Empowering Nurses through End-of-Life Nursing Education in Asia: Nurses as Advocates for Patients’ Dignity

No other health-care professional spends more time with patients at the end-of-life stage than the nurse, who is responsible for assessing and supporting patients’ physical, psychological, social, and spiritual needs. Therefore, nurses are expected to provide quality palliative/end-of-life care that maintains the dignity and improves the quality of life (QOL) of patients who are entering the last chapter of their lives. However, nurses can only practice what they know. In this article, I explore the ways of empowering nurses in Asian countries through culturally appropriate palliative nursing education, which would contribute to the common nursing goal of advocating patient dignity for patients with cancer and enabling them to have peace of mind until their last moment.

More than Half of Cancer Deaths Occur in Asia

Sixty percent of the world's population (4.5 billion) live in Asian countries,[1] and the percentage of the population aged 65 years or older is rapidly increasing. In 2012, the estimated prevalence of cancer throughout Asia, including the Western Pacific and Southeast Asian regions under the WHO categories, accounted for 44.5% of cancer incidence worldwide.[1] When calculated based on statistical information,[1] the number of cancer deaths throughout Asia (4.15 million) accounts for 51.1% of cancer deaths worldwide. The burden of cancer in this region is estimated to increase, with mortality rising from 4.6 million in 2015 to 6.9 million in 2030, by 2030, owing to the influence of the rapid aging of society.[2] Given these circumstances in the health-care systems of Asian countries, it is necessary to raise awareness of the nurses’ role in providing culture-specific, quality palliative care to the ever-growing number of cancer patients, and in practicing end-of-life care that maintains patient dignity. It is likewise exceedingly important that both developed and developing countries collaborate to promote efforts in establishing a foundation and network for disseminating palliative care nursing education.

Nurses Play Important Roles in Maximizing Patients’ Quality of Life

In many Asian countries, palliative care as a humanitarian need is not widely available for people suffering from the advanced stages of cancer, when there is a little chance for cure. A major factor is that both the concept of palliative care and best practice principles are not well-understood by health-care professionals. In promoting palliative care, the government of each Asian country must focus on improving health and welfare services to incorporate palliative care programs. Apart from calling for infrastructure development, stakeholders should facilitate the education of nurses in palliative/end-of-life care. Knowledge and cultural awareness will empower nurses to realize their role as patients’ advocates in their practice of quality palliative care, and consequently, provide care that could maximize patients’ QOL.

Key Components of Nursing Education

Nurses assist patients and patients’ family members in managing symptoms and suffering through proper assessment of patients’ self-care capacity, regardless of the place of care. Incorporating knowledge of palliative nursing care into nurses’ daily practice would doubtlessly improve patients’ QOL. In consideration of Asia's unique cultural background, nursing education programs in Asia should include concepts of palliative care, symptom management, family support, ethical issues, cultural consideration, and multidisciplinary approaches. The relevant discourse in countries where modern palliative care has been widely spread delves into the ethical issues related to patients’ autonomy, shared decision-making, withholding or withdrawing treatment, and advance care planning (ACP). However, in many developing Asian countries, access to palliative care itself is a primary issue, owing to low drug availability and poor funding for the implementation of services. Ethically sound nursing practices will only take root if nurses are able to deliberate on the best course of action for preventing and relieving the suffering associated with life-threatening illnesses.

Introduction of the End-of-Life Nursing Education Consortium in Japan

Nurses in Japan used to provide care without appropriate knowledge of how to assist patients and patients’ families facing the end-of-life stage, due to the wide variance in Japan's palliative care education into the 2000s. This situation emphasized the pressing need to train nursing educators in Japan, as well as in other Asian countries.[3,4]

The End-of-Life Nursing Education Consortium (ELNEC) Core curriculum was translated in 2005 as a solution to this, and has made a significant contribution to Japanese nurses.[4] The original ELNEC was developed in partnership between the City of Hope Medical Center and the American Association of Colleges of Nursing in the United States in 2000.[5] The first ELNEC-Japan Core Curriculum was launched in 2008 with support from the Japan Society for Palliative Medicine (JSPM). Since then, major revisions have been made to match Japan's own cultural background. Subsequently, 18 national training courses have been hosted by the JSPM, and 1,793 nurses from the 47 prefectures of Japan have been trained to deliver the ELNEC-Japan Core Curriculum. In the past 6 years, these trainers have taught 751 courses throughout Japan, in which they trained more than 23,905 nurses.[6] Trainers of the ELNEC-Japan Core curriculum have evaluated the program highly and reported an increase in the length and frequency of education sessions on palliative care nursing that they delivered after completing the ELNEC-Japan train-the-trainer course. Subsequently, the ELNEC-Japan has introduced the ELNEC-Japan Geriatric and ELNEC-Japan Critical Care curricula after these were translated in 2011 and 2014, respectively. Meanwhile, the ELNEC-Japan Pediatric Palliative Care curriculum is under development.

Collaboration between professional nursing educators and nursing experts in each clinical setting is also essential to build robust educational programs such as the ELNEC that can not only alleviate patients’ unbearable suffering at the end-of-life but also improve QOL. Ultimately, those nurses who have trained with such an educational program will play an active role in promoting quality palliative care, and can also benefit other professional team members in health-care settings.

Educating Nurses to Assist in Advance Care Planning

ACP is defined as a “process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care.”[7] The importance of ACP has been recognized, as supported by an increasing number of published research findings. ACP has been shown to improve patient and family satisfaction and increase the probability of receiving medical care in line with patients’ wishes.[8] The concept of ACP has been introduced in Hong Kong, Taiwan, South Korea, Malaysia, Japan, and other Asian countries, but discussions are continuing on how nurses can adequately support the process of ACP based on an awareness of each patient's's unique cultural background, which affects their values. It is highly recommended that the educational contents of ACP be institutionalized as a module in standard nursing education, so that nurses can become adovocates for patients’ dignity. Research outcomes on ACP in countries such as South Korea, Singapore, China, and Japan have shown nurses being involved in end-of-life discussions with their patients and patients’ family members as advocates of patients’ dignity. As such, implementing this relatively new concept in Southeast Asia can be expected to yield similar results.

Collaborative Partnership in Research and Education

At present, research that brings countries into close collaborative partnership to focus on the shared understanding of issues surrounding palliative/end-of-life care has not been conducted in Asia. Research is also overdue in the areas of constructing and implementing end-of-life education for nurses within the context of Asia's unique cultural background. The traditional vew has been that physicians are the ones who lead research for improving patient outcomes in Asian countries. The time has come for nurses, as patient advocates, to transmit into practice those research findings on the impacts of quality nursing care and collaboration with multidisciplinary team members on patients’ QOL. Further, nurses in Asia are called on to serve as patients’ advocates and ensure that patients live with dignity until the end.

Across the 48 countries in Asia, nurses work under various health-care situations. Some may not have sufficient medication supplies to relieve cancer symptoms, or some may feel powerless in the face of complex ethical issues. However, regardless of nationality or ethnicity, as a nurse who is a patient advocate, we share a common mission to meet patients’ needs, assess their full potential, and assist them in actualizing that potential through everyday nursing practice, education, and research on palliative/end-of-life care.

Financial support and sponsorship

Grants-in-aid for Scientific Research (KAKENHI), Japan Society for the Promotion of Science.

Conflicts of interest

There are no conflicts of interest.