Embracing family presence: exploring the reasons for family decision-making dependence on in-hospital palliative care for cancer patients

Submitted: 15 November 2023
Accepted: 6 February 2024
Published: 1 March 2024
Abstract Views: 341
PDF: 84
Publisher's note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

Authors

The implementation of home-based palliative care is widely recognized as a commendable and effective model of care provision. However, it is noteworthy that families residing in Indonesia exhibit a propensity to predominantly seek palliative care services within hospital environments for their family members afflicted with palliative-stage cancer. Therefore, the aim of this research was to investigate the perceptions of family members in their decision-making process regarding the care of palliative-stage cancer patients at home. This qualitative study employed a descriptive phenomenological approach. Data were obtained through in-depth interviews with ten Indonesian family members of palliative-stage cancer patients refusing discharge, and were analyzed using the Colaizzi method. Furthermore, the inclusion criteria were that the dominant family member who cares for the patient lives with the patient and is involved in the decision-making process. Two themes emerged from this study: i) a lack of support in decision-making, and ii) pain and chronic sorrow. Home-based palliative care for cancer patients presents significant decision-making challenges and persistent grief for families, necessitating robust support and education from healthcare professionals such as nurses and policymakers. Additionally, a national health insurance system that enables effective palliative care is crucial.

Dimensions

Altmetric

PlumX Metrics

Downloads

Download data is not yet available.

Citations

Feriani P, Yunitasari E, Efendi F, et al. Cancer risk factors associated with historical contraceptive use and breastfeeding duration. Healthc Low-Resource Settings 2023;11:11812. DOI: https://doi.org/10.4081/hls.2023.11812
WHO. World Health Statistics. 2020. Available from: https://www.who.int/publications/i/item/9789240005105
Ansar A, Lewis V, McDonald CF, et al. Factors influencing the timeliness of care for patients with lung cancer in Bangladesh. BMC Health Serv Res 2023;23:261. DOI: https://doi.org/10.1186/s12913-023-09154-8
Cunha AR Da, Compton K, Xu R, et al. The global, regional, and national burden of adult lip, oral, and pharyngeal cancer in 204 countries and territories: a systematic analysis for the Global Burden of Disease Study 2019. JAMA Oncol 2023;9:1401-16. DOI: https://doi.org/10.1001/jamaoncol.2023.2960
Mohamad Razif MI, Nizar N, Zainal Abidin NH, et al. Emergence of mRNA vaccines in the management of cancer. Expert Rev Vaccines 2023;22:629-42. DOI: https://doi.org/10.1080/14760584.2023.2232450
Sung H, Ferlay J, Siegel RL, et al. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin 2021;71:209-49. DOI: https://doi.org/10.3322/caac.21660
Hasanah I, Nursalam N, Krisnana I, et al. Psychoneuroimmunological markers of psychological intervention in pediatric cancer: a systematic review and new integrative model. Asian Nurs Res (Korean Soc Nurs Sci) 2023;17:119-37. DOI: https://doi.org/10.1016/j.anr.2023.07.001
Budhy TI, Naori P, Ridhatillah D, et al. The potency of chitosan-based moringa oleifera leaves extract nanoparticles as anti-cancer agent. Res J Pharm Technol 2023;16:35-40. DOI: https://doi.org/10.52711/0974-360X.2023.00007
Dewi FRP, Wahyuningsih SPA, Sari APM, et al. Annonacin and squamocin conjugation with nanodiamond alters metastatic marker expression in breast cancer cell line. HAYATI J Biosci 2024;31:211-20. DOI: https://doi.org/10.4308/hjb.31.2.211-220
Ahlner-Elmqvist M, Jordhøy MS, Jannert M, et al. Place of death: hospital-based advanced home care versus conventional care. Palliat Med 2004;18:585-93. DOI: https://doi.org/10.1191/0269216304pm924oa
Roberts B, Robertson M, Ojukwu EI, Wu DS. Home based palliative care: known benefits and future directions. Curr Geriatr Reports 2021;10:141-7. DOI: https://doi.org/10.1007/s13670-021-00372-8
Yamagishi A, Morita T, Kawagoe S, et al. Talking about home hospices with terminally ill cancer patients - a multicenter survey of bereaved families. Gan to Kagaku Ryoho 2015;42:327-33.
Lee SF, Kristjanson LJ, Williams AM. Professional relationships in palliative care decision making. Support Care Cancer 2009;17:445-50. DOI: https://doi.org/10.1007/s00520-008-0516-z
Onishi E, Nakagawa S, Uemura T, et al. Physicians’ perceptions and suggestions for the adaptation of a US-based serious illness communication training in a non-US culture: a qualitative study. J Pain Symptom Manage 2021;62:400-9.e3. DOI: https://doi.org/10.1016/j.jpainsymman.2020.11.035
Cardenas V, Rahman A, Zhu Y, Enguidanos S. Reluctance to accept palliative care and recommendations for improvement: findings from semi-structured interviews with patients and caregivers. Am J Hosp Palliat Care 2022;39:189-95. DOI: https://doi.org/10.1177/10499091211012605
Cherny N, Fallon M, Kaasa S, et al. Oxford Textbook of Palliative Medicine. Oxford University Press; Oxford, UK; 2015. DOI: https://doi.org/10.1093/med/9780199656097.001.0001
Gomes B, Calanzani N, Curiale V, et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev 2013;2013. DOI: https://doi.org/10.1002/14651858.CD007760.pub2
Krisdiyanto BF, Dahlia D, Waluyo A. On home-based care decision making: the will of the family of palliative cancer patients. Enferm Clin 2019;29:111-6. DOI: https://doi.org/10.1016/j.enfcli.2019.04.017
Kristanti MS, Kusmaryanto, Effendy C. Common ethical dilemmas of family caregivers of palliative patients in Indonesia. Belitung Nurs J 2021;7:246. DOI: https://doi.org/10.33546/bnj.1457
Abdullah MB, Huriah T, Arianti A, Sarkasi RB. Nurse’s roles in patient-family decision making for palliative patients in Indonesia and Malaysia. Open Access Maced J Med Sci 2021;9:6-17. DOI: https://doi.org/10.3889/oamjms.2021.5594
Widjaja SS, Rusdiana R, Jayalie VF, Amelia R. What contributes to palliative care practice in cancer patients in Indonesia. Med Arch 2022;76:464. DOI: https://doi.org/10.5455/medarh.2022.76.464-468
Putranto R, Mudjaddid E, Shatri H, et al. Development and challenges of palliative care in Indonesia: Role of psychosomatic medicine. Biopsychosoc Med 2017;11:1-5. DOI: https://doi.org/10.1186/s13030-017-0114-8
van Manen M, Higgins I, van der Riet P. A conversation with Max van Manen on phenomenology in its original sense. Nurs Health Sci 2016;18:4-7. DOI: https://doi.org/10.1111/nhs.12274
Bastawrous M. Caregiver burden--a critical discussion. Int J Nurs Stud 2013;50:431-41. DOI: https://doi.org/10.1016/j.ijnurstu.2012.10.005
Damanhuri G. What factors influence the terminally ill patient referred to the hospital specialist palliative care team in a NHS hospital, not achieving their preferred place of death? A critical evaluation. BMJ Support Palliat Care 2014;4:A54-55. DOI: https://doi.org/10.1136/bmjspcare-2014-000654.155
Azza A, Susilo C, Efendi F. Supportive group therapy as a prediction of psychological adaptation of breast cancer patients undergoing chemotherapy. Indian J Public Heal Res Dev 2018;9:441-5. DOI: https://doi.org/10.5958/0976-5506.2018.01384.0
Effendy C, Vissers K, Tejawinata S, et al. Dealing with symptoms and issues of hospitalized patients with cancer in indonesia: the role of families, nurses, and physicians. Pain Pract 2015;15:441-6. DOI: https://doi.org/10.1111/papr.12203
Rochmawati E, Wiechula R, Cameron K. Current status of palliative care services in Indonesia: a literature review. Int Nurs Rev 2016;63:180-90. DOI: https://doi.org/10.1111/inr.12236
Ferrell BR, Borneman T. Community implementation of home care palliative care education. Cancer Pract 2002;10:20-7. DOI: https://doi.org/10.1046/j.1523-5394.2002.101003.x
Indonesia Basic Health Research 2018. Available from: https://ghdx.healthdata.org/record/indonesia-basic-health-research-2018
Kristanti MS, Setiyarini S, Effendy C. Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training. BMC Palliat Care 2017;16. DOI: https://doi.org/10.1186/s12904-016-0178-4
Bisset M. Palliative care nursing: principles and evidence for practice. Br J Cancer 2005;92:794-5. DOI: https://doi.org/10.1038/sj.bjc.6602371
Woodman C, Baillie J, Sivell S. Relatives’ preferred place of care at the end-of-life: implications for palliative care in the future. BMJ Support Palliat Care 2015;5:116-7. DOI: https://doi.org/10.1136/bmjspcare-2014-000838.38
Fiona W, Oloruntobi R, Roberto LC, Tarannum R. The feasibility and effects of a telehealth-delivered home-based prehabilitation program for cancer patients during the pandemic. Curr Oncol 2021;28:2248-59. DOI: https://doi.org/10.3390/curroncol28030207
Fouquet C, Brédart A, Bouleuc C. [Coping among patients with advanced cancer and medical communication]. Bull Cancer 2013;100:887-95. DOI: https://doi.org/10.1684/bdc.2013.1798
Shalev A, Phongtankuel V, Kozlov E, et al. Awareness and misperceptions of hospice and palliative care: a population-based survey study. Am J Hosp Palliat Care 2018;35:431-9. DOI: https://doi.org/10.1177/1049909117715215
Nihayati HE, Nurhanifah L, Krisnana I. The effect of psychoeducation on self-efficacy and motivation for taking treatment in breast cancer patients (Ca Mammae). J Ners 2021;16:96-100. DOI: https://doi.org/10.20473/jn.v16i1.22560
Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 2012;30:880-7. DOI: https://doi.org/10.1200/JCO.2011.38.5161
Brazil K, Bainbridge D, Rodriguez C. The stress process in palliative cancer care: a qualitative study on informal caregiving and its implication for the delivery of care. Am J Hosp Palliat Care 2010;27:111-6. DOI: https://doi.org/10.1177/1049909109350176
Soosaipillai G, Wu A, Dettorre GM, et al. Specialist palliative and end-of-life care for patients with cancer and SARS-CoV-2 infection: a European perspective. Ther Adv Med Oncol 2021;13.
Murtagh FEM, Bausewein C, Verne J, et al. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med 2014;28:49-58. DOI: https://doi.org/10.1177/0269216313489367
Natalucci V, Marini CF, Flori M, et al. Effects of a home-based lifestyle intervention program on cardiometabolic health in breast cancer survivors during the COVID-19 lockdown. J Clin Med 2021;10. DOI: https://doi.org/10.3390/jcm10122678
Rochmawati E, Wiechula R, Cameron K. Centrality of spirituality/religion in the culture of palliative care service in Indonesia: An ethnographic study. Nurs Health Sci 2018;20:231-7. DOI: https://doi.org/10.1111/nhs.12407

How to Cite

Krisdianto, B. F., Dahlia, D., & Waluyo, A. (2024). Embracing family presence: exploring the reasons for family decision-making dependence on in-hospital palliative care for cancer patients. Healthcare in Low-Resource Settings, 12(3). https://doi.org/10.4081/hls.2024.12097

Similar Articles

You may also start an advanced similarity search for this article.