Dear Editor,
Dr. Houska et al. carried out a critical review about patients' autonomy at the end of life
1
in which they compare their results to a previous systematic review conducted by our research group.2
We appreciate the comments of Dr. Houska et al. regarding our review. As the authors highlight, our conclusions about the relationship between dignity and autonomy are similar to their autonomy model among patients at the end of life.However, they state that our “description of autonomy as a determining factor of perceived dignity limited to the traditional understanding as the desire for having control over the dying process and the desire for self-determination.” We consider that two important aspects need to be clarified in relation to this statement:
- 1.In our review, we observed that only the patients “whose sense of dignity was based on values such as autonomy, the ability to control their circumstances, or quality of life found that their dignity was undermined.” And, only in this sense, did we state, “autonomy can be a determining factor of perceived dignity.” In no other sense or context, did we suggest that dignity can be understood as autonomy.
- 2.From the very beginning of our systematic review, we clearly define that “dignity is considered to be a fundamentally intrinsic feature of the human individual.” In the same way that all the qualitative studies focus on the perception of personal dignity3,4,5have underlined, the former is sensitive to the image that patients have of themselves (identity), to the relationship with others, and to their surroundings.
As Houska et al. also highlight, we acknowledge that dignity and autonomy are different and complex concepts. Putting the idea of self-determination above everything else is not always appropriate or beneficial in a palliative care context due to the vulnerable and dependent situation that these patients face.
References
- Patients’ autonomy at the end of life: a critical review.J Pain Symptom Manag. 2019; 57: 835-845
- Patient perspectives of dignity, autonomy and control at the end of life: systematic review and meta-ethnography.PLoS One. 2016; 11: e0151435
- Dignity in the terminally ill: a developing empirical model.Soc Sci Med. 2002; 54: 433-443
- An integrative review of dignity in end-of-life care.Palliat Med. 2014; 28: 931-940
- Constructions of dignity in end-of-life care.J Palliat Care. 2001; 17: 93-101
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Published online: April 15, 2019
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© 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc.
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- Patients' Autonomy at the End of Life: A Critical ReviewJournal of Pain and Symptom ManagementVol. 57Issue 4
- PreviewThe predominating definition of autonomy as a capacity to make an independent rational choice may not be suitable for patients in palliative care. Therefrom arises the actual need for more contextualized perspectives on autonomy to promote the quality of life and satisfaction with care of terminally ill patients.
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- Authors' ResponseJournal of Pain and Symptom ManagementVol. 58Issue 1
- PreviewWe would like to thank you for the opportunity to respond to the issues raised in Dr. Rodríguez-Prat et al.'s letter concerning our critical review on patients' autonomy at the end of life1 and to offer an explanation of our comment to their systematic review.2 We would also like to thank Dr. Rodríguez-Prat and her colleagues for their interest in our paper and for taking the time to express their concerns. In their letter to the editor, Dr. Rodríguez-Prat et al. argue that their results show autonomy as a determining factor of dignity only at one particular context and not in general and also highlighted their understanding of dignity as a “fundamentally intrinsic feature of the human individual.”
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