Spiritual Concerns in Hindu Cancer Patients Undergoing Palliative Care: A Qualitative Study

Abstract

Aims:

Spiritual concerns are being identified as important components of palliative care. The aim of this study was to explore the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India.

Materials and Methods:

The methodology used was a qualitative method: Interpretive phenomenological analysis. A semi-structured interview guide was used to collect data, based on Indian and western literature reports. Certain aspects like karma and pooja, relevant to Hindus, were included. Theme saturation was achieved on interviewing 10 participants.

Results:

The seven most common spiritual concerns reported were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one's situation, belief in karma, and the question Why me? No participant expressed four of the concerns studied: Loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle.

Conclusions:

This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. The study indicates the need for adequate attention to spiritual aspects during palliative care.

INTRODUCTION

The World Health Organization's definition of palliative care is readily acknowledged and described “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”[1] The provision of such an holistic approach to care is not without challenges, patients more readily volunteer physical symptoms such as pain and spiritual and psychosocial domains of care are at risk of being overlooked. In recognition of this, the World Health Organization emphasizes the integral nature of a spiritual care stating, “This reductionist or mechanistic view of patients as being only a material body is no longer satisfactory. Patients and physicians have begun to realize the value of elements such as faith, hope and compassion in the healing process.”[2]

The growing appreciation of the impact of spirituality on mental and physical health as well as influencing recovery from illness has been increasingly recognized in the literature.[3,4,5] A meta-study of qualitative research that explored the understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care observed that the words “spiritual” and “spirituality” were rarely used and were found to be abstract.[6]

Studies by Sinclair et al.,[7] Lin and Bauer-Wu,[8] Mako et al.,[9] and Surbone and Baider[10] identified many themes associated with spiritual care in palliative care. They include self-awareness, coping, and adjusting effectively with stress, relationships, and connectedness with others, sense of faith, sense of empowerment and confidence, and living with meaning and hope.

In a study on a mixed group of 50 respondents on what is important for quality of life to Indians in relation to cancer, Chaturvedi[11] found peace of mind (66%), spiritual satisfaction (62%), satisfaction with religious tasks (60%), and happiness with family, relations, and social network (60%). The level of satisfaction was more important than the level of physical functioning: A finding that was contrary to other studies, which over-emphasized physical functioning.

Whitman[12] discussed the role of karma or the law of causality: The temporary nature of the physical body and that suffering does not affect the soul. Suffering is an integral part of living and continues until one reaches moksha or the end of the cycle of rebirth.

Puchalski et al.,[13] searched for all empirical studies published in the five main palliative care journals from 1994 to 1998 and identified studies that included spiritual or religious measures or results. Of 1117 articles, only 70 (6.3%) had spiritual or religious variables. These results suggest two important points. First, although the WHO definition of palliative care clearly identifies the importance of spirituality, it is given limited attention in the published specialist literature. Second, it should be noted that the literature explored in this review were all from British and American journals and may not representative of the importance given to spirituality in other countries. Until date, there is no published primary research pertaining to spirituality in Indian palliative care. We therefore undertook a study to understand the spiritual concerns in a palliative care setting in India.

Aim

To study the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India.

MATERIALS AND METHODS

Following approval from the local research ethics committee, a qualitative study was conducted using audiotaped interviews based on a semi-structured interview guide.

The semi-structured interviews were developed by the authors through an iterative process based on reviewing research on spirituality published in western literature, identifying relevant topics to explore, and achieving consensus of the content. Issues not mentioned in the western literature, but known to be important aspects of the Hindu faith like karma and pooja were also included.

The population for the study was recruited by purposive selection of those who met the inclusion and exclusion criteria, at Karunashraya, a cancer hospice in Bangalore, India. The 50-bed hospice has about 950 admissions annually. All patients admitted to Karunashraya are routinely seen by the counselors, who do an initial evaluation of the patient and address any urgent concerns. Once the patient is comfortable, they speak to him/her in greater depth about other concerns.

At this session, the counselors identified participants who met the following criteria; Hindu patients, aged ≥18 years, who had been in the hospice for a minimum of 4 days, with pain and symptoms substantially relieved, comfortable enough to speak and lucid. The counselors described to these selected participants the study being undertaken and sought their consent. If a verbal consent was given, the counselors spoke to the participant once again on the next day, when the consent form was read and explained to them. Any doubts or questions raised by the participant or family member were clarified. If the participant was willing, the consent form was signed by him/her and witnessed by a family member.

The interviews were conducted at the bedside of the participant or, if he/she was comfortable and willing, in the counseling room. The stream of the interaction determined the course of the interview, during which the cues picked up were further explored. The interviews were recorded on a digital voice recorder. Only one participant spoke in English and the rest in Kannada. The audios were transcribed in English after translation. The transcripts in English and the corresponding audio recordings in Kannada were examined by an external person and certified for accuracy.

Analysis

The analytic framework for this qualitative study was based on Interpretative Phenomenological Analysis (IPA). This approach, developed within psychology and rooted in phenomenology and symbolic interactionism, has been increasingly used to address quality of life research topics in the palliative setting.[14,15] “The aim of IPA is to explore how participants make sense of their experiences,”[16] i.e., to understand the meaning that events or states have for participants based on their subjective accounts. It is also interpretative, recognizing the researcher's conceptions, and experience, as brought to the analysis. In this study, the interviewer (SS) is also a senior palliative care physician and consequently brings an understanding that will inform analysis.

Each interview was audio-recorded and transcribed verbatim and the data was analyzed.

The transcripts were systematically analyzed in several stages:[16]

• The first transcript is read line-by-line and annotated with initial comments

• Initial comments are grouped into themes

• Connections between themes are developed until an organized master list and thematic rationale is achieved

• New themes are tested against the previous transcripts as non-recurring themes are tested against following transcripts. Connections across cases are noted to identify a set of superordinate themes for the group.

Group results were analyzed for consistent themes. A coding framework for emergent themes was then developed and applied across the data corpus.

Four major themes, each with associated sub-themes emerged from the interview data. Excerpts of interview text were selected, which illustrated the issue being discussed and, to reduce bias, represented a range of participants. For each excerpt, the participant was identified by a numerical code.

RESULTS

Ten participants were interviewed (7 female, 3 male) and their characteristics are summarized in Table 1.

Table 1.

Description of the sample

There was a predominance of women in the study, a reflection of the pattern of admission at the hospice. The focus was on qualitative assessment of the nature of spiritual concerns and thus the sample was randomly selected, ensuring that it was representative of the theme of the study. The sample people were all married. At the time of the interviews, among the women, 5 were married, 1 separated, and 1 was widowed. Among the men, 1 was married and 1 was separated.

The seven most common concerns were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one's situation, belief in karma, and the question “Why me?” The common concerns and their frequency distribution are given in Table 2.

Table 2.

Common spiritual concerns (N=10)

In line with faith in God, 6 participants expressed that they benefitted by having framed photos of Gods placed in their room (refer Participant #5 above).

No participant expressed four of the concerns studied-loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle.

Major themes identified were passive acceptance of their situation, active behaviors, and the concepts of loss and musings on death

Passive acceptance of their situation

All participants volunteered an acceptance of their diagnosis, although factors influencing this varied. Many reconciled their condition within the context of their belief and faith in God:

• “I had faith in God. I am not worried as I leave everything to Him.” (Participant #1)

• “Till now, my God has not let me down. This could not have happened without the blessings of God.” (Participant #5)

Others considered their condition was a manifestation of karma and their diagnosis a resultant of former sins.

• “That is born in the mind. My mind sometimes asks what sin have I committed in which birth? I am not able to walk and I cannot bear the pain. I then ask whom have I harmed? To which family? To whose children?” (Participant #4)

• “Karma is what I am experiencing now, Yes, I may have sinned. I do believe in karma. I feel very bad that such a thing has happened to me.” (Participant #7)

Active behaviors

Participants engaged in several active behaviors with the intention of “getting ones house in order.” These took the forms of Earthly behaviors and non-Earthly behaviors. Examples of Earthly behaviors included forgiving those who have wronged them and ensuring their family will be taken care of.

• “In fact some of those who did not talk to me earlier have come on their own and spoken to me. I do not feel that they came and spoke to me just because this had happened to me, Go, I have forgiven you!”(Participant # 2)

• “I have looked after my responsibilities towards my family well. I have not committed any mistake. Yes, one is selfish about ones husband and children.” (Participant #3)

Non-Earthly behaviors focused on the benefit participants gained from performing pooja and the comfort gained from having a photograph of God in their room.

• “I do pooja to pay off the (karmic) debts of my previous birth. I have not missed doing pooja. It has been useful for me. The mind is satisfied and peaceful.” Participant # 5)

• “As long as we are here, we look at the photo of God. I always have a sense of happiness seeing God's picture. Nothing bad has ever happened”. (Participant # 5)

Concept of loss

Participants described feelings of loss regarding their situation. Many described a loss of self worth or purpose resulting directly as a consequence of their illness.

• “Yes, I feel bad but not that bad. Enough, My body is a waste, feel repulsive (repeated twice). A waste, for my children, for my parents, for people like you who serve others, a waste.” (Participant #2)

• “For two to three months, I did not want anything in life.” (Participant #6)

• “It was a question of feeling ashamed that prevented me from showing this to anyone (Cancer on the penis).” (Participant #7)

• For others, the illness gave them opportunity to evaluate their life and reflect on loss from their life as a whole.

• “I did not have the pleasure of having children, nor happiness from a husband or parents and no happiness in life. I must have committed some sins. (tearful) For two three months I did not want anything in life.” (Participant #6)

Musings on death

Participants had all thought about death and dying. Interestingly, none expressed any fear of death. Some expressed a desire for death to come more quickly, possibly as a release from the suffering of their illness.

• “Whatever happens, that is secondary. I do not know anything. For now, enough, Even now I am willing to take anything (like poison).” (Participant #2)

• “I am ready to die at any time. For the last seven years, I have been beseeching God to take me away. Enough of this life, I do not want any pain. That is what I ask God, No (I am) not afraid of death.” (Participant #4)

For many, death was not feared. For some, this reflected reconciliation with their condition.

• “Nothing. I did not have any fear. One has to go sometime, I am pain free now.” (Participant #6)

• “I used to be afraid of death, now I am not feeling that. One of my superiors has said that death is not just the end of the road; it is just the bend of the road.”(Participant #9)

DISCUSSION

The interviews show the common spiritual concerns and their descriptive experiences.

Winkelman et al.,[17] reported that most patients (86%) endorsed one or more spiritual concerns in their patients with advanced cancers. The spiritual concerns were associated with poor psychological health and poorer quality of life. Like in the present study, most patients with advanced cancer viewed spiritual care as an important part of medical care.

Alcorn et al.,[18] also reported religious and spiritual themes on coping, practices, beliefs, transformation, and community, and most participants reported two or more themes and concerns.

The spiritual concerns in the present study have been classified into four groups as above.

Ritualized worship or pooja seems to be vital to all Hindus. Worshiping the image of a deity, which is a personification of an attribute of God, helps a Hindu connect with the Supreme Soul. This is a commonly held lay belief among Hindus.

As quoted above by participants #4 and #5, God played a seminal role in the lives of the participants of this study. The theme that also emerged was about God being ever loving and compassionate, albeit angry occasionally, with the sole intention of saving the soul from straying away from the path of realization. Belief in God is universal and the individual looks up to Him for survival.[19]

This study seems to confirm the importance of karma in the way that Hindus make sense of their lives, while a participant may not be fully aware of the definition of karma, he has implicit faith in it and is able to use this concept to explain what is happening to him.

As one participant commented, “According to what elders say, it is the sins committed in the previous birth. They said not to worry, as this is because of the sins of the previous birth, that such things happen.” (Participant #3)

The potential distress that the universal question “Why me” can cause was not expressed very strongly. In most instances, karma provided the answer. One participant observed very philosophically:

“But ultimately, the story of Arthur Ashe has changed me. How he got ill and what message he gave. When he was holding the cup, he never asked God the question “Why me?” (Participant # 9)

Many did not express fear about death; this was because of the Hindu belief that the soul is only a temporary occupant of the body and sheds it like we shed old clothes and wear new ones. In Hinduism's holy book, the Bhagavad Gita, Chapter 2 Verse 22, the Lord says, “Just as a man casts off worn-out clothes and puts on others which are new, so the embodied (self) casts off worn-out bodies and enters others which are new.”[20]

One of the participants said, “I have most certainly not thought about my death because it is foolish. What is the urgency to change my old clothes right now? I am atman and it has a body. If my shirt is old, God knows about it. He will ask me to come to give me a new shirt.” (Participant #10)

The soul keeps getting reincarnated till all karmic dues are settled. This can only happen when the soul loses attachment to worldly desires and attains release from the bondage of rebirth, thus getting liberation. Thus death is not the end. Through good karma one can achieve salvation. This belief in rebirth apparently helps tremendously in coping with these difficult thoughts.

Issues like loss of control and loss of dignity were not given much importance by the subjects studied, perhaps due to the social structure of the extended family; social loneliness was not a major issue, even in deprived families. This was the general sense derived on reading the transcripts of the participants, although there were no specific comments made during the interview.

The interview contained distressing questions like “Have you thought of your death,” “have you thought of taking your own life,” and “how did you feel when you came to know about your illness” did not distress the participant. Most of the subjects felt good talking about it. Thus, addressing spiritual concerns apparently relieves anxiety.

Pargament et al.,[21] in their research study and Puchalski et al.,[4] in their review article reported religious struggle in Western literature to be an important concern for patients who are dying. Adverse life events can precipitate emotional and religious turmoil. For some, this struggle may be brief and, for some, quite protracted. The items of spiritual struggle and spiritual seeking were also reported by Winkelman.[17] It is interesting to note that spiritual struggle was not reported by any of the participants in this study, indicating cross-cultural differences in spiritual concerns.

During the course of the interview, the participants were asked, “What do you understand by the words spirituality and religion.” This question was missed out in two of the participants. The interviewer used the terms adhyatmikavichara for spirituality and matha for religion [in the language of interview. i.e. Kannada]. Interestingly, in this study, 6 participants were not able to differentiate between religion and spirituality, rather they felt these meant the same. These were relatively uneducated people from the lower socio economic strata. The two who did give definitions were educated and were aware of the theoretical definitions.

One participant had an interesting comment

“It is like a room. Each window is a different shape. The light is coming in. One is a cross shape, one is oval and the other is round. When you look at the light from a window, you will see it in the same shape as the window. The shape of the window pertains to religion. When you go out you will see it as the paramatman (universal soul). That stands alone. We use different colored glasses. That is religion.” (Participant #10)

A possible explanation of the relative absence of religious struggle and the inability to differentiate between religion and spirituality by the 6 participants is possibly the very nature of Hinduism. Radhakrishnan[22] observed that Hinduism was sans dogma and “a rational synthesis which goes on gathering into itself new conceptions is experimental and provisional in its nature, attempting to keep pace with the progress of thought and Indian philosophy was essentially spiritual in nature.” Swami Nikhilananda[19] has stated that, “Hinduism is not a set of abstract philosophical theories unrelated to life or a congeries of religious dogmas to be accepted with blind faith; it combines both, philosophy and religion, and reason and faith.”

Currently available tools to assess spiritual issues do not tap spiritual concerns seen in India. Hence, there is a need of an indigenous interview or measure. The authors plan to develop a measure based on their research on this theme.[23]

Balboni et al.,[24] reported that most patients with advanced cancer in their study had never received any form of spiritual care from their oncology nurses or physicians. Patients, nurses, and physicians view spiritual care as an important, appropriate, and beneficial component of end-of-life care. The participants of the present study endorsed this as well.

Before drawing any conclusions, one must be aware of the limitations of this study, mainly a relatively small sample size restricted to South Indian Hindu patients who were admitted to a single hospice and based on a single interview. However, a qualitative design is ideal to explore spiritual concerns and issues, especially when little is known about them and no scales are available. Restricting the study to Hindus and those speaking Kannada and English makes the study population homogenous. The interviews were conducted in the person's mother tongue, which would give a richer account of their experiences than if it were conducted in another less familiar language.

CONCLUSIONS

This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. There is a need to develop measures or methods to evaluate spiritual concerns systematically and plan counseling methods to help patients cope with these concerns effectively. The observations also suggest that the Western model of spirituality may not fully apply to the Indian setting. The study identifies challenges faced in developing palliative care in India, since not all aspects of the Western model may be transferred. The observations also indicate the need for adequate training on spiritual care in palliative care settings.