**2.2 What is spirituality?**

The Old testament, states: "God made person from mud and breath in its nose, and then the mud figure become living human." Therefore, we believe that the source of life is from the breath given by God. Spirit comes from the Latin word "Spiritus," and the elements that make the human are body, mind, and spirit.

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

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

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

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

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 with this grief a lot of psychological energy is needed.

#### **Figure 5.**

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

*Quality of Life - Biopsychosocial Perspectives*

Spirituality's conceptual structure and Hansen's

2-3. Development of spiritual pain into cancer

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

3-1. From the ancient times to the end of the

3-2. From establishing a modern nation (the Meiji government) to the end of World War

3-3. From developing the magic bullet 'Promin' to abolishing the Leprosy Prevention Law (Act No. 214 of 1953 らい予防法)

3-4. After abolishing the Leprosy Prevention

**4.Life review of Hansen's disease survivors** 4-1. Introduction to the National Sanatorium Oshima Seisho-en, where the survivors who have shared their life review live 4-2. The life review book of Hansen's disease

**2. Quality of life and spirituality** 2-1. What is quality of life (QOL)? 2-2. What is spirituality?

2-4. Spiritual pain and total pain 2-5. What is spiritual well-being? 2-6. Quality of life and total pain

feudal era ( –1867)

II (1868–1945)

(1943–1996)

Law (1996–)

survivors

terminal care

**1. Introduction 1. Introduction**

disease history

**Japan**

**238**

**Table 1.**

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

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

By Haas' QOL model [1], if the four dimensions that are physical, psychological,

**Part one Part two**

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

**disease survivor**

survivors

life review

of life

life (Ceramics) 3-5. After the turning point

**disease survivors**

situations?

**Appendix**

**2. Spiritual pain experienced by a Hansen's** 

2-1. The life review of Hansen's disease

2-3. Analysis method for construction 2-4. Construction of Mr. Takahisa Yamamoto's spiritual pain

**3. The process of recovering from spiritual pain for a Hansen's disease survivor** 3-1. What sustained Mr.Takahisa Yamamoto through the suffering? 3-2. Relieving sufferings; preparing to accept turning points

3-3. Turning point 1: Changing the flow

3-4. Turning point 2: Meeting a friend for

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

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

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

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

discusses spiritual pain)

2-2. Overview of Mr.Takahisa Yamamoto's

The Old testament, states: "God made person from mud and breath in its nose, and then the mud figure become living human." Therefore, we believe that the source of life is from the breath given by God. Spirit comes from the Latin word "Spiritus," and the elements that make the human are body, mind, and spirit.

nursing intervention can be evaluated by the QOL.

**2.2 What is spirituality?**

social, and spiritual, indicate well-being, the QOL is high.

**5. Conclusion 5. Conclusion**

#### **2.4 Spiritual pain and total pain**

The experience that terminal cancer patients undergo is called "Total Pain." Total pain encompasses physical, psychological, social, and spiritual pain [3]. Physical pain includes various factors like body aches, difficulty in breathing, fatigue, and also difficulties in ADL like eating, sleeping, and moving. Psychological pain includes feelings of anxiety, loneliness, anger, irritation, etc. Social pain is related to work problems, financial issues, problems in the family, inheritance issues, etc. Spiritual pain implies questioning the meaning of life, pursuing God, changes in the value system, a search for the meaning of suffering, fear of death, feeling of guilt, etc.

It is difficult to distinguish between psychological and spiritual pain. Psychological pain implies that the mind is functioning against the body, on the other hand, spiritual pain means questioning the relationship with something greater than self or something that is transcendent [4]. Therefore, spiritual pain exists when we question the meaning of life and existence. For example, when we cannot meet a loved one or a partner and feel lonely because of the physical distance, it is psychological pain, but when we lose a loved spouse and suffer and contemplate suicide and blame God for the loss, it is spiritual pain.

Spiritual pain is expressed as: (1) unfairness: why did I get this disease?; (2) unworthiness: I do not want to become a burden on my family; (3) hopelessness: there is no meaning in doing that; (4) guilt: it is my fault; (5) isolation: no one understands me; (6) vulnerability: I do not have the ability; (7) abandonment: God is not helping me either; (8) punishment: I am being punished and that is why I have cancer; (9) confusion: why must I suffer even if there is God; (10) meaninglessness: my life is meaningless [5].

#### **2.5 What is spiritual well-being?**

There are very few patients who have a sense of gratitude and peace as they face death as compared to the number of patients who have total pain. There are some who try to find the meaning of suffering when they are afflicted with hardships of life like, a massive earthquake, loss of a loved one, loss of work, divorce, etc. Spiritual well-being implies being in harmony with self, others, nature, and something greater than self, and the process of finding the best meaning [2]. People who have faith in God in daily life can find the meaning of suffering and are peaceful while facing death and hardships as compared to people who do not have faith. Therefore, it can be said that religion leads to spiritual well-being. At the same time, religion is not the same as spirituality. All persons with or without faith have spirituality. Therefore, all humans have the potential to develop at the level of the soul even in extreme situations until the moment of death.

#### **2.6 Quality of life and total pain**

By Haas' QOL model [1], if the four dimensions that are physical, psychological, social, and spiritual, indicate well-being, the QOL is high. QOL and total pain are the two sides of the same coin, which implies that if the four dimensions are painful, then the patient has total pain, and if the dimensions indicate well-being, the patients level of QOL is high. Ensuring a patient's well-being in all four dimensions is the aim of the practice of nursing.

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

It would be help to divide this into four periods to facilitate better understanding: (1) From the ancient times to the end of the feudal era (the Edo period); (2) From

**241**

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

establishing a modern nation (the Meiji government) to the end of World War II;

Leprosy existed in Japan from the ancient times and statements about the disease were mentioned in Nihon Shoki (AC.720), which is one of the two oldest written documents in Japan. According to the concept of defilement, Hansen's disease patients were considered to be defiled beings because of their change in appearance. In Buddhism, leprosy is considered as a punishment from heaven and a disease caused because of karmic retribution. Patients stayed at home so that they do not stand out, or lived in areas that were designated for the feudal outcast group and thus coexisted in society. Patients who could no longer live in their hometowns would beg at the gates of temples and shrines, or depart on wandering journeys and

**3.2 From establishing a modern nation (the Meiji government) to the end of** 

During the Edo shogunate (1603–1868) the society was peaceful and there was no war for 250 years, but this was broken by a bloodless revolution, the Meiji Restoration and the Meiji government was established. The new government made an effort to create a modern nation, make the country economically sound, encourage new industries, and to strengthen the army, in order to prepare for the threats from the Western powers. Unfortunately, the government was a part of the World

After the Meiji government was established, Hansen's disease was considered as a "national disgrace disease," in addition to a "heavenly punishment disease" and "defilement disease." The Government believed that the sight of patients begging at shrines was symbol of a country that was not civilized. This was considered a national disgrace as the government aimed to make the country a civilized country. According to the concept of national purification and the idea of supremacy, patients with Hansen's disease as well as weak and disabled people were excluded. In line with militarism, Hansen's disease patients were treated coldly during the war because they did not contribute to military strength and the disease was mostly seen in young men. In addition, bacteriology and the study of public health were introduced, leading to the use of isolation to prevent infection. By similarly to the acute infectiousness of cholera according to theory of social protection, general people misunderstood as

Based on the above background, the government forced lifelong isolation and internment in order to eradicate Hansen's disease, and established sanatoria and legislations to legalize forced isolation. In 1907, the Leprosy Prevention Law (Act No. 11 of 1907; 癩予防二関スル件) was enacted in order to force patients who did not have relatives and were known as "wandering lepers," to intern at sanatoria. Five sanatoria were established across the nation. In 1931, the Leprosy Prevention Law (Act No. 58 of 1931; 癩予防法) was enacted to isolate patients living at home and did not force internment by police authority. In 1929, the Leprosy-Free Prefecture Movement started spreading. This movement was aimed at tracking all patients, reporting them, and interning them at the sanatoria so that there would be no patients living in the prefecture. As a result of this movement, the feeling that

Hansen's is a horrible infectious disease took root among the populace.

(3) From developing the magic bullet "Promin" to abolishing the Leprosy Prevention Law (Act No. 214 of 1953; らい予防法); (4) After abolishing the

**3.1 From the ancient times to the end of the feudal era (~1867)**

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

Leprosy Prevention Law.

were called "wandering lepers."

**World War II (1868–1945)**

War II and lost the battle in 1945.

terrifying infectious disease.

establishing a modern nation (the Meiji government) to the end of World War II; (3) From developing the magic bullet "Promin" to abolishing the Leprosy Prevention Law (Act No. 214 of 1953; らい予防法); (4) After abolishing the Leprosy Prevention Law.
