Palliative Care: Opportunities for Nursing.

Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a curriculum and distance learning developer for www.Cure4Kids.org, the educational website of the International Outreach Program of St. Jude Children's Research Hospital in Memphis, TN. In 2002, she retired from a faculty position from the University of Alabama at Birmingham, where she taught Adult Health Nursing for 25 years. Her nursing degrees were from the University of Santo Tomas, Manila, Philippines, Teacher's College, Columbia University in New York, NY and The University of Alabama at Birmingham, Birmingham, AL. Among her many professional awards include the Oncology Nursing Society's Pearl Moore Making a Difference Award in Oncology Nursing, International Award for Contributions in Cancer Care and the End of Life Nursing Education Consortium award for Pediatric Education.

Although the art of palliative and end-of-life care has been practiced since the ancient times, the science only begun its formal developments through the efforts of Dame Cicely Saunders, who, as a nurse, took notice of the excruciating pain and suffering of her patients. It is a personal assumption that the professional powerlessness and the compassion that she may have felt as a nurse compelled Dame Cecily to become a physician. As a physician, she established St. Christopher's Hospice in London and globally starts the palliative care revolution. Over time, the Hospice movement evolved into today's palliative Care, and through many refinements, it is now recognized as a subspecialty science in health care and a universal health right.

The world is an aging society. The world's population of people over age 60 years is expected to rise in 2050–1.6 billion, accounting for 22% of the world's population. Further, in Asia and in the Latin American countries, the oldest old population is expected to quadruple. It is predicted that the most common health problem of this group will be from noncommunicable diseases, with the elderly from less developed and developing countries experiencing increased disease burden.[1] Palliative care will then be in the prime position to provide the needed care for this aging population group.

In many countries of the world, the term palliative care is used synonymously with end-of-life care. Although they share the same philosophy of palliation as the primary focus, the actual provision of care differs. It might be wise to truly understand the terms even at least conceptually. Palliative care is a much broader service that evolved from end-of-life (or Hospice) care. Described by the World Health Organization as “an approach that improves the quality of life of patients and their families; it also refers to any care given to alleviate symptoms, whether or not there is hope for cure by other means.”[2] The goals of palliative care are concrete: relief of suffering, treatment of pain and other distressing symptoms, provision of psychological and spiritual care, and a support system for the patients and their family, who are in the early stages of their disease trajectory and/or regardless of the illness outcome.[3] End-of-life care is a type of care that involves palliation without the intent of cure. Its goals can be summed into 5 C's: communication, collaboration, compassion, care, and cultural/spiritual care. Often, it is used for patients when cure is no longer an option and in some cases, it is measured by a predicted survival time of 6 months.[4]

The aim of this issue is to share experiences in developing and providing palliative and end-of-life care. It also serves as a challenge for collaboration and support for one another in the efforts to improve palliative and end-of-life care in the region.

The present realities demonstrate a world of inequity not only between developed and underdeveloped countries but also within the country itself. If at all present in the country, palliative care programs and the provision of services are developed with different intensity and modality.[567] Spruyt described these inequities in her editorial comments while Yu and her group shared the circumstances, challenges, and the factors that influenced the development of a palliative program in China. Further, Goh shared the successful Singapore experience and the importance of governmental commitment in the continued development and provision of palliative care. Yet, there is much to be done.

Both palliative and end-of-life care share the same philosophy and the concept of multidisciplinary team approach to care. The authors who participated in this issue alluded to the importance of multidisciplinary team approach and emphasized the important role of nurses in coordinating the care on behalf of the patients and their families. In their editorial comments, Schroeder and Lorenz wrote about the many roles and the flexibility within these nursing roles that would allow nurses to be the lead health-care professional to deliver palliative and end-of-life care. Akyar et al. described a care delivery model, Educate, Nurture, Advice, Before Life Ends that use nursing support through patient and family education. The model demonstrates what nurses can do to improve the patient's quality of life while maintaining autonomy over their care. Currently being duplicated in Turkey and Singapore, Akyar et al. also describe how one model of care can be transported and adapted for local use in different countries of the world. All it takes is everyone's collaborative efforts and willingness to share for a common good.

Nurses are the mainstay professional in the palliative care team, providing frontline care. Because nurses play a critical role in the provision of care, the editors and the contributing authors of this special journal issue, unanimously agree that nurses should be professionally supported through education, training, and research. Takenouchi described how Japan responded to the need for education by translating and offering the End of Life Nursing Education Consortium (ELNEC) course. Starting small with the core course, they have now expanded the offerings to include the ELNEC Population courses (Geriatrics, Critical Care, and others); consequently training more than 28,000 nurses in. 47 prefectures. Malloy et al. also shared the many ELNEC initiatives in Asia through the collaborative efforts between ELNEC and many Asian nursing leaders. Goh also describes how Singapore started awareness by integrating palliative care content into the medical curricula and the country's efforts in continuing education for all of Singapore's health-care providers. Together, it is making a difference not only in the practice of nursing but in the care of dying patients and their families as well.

Empowerment is key in any role development and execution. In many Asian and other developing countries (especially where the culture of paternalism pervades), differences in professional equality still exist. Nurses are often seen as “secondary health-care providers” or as medical assistants. In addition, differences in basic nursing education creating different levels of practice may also account for the confusion regarding what nurses can truly do.[8] Takenouchi, Malloy et al., and Spruyt discussed the importance of educating nurses so they can not only be better advocates for patients and their families but also be empowered to advocate for themselves as an equal member of the palliative care team. The specialty of palliative care provides a great opportunity for nurses to showcase what truly is nursing and how they can greatly contribute to health-care delivery.

Palliative and end-of-life care is a relatively young science yet; its art lies in the uniqueness of each and every patient's and families's experiences that is so openly shared with the nurse. It is truly a privilege to be a palliative care provider and to join the patients and the families in their journey. If this is not a good enough reason to continue our work through sharing, coordination and collaboration, what is?

It is a great privilege to serve as a guest editor for this special issue. My deepest gratitude to the contributors for their willingness to share their work and their openness to collaborate with one another. From the Philippines, thank you and Mabuhay!

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.