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2025, Number 1

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Revista Colombiana de Bioética 2025; 20 (1)

The Values History of the person with Alzheimer’s disease that emerges in the narrative of the book Always Alice: contributions to the right to die

Álvarez AAM

Language: Spanish
References: 33
Page: 1-20
PDF size: 464.08 Kb.


ABSTRACT

Purpose/Background. The values history identifies a person’s values, goals, and beliefs regarding life, illness, and death in order to understand the decisions that will guide future clinical care and end-of-life care. The values history is the first step in initiating advance care planning for any healthy person or person with an illness. The purpose of this article was to elaborate The values history in a person with early-stage Alzheimer’s disease and analyse the contributions to the right to die.
Methodology/Approach. Qualitative study. A narrative analysis of the literary work Still Alice was conducted using Hans-Georg Gadamer’s hermeneutic method under the bioethical foundation of Diego Gracia’s constructivist theory of value. The aim of this study was to develop a values history for Alice Howland.
Results/Findings. A values history was developed as a reflective process in a patient with early-stage Alzheimer’s disease. The values of well-being or quality of life, the notion of suffering, shortterm life goals, and end-of-life medical decisions were identified, including: signing an advanced directives document, the decision to donate anatomical components and participate as a subject in research, the right to spiritual or religious accompaniment, choosing to anticipate death or requesting medically assisted death, the right to designate a representative, and peer support. Palliative care and participation in advance care planning were not mentioned.
Discussion/Conclusions/Contributions. People with early-stage Alzheimer’s disease have the capacity to make decisions. Therefore, at the time of diagnosis, it is recommended to begin advance decision planning and prepare a document outlining their values history or advanced directives document.


REFERENCES

  1. Belar, Alazne, María Arantzamendi, Sheila Payne, et al. 2021. “How to measure theeffects and potential adverse events of palliative sedation? An integrative review.”Palliative Medicine 35 (2): 295-314. https://doi.org/10.1177/0269216320974264

  2. Benito, Enric, Amparo Oliver, Laura Galiana, et al. 2014. “Development and validationof a new tool for the assessment and spiritual care of palliative care patients.”Journal of Pain and Symptom Management 47 (6): 1008-1018.e1. https://doi.org/10.1016/j.jpainsymman.2013.06.018

  3. Corte Constitucional. 1997. Sentencia 239 de 1997. https://www.corteconstitucional.gov.co/relatoria/1997/c-239-97.htm

  4. Corte Constitucional. 2014. Sentencia T-970 de 2014. https://www.corteconstitucional.gov.co/relatoria/2014/t-970-14.htm

  5. Corte Constitucional. 2021. Sentencia C-233 del 2021. https://www.corteconstitucional.gov.co/Relatoria/2021/C-233-21.htm

  6. Corte Constitucional. 2022. Sentencia C-164 del 2022. https://www.corteconstitucional.gov.co/relatoria/2022/C-164-22.htm

  7. De Beaufort, Inez D. y Suzanne Van De Vathorst. 2016. “Dementia and assistedsuicide and euthanasia.” Journal of Neurology 263 (7): 1463-1467. https://doi.org/10.1007/s00415-016-8095-2

  8. Dening, Karen H., Louise Jones y Elizabeth L. Sampson. 2013. “Preferencesfor end-of-life care: a nominal group study of people with dementiaand their family carers.” Palliative Medicine 27 (5): 409-17. https://doi.org/10.1177/0269216312464094

  9. Dixon, Josie, Maria Karagiannidou y Martin Knapp. 2018. “The effectiveness ofadvance care planning in improving end-of-life outcomes for people with dementiaand their carers: a systematic review and critical discussion.” Journalof Pain and Symptom Management 55 (1): 132-150.e1 https://doi.org/10.1016/j.jpainsymman.2017.04.009

  10. Doukas, David J. y Laurence B. McCullough. 1991. “The values history: the evaluationof the patient’s values and advance directives.” The Journal of FamilyPractice 32 (2): 145-153. https://psycnet.apa.org/record/1992-11206-001

  11. Dworkin, Ronald. 1993. Life’s dominion: an argument about abortion, euthanasia, andindividual freedom. Vintage Books.

  12. Gadamer, Hans-Georg. 1998. Verdad y método II. Traducido por M. Olasagasti. EdicionesSígueme, S. A.Genova, L. 2009. Siempre Alice. Traducido por F. Pérez. Ediciones B. Barcelona(Obra original publicada en 2007).

  13. Gracia, Diego. 2011. La cuestión del valor. Real academia de ciencias morales y políticas.

  14. Greenwood, Nan y Raymond Smith. 2016. “The experiences of people withyoung-onset dementia: A meta-ethnographic review of the qualitative literature.”Maturitas 92: 102-109. https://doi.org/10.1016/j.maturitas.2016.07.019

  15. Jennings, Bruce. 2010. “Agency and Moral Relationship In Dementia.” En CognitiveDisability and Its Challenge to Moral Philosophy, editado por Kittay and Carlson.Wiley-Blackwell.

  16. Karel, Michele J., Jennifer Moye, Adam Bank y Armin R. Azar. 2007. “Three methodsof assessing values for advance care planning: comparing persons withand without dementia.” Journal of Aging Health 19 (1): 123-151. https://doi.org/10.1177/0898264306296394

  17. Loseto-Gerritzen, Esther Vera, Orii McDermott y Martin Orrell. 2024. “Developmentof a best practice guidance on online peer support for people withyoung-onset dementia.” Behavioral Sciences 14 (9): 746. https://doi.org/10.3390/bs14090746

  18. Mead, Shery, David Hilton y Laurie Curtis. 2001. “Peer support: a theoreticalperspective.” Psychiatric Rehabilitation Journal 25 (2): 134-141. https://doi.org/10.1037/h0095032

  19. Miller, David Gibbes, Rebecca Dresser y Scott Y. H. Kim. 2019. “Advance euthanasiadirectives: a controversial case and its ethical implications.” Journal ofMedical Ethics 45 (2): 84-89. https://doi.org/10.1136/medethics-2017-104644

  20. Ministerio de Salud y Protección Social. 2018. Resolución 2665 de 2018. https://www.minsalud.gov.co/Normatividad_Nuevo/Resoluci%C3%B3n%20No.%202665%20de%202018.pdf

  21. Ministerio de Salud y Protección Social. 2021. Resolución 0971 de 2021. https://www.minsalud.gov.co/sites/rid/Lists/BibliotecaDigital/RIDE/DE/DIJ/resolucion-971-de-2021.pdf

  22. Montoya Juárez, Rafael, Jacqueline Schmidt Río-Valle y Diego Prados Peña. 2006.“En busca de una definición transcultural de sufrimiento; una revisión bibliográfica.”Cultura de los Cuidados 20: 117-20. https://doi.org/10.14198/cuid.2006.20.16

  23. Piers, Ruth, Gwenda Albers, Joni Gilissen, et al. “Advance care planning in dementia:recommendations for healthcare professionals.” BMC Palliative Care 17 (1):17. https://doi.org/10.1186/s12904-018-0332-2

  24. Porteri, Corinna. 2018. “Advance directives as a tool to respect patients’ values andpreferences: discussion on the case of Alzheimer’s disease.” BMC Medical Ethics19: 9. https://doi.org/10.1186/s12910-018-0249-6

  25. Prieto-Crespo, Virginia, Pedro Arevalo-Buitrago, Estefania Olivares-Luque, AuroraGarcía-Arcos y Pablo Jesús López-Soto. 2024. “Impact of spiritual supportinterventions on the quality of life of patients who receive palliative care: asystematic review.” Nursing Reports 14 (3): 1906-1921. https://doi.org/10.3390/nursrep14030142

  26. Prommer, Eric E. 2010. “Using the values-based history to fine-tune advance careplanning for oncology patients.” Journal of Cancer Education 25 (1): 66-9. https://dx.doi.org/10.1007/s13187-009-0014-0

  27. Radbruch, Lukas, Liliana De Lima, Felicia Knaul, et al. 2020. “Redefining palliativecare—a new consensus-based definition.” Journal of Pain and Symptom Management60 (4): 754-764. https://doi.org/10.1016/j.jpainsymman.2020.04.027

  28. Reich, Michel, Xavier Bondenet, Laurence Rambaud, et al. 2019. “Refractory psycho-existential distress and continuous deep sedation until death in palliativecare: the French perspective.” Palliative & Supportive Care 18 (4): 486-94. https://doi.org/10.1017/S1478951519000816

  29. Ryan, Suzanne, Joanne Wong, Ronald Chow y Camilla Zimmermann. 2020. “Evolvingdefinitions of palliative care: upstream migration or confusion?” Current TreatmentOptions in Oncology 21 (3): 20. https://doi.org/10.1007/s11864-020-0716-4

  30. Sedini, Cristina, Martina Biotto, Lorenza M. Crespi Bel’skij, Roberto Ercole MoroniGrandini y Matteo Cesari. 2022. “Advance care planning and advance directives:an overview of the main critical issues”. Aging Clinical Experimental Research34: 325-330. https://doi.org/10.1007/s40520-021-02001-y

  31. Soto-Rubio, Ana, Marian Perez-Marin, David Rudilla, et al. 2020. “Responding tothe spiritual needs of palliative care patients: a randomized controlled trial totest the effectiveness of the Kibo therapeutic interview.”. Frontiers in Psychology11: 1979. https://doi.org/10.3389/fpsyg.2020.01979

  32. Sullivan, Mary Pat, Veronika Williams, Adetola Grillo, et al. 2022. “Peer supportfor people living with rare or young onset dementia: an integrative review.” Dementia21 (8): 2700-2726. https://doi.org/10.1177/14713012221126368

  33. Willis, Elizabeth, Amy C Semple y Hugo De Waal. 2016. “Quantifying the benefitsof peer support for people with dementia: A Social Return on Investment (SROI)study.” Dementia 17 (3): 266-278. https://doi.org/10.1177/1471301216640184




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