**Abstract**

There have been suicides at the Hansen's disease sanatoria in the past. What is the level of suffering that makes a person think of suicide? This study is divided into two reports. In the first report, we demonstrate the conceptual structure of spirituality and the relationship between quality of life (QOL) and spirituality, and the history of Hansen's disease. In the second report, based on the first report, we will show spiritual pain and spiritual well-being experienced by Hansen's disease survivors through an analysis of their life reviews. When our daily lives are calm and mundane, we do not notice spirituality. However, when we confront hardships of life, for example, diagnosed with leprosy and isolated in a sanatorium for lifetime, we notice spirituality as an existential distress. On the other hand, the development of individuality and imperturbability by overcoming hardship is spiritual well-being. Spirituality serves as the existential foundation for human existence and is important for the relationship with "something greater than self." Spiritual well-being is one of multiple dimensions of QOL.

**Keywords:** Hansen's disease, spirituality, spiritual pain, suicide, spiritual well-being, gerotranscendence, life review, Leprosy Prevention Law

## **1. Introduction**

Hansen's disease has been stigmatized from ancient times. Patients were forced to live in sanatoriums for their entire life, and this forced some of them to commit suicide. Although a sanatorium was a medical institution, it had a crematorium, an ossuary, and religious facilities (see **Figures 1**–**4**). Religion was used for saving the patient's soul.

What is the level of suffering or "spiritual pain" that makes a person consider suicide? What causes spiritual pain in those suffering with Hansen's disease? The experiences of Hansen's disease survivors are important to order identify the essence of spiritual pain, which remarkably decreases their QOL. On the other hand, Hansen's disease survivors who had suffered spiritual pain were eventually freed of their

#### **Figure 1.**

*First Ossuary. The 674 people who passed away between 1901 and 1936 are buried here. The oldest remains are dated June 12, 1901 (Ōshima Sanatorium opened on April 1, 1901).*

#### **Figure 2.**

*Ossuary. A majority of the residents lived here for the rest of their life and were cremated here. Those whose remains were not returned to their hometowns are kept in this ossuary on the island.*

sufferings and went on to become latter-stage elderly living vividly with purpose of life, even though it was minor. Is it possible to develop an individuality wherein one can experience spiritual well-being despite having experienced spiritual pain? This is an important theme, as spiritual well-being constitutes a part of QOL.

**237**

**Figure 3.**

**Figure 4.**

*fit within their funerary urns.*

**2. Quality of life and spirituality**

**2.1 What is quality of life (QOL)?**

*Spirituality and Hansen's Disease: Spirituality' Conceptual Structure and Hansen's Disease…*

*The 88-statue circuit within Oshima Seisho-en property. A total of 88 stone images are enshrined on the* 

*property to permit the 88-temple Shikoku pilgrimage to be carried out on-site.*

This study is divided into two parts. In the first report, we describe the conceptual structure of "spirituality" and the relationship between spirituality and QOL. In the second report, we show the spiritual pain and spiritual well-being of Hansen's disease survivors through a review analysis and discuss spirituality and QOL. A table content of the first and second report is presented in **Table 1** as an overview of the entire study.

*Dance of the Wind. The title, "Dance of the Wind," is based on the following wish: "at least let the spirit of my dying words ride the wind away from the island, freely released to return to my native home." It was built by approximately 1000 volunteers in 1992. The pointed conical monument on the front represents "everything in the heavens and space above," while the conical platform in the back represents "everything under the sun on earth." The round area with flagstones is a stage on which souls are thought to dance with the wind before setting off to their hometowns. The conical monument contains ashes of many individuals that did not entirely* 

Characteristics of QOL include considering the health and happiness from the perspective of the subject. It emphasizes subjective over objective evaluation,

*DOI: http://dx.doi.org/10.5772/intechopen.92243*

*Spirituality and Hansen's Disease: Spirituality' Conceptual Structure and Hansen's Disease… DOI: http://dx.doi.org/10.5772/intechopen.92243*

#### **Figure 3.**

*Quality of Life - Biopsychosocial Perspectives*

**236**

**Figure 2.**

**Figure 1.**

sufferings and went on to become latter-stage elderly living vividly with purpose of life, even though it was minor. Is it possible to develop an individuality wherein one can experience spiritual well-being despite having experienced spiritual pain? This

*Ossuary. A majority of the residents lived here for the rest of their life and were cremated here. Those whose* 

*First Ossuary. The 674 people who passed away between 1901 and 1936 are buried here. The oldest remains are* 

*dated June 12, 1901 (Ōshima Sanatorium opened on April 1, 1901).*

is an important theme, as spiritual well-being constitutes a part of QOL.

*remains were not returned to their hometowns are kept in this ossuary on the island.*

*The 88-statue circuit within Oshima Seisho-en property. A total of 88 stone images are enshrined on the property to permit the 88-temple Shikoku pilgrimage to be carried out on-site.*

#### **Figure 4.**

*Dance of the Wind. The title, "Dance of the Wind," is based on the following wish: "at least let the spirit of my dying words ride the wind away from the island, freely released to return to my native home." It was built by approximately 1000 volunteers in 1992. The pointed conical monument on the front represents "everything in the heavens and space above," while the conical platform in the back represents "everything under the sun on earth." The round area with flagstones is a stage on which souls are thought to dance with the wind before setting off to their hometowns. The conical monument contains ashes of many individuals that did not entirely fit within their funerary urns.*

This study is divided into two parts. In the first report, we describe the conceptual structure of "spirituality" and the relationship between spirituality and QOL. In the second report, we show the spiritual pain and spiritual well-being of Hansen's disease survivors through a review analysis and discuss spirituality and QOL. A table content of the first and second report is presented in **Table 1** as an overview of the entire study.

## **2. Quality of life and spirituality**

#### **2.1 What is quality of life (QOL)?**

Characteristics of QOL include considering the health and happiness from the perspective of the subject. It emphasizes subjective over objective evaluation,

#### **Part one Part two**

Spirituality's conceptual structure and Hansen's disease history

#### **1. Introduction 1. Introduction**

#### **2. Quality of life and spirituality**


#### **3. Overview of history of Hansen's disease in Japan**


#### **4.Life review of Hansen's disease survivors**


Accounts of spiritual pain and spiritual well-being by Hansen's disease survivors

#### **2. Spiritual pain experienced by a Hansen's disease survivor**


#### **3. The process of recovering from spiritual pain for a Hansen's disease survivor**


#### **4. Spiritual well-being of aging Hansen's disease survivors**

4-1. How do individuals live energetically despite having experienced extreme situations?

4-2. Construction of spiritual well-being; Introduction of the study

#### **5. Conclusion 5. Conclusion**

#### **Appendix**

Mr. Takahisa Yamamoto's life review (An excerpt only from the section that discusses spiritual pain)

**239**

**Figure 5.**

*(c) actualized spiritual well-being.*

*Spirituality and Hansen's Disease: Spirituality' Conceptual Structure and Hansen's Disease…*

When we encounter a crisis in life and lose our identity or the existing framework for living like other human beings and leading life in our own way, we seek the framework of transcendent power that exists outside us or the ultimate core within

**Figure 5** shows the relationship between spirituality, spiritual pain, and spiritual well-being. At the time when we have control over our life and can live in our own way and like other human beings, we tend not to notice spirituality, as we are not philosophers who think about life and death everyday see (**Figure 5(a)**). Although when faced with a crisis, for example the news that we have cancer or Hansen's disease, or see our own people dying, lose family members in an earthquake, or face other sufferings that make us think of committing suicide, we feel spiritual pain and notice spirituality see (**Figure 5(b)**). On the other hand, spiritual well-being became apparent in some people, for example, those who have a peaceful death or

Spiritual pain has been important in terminal care for cancer patients. The reasons for this are mentioned below. The first, cancer has the stigma of death attached. After being diagnosed with cancer, patients have to reconsider their life plan and think about where they want to live, who do they want to live with, and how do they want live the rest of their life. The second, dying patients can see the signs of their end coming closer as their physical condition and activities of daily living (ADL) decline gradually. Facing one's death leads to despair and spiritual pain. The third, the understanding that their family will lose a loved one. Death of a loved one means losing the future of living with the loved one, therefore to deal

*(a) Not actualized spiritual pain and spiritual well-being (life as usual); (b) actualized spiritual pain; and* 

*DOI: http://dx.doi.org/10.5772/intechopen.92243*

us. This function is known as spirituality [2].

are deeply religious see (**Figure 5(c)**).

**2.3 Development of spiritual pain into cancer terminal care**

with this grief a lot of psychological energy is needed.

#### **Table 1.**

*Table contents about the first report and the second report about 'Spirituality and Hansen's disease'.*

and the evaluation of multiple dimensions rather than a single dimension. The primary goal of nursing is enhancing the QOL of a subject and the results of nursing intervention can be evaluated by the QOL.

By Haas' QOL model [1], if the four dimensions that are physical, psychological, social, and spiritual, indicate well-being, the QOL is high.
