] [CrossRef] [PubMed]
- Rudilla, D.; Soto-Rubio, A.; Pérez, M.A.; Galiana, L.; Fombuena, M.; Oliver, A. Intervenciones psicológicas en espiritualidad en cuidados paliativos: Una revisión sistemática. Med. Paliativa 2018, 25, 203–212. [Google Scholar] [CrossRef]
- Morillo-Martín, M.; Galán, J.M.; Llanos, F. Actitudes de las Enfermeras ante los Cuidados Espirituales y Religiosos en un Hospital General. Index Enferm. 2017, 26, 152–156. [Google Scholar]
- Martins, H.; Caldeira, S. Spiritual Distress in Cancer Patients: A Synthesis of Qualitative Studies. Religions 2018, 20, 285. [Google Scholar] [CrossRef] [Green Version]
- Rogers, M.; Wattis, J.; Khan, W.; Curran, S. A questionnaire-based study of attitudes to spirituality in mental health practitioners and the relevance of the concept of spiritually competent care. J. Psychiatr. Ment. Health Nurs. 2019, 28, 1165–1175. [Google Scholar] [CrossRef]
- Taylor, S.J.; Bogdan, R. Introducción a los Métodos Cualitativos de Investigación; Paidós: Barcelona, Spain, 1987; ISBN 84-7509-816-9. [Google Scholar]
- Tong, A.; Sand, P.; Craig, J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Inter. J. Qual. Health Care 2007, 19, 349–357. [Google Scholar] [CrossRef] [Green Version]
- Glaser, B.; Strauss, A. The Discovery of Grounded Theory: Strategies for Qualitative Research; Aldine: Chicago, IL, USA, 1967. [Google Scholar]
- Ghaljaie, F.; Naderifar, M.; Goli, H. Snowball sampling: A purposeful method of sampling in qualitative research. Strides Dev. Med. Educ. 2017, 14, e67670. [Google Scholar] [CrossRef] [Green Version]
- Fusch, P.I.; Ness, L.R. Are we there yet? Data saturation in qualitative research. Qual. Rep. 2015, 20, 1408–1416. [Google Scholar] [CrossRef]
- Torralba, F. Inteligencia Espiritual; Plataforma: Barcelona, Spain, 2010; ISBN 978-84-96981-74-4. [Google Scholar]
- Torralba, F. Necesidades espirituales del ser humano, Cuestiones preliminares. Labor Hosp. 2004, 271, 7–16. [Google Scholar]
- Rozelle-Stone, A.R.; Stone, L. Simone Weil and Theology; Bloomsbury: New York, NY, USA, 2013; ISBN 9780567424303. [Google Scholar]
- Kruizinga, R.; Scherer-Rath, M.; Schilderman, J.B.A.M.; Weterman, M.; Young, T.; van Laarhoven, H.W.M. Images of God and attitudes towards death in relation to spiritual wellbeing: An exploratory side study of the EORTC QLQ-SWB32 validation study in palliative cancer patients. BMC Palliat Care 2017, 8, 56–67. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Benito, E. Los cuidados espirituales, entraña de los cuidados paliativos. Med. Paliativa 2011, 18, 1–3. [Google Scholar] [CrossRef]
- Oliver, A.; Benito, E.; Sansó, N.; Galiana, L. Cuestionarios de atención espiritual en cuidados paliativos: Revisión de la evidencia para su aplicación clínica. Psicooncología 2007, 13, 385–397. [Google Scholar] [CrossRef] [Green Version]
- Buceta, M.; Bermejo, J.C.; Villacieros, M. Elementos potenciadores de la satisfacción por compasión en profesionales sociosanitarios. An. Psicol. 2019, 35, 323–331. [Google Scholar] [CrossRef] [Green Version]
- Miqueletto, M.; Silva, L.; Figueira, C.B.; Dos Santos, M.R.; Szylit, R.; de Faria, C.R. Espiritualidade de famílias com um ente querido em situação de final de vida. Rev. Cuid. 2017, 8, 1616–1627. [Google Scholar] [CrossRef] [Green Version]
Stage | Action |
---|---|
Discovery (search for topics by browsing the data in every possible way) |
|
Coding (meeting and analysis of all the data that refer to themes, ideas, concepts, interpretations and propositions) |
|
Data revitalization (interpret them in the context in which/where they were collected) |
|
Participant | Patient/Professional | Age | Disease Evolution Palliative Care Experience (Years) | Sex |
---|---|---|---|---|
Participant 1 | Palliative Patient | 74 | 4 | Female |
Participant 2 | Palliative Patient | 78 | 2 | Male |
Participant 3 | Palliative Patient | 45 | 0 | Male |
Participant 4 | Palliative Patient | 64 | 6 | Female |
Participant 5 | Palliative Patient | 69 | 3 | Female |
Participant 6 | Palliative Patient | 51 | 4 | Female |
Participant 7 | Palliative Patient | 60 | 3 | Female |
Participant 8 | Nursing Professional | 53 | 17 | Female |
Participant 9 | Academic Professional | 47 | 17 | Female |
Participant 10 | Nursing Professional | 60 | 28 | Female |
Participant 11 | Nursing Professional | 49 | 24 | Female |
Participant 12 | Nursing Professional | 56 | 28 | Female |
Participant 13 | Nursing Professional | 55 | 24 | Male |
Participant 14 | Academic Professional | 34 | 10 | Female |
Participant 15 | Nursing Professional | 41 | 16 | Female |
Participant 16 | Nursing Professional | 48 | 22 | Female |
Participant 17 | Nursing Professional | 56 | 26 | Male |
Study Population | Line of Argument | Categories | Work Experience | Scientific Evidence | Emerging Discourse |
---|---|---|---|---|---|
Palliative care patient | Concept of spirituality | Meaning of life | * | * | |
Connection with others | * | * | |||
Hope | * | ||||
System of values and beliefs | Patient’s system of values and beliefs | * | * | ||
System of values and beliefs linked with religion and metaphysical phenomenon | * | ||||
Spirituality in end-of-life care | * | * | |||
Spirituality in society | * | ||||
Factors that influence the spirituality of patients at the end of life | Worries/concerns | * | * | ||
Conflict | * | ||||
Coping strategies | * | ||||
Social support | * | * | |||
Sense of security | * | * | |||
Proximity to death | * | ||||
Feelings of despair | * | ||||
Pain | * | * | |||
Fear of suffering | * | * | |||
Body image | * | ||||
Family background | * | ||||
End-of-life processes: Professional | Concept of spirituality | Spirituality | * | * | |
Evolution of spirituality | * | ||||
Spiritual care | Spirituality in clinical care | * | * | ||
Spirituality in palliative care units | * | ||||
Training needs pertaining to spirituality | Need for spirituality training | * | * | ||
Degree training | * | ||||
Postgraduate training | * | ||||
Personal experience | * | ||||
Tools to evaluate patients’ spiritual needs | * |
Line of Argument 1 Vs. Line of Argument 4 | Role | ||
Professional expert | EXP02 | “It is the need that men and women have to transcend daily life, giving it meaning. The same with passions, that can be related with the image of some type of God or specific ideas… that people can demonstrate solidarity with each other is nothing more than the most beautiful or wonderful branches of spirituality. It is a dimension that is within all human beings, and not only in each human being, but also in every town” | |
EXP07 | “Spirituality, which does not identify with a single unique divinity, is the expression of the essence of a person from where everything is governed and finds value. A person who does not have spirituality bears a higher burden of internal defeat. They lack the foundations and nutrients that help to interpret life… A society without spirituality is dead, it gets manipulated by whatever ideology regardless of where it comes from. For this, mature spirituality leads individuals and society to be critical” | ||
Palliative Patients | PPAL01 | “I am very satisfied with the life I have led before the illness, and with the life I lead now. I go out, I don’t hide myself away at home. I don’t ask for things I can’t do. I don’t have that feeling of “I could have done that and I didn’t do it” | |
PPAL03 | “I know everything I have, I don’t stop asking because I want to know how long I have left to live and how I am going to be up until I die” | ||
PPAL07 | “But I want to be awake up until the end if I don’t have strong pains. Until the end I want to see my children, my grandchildren, my neighbors, my daughters-in-law. I wouldn’t like to lose my mind or say silly things” |
Line Argument: Concept of Spirituality | Role | |||
Palliative Patients | need to address conflict | PPAL3 | “People are not really used to expressing anything that is not exactly physical, for this reason I try to resolve conflict both talking and without talking” | |
coping strategies | PPAL6 | “I am dealing with it 100% well, don’t consider it, I move forward, I keep going. I am great, I always say that I am good, it is better to not dwell” | ||
social support | PPAL3 | “My husband is my main support, because my children support me, they call me every day, but they live in Madrid. They really do care for me a lot. But without him I wouldn’t have had the strength to go on“ | ||
sense security | PPAL7 | “It makes me feel good being able to lead the most normal life possible. To be able to have a beer someday with friends, any little thing will do for me” | ||
closeness to death | PPAL2 | “I know I’m in a very advanced stage of metastasis but then... how it’s going to be, what I’m going to feel...... I think everything will be fine and that relaxes” | ||
feelings of despair | PPAL4 | “But yesterday got me a bit despairing, and I said “now whatever has to happen”. Plus I really wanted to cry and I said “now I can’t stand this anymore” | ||
pain | PPAL2 | My legs I can hardly move them for the pain. And for this I take a lot of painkillers every day, that has morphine, up until now they haven’t given me a single day without pain. They tell me that my pain is very difficult because it is in the bones and the nerves” | ||
fear of suffering | PPAL1 | “Ay goodness me, that I don’t have to suffer much when I am dying, that my loved ones don’t see me suffer so that they don’t suffer, that I fall asleep one night, but the suffering…” | ||
body image | PPAL7 | “7 years ago now I had an operation for breast cancer, they gave me a prosthetic and it looks awful, looking at it, it’s the difference between the two that you notice even with clothes, but it doesn’t bother me as much now because I have other concerns” | ||
family background | PPAL5 | “Four siblings have died of the same thing. And my mum, I think it is hereditary. There’s more to come…I had a really bad time when they went, with my twin, we always used to go out together…. It is obvious that my destiny is what it is, the same as my family” |
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. |
© 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
García-Navarro, E.B.; Medina-Ortega, A.; García Navarro, S. Spirituality in Patients at the End of Life—Is It Necessary? A Qualitative Approach to the Protagonists. Int. J. Environ. Res. Public Health 2022, 19, 227. https://doi.org/10.3390/ijerph19010227
García-Navarro EB, Medina-Ortega A, García Navarro S. Spirituality in Patients at the End of Life—Is It Necessary? A Qualitative Approach to the Protagonists. International Journal of Environmental Research and Public Health. 2022; 19(1):227. https://doi.org/10.3390/ijerph19010227
Chicago/Turabian StyleGarcía-Navarro, E. Begoña, Alicia Medina-Ortega, and Sonia García Navarro. 2022. "Spirituality in Patients at the End of Life—Is It Necessary? A Qualitative Approach to the Protagonists" International Journal of Environmental Research and Public Health 19, no. 1: 227. https://doi.org/10.3390/ijerph19010227
APA StyleGarcía-Navarro, E. B., Medina-Ortega, A., & García Navarro, S. (2022). Spirituality in Patients at the End of Life—Is It Necessary? A Qualitative Approach to the Protagonists. International Journal of Environmental Research and Public Health, 19(1), 227. https://doi.org/10.3390/ijerph19010227