Exploring family emotions in do-not-resuscitate (DNR) decision-making for hospitalized patients: A systematic review
DOI: https://doi.org/10.33024/minh.v8i11.988
Critical Patients Decision Making DNR Decision Family Emotions
Abstract
Background: End-of-life decision-making, particularly Do-Not-Resuscitate (DNR) decisions for critically ill patients in hospital care, is an extremely difficult and often traumatic issue. This process has a profound impact on the mental health of families, causing anxiety, depression, stress, and even post-traumatic stress disorder (PTSD). There is currently little literature that thoroughly explores the diverse and profound emotional landscape, such as fear, optimism, well-being, and challenges experienced by families during the DNR decision-making process.
Purpose: To examine the various emotions experienced by family members during the DNR decision-making process for patients hospitalised in hospital. Understanding these emotional experiences is crucial for improving support interventions, reducing conflict, and avoiding adverse psychological effects on families and healthcare providers.
Method: A systematic review (SR) design was used in this study to evaluate and synthesise existing qualitative evidence on the emotional experiences of families. This design was chosen because it provides a better understanding of the family situation. To ensure its relevance to current clinical practice, this review used the PRISMA guidelines and the PICO framework. The publications included were published between 2020 and 2025 and were retrieved from electronic databases such as PubMed, SAGE, and Clinicalkey Nursing. Nine studies in the qualitative synthesis included 28 primary studies that were evaluated, most of which were qualitative or used mixed methods, conducted in several countries (such as the US, Australia, Taiwan, and Chile). The focus of the analysis was to find patterns, similarities, and differences in emotional experiences.
Results: Families' experiences with DNR decisions are characterised by significant psychological stress. When families are faced with discussions about Goals of Care (GoC), they often feel unprepared, confused, and shocked. This situation is often exacerbated by time pressure. Families experience the deepest emotions, namely guilt and fear of making the wrong decision, with the family's main goal being to ‘do everything right so there are no regrets’.
Conclusion: The DNR process is complex, dynamic, and emotional. This study shows that healthcare professionals must not only provide medical information but also acknowledge, validate, and assist families in coping with their emotional issues. To improve the quality of end-of-life care, clinical practice must shift to a more family-centred and friendly communication model that explicitly addresses the complex emotional dynamics that families face during difficult times in their lives.
Downloads
References
Bone, A. E., Gomes, B., Etkind, S. N., Verne, J., Murtagh, F. E., Evans, C. J., & Higginson, I. J. (2018). What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliative medicine, 32(2), 329-336.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101.
Brimblecombe, C., Crosbie, D., Lim, W. K., & Hayes, B. (2014). The G oals of P atient C are project: implementing a proactive approach to patient‐centred decision‐making. Internal Medicine Journal, 44(10), 961-966.
Cavolo, A., de Casterlé, B. D., Naulaers, G., & Gastmans, C. (2021). Neonatologists’ decision-making for resuscitation and non-resuscitation of extremely preterm infants: ethical principles, challenges, and strategies—a qualitative study. BMC Medical Ethics, 22(1), 129.
Coogan, A., Kimpel, C., Jones, A. C., Barroso, J., Frechman, E., & Maxwell, C. A. (2022). Perspectives on aging and end of life among lower socioeconomic status (SES) older adults. Journal of Applied Gerontology, 41(6), 1595-1603.
Cresp, S. J., Lee, S. F., & Moss, C. (2020). Substitute decision makers’ experiences of making decisions at end of life for older persons with dementia: A systematic review and qualitative meta-synthesis. Dementia, 19(5), 1532-1559.
Creswell, J. W. (2013). Qualitative Inquiry and Research Design: Choosing Among Five Approaches (3rd ed.). Thousand Oaks, CA: Sage Publications.
Gardiner, G., Eli, K., Huxley, C. J., Fothergill, R., Perkins, G. D., Smyth, M. A., & Slowther, A. M. (2024). Negotiating grey areas: an interview-based analysis of paramedic uncertainty and decision-making in cardiac arrest events. BMC Emergency Medicine, 24(1), 154.
Liang, H. J., Xiong, Q., Lin, P. C., Tsai, J. H., & Preston, N. (2024). ‘A good ending but not the end’: Exploring family preparations surrounding a relative’s death and the Afterlife–A qualitative study. Palliative Medicine, 38(10), 1184-1193.
Lundgren, J., Reuther, C., Farrand, P., Lutvica, N., Thiblin, E., von Essen, L., & Woodford, J. (2025). “It is today that counts, and today everything is fine”: coping strategies utilized by parents of children treated for cancer who seek psychological support-a qualitative study. BMC psychology, 13(1), 565.
Ma, H., Kiekhofer, R. E., Hooper, S. M., Dulaney, S., Possin, K. L., & Chiong, W. (2021). Goals of care conversations and subsequent advance care planning outcomes for people with dementia. Journal of Alzheimer’s Disease, 83(4), 1767-1773.
Mehter, H. M., McCannon, J. B., Clark, J. A., & Wiener, R. S. (2018). Physician approaches to conflict with families surrounding end-of-life decision-making in the intensive care unit. A qualitative study. Annals of the American Thoracic Society, 15(2), 241-249.
Miyashita, J., Kohno, A., Yamamoto, Y., Shimizu, S., Azuma, T., Takada, T.,& Fukuhara, S. (2021). How psychosocial factors contribute to Japanese older adults’ initiation of advance care planning discussions: a qualitative study. Journal of Applied Gerontology, 40(10), 1180-1188.
Noonan, K., Horsfall, D., Leonard, R., & Rosenberg, J. (2016). Developing death literacy. Progress in Palliative Care, 24(1), 31-35.
O’Connor, M., Watts, K. J., Kilburn, W. D., Vivekananda, K., Johnson, C. E., Keesing, S., & Leonard, A. D. (2020). A qualitative exploration of seriously ill patients’ experiences of goals of care discussions in Australian hospital settings. Journal of General Internal Medicine, 35(12), 3572-3580.
Palma, A., Aliaga-Castillo, V., Bascuñan, L., Rojas, V., Ihl, F., & Medel, J. N. (2022). An intensive care unit team reflects on end-of-life experiences with patients and families in Chile. American journal of critical care, 31(1), 24-32.
Riedl, D., & Schüßler, G. (2017). The influence of doctor-patient communication on health outcomes: a systematic review. Zeitschrift für Psychosomatische Medizin und Psychotherapie, 63(2), 131-150.
Shaw, M., Hewson, J., Hogan, D. B., Bouchal, S. R., & Simon, J. (2018). Characterizing readiness for advance care planning from the perspective of residents, families, and clinicians: an interpretive descriptive study in supportive living. The Gerontologist, 58(4), 739-748.
Stephens, E., William, L., Lim, L. L., Allen, J., Zappa, B., Newnham, E., & Vivekananda, K. (2021). Complex conversations in a healthcare setting: experiences from an interprofessional workshop on clinician-patient communication skills. BMC Medical Education, 21(1), 343.
Su, Y., Yuki, M., & Hirayama, K. (2020). The experiences and perspectives of family surrogate decision-makers: a systematic review of qualitative studies. Patient Education and Counseling, 103(6), 1070-1081.
Vermorgen, M., Vandenbogaerde, I., Van Audenhove, C., Hudson, P., Deliens, L., Cohen, J., & De Vleminck, A. (2021). Are family carers part of the care team providing end-of-life care? A qualitative interview study on the collaboration between family and professional carers. Palliative medicine, 35(1), 109-119.
Vivekananda, K., Jayawardene, J. S., O’Connor, M., Watts, K. J., Leonard, A. D., Keesing, S., & Johnson, C. E. (2023). Family Carers’ Experiences of Goals of Care Conversations in Acute Hospital Settings. Journal of Applied Gerontology, 42(12), 2304-2312.
Waldron, N., Johnson, C. E., Saul, P., Waldron, H., Chong, J. C., Hill, A. M., & Hayes, B. (2016). Development of a video-based education and process change intervention to improve advance cardiopulmonary resuscitation decision-making. BMC health services research, 16(1), 555.
Wang, K., Sun, F., Liu, Y., Kong, D., & De Fries, C. M. (2022). Attitude toward family involvement in end-of-life care among older Chinese Americans: how do family relationships matter?. Journal of applied gerontology, 41(2), 380-390.
White, C. L., Barrera, A., Turner, S., Glassner, A., Brackett, J., Rivette, S., & Meyer, K. (2022). Family caregivers’ perceptions and experiences of participating in the learning skills together intervention to build self-efficacy for providing complex care. Geriatric Nursing, 45, 198-204.
Wittenberg, E., Ferrell, B., Goldsmith, J., Buller, H., & Neiman, T. (2016). Nurse communication about goals of care. Journal of the advanced practitioner in oncology, 7(2), 146.
You, J. J., Downar, J., Fowler, R. A., Lamontagne, F., Ma, I. W., Jayaraman, D., & Canadian Researchers at the End of Life Network (CARENET. (2015). Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians. JAMA internal medicine, 175(4), 549-556.
Downloads
Published
Issue
Section
License
Copyright (c) 2026 Nur Aima Siagian
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.
