The Sense of Dignity at the End of Life: Reflections on Lifetime Values through the Family Photo Album
Abstract
:1. Introduction
2. Materials and Methods
2.1. Participants
2.2. Methodology
3. Results
3.1. The First Theme: The Relationship between Continuity of Self and Myriad Values in the Context of Family Relationships
3.2. The Second Theme: Personal Dignity as Characterised by the Values of Personal Success, Hope, and Wisdom
3.3. The Third Theme: Hope and Generativity
3.4. The Fourth Theme: Final Opinion on the Experience
4. Discussion
5. Conclusions
Limitation and Future Studies
Author Contributions
Funding
Conflicts of Interest
References
- Van Der Maas, P.; Van Delden, J.; Pijnenborg, L.; Looman, C. Euthanasia and other medical decisions concerning the end of life. Lancet 1991, 338, 669–674. [Google Scholar] [CrossRef] [PubMed]
- Van Der Heide, A.; Onwuteaka-Philipsen, B.D.; Rurup, M.L.; Buiting, H.M.; Van Delden, J.J.; Wolf, J.E.H.-D.; Janssen, A.G.; Pasman, H.R.W.; Rietjens, J.A.C.; Prins, C.J.; et al. End-of-Life Practices in the Netherlands under the Euthanasia Act. N. Engl. J. Med. 2007, 356, 1957–1965. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Chochinov, H.M.; Hack, T.; Hassard, T.; Kristjanson, L.J.; McClement, S.; Harlos, M. Dignity in the terminally ill: A cross-sectional, cohort study. Lancet 2002, 360, 2026–2030. [Google Scholar] [CrossRef] [PubMed]
- Chochinov, H.M.; Hack, T.; McClement, S.; Kristjanson, L.; Harlos, M. Dignity in the terminally ill: A developing empirical model. Soc. Sci. Med. 2002, 54, 433–443. [Google Scholar] [CrossRef] [PubMed]
- Chochinov, H.M. Dying, Dignity, and New Horizons in Palliative End-of-Life Care. CA A Cancer J. Clin. 2006, 56, 84–103. [Google Scholar] [CrossRef] [Green Version]
- Chochinov, H.M.; Hack, T.; Hassard, T.; Kristjanson, L.J.; McClement, S.; Harlos, M. Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life. J. Clin. Oncol. 2005, 23, 5520–5525. [Google Scholar] [CrossRef] [Green Version]
- Chochinov, H.M. Dignity-conserving care—A new model for palliative care: Helping the patient feel valued. JAMA 2002, 287, 2253–2260. [Google Scholar] [CrossRef]
- Testoni, I.; Falletti, S.; Visintin, E.P.; Ronconi, L.; Zamperini, A. Volunteering in palliative care: Religiosity, explicit representations of death and implicit representations of God between dehumanization and burnout [Il volontariato nelle cure palliative: Religiosità, rappresentazioni esplicite della morte e implicite. Psicol. Della Salut. 2016, 2, 27–42. [Google Scholar]
- Testoni, I.; Sansonetto, G.; Ronconi, L.; Rodelli, M.; Baracco, G.; Grassi, L. Meaning of life, representation of death, and their association with psychological distress. Palliat. Support Care 2018, 16, 511–519. [Google Scholar] [CrossRef]
- Chochinov, H.M.; Hassard, T.; McClement, S.; Hack, T.; Kristjanson, L.J.; Harlos, M.; Sinclair, S.; Murray, A. The Patient Dignity Inventory: A Novel Way of Measuring Dignity-Related Distress in Palliative Care. J. Pain Symptom Manag. 2008, 36, 559–571. [Google Scholar] [CrossRef]
- Chochinov, H.M. Dignity Therapy—Final Words for Final Days; Oxford University Press: New York, NY, USA, 2012. [Google Scholar]
- Rogers, C. Client-Centered Therapy: Its Current Practice, Implications and Theory; Houghton Mifflin: Oxford, UK, 1951. [Google Scholar]
- Testoni, I.; Cecchini, C.; Zulian, M.; Guglielmin, M.S.; Ronconi, L.; Kirk, K.; Berto, F.; Guardigli, C.; Cruz, A.S. Psychodrama in therapeutic communities for drug addiction: A study of four cases investigated using idiographic change process analysis. Arts Psychother. 2018, 61, 10–20. [Google Scholar] [CrossRef]
- Chochinov, H.M.; Kristjanson, L.J.; Breitbart, W.; McClement, S.; Hack, T.F.; Hassard, T.; Harlos, M. Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: A randomised controlled trial. Lancet Oncol. 2011, 12, 753–762. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Passik, S.D.; Kirsh, K.L.; Leibee, S.; Kaplan, L.S.; Love, C.; Napier, E.; Burton, D.; Sprang, R. A feasibility study of Dignity Psychotherapy delivered via telemedicine. Palliat. Support. Care 2004, 2, 149–155. [Google Scholar] [CrossRef] [PubMed]
- Gagnon, P.; Chochinov, H.M.; Cochrane, J.-P.; Moreau, J.L.M.; Fontaine, R.; Croteau, L. Psychothérapie de la dignité: Une intervention pour réduire la détresse psychologique chez les personnes en soins palliatifs. Psycho-Oncol. 2010, 4, 169–175. [Google Scholar] [CrossRef]
- Houmann, L.J.; Rydahl-Hansen, S.; Chochinov, H.M.; Kristjanson, L.J.; Groenvold, M. Testing the feasibility of the Dignity Therapy interview: Adaptation for the Danish culture. BMC Palliat. Care 2010, 9, 21. [Google Scholar] [CrossRef] [Green Version]
- Perito, M.; De Guglielmo, S.; Orrico, A.; Franza, F. La Dignity Therapy: Un Progetto Terapeutico in Una Casa Circondariale; SOPSI, Poster S2-P70: Milano, Italy, 2016. [Google Scholar] [CrossRef]
- Aoun, S.; Chochinov, H.M.; Kristjanson, L.J. Dignity Therapy for People with Motor Neuron Disease and Their Family Caregivers: A Feasibility Study. J. Palliat. Med. 2015, 18, 31–37. [Google Scholar] [CrossRef] [Green Version]
- Vaghee, S.; Heydari, A. The Effect of Dignity Therapy on Hope in Patients with Major Depression Disorder. Glob. J. Health Sci. 2016, 8, 118. [Google Scholar] [CrossRef]
- Testoni, I.; D’Ippolito, M.; Iacona, E.; Mencacci, E.; Zamperini, A.; Grassi, L. Dignity therapy and the past that matter: Dialogues with the elderly on values and photos. J. Cross Cult. Gerontol. (Under Review).
- Weiser, J. Phototherapy Techniques. Exploring the Secrets of Personal Snapshots and Family Albums; PhotoTherapy Center: Vancouver, BC, Canada, 1999. [Google Scholar]
- Weiser, J. PhotoTherapy Techniques in Counselling and Therapy—Using Ordinary Snapshots and Photo-Interactions to Help Clients Heal Their Lives. Can. Art Ther. Assoc. J. 2004, 17, 23–53. [Google Scholar] [CrossRef]
- Weiser, J. Using personal snapshots and family pothographs as therapy tools: The “Why, what, and how” of photo therapy. PSICOART 2010, 1, 1–43. [Google Scholar] [CrossRef]
- Weiser, J. Phototherapy Techniques: Exploring the Secrets of Personal Snapshots and Family Albums, 2nd ed.; Routledg: London, UK, 2018. [Google Scholar]
- Harper, D. Visual studies talking about pictures: A case for photo elicitation Talking about pictures: A case for photo elicitation. Vis. Stud. 2002, 17. [Google Scholar] [CrossRef]
- BBates, E.A.; McCann, J.J.; Kaye, L.K.; Taylor, J.C. “Beyond words”: A researcher’s guide to using photo elicitation in psychology. Qual. Res. Psychol. 2017, 14, 459–481. [Google Scholar] [CrossRef]
- Testoni, I.; Piscitello, M.; Ronconi, L.; Zsák, É.; Iacona, E.; Zamperini, A. Death Education and the Management of Fear of Death Via Photo-Voice: An Experience Among Undergraduate Students. J. Loss Trauma 2019, 24, 387–399. [Google Scholar] [CrossRef]
- Testoni, I.; Cordioli, C.; Nodari, E.; Zsak, E.; Marinoni, G.L.; Venturini, D.; Maccarini, A. Language re-discovered: A death education intervention in the net between kindergarten, family and territory. Ital. J. Sociol. Educ. 2019, 11, 331–346. [Google Scholar] [CrossRef]
- Testoni, I.; Bingaman, K.A.; D’Iapico, G.; Marinoni, G.L.; Zamperini, A.; Grassi, L.; Nanni, M.G.; Vacondio, P. Dignity as Wisdom at the End of Life: Sacrifice as Value Emerging from a Qualitative Analysis of Generativity Documents. Pastor. Psychol. 2019, 68, 479–489. [Google Scholar] [CrossRef]
- Schwartz, S.H. Universals in the Content and Structure of Values: Theoretical Advances and Empirical Tests in 20 Countries. Adv. Exp. Soc. Psychol. 1992, 25, 1–65. [Google Scholar] [CrossRef]
- Schwartz, S.H. An overview of the Schwartz theory of basic values. Online Readings Psychol. Cult. 2012, 2, 11. [Google Scholar] [CrossRef]
- Rokeack, M. The Nature of Human Values; Free Press: New York, NY, USA, 1973. [Google Scholar]
- Kluckhohn, C. Values and Value-Orientations in the Theory of Action: An Exploration in Definition and Classification; Harvard University Press: Cambridge, MA, USA, 1951. [Google Scholar]
- Schwartz, S.H.; Bilsky, W. Toward a universal psychological structure of human values. J. Pers. Soc. Psychol. 1987, 53, 550–562. [Google Scholar] [CrossRef]
- Schwartz, S.H. Are There Universal Aspects in the Structure and Contents of Human Values? J. Soc. Issues 1994, 50, 19–45. [Google Scholar] [CrossRef]
- Schwartz, S.H.; Boehnke, K. Evaluating the structure of human values with confirmatory factor analysis. J. Res. Pers. 2004, 38, 230–255. [Google Scholar] [CrossRef]
- Sagiv, L.; Schwartz, S.H. Value priorities and readiness for out-group social contact. J. Pers. Soc. Psychol. 1995, 69, 437–448. [Google Scholar] [CrossRef]
- Schwartz, S.H.; Bilsky, W. Toward a theory of the universal content and structure of values: Extensions and cross-cultural replications. J. Pers. Soc. Psychol. 1990, 58, 878–891. [Google Scholar] [CrossRef]
- Bruera, E.; Kuehn, N.; Miller, M.J.; Selmser, P.; Macmillan, K. The Edmonton Symptom Assessment System (ESAS): A Simple Method for the Assessment of Palliative Care Patients. J. Palliat. Care 1991, 7, 6–9. [Google Scholar] [CrossRef]
- Moro, C.; Brunelli, C.; Miccinesi, G.; Fallai, M.; Morino, P.; Piazza, M.; Labianca, R.; Ripamonti, C. Edmonton symptom assessment scale: Italian validation in two palliative care settings. Support. Care Cancer 2006, 14, 30–37. [Google Scholar] [CrossRef] [PubMed]
- Ripamonti, C.I.; Buonaccorso, L.; Maruelli, A.; Bandieri, E.; Pessi, M.A.; Boldini, S.; Primi, C.; Miccinesi, G. Patient Dignity Inventory (PDI) Questionnaire: The Validation Study in Italian Patients with Solid and Hematological Cancers on Active Oncological Treatments. Tumori. J. 2012, 98, 491–500. [Google Scholar] [CrossRef]
- Testoni, I.; Simioni, J.L.; Sposito, D.D.L. Representation of death and social management of the limit of life: Between resilience and irrationalism. Nutr. Ther. Metab. 2013, 31, 192–198. [Google Scholar] [CrossRef]
- Zamperini, A.; Testoni, I.; Primo, D.; Prandelli, M. Because Moms Say So: Narratives of Lesbian Mothers in Italy. J. GLBT Fam. Stud. 2015, 12, 91–110. [Google Scholar] [CrossRef]
- Testoni, I.; Iacona, E.; Fusina, S.; Floriani, M.; Crippa, M.; Maccarini, A.; Zamperini, A. “Before I die I want to …”: An experience of death education among university students of social service and psychology. Heal. Psychol. Open 2018, 5, 205510291880975. [Google Scholar] [CrossRef] [Green Version]
- Testoni, I.; Francescon, E.; De Leo, D.; Santini, A.; Zamperini, A. Forgiveness and Blame Among Suicide Survivors: A Qualitative Analysis on Reports of 4-Year Self-Help-Group Meetings. Community Ment. Heal. J. 2018, 55, 360–368. [Google Scholar] [CrossRef] [Green Version]
- Testoni, I.; Cichellero, S.; Kirk, K.; Cappelletti, V.; Cecchini, C. When Death Enters the Theater of Psychodrama: Perspectives and Strategies of Psychodramatists. J. Loss Trauma 2019, 24, 516–532. [Google Scholar] [CrossRef]
- Testoni, I.; Parise, G.; Visintin, E.P.; Zamperini, A.; Ronconi, L. Literary Plastination: From body’s objectification to the ontological representation of death, differences between sick-literature and tales by amateur writers. TPM Testing. Psychom. Methodol Appl Psychol. 2016, 23, 247–263. [Google Scholar] [CrossRef]
- Galantin, L.P.; Testoni, I.; Natati, L. Phenomenology of agony: A qualitative study about the experience of agony phenomenon in relatives of dying patients. Ann. Palliat. Med. 2019, 8, 542–550. [Google Scholar] [CrossRef]
- Li, H.-C.; Richardson, A.; Speck, P.; Armes, J. Conceptualizations of dignity at the end of life: Exploring theoretical and cultural congruence with dignity therapy. J. Adv. Nurs. 2014, 70, 2920–2931. [Google Scholar] [CrossRef] [PubMed]
- Montross, L.; Winters, K.D.; Irwin, S.A. Dignity Therapy Implementation in a Community-Based Hospice Setting. J. Palliat. Med. 2011, 14, 729–734. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Fegg, M.J.; Wasner, M.; Neudert, C.; Borasio, G.D. Personal Values and Individual Quality of Life in Palliative Care Patients. J. Pain Symptom Manag. 2005, 30, 154–159. [Google Scholar] [CrossRef]
- Byock, I.R. The Nature of Suffering and the Nature of Opportunity at the End of Life. Clin. Geriatr. Med. 1996, 12, 237–252. [Google Scholar] [CrossRef]
- Testoni, I.; Facco, E.; Perelda, F. Toward A New Eternalist Paradigm for Afterlife Studies: The Case of the Near-Death Experiences Argument. World Futur. 2017, 73, 442–456. [Google Scholar] [CrossRef]
- Facco, E.; Casiglia, E.; Zanette, G.; Testoni, I. On the way of liberation from suffering and pain: Role of hypnosis in palliative care. Ann. Palliat. Med. 2018, 7, 63–74. [Google Scholar] [CrossRef] [Green Version]
- Schreiber, J.A.; Brockopp, D.Y. Twenty-five years later—what do we know about religion/spirituality and psychological well-being among breast cancer survivors? A systematic review. J. Cancer Surviv. 2011, 6, 82–94. [Google Scholar] [CrossRef]
- Sherman, A.C.; Merluzzi, T.V.; Pustejovsky, J.E.; Park, C.L.; George, L.; Fitchett, G.; Jim, H.S.L.; Munoz, A.R.; Danhauer, S.C.; Snyder, M.A.; et al. A meta-analytic review of religious or spiritual involvement and social health among cancer patients. Cancer 2015, 121, 3779–3788. [Google Scholar] [CrossRef]
- Salsman, J.M.; Pustejovsky, J.E.; Jim, H.S.L.; Munoz, A.R.; Merluzzi, T.V.; George, L.; Park, C.L.; Danhauer, S.C.; Sherman, A.C.; Snyder, M.A.; et al. A meta-analytic approach to examining the correlation between religion/spirituality and mental health in cancer. Cancer 2015, 121, 3769–3778. [Google Scholar] [CrossRef]
- Visser, A.; Garssen, B.; Vingerhoets, A. Spirituality and well-being in cancer patients: A review. Psycho-Oncology 2009, 19, 565–572. [Google Scholar] [CrossRef]
- Winger, J.G.; Adams, R.N.; Mosher, C.E. Relations of meaning in life and sense of coherence to distress in cancer patients: A meta-analysis. Psycho-Oncology 2016, 25, 2–10. [Google Scholar] [CrossRef] [Green Version]
Variables | Frequency (%) |
---|---|
Gender: | |
male | 5 (71%) |
female | 2 (29%) |
Age (years) ^ | 63 (range 44–79) |
School attendance (years) ^ | 11 (range 5–16) |
Nationality: | |
Italian | 5 (71%) |
Albanian | 1 (14%) |
Moldovan | 1 (14%) |
Civil state: | |
married with children | 5 (71%) |
married without children | 1 (14%) |
single with children | 1 (14%) |
Job: | |
worker | 2 (29%) |
retired | 5 (71%) |
Pathology: | |
cancer | 6 (86%) |
neurodegenerative (SLA) | 1 (14%) |
Cancer site: | |
lung | 1 (14%) |
liver | 2 (29%) |
nasopharyngeal | 1 (14%) |
angiosarcoma | 1 (14%) |
pancreatic | 1 (14%) |
Years from diagnosis receipt ^ | 2 (1–4) |
Length of meetings (days for person) ^ | 6 (range 4–9) |
Variable | Pre-Test | Post-Test | Wicoxon’s Test Results | |||||
---|---|---|---|---|---|---|---|---|
M | SD | M | SD | Number of Negative Ranks ^ | Number of Positive Ranks ^^ | z | p-Value | |
ESAS | ||||||||
Pain | 4.57 | 2.07 | 4.14 | 2.34 | 1 | 5 | −0.95 | 0.339 |
Fatigue | 6.29 | 2.63 | 5.14 | 2.12 | 0 | 4 | −1.84 | 0.066 |
Nausea | 2.14 | 2.79 | 1.29 | 1.80 | 2 | 3 | −0.96 | 0.336 |
Depression | 4.57 | 1.51 | 4.00 | 2.00 | 1 | 4 | −0.96 | 0.334 |
Drowsiness | 5.00 | 2.65 | 3.86 | 2.79 | 0 | 4 | −1.84 | 0.066 |
Insomnia | 3.29 | 2.43 | 2.43 | 3.10 | 2 | 4 | −0.85 | 0.395 |
Anxiety | 5.43 | 2.57 | 5.00 | 2.65 | 3 | 3 | −0.1 | 0.914 |
Shortness of breath | 2.86 | 3.08 | 2.71 | 3.59 | 2 | 2 | −0.18 | 0.854 |
Appetite | 3.14 | 2.41 | 3.57 | 1.62 | 3 | 1 | −1.13 | 0.257 |
Discomfort | 4.57 | 2.37 | 4.71 | 1.25 | 3 | 4 | −0.08 | 0.932 |
Other | 7.00 | 1.79 | 6.50 | 1.22 | 2 | 4 | −0.63 | 0.524 |
PDI | ||||||||
Existential Distress | 25.57 | 4.72 | 26.57 | 5.62 | 3 | 2 | −1.21 | 0.223 |
Psychological Distress | 18.71 | 2.98 | 17.86 | 4.26 | 2 | 3 | −0.67 | 0.500 |
Physical and Performance Distress | 10.86 | 2.67 | 11.29 | 3.86 | 2 | 3 | −0.13 | 0.890 |
PDI Total score | 56.86 | 7.49 | 57.71 | 12.05 | 4 | 3 | −0.33 | 0.734 |
Chochinov’s Dignity Dimensions | Continuity of Self | Role Preservation | Pride Preservation | Posthumous Concerns | Hope Optimism | Generativity Legacy Inheritance | |
---|---|---|---|---|---|---|---|
Schwartz’s Values | |||||||
Auto direction | growth/maturity | X | X | X | |||
Independence | X | X | |||||
Stimulation | exciting life | X | X | ||||
diverse life | X | ||||||
Benevolence | stable and mature romantic relationships | X | X | X | X | X | |
help others | X | X | X | ||||
Universalism | wisdom | X | X | X | X | X | X |
Personal success | Being able to do | X | X | ||||
pride in one’s abilities | X | X | X | ||||
Security | safety arising from family | X | X | ||||
family safety | X | X | |||||
Hedonism | enjoyment of life | X | |||||
Tradition | respect and transmission of values | X | X | ||||
Power | power | X | |||||
Conformism | respect and transmission of values |
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. |
© 2020 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 (http://creativecommons.org/licenses/by/4.0/).
Share and Cite
Testoni, I.; Baroni, V.; Iacona, E.; Zamperini, A.; Keisari, S.; Ronconi, L.; Grassi, L. The Sense of Dignity at the End of Life: Reflections on Lifetime Values through the Family Photo Album. Behav. Sci. 2020, 10, 177. https://doi.org/10.3390/bs10110177
Testoni I, Baroni V, Iacona E, Zamperini A, Keisari S, Ronconi L, Grassi L. The Sense of Dignity at the End of Life: Reflections on Lifetime Values through the Family Photo Album. Behavioral Sciences. 2020; 10(11):177. https://doi.org/10.3390/bs10110177
Chicago/Turabian StyleTestoni, Ines, Vera Baroni, Erika Iacona, Adriano Zamperini, Shoshi Keisari, Lucia Ronconi, and Luigi Grassi. 2020. "The Sense of Dignity at the End of Life: Reflections on Lifetime Values through the Family Photo Album" Behavioral Sciences 10, no. 11: 177. https://doi.org/10.3390/bs10110177
APA StyleTestoni, I., Baroni, V., Iacona, E., Zamperini, A., Keisari, S., Ronconi, L., & Grassi, L. (2020). The Sense of Dignity at the End of Life: Reflections on Lifetime Values through the Family Photo Album. Behavioral Sciences, 10(11), 177. https://doi.org/10.3390/bs10110177