PRESERVING PATIENT AUTONOMY AT THE END OF LIFE: A LEGAL APPRAISAL OF THE POSITION OF ADVANCED MEDICAL DIRECTIVES IN MALAYSIA AND INDONESIA

Authors

  • Fadhlina Alias Faculty of Syariah and Law, Universiti Sains Islam Malaysia, 71800 Nilai, Negeri Sembilan, Malaysia https://orcid.org/0000-0001-7491-7717
  • Diah Martina Division of Psychosomatic and Palliative Medicine, Department of Internal Medicine, Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia / Cipto Mangunkusumo National General Hospital, Jakarta, Indonesia https://orcid.org/0000-0002-0889-223X
  • Muh. Endriyo Susila Faculty of Law, Universitas Muhammadiyah Yogyakarta, Yogyakarta, Indonesia https://orcid.org/0000-0002-1226-3321
  • Rizaldy Anggriawan Faculty of Law and Political Sciences, University of Szeged, 6720, Dugonics tér 13, Szeged, Hungary

DOI:

https://doi.org/10.33102/mjsl.vol12no2.679

Keywords:

Advance care planning, advance directives, end-of-life care, Malaysian law, Indonesia law

Abstract

Respect for patient autonomy is a bioethical principle that has become increasingly imperative, particularly in the 21st century. However, in many Asian countries, medical paternalism to a larger degree remains prevalent in the healthcare setting. While a doctor is ethically and legally bound to respect a patient's values and wishes in administering treatment, the duty to do so is more complex in end-of-life care, where the patient is unable to partake in the decision-making process. Accordingly, it has been argued that advanced medical directives (AMDs) could ensure that the patient's right to make autonomous decisions is preserved and will not be defeated by any future incapacity. It also serves to extenuate the ethical dilemma faced by doctors in determining the course of treatment according to the incompetent patient's wishes. In turn, this facilitates healthcare providers to manage the distribution of scarce medical resources effectively. The need for AMDs is seen to be increasingly pressing in ageing countries such as Malaysia and Indonesia, where end-of-life care has yet to be integrated into mainstream healthcare services. This paper seeks to discuss the viability of integrating AMDs into the Malaysian and Indonesian regulatory frameworks on health care, by employing the qualitative method of content analysis of both primary and secondary sources of the two countries. Findings show that statutory reform is both recommended and necessary to ensure better management of medical resources, as well as to promote the delivery of a more inclusive and compassionate healthcare system.

Downloads

Download data is not yet available.

References

Alias, F., Jahn Kassim, P. N., & Abdullah, M. N. (2020). Dying wishes: Understanding advance medical directives from the Malaysian and Islamic law perspectives. ‘Ulum Islamiyyah, 32(2), 17-39.

Alias, F., Jahn Kassim, P. N., & Baharuddin, A. S. (2021). Integrating religious considerations in end-of-life care in Malaysia: An ethico-legal perspective. Studies in Interreligious Dialogue, 31(2), 153-177. https://doi.org/10.0000/SID.31.2.0000000

Andorno, R., Biller-Andorno, N., & Brauer, S. (2009). Advance health care directives: Towards a coordinated European policy?. European Journal of Health Law, 16(3), 207-227. https://doi.org/10.1163/157180909X453053

Arisanti, N., Sasongko, E. P. S., Pandia, V., & Hilmanto, D. (2019). Implementation of palliative care for patients with terminal diseases from the viewpoint of healthcare personnel. BMC Research Notes, 12(1), 1-5. https://doi.org/10.1186/s13104-019-4260-x

Astroff, R. E. (1997). Who lives, who dies, who decides: Legal and ethical implications of advance directives. Windsor Review of Legal & Social Issues, 7(1), 1–34.

Beng, T. S., Guan, N. C., Seang, L. K., & et al. (2013). The experiences of suffering of palliative care informal caregivers in Malaysia: A thematic analysis. The American Journal of Hospice & Palliative Care, 30(5), 473-489.

Betancourt, J. R. (2004). Cultural competence--marginal or mainstream movement?. New England Journal of Medicine, 351(10), 953–955.

Billings, J. A., & Krakauer, E. L. (2011). On patient autonomy and physician responsibility in end-of-life care. Archives of Internal Medicine, 171(9), 849–853.

Brett, A. S., & McCullough, L. B. (2012). Addressing requests by patients for nonbeneficial interventions. Journal of the American Medical Association, 307(2), 149–150.

Capron, A. M. (2009). Advance directives. In H. Kuhse & P. Singer (Eds.), A companion to bioethics (2nd ed., pp. 299–311). West Sussex: John Wiley & Sons.

Chan, H. Y. (2018). Regulating advance decision-making: Potential and challenges for Malaysia. Asian Bioethics Review, 11(1), 111-112. https://doi:10.1007/s41649-019-00078-2

Chater, K., & Tsai, C. T. (2008). Palliative care in a multicultural society: A challenge for Western ethics. Australian Journal of Advanced Nursing, 26(2), 95–100.

Cherny, N. I. (2003). ESMO takes a stand on supportive and palliative care. Annals of Oncology, 14(9), 1335–1337.

Clark, D., Baur, N., Clelland, D., Garralda., López-Fidalgo, J., Connor, S., & Centeno, C. (2020). Mapping levels of palliative care development in 198 countries: The situation in 2017. Journal of pain and symptom management, 59(4), 794–807.e4. https://doi.org/10.1016/j.jpainsymman.2019.11.009

Colello, K. J., Mulvey, J., Sarata, A. K., Williams, E. D., & Thomas, K. R. (2011). End-of-life care: Services, costs, ethics, and quality of care. In S. B. Adams (Ed.), Comfort and care at the end of life (pp. 41-68). Washington: Nova Science Publishers.

Da Rocha, A. C. (2009). Back to basics in bioethics: Reconciling patient autonomy with physician responsibility. Philosophy Compass, 4(1), 56-68.

Daaleman, T. P. (2000). Placing religion and spirituality in end-of-life care. Journal of the American Medical Association, 284, 2514-2517.

Davis, M. P., & Kuebler, K. K. (2007). Palliative and end-of-life care perspectives. In K. K. Kuebler, D. E. Heidrich, & P. Esper (Eds.), Palliative & end-of-life care: Clinical practice guidelines (2nd ed., pp. 19-32). St. Louis: Saunders Elsevier.

Emanuel, L. L., von Gunten, C. F., & Ferris, F. D. (2020). Advance care planning. Archives of Family Medicine, 9(10), 1181-1187. https://doi.org/10.1001/archfami.9.10.1181

Fauziningtyas, R. (2018). Advance care planning: An educational intervention for the elderly in Indonesia. In Proceedings of the 9th International Nursing Conference (INC 2018) (pp. 67-72).

Finkelstein, E. A., Bhadelia, A., Goh, C., Baid, D., Singh, R., Bhatnagar, S., & R Connor, S. (2022). Cross-country comparison of expert assessments of the quality of death and dying 2021. Journal of Pain and Symptom Management, 63(4), e419-e429.

House of Lords. (1994). Report of the select committee on medical ethics (HL Paper 21-I). HMSO.

Htut, Y., Shahrul, K., & Poi, P. J. H. (2007). The views of older Malaysians on advanced directive and advanced care planning: A qualitative study. Asia-Pacific Journal of Public Health/ Asia-Pacific Academic Consortium for Public Health, 19(3), 58–67.

Kassim, P. N., & Alias, F. (2015). Advance directives for medical treatment: The current legal status. Malayan Law Journal, 3, i-cxxii.

Katiman, D., Shaikh Mohd Salleh, S. M. S., Ismail, H., & Abu Shamsieh, K. (2022). Exploring end-of-life issues and determination of the surrogacy ladder in Malaysia. Environment-Behaviour Proceedings Journal, 7(22), 63–69. https://doi.org/10.21834/ebpj.v7i22.4150

Kinzbrunner, B. M. (2005). Palliative care perspectives. In K. K. Kuebler, M. P. Davis, & C. D. Moore (Eds.), Palliative practices: An interdisciplinary approach (pp. 3-28). St. Louis: Elsevier Mosby.

Koh, T. L., Tajudin, T. R., & Abdulshakour, Z. (2017). Advance directives among elderly population: A Malaysian experience. Journal of the Indian Academy of Geriatrics, 13, 62–67.

Lim, M. K., Lai, P. S. M., Lim, P. S., Wong, P. S., Othman, S., & Mydin, F. H. M. (2022). Knowledge, attitude and practice of community-dwelling adults regarding advance care planning in Malaysia: a cross-sectional study. BMJ Open, 12(2), e048314. https://doi.org/10.1136/bmjopen-2020-048314

Lim, R. B. (2004). Palliative care in Malaysia: A decade of progress and going strong. Journal of Pain & Palliative Care Pharmacotherapy, 17(3-4), 77–89.

Loh, K. Y. (2006). Exploring terminally ill patients’ and their families’ perceptions of holistic care in Malaysia. International Journal of Palliative Nursing, 12(1), 38–42.

Maclean, A. R. (2006). Advance directives, future selves, and decision-making. Medical Law Review, 14(3), 291-230.

Mageswari, M. (2014, December 8). ‘Living will’ for the terminally ill – nation. The Star Online. https://www.thestar.com.my/News/Nation/2014/12/08/Living-will-for-the-terminally-ill-AMD-gives-patients-greater-say-on-how-they-wish-to-die/. Accessed 30 June 2023

Mahendradhata, Y., Trisnantoro, L., Listyadewi, S., Soewondo, P., Marthias, T. & et al. (‎2017)‎. The Republic of Indonesia health system review. Health Systems in Transition, 7 (‎1)‎, WHO Regional Office for South-East Asia. https://iris.who.int/handle/10665/254716

Majelis Kehormatan Etik Kedokteran Indonesia. (2004). Kode Etika Kedokteran. Fakultas Kedokteran, University of North Sumatra.

Martina, D., Kustanti, C. Y., Dewantari, R., & et al. (2022). Developing a framework for advance care planning in Indonesia: A mixed methods study. BMC Palliative Care, 21(1), 1-12. https://doi.org/10.1186/s12904-021-00862-0

National Hospice Organization. (1997). Standards of practice for hospice programs. National Hospice Organization.

Olsen, M. L., Swetz, K. M., & Mueller, P. S. (2010). Ethical decision making with end-of-life care: Palliative sedation and withholding or withdrawing life-sustaining treatments. Mayo Clinic Proceedings, 85(10), 949-954.

Padela, A. I. (2006). Medical ethics in religious traditions: A study of Judaism, Catholicism, and Islam. Journal of the Islamic Medical Association, 38, 106-117.

Pellegrino, E. D., & Thomasma, D. C. (1988). For the patient’s good: The restoration of beneficence in health care. Oxford University Press.

Pesut, B., Thorne, S., Greig, M., Fulton, A., Janke, R., & Vis-Dunbar, M. (2020). Ethical, policy, and practice implications of nurses’ experiences with assisted death: A synthesis. Advances in Nursing Science, 43(2), 216-230.

Petrini, C. (2013). Commentary on the ethical issues in health technology assessment (HTA) of palliative care in terminal cancer patients. BMC Palliative Care, 12(1), 1-9. https://doi.org/10.1186/1472-684X-12-14

Pino, M. C., & Parente, A. (2021). Ethics of palliative care in patients with incurable cancer. Acta Bioethica, 27(1), 121-131. https://doi.org/10.4067/S1726-569X2021000100121

Priya, G. (2018, April 2). Have an advance directive and spare your family trauma. The Star Online. https://www.thestar.com.my/opinion/columnists/without-a-trace/2018/04/02/have-an-advance-directive-and-spare-your-family-trauma/. Accessed 30 June 2023

Sahil, K. B. (2004). Law and ethics in palliative care. In M. D. Ferrell, N. Coyle, & J. Paice (Eds.), Oxford Textbook of Palliative Nursing (pp. 103-116). Oxford: Oxford University Press.

Savulescu, J., Crisp, R., & Rumbold, B. (2003). Advance directives and the withholding or withdrawing of life-sustaining treatment. Journal of Law and Medicine, 11(1), 22-26.

Shaikh, M. A., & Rahman, R. (2001). Palliative care for Muslims and issues before Islamic jurists. The Lancet, 358(9279), 1300-1301. https://doi.org/10.1016/S0140-6736(01)06445-9

Sheikh, A., Gatrad, R., & Sheikh, U. (2000). Palliative care and Islam. In A. Sheikh & R. Gatrad (Eds.), Caring for Muslim patients (pp. 24-38). Oxford: Radcliffe Medical Press.

Singh, M. P., & Ramli, M. (2005). End-of-life issues in medical ethics: Malaysian perspectives. Ethics and Medicine, 21(3), 147–153.

Stefanek, M. E., Merluzzi, T. V., Philip, E. J., & et al. (2022). Palliative care in cancer: Addressing the quality of life of patients and families. American Psychologist, 77(1), 51-64. https://doi.org/10.1037/amp0000861

UNESCO. (2005). “Universal Declaration on Bioethics and Human Rights”. United Nations Educational, Scientific and Cultural Organization. https://unesdoc.unesco.org/ark:/48223/pf0000146180

Van der Heide, A., Deliens, L., Faisst, K., Nilstun, T., Norup, M., Paci, E., van der Wal, G., & van der Maas, P. J. (2003). End-of-life decision-making in six European countries: Descriptive study. Lancet, 362, 345–350.

Vollmann, J., & Hermann, H. (2006). The patient’s wish to die: Research ethics and palliative care. Cambridge Quarterly of Healthcare Ethics, 15(3), 317–321.

Wolff, J., & de-Shalit, A. (2007). Disadvantage. Oxford: Oxford University Press.

World Health Organization. (2002). National cancer control programmes: Policies and managerial guidelines (2nd ed.). World Health Organization.

World Health Organization. (2004). A community health approach to palliative care for HIV/AIDS and cancer patients in Sub-Saharan Africa. World Health Organization.

World Health Organization. (2020). Palliative care. World Health Organization. https://www.who.int/news-room/fact-sheets/detail/palliative-care

Yip, P. K. (2001). The introduction of palliative care to a developing country: Malaysia. In M. E. Hughes & M. J. Hockenberry (Eds.), Palliative care in the developing world: Principles and practice (pp. 147-158). Oxford University Press.

Yusof, A. N. (2015, April). “AMD: Pesakit tentukan hak rawatan”. IKIMfm. https://ikimfm.my/amd-pesakit-tentukan-hak-rawatan/

Zahra, F., & Siti Nazariah, A. R. (2020). Islamic perspectives in palliative care: Malaysian context. Malaysian Journal of Medicine and Health Sciences, 16(4), 153-157.

Published

2024-08-31

How to Cite

Alias, F., Martina, D., Susila, M. E., & Anggriawan, R. (2024). PRESERVING PATIENT AUTONOMY AT THE END OF LIFE: A LEGAL APPRAISAL OF THE POSITION OF ADVANCED MEDICAL DIRECTIVES IN MALAYSIA AND INDONESIA. Malaysian Journal of Syariah and Law, 12(2), 296–310. https://doi.org/10.33102/mjsl.vol12no2.679