"Hope" for People With Motor Neurone Disease in Japan

Saturday, 29 July 2017

Masako Nagase, PhD
Faculty of Health Care and Nursing, Juntendo University, Urayasu, Japan

The concept of “hope” in end-of-life care for patients with intractable neurological diseases



Purpose:  In this study, we present materials to examine the “hope” harbored by patients with intractable neurological diseases. This study is part of research on the nature of the care system focused on end-of-life care for patients with intractable neurological diseases in Japan. 

Methods:  We conducted an interdisciplinary study using academic papers from various fields including nursing, psychology, and philosophy. 

Results:  Since the 1950s, “hope” has mainly been defined in the context of social science and there have been various attempts at measuring it. However, exploring a unified view of the concept of “hope” is a difficult task. Nekolaichuk writes in her discussion on the nature of “hope” that hope is categorized into seven themes on which it is based: universality, dimensionality, certainty, temporality, predictability, value, and reality.

In the discussion of universality, Nekolaichuk writes how differences can be seen in philosophical standpoints, such as how we perceive “hope” as an ultimate, universal concept, and how we perceive “hope” as a socially constructed concept. The positivism of the former standpoint explores the objective reality and develops a detailed description and unified framework for the concept, whereas the social constructionism of the latter standpoint attempts to understand the various significances formed by multiple people.

The discussion of dimensionality explores whether “hope” is perceived as a one-dimensional or multi-dimensional concept. If the conceptual framework is reliable (certainty), measurement, i.e. observation, should be possible. Snyder and Herth each developed hope indices, but from completely different standpoints. Snyder expands on the one-dimensional theory of Stotland who emphasized goal achievement, and defines “hope” as being composed of cognitive components that recognize pathways and agency. Herth, on the other hand, conceptualizes “hope” in a multi-dimensional framework composed of temporality and future, positive readiness and expectancy, and interconnectedness. However, the experience of “hope” is composed of both visible and invisible elements, which means that while both measuring tools are capable of measuring reliable elements, they do not succeed in understanding the internal, uncertain experience of “hope.”

Studies of “hope” have been conducted in various subjects including elderly people, terminal patients, suicidal patients, caregivers and patients with chronic diseases. These studies have revealed that relationships with significant others and a strong connection with transcendental beings such as God and Buddha influence “hope.” Existential problems also have a deep connection with “hope.” Affirming one’s value, feeling happy about one’s own existence, sensing the significance and development of life, and other ways of thinking all strengthen “hope.” Meanwhile, events that reduce “hope” include threatening perceptions, distress, conflict, sense of loss, and sense of despair.

From the standpoint of the Cognitive Metaphor Theory of linguistics, “hope” is a concept understood through expressions rich in temporal and spatial changes and signifies “a current feeling of happiness towards the good future.” Meanwhile, the similar concept of “desire” signifies “the possibility that a good future will occur” and encapsulates prospects and expectations for the future. Both words are based on the assumption of “a good future.” However, in terms of prognoses for intractable neurological diseases, it is difficult for patients to have “a good future” or “bright prospects.” The “hope” held by patients with intractable neurological diseases is therefore thought to include context-dependent elements.

Conclusion:  Some argue that “hope” is defined in two ways: one that is synonymous with expectation and another that is separate from expectation. “Hope” does not merely signify optimism for the future, but is also based on concepts such as vitality and unconditional love. “Hope” is therefore not limited to clear achievement of goals for the future; it is based on the assumption of trust in an undetermined future.

Meanwhile, in exploring the concept of “hope” in end-of-life care based, the concept of “hope” in cancer and nursing literature is internal and therefore invisible in situations based on the premise of death, and is perceived as having a so-called metaphysical nature. This involves seeking healing and survival, or seeking something separate from healing, while expecting healing to be difficult and anticipating death.

So, what is “hope” to patients with intractable neurological diseases? What are the consequences of supporting patients in finding and maintaining “hope”? To answer these questions, we need to clarify the “hope” held by patients with different conditions including motor neuron disease, multiple sclerosis and Parkinson’s disease.