Journal of Cancer Research and Therapeutics Medknow Publications on behalf of the Association of Radiation Oncologists of India (AROI) ISSN: 0973-1482 EISSN: 1998-4138 Vol. 1, Num. 2, 2005, pp. 98-102

Journal of Cancer Research and Therapeutics, Vol. 1, No. 2, April-June, 2005, pp. 98-102

Original Article

Fighting cancer is half the battle... living life is the other half

Pahwa Manasi, Babu Nandita, Bhatnagar Sushma

Department of Psychology, University of Delhi. Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, Delhi
Correspondence Address:Department of Psychology, Delhi University, Delhi-110 007, manasi_pahwa@rediffmail.com

Code Number: cr05020

Abstract

PURPOSE: The purpose of this study was to explore the psychological and social problems the terminally ill are facing in India. Another objective of this study was to explore the Locus of Control and Depression.
AIMS: The study was conducted on an incidentally available sample of fifteen terminally ill patients at the Pain Clinic, I.R.C.H., AIIMS, ranging from young adults (30-35 years), to middle aged (40-50 years), to the elderly (55-65 years).
MATERIALS AND METHODS: A thematic and narrative analysis was done using semi-structured interview. After the semi-structured interview, two standardized inventories were administered. The two inventories used were Multidimensional Health Locus of Control, and Beck's Depression Inventory. The statements from the two inventories were translated into Hindi and then asked. The inventories were not given as a questionnaire to be filled; rather they were asked orally and marked by the investigator.
RESULTS: The co-relation between Internal Health Locus of Control and Depression was found to be significant below the 0.05 level. Statistics also revealed that a large number of participants were either severely depressed (33.33%) or extremely depressed (20%). The seven common themes running through all the narratives were identified; Concern for physical pain; Anxiety and Depression; Body-image problems; Social withdrawal; Disease viewed as bad 'karma'; Desire for hastened death; and lastly Hope.
CONCLUSION: This article would create greater awareness among all the concerned people working with cancer patients on what intervention strategies should be utilized to help the patients, as well as, how the belief in karma can help gain a more positivistic outlook towards death and the core role spirituality and the belief in karma can play in the counseling of the patients and their families.

Keywords: body image, depression, anxiety, terminal illness

INTRODUCTION

When a person is diagnosed to have reached the terminal stages of his illness he suffers the most. This period of a person′s life is one of the most traumatic phases, he can become so depressed or anxious that it can disrupt his life irreversibly.

Although the extensive medical needs of such patients may be well attended to, their psychosocial and emotional needs are often overlooked (Houts, Yasko, Kahn, Schelzel, & Marconi, 1986). Almost every aspect of a person′s life can be affected, as cancer engenders many stressors and can lead to significantly compromised quality of life. Even for people who historically coped well with major negative life events, cancer and its treatment greatly increases the stressful nature of routine daily tasks. Weisman and Worden (1976- 1977) refer to this situation for cancer patients as an "existential plight," where a person′s very existence may be endangered. Recognizably, not every individual diagnosed with cancer will experience a plethora of problems, but most patients do report significant difficulties, such as depression, anxiety, delirium, and body image problems. The fear of death or of recurrence of cancer may develop into suicidal ideations (Valente, Saunders, & Cohen, 1994). The risk for suicide may be greater in the advanced stages of the illness (Chochinov, Wilson, Enns, & Lander, 1998) and with patients experiencing significant fatigue (Brietbart, 1987).

Psychological Issues among Terminal Patients:
Cancer patients in the terminal phases of illness are especially vulnerable to both psychiatric and physical complications. Suicide is also more prevalent during such advanced stages. Dr. Elizabeth Kübler-Ross (1997), after a lot of research with terminally ill patients suggested that most if not all patients at the terminal stages of a disease undergo a grieving process that can be classified in to five stages: Denial, Anger, Bargaining, Depression and Acceptance. 1. Denial:- Most people respond with shock to the knowledge that they have cancer. Their first thought is, "Oh no, this can′t be happening to me." When people around the patient also deny the reality, he or she has no one to talk to and, as a result, feels deserted and isolated. 2. Anger:- When the first stage of denial cannot be maintained any longer, it is replaced by feelings of anger, rage, envy, and resentment. The logical next question becomes: "Why me?" This anger is displaced in all directions and projected onto the environment at times almost at random. 3. Bargaining:- The third stage, the stage of bargaining, is less well known but is equally helpful to the patient, though only for brief periods of time. Thus, the thought may be, "Yes, it′s happening to me - but." The but is an attempt to bargain for time. People may pray to God, "If you just let me live to see my daughter graduated. or my son married. or my grandchild born. I′ll be a better person. or I won′t ask for anything more. or I′ll accept my lot in life." 4. Depression:- When the terminally ill patient can no longer deny his illness, when he is forced to undergo more surgery or hospitalization, when he begins to have more symptoms or becomes weaker and thinner, he cannot smile it off anymore. His numbness or stoicism, his anger and rage will soon be replaced with a sense of great loss. 5. Acceptance:- If the patient has had enough time (i.e., not a sudden, unexpected death) and has been given some help in working through the previously described stages, he will reach a stage during which he is neither depressed nor angry about his "fate." He will have been able to express his previous feelings, his envy for the living and the healthy, and his anger at those who do not have to face their end so soon. He will have mourned the impending loss of so many meaningful people and places and he will contemplate his coming end with a certain degree of quiet expectation.

MATERIALS AND METHODS

The present study was conducted on terminally ill cancer patients by means of semi-structured interview and administration of two inventories.

Sample: The size of the sample was 15 patients from I.R.C.H., AIIMS. This sample covers all ages, ranging from young adults (30-35 years), to middle-aged (40-50 years) to the elderly (55-65 years). The sample consisted of 2 females and 13 males. The subjects in the sample belonged to the lower and the lower-middle socio-economic status. The sample consisted of terminally ill cancer patients visiting the Pain Clinic at I.R.C.H., AIIMS.

Instruments: Semi-structured Interview: With the semi-structured interview, the investigator had a set of questions on an interview schedule but the interview was being guided by the schedule rather than dictated by it. Here then:

1. there was an attempt to establish rapport with the respondent;
2. the ordering of questions was less important;
3. the interviewer was freer to probe interesting areas that arose;
4. the interview followed the respondents′interests or concerns.

After the semi-structured interview, two standardized inventories were administered. The statements from the two inventories were translated into Hindi before they were asked. Also the inventories were not given as a questionnaire to be filled; rather they were asked orally and marked by the investigator. This also helped the respondents follow a particular line of thought and give details about the things that bothered them, depressed them and worried them the most.

The two inventories used were: 1. Multidimensional Health Locus of Control Inventory (Wallston & Wallston, 1978) and 2. Beck′s Depression Inventory (Beck et al., 1961). These inventories helped in further analysis on the basis of the subject′s scores.

Multidimensional Health Locus of Control
The Multidimensional Health Locus of Control (MHLC) scale (Wallston & Wallston, 1978) measures the extent to which an individual believes that the locus of control for health is: (a) internal, that is, as a result of their own behavior (IHLC); (b) under the control of ′powerful others′, that is health professionals (PHLC); and (c) determined by external factors such as chance or fate (CHLC). This self-report questionnaire comprises six items for each scale.

Individuals who score highly on the Internal dimension regard their health as largely within their own control and are likely to engage in health maintaining behaviors. Conversely, those who score highly on the Chance dimension view their health as relatively independent of their behavior and, accordingly, are more likely to engage in health-damaging behaviors than those with lower scores. The implications of a strong belief in Powerful Others (typically doctors) influencing health are more difficult to predict. High ratings may indicate receptivity to health messages endorsed by medical authorities. Conversely, they may suggest a strong belief in the ability of the medical system to cure any relevant illness.

Beck′s Depression Inventory
The original version of the BDI was introduced by Beck, Ward, Mendelson, Mock & Erbaugh in 1961. The BDI was revised in 1971 and made copyright in 1978 (Groth-Marnat, 1990). Both the original and revised versions have been found to be highly correlated (.94).

The BDI is a self-administered 21 item self-report scale measuring supposed manifestations of depression. The BDI takes approximately10 minutes to complete, although clients require a fifth - sixth grade reading age to adequately understand the questions (Groth-Marnat, 1990).

Procedure
Conduction of the interview :- A series of interpretive decisions confront all investigators. Investigators must consider how to facilitate narrative telling in interviews, transcribe for the purposes at hand, and approach narrative analytically.

Attempt was made to encourage those who were studied, to attend to, and tell about important moments in their lives, by providing a facilitating context in the interview. The interview was tape recorded and later transcribed.

It began with a rough transcription, a first draft of the entire interview that got the words and other striking features of the conversation on paper (e.g. crying, laughing, very long pauses). More specifically, the precise verbal elements of the spoken discourse were always transcribed. But the prosodics (talking loudly), paralinguistic (laughing) and the extralinguistic (accompanying gestures) elements were included only for the part of the speech concerning the area of interest. Then the researcher went back and retranscribed selected portions for detailed analysis.

Administration of the inventories:- Each statement in the inventory was translated into Hindi and then read out to the subject who would then give his answer and then also elaborate on this answer so as to give a rich detail and understanding of his thought process.

Results

Quantitative Analysis
The correlation between the two domains of Locus of Control and Depression was explored using Pearsons′ ′r′ method of correlations. The results revealed, that the correlation between the Internal Locus of Control and Depression was -0.514 which was significant below the 0.05 level. This result indicates that the individuals who scored highly on the Internal dimension regard their health as largely within their control and hence are less likely to be depressed. The correlation that emerged between Powerful Others Locus of Control and Depression was -0.1053, which was not found to significant. Lastly, the correlation that, emerged between the Chance locus of Control and Depression was +0.1046, which was not found to be significant.

Statistics also revealed that most of the participants (33.33%) were severely depressed and a high number of them (20%) were extremely depressed. While 13.33% of the participants were either moderately depressed or showed borderline clinical depression. Hence it can be said that many patients who reach the terminal stage of the disease may suffer from some form of psychiatric morbidity which goes unnoticed but needs to be addressed.

Qualitative Analysis
This correlational data played a supportive role to the data collected by the semi-structured interviews for the purpose of narrative and thematic analysis.

For the narrative analysis 3 participants were selected. These participants were representative of the 3 age-groups in which the participants were divided, i.e. 1 participant was 30-years old-young adult, second participant was 75-years old-elderly, and the third participant was 55-years old-middle-aged. Again these 3 participants were representative of the three stages of the 5 stages proposed by Dr. Elizabeth Kübler Ross: Denial and Isolation; Anger; Bargaining; Depression; and Acceptance.

The 3 participants were at the 3 stages of Depression, Anger and Acceptance respectively. Hence, the narratives of each of these participants were analyzed in detail, followed by a thematic analysis of the themes that were common to all the narratives.

Emerging Themes
The discursive themes identified from the transcripts are presented below, under sub-headings. Banister, Burman, Parker, Taylor, and Tindall (1996) consider such a ′thematic′ analysis to be a coherent way of organizing interview material relation to specific research questions. Therefore, the current analysis is organized under the following headings to do justice to both the researcher′s preoccupation with the emotional state of the terminal cancer patients and the issues raised by the participants regarding death, and also a view of their sufferings.

1. Concern with Physical Pain

Physical pain and distress along with disfigurement are the immediate outcomes of cancer. The persistent pain in the site of the cancer or pain in other areas due to fatigue, or stress can sometimes become unbearable for the patients. The pain can also affect the sleep cycle of the patient leading to loss of appetite, fatigue and related symptoms.

2. Body- Image Problems

Patients who undergo major surgery and disfigurement thereafter, or disfigurement even without surgery may suffer from body-image problems. The scars and physical disfigurements serve as reminders of the social ostracization they may be facing because of it.

3. Anxiety and Depression

Depressions and Anxiety were the most common reactions indicated by the patients. Most of the participants found it very difficult to come to terms with the fact that their unfilled dream would remain just that - "unfulfilled dreams." There are also two other major factors, that contribute to their feelings of anxiety, which were, the welfare of their family after their death and current monetary problems.

4. Social Withdrawal

The other major concern that emerged in most of the narratives was social isolation. Most participants feel that, their neighbors and friends and relatives preferred to keep away from them, and no longer visited them as they usually did.

5. Disease Viewed as Punishment

A common line-of-thought that emerged from most interviews, was that their illness and consequent pain was a result of some ′bad karma′they had committed in their past life. They would vouch for the chasteness, honesty and pureness of their existence in this ′ janma. ′ They believe that the only way they can rid themselves of the "evil" that they have committed is by asking God for forgiveness and by hoping for a better and a more fruitful next birth.

6. Desire for Hastened Death

Emotional and physical pain, and in addition, if the patient and his family are shunned by relatives and friends, leads to a greater desire to end everything. Thus, it was common to most of the interviews that the participants prayed for an early release, when the pain and isolation became unbearable.

7. Hope

The one thing, which persisted through all the narratives, was hope. In listening to the terminally ill patients, I realized that even the most accepting and realistic patients left the possibility open for some cure, for the discovery of a new drug. It is this glimpse of hope that maintains them through days, weeks or months of suffering.

Hence these themes all revealed that the terminal patient has certain special needs that have to be addressed and he needs help not only medically but also a lot of emotional support along with it.

Discussion

Despite the increased attention to control of several troublesome symptoms in patients with cancer, particularly pain, fatigue, nausea, and vomiting, there has been no similar concentrated effort to address the psychological dimension - the distress which patients and their families′experience. This omission becomes glaring when one recognizes that the psychosocial domain is a part of the care of all patients, at all stages, all disease sites, all treatments and as part of each encounter with the oncologist and the staff. In fact the psychosocial dimension is the only area that is involved in the care of all patients with cancer at all times. Presently more information needs to be given to the primary oncology staff about how to recognize significantly high levels of anxiety and depression; how to query the patient to elicit information about their feelings, and how to identify appropriate resources to which the patient could be referred.

Relevant Issues Concerning the Terminal Cancer Patients

The topics discussed below, have been based on the emergent themes that play an important role in the lives of these patients. They deal with what intervention strategies should be utilized to help the patients, as well as, how the belief in karma can help gain a more positivistic outlook towards death and the core role this belief in karma can play in the counseling of the patients and their families.

(A). Breaking Bad News
Most of the patients who were interviewed, informed that they had not been educated by their doctors about what cancer was, what it entailed and how their treatment would proceed. This left them bewildered and grappling for information. Thus the bad news has to be broken gently and sensitively, though it is an unpleasant task. Also, the patient is likely to feel more in control of the situation if he is given basic knowledge about cancer-as a disease and about the procedure of treatment that will be followed.

(B). Pain Management Methods
Along with the emotional trauma, that cancer patients go through, they also undergo, a lot of physical pain. Thus, they need help to cope not only with emotional disturbances but also the unbearable physical pain. Psychologists have come up with various methods, for the purpose of management of pain. There are 2 major techniques which are used for this purpose - physical reconditioning, and cognitive restructuring.

(C). Psychosocial Interventions
Distress is a very common response to cancer and its treatment, and, in many instances, may intensify the suffering of people fighting cancer. Key to an effective intervention is providing cancer patients with information, emotional support and an opportunity to discuss their fears about the disease and its treatment.

(D). Karma Theory
As was seen in most of the narratives, karma has negative connotations in peoples′lives. The suffering is seen as the fruits of bad karma. Most narratives revealed that karma was used as a coping mechanism in their lives, to gain acceptance at least at the cognitive level, of the things happening to them. Every suffering in life is a chance to clear; wash up; wash out and emerge radiant before the funeral and the soul′s journey up again.

Thus, the thoughts on karma, Atman and never ending human spirit, can always be used with Indians, (because of their natural cultural understanding of these concepts) for the purpose of counseling, both the terminal patients and their families.

(E). Death Not As an End but As Growth
It may seem strange relating death to growth. Ordinarily, death is seen as the end of growth and existence. Yet, in the larger scheme of things, death is an integral part of life that gives meaning to human existence. It sets a limit to our lives, reminding us to spend our days on things that matter the most. Those who are fortunate enough to have some warning of their end often find it a time of personal growth. Similarly, grieving over the loss of a loved one may help us relate more deeply to those who remain.

(F). Counseling for the Dying Person
Often, the dying person feels reserved and insecure. So, the first essential thing is to relax any tension in the atmosphere in whatever way comes most easily and naturally. Once confidence and trust has been established, the atmosphere becomes relaxed and this will allow the dying person to bring up the things he or she really wants to talk about. The person should be encouraged warmly to feel as free as possible to express thoughts, fears, and emotions about dying and death.

When the dying person is finally communicating his or her most private feelings, he or she should not be interrupted, or any of the feeling he or she is expressing be denied or diminished. The terminally ill or the dying are in the most vulnerable situation in their lives, and a counselor needs all the skills and resources of sensitivity, and warmth, and loving compassion to enable them to reveal themselves.

They should be heard out in silence: an open, calm silence that makes the other person feel accepted. The listener should be as relaxed as possible, at ease; should sit there with the dying person as if he or she had nothing more important and enjoyable to do.

(G). Spiritual Healing For the Dying Person[16]
It is the attitude towards suffering that matters a lot. If we look at it from too close up, we may feel overwhelmed, so that on top of the suffering itself, we also have depression and anxiety. But if we look at the same situation from a different perspective, we may be able to see that although it is truly tragic, it could be worse.

One who is dying is like a person who is like a person who is leaving one country for another country and who is allowed to take not the things he owned but only what the law permits. In this greater journey, what the law allows a person to take are only the ′karmic′forces one has collected so far, not material things such as house, family, or money. When you die you will have to leave all that behind.

Thus it was found that these patients who reach the terminal stage of their disease need psychological help and support to a great extent, to untangle and relieve a great deal of emotional distress they experience. Also, since the study was done in an Indian scenario, the belief in karma and spirituality emerged as the milestones in the acceptance and understanding of the disease and the pain. Hence, a counselor can use these beliefs to come up with better ways of handling, helping and supporting the clients. Lastly, though my research is just a drop in the ocean, I hope, it will help in some way, in building up a support base for both the cancer patients and their families.

References

Copyright 2005 - Journal of Cancer Research and Therapeutics