spiritual journey during and after cancer treatment

2
Conference Report Spiritual journey during and after cancer treatment B Introduction Spirituality is important in medicine and particularly in cancer care. Patients in life-threatening situations experience high stress and anxiety. Religious and spiritual beliefs are likely to improve coping and reduce both anxiety and depression. Addressing the spiritual beliefs of the patient provides more holistic care. These beliefs facilitate inter- personal relationships and can possibly improve both psychological and physical outcomes. These factors notwithstanding, addressing spirituality is difficult. Health care providers receive little or no training in how to discuss these issues with patients. There is insufficient time during a routinely scheduled follow-up visit to fully discuss spiritual issues. The medical environ- ment is not always conducive to these concerns. Patients and practitioners may be of several religions and each may vary in their knowledge of the other. Cultural backgrounds may influence religious beliefs. Despite these obstacles, there are an increasing number of studies – now totaling several hundred – dealing with spirituality and cancer in the literature. Spirituality is defined as the search for the sacred. This refers not only to God, a higher power, or the divine, but also to aspects of life that take on spiritual character and significance by virtue of their association. Religion, in con- trast, is an organized system of beliefs, practices, and symbols that are designed to facilitate closeness to a higher power and includes one’s relationship with and responsibility to others. There are several measurements of religiousness and spirituality. While these concepts can be elusive to study, numerous instruments have been developed to facilitate a common understanding. Questions to patients might include: their denomination, how often they attend services, how often they pray, and questions about how religious and spiritual they are. Several questionnaires have been developed by behavioral scientists to measure spirituality. They include the Functional Assessment of Chronic Illness Therapy (FACIT), the Ironson-Woods Spirituality/Religiousness (S/R) Index, Religious/Spiritual Coping long form (RCOPE), Daily Spiritual Experience Scale (DSES), Index of Core Spiritual Experiences (INSPIRIT), and the Duke Religious Index (DRI). The reason that assessment instruments are needed is that traditional questions and responses regarding participa- tion in church activities are confounded. Religiousness and spirituality are overlapping but not equivalent concepts. Furthermore, studies have shown that observers are poor judges of patients’ spirituality. There are great variations between individuals and blimit valuesQ are not yet defined. There are several methods of religious coping that need to be taken under consideration in the evaluation including: meaning, control, comfort, intimacy, and life transformation. Several styles of spiritual coping have been identified by their principle guiding heuristic: if I have a problem I solve it myself; God gave this problem to me so that I can grow; I pray to God and work with Him to solve my problem; God pro- vides for me; and others. Some investigators have classified spirituality and treatment decisions into two categories: active and passive. An active attitude might be characterized by a patient participating in therapy. Conversely, a passive attitude might be by a patient declining therapy. Spirituality and religiousness have been shown to decrease anxiety, pain, and hostility; to encourage cooper- ation; improve interpersonal relationships; increase satisfac- tion with life; and decrease depression. Negative religious coping has been associated with a decline in the activities of daily living. It is known that regular church attendance decreases mortality and that prayer improves outcomes from myocardial infarction. Notwithstanding these data, few intervention trials have been conducted. Methods We conducted a study of 95 patients with gynecologic cancers. The objective of the study was to determine the health- related quality of life in disease-free patients after therapy for gynecologic cancers. We used the Functional Assessments of Cancer Therapy FACT-G quality of life questionnaire and a questionnaire designed to address spiritual needs at least 6 months after treatment was completed. Responses were compared to a 42 unmatched health volunteers who were seen for routine gynecologic exam. The responses were compared using t tests, chi-square tests, Wilcoxon rank sum tests, Spearman rank correlations, and linear regression. doi:10.1016/j.ygyno.2005.07.060 B This report is based on a presentation given at the 4th International Conference on Cervical Cancer and was prepared in part by Michele Follen. Gynecologic Oncology 99 (2005) S129 – S130 www.elsevier.com/locate/ygyno

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www.elsevier.com/locate/ygyno

Gynecologic Oncology 9

Conference Report

Spiritual journey during and after cancer treatmentB

Introduction

Spirituality is important in medicine and particularly in

cancer care. Patients in life-threatening situations experience

high stress and anxiety. Religious and spiritual beliefs are

likely to improve coping and reduce both anxiety and

depression. Addressing the spiritual beliefs of the patient

provides more holistic care. These beliefs facilitate inter-

personal relationships and can possibly improve both

psychological and physical outcomes.

These factors notwithstanding, addressing spirituality is

difficult. Health care providers receive little or no training in

how to discuss these issues with patients. There is

insufficient time during a routinely scheduled follow-up

visit to fully discuss spiritual issues. The medical environ-

ment is not always conducive to these concerns. Patients and

practitioners may be of several religions and each may vary

in their knowledge of the other. Cultural backgrounds may

influence religious beliefs. Despite these obstacles, there are

an increasing number of studies – now totaling several

hundred – dealing with spirituality and cancer in the

literature.

Spirituality is defined as the search for the sacred. This

refers not only to God, a higher power, or the divine, but also

to aspects of life that take on spiritual character and

significance by virtue of their association. Religion, in con-

trast, is an organized system of beliefs, practices, and symbols

that are designed to facilitate closeness to a higher power and

includes one’s relationship with and responsibility to others.

There are several measurements of religiousness and

spirituality. While these concepts can be elusive to study,

numerous instruments have been developed to facilitate a

common understanding. Questions to patients might include:

their denomination, how often they attend services, how often

they pray, and questions about how religious and spiritual

they are. Several questionnaires have been developed by

behavioral scientists to measure spirituality. They include the

Functional Assessment of Chronic Illness Therapy (FACIT),

the Ironson-Woods Spirituality/Religiousness (S/R) Index,

doi:10.1016/j.ygyno.2005.07.060

B This report is based on a presentation given at the 4th International

Conference on Cervical Cancer and was prepared in part by Michele Follen.

Religious/Spiritual Coping long form (RCOPE), Daily

Spiritual Experience Scale (DSES), Index of Core Spiritual

Experiences (INSPIRIT), and the Duke Religious Index

(DRI). The reason that assessment instruments are needed is

that traditional questions and responses regarding participa-

tion in church activities are confounded. Religiousness and

spirituality are overlapping but not equivalent concepts.

Furthermore, studies have shown that observers are poor

judges of patients’ spirituality. There are great variations

between individuals and blimit valuesQ are not yet defined.

There are several methods of religious coping that need to be

taken under consideration in the evaluation including:

meaning, control, comfort, intimacy, and life transformation.

Several styles of spiritual coping have been identified by

their principle guiding heuristic: if I have a problem I solve it

myself; God gave this problem tome so that I can grow; I pray

to God and work with Him to solve my problem; God pro-

vides for me; and others. Some investigators have classified

spirituality and treatment decisions into two categories:

active and passive. An active attitude might be characterized

by a patient participating in therapy. Conversely, a passive

attitude might be by a patient declining therapy.

Spirituality and religiousness have been shown to

decrease anxiety, pain, and hostility; to encourage cooper-

ation; improve interpersonal relationships; increase satisfac-

tion with life; and decrease depression. Negative religious

coping has been associated with a decline in the activities of

daily living. It is known that regular church attendance

decreases mortality and that prayer improves outcomes from

myocardial infarction. Notwithstanding these data, few

intervention trials have been conducted.

Methods

We conducted a study of 95 patients with gynecologic

cancers. The objective of the studywas to determine the health-

related quality of life in disease-free patients after therapy for

gynecologic cancers. We used the Functional Assessments of

Cancer Therapy FACT-G quality of life questionnaire and a

questionnaire designed to address spiritual needs at least 6

months after treatment was completed. Responses were

compared to a 42 unmatched health volunteers who were seen

for routine gynecologic exam. The responses were compared

using t tests, chi-square tests, Wilcoxon rank sum tests,

Spearman rank correlations, and linear regression.

9 (2005) S129–S130

Conference ReportS130

Results

The median age in the cancer treated group was 58 years

compared to 56 years in the control group. In both groups,

there were 49% Caucasian and 51% African-American

patients. 70% of the patients had a high school or lesser

education. All three major gynecologic neoplasms were

represented: 60% of the patients had cervical cancer, 28%

had uterine cancer, and 12% had ovarian cancer. The

median time since therapy ranged from 6 to 149 months.

There were no overall differences in scores in FACT-G

subscales. Cancer survivors scored slightly higher than

controls on the emotional well-being subscale (20.4 versus

19.2). Among cancer patients, scores were lowest in patients

with ovarian cancer. The sample size did not permit

extensive analysis of variables in this subgroup. Patients

who were cancer survivors had lower scores if they had

lower educational levels and lower scores if they had no

help at home. In this group of patients, both their functional

well-being and their FACT scores were lower. Linear

regression revealed significantly lower total quality of life

scores in patients with ovarian cancer diagnosis, radiation

therapy treatment, multi-modality therapy (surgery plus

radiation or chemotherapy or both), less than a high school

education, and lack of help at home. Patients wanted to

discuss anxiety and fears in 69% of cases and future

symptoms in 68% of cases. Older patients preferred that the

physician initiate the discussion of these issues.

Certain questions were repeatedly important to patients.

These questions include: why is this happening to me; what

is the meaning of my life; and what happens after we die.

Thirty-seven percent of the patients in the study received

help in dealing with spiritual questions. Of these, two thirds

received comfort from their pastor and one third from family

members. The FACT score was significantly higher in those

patients receiving help, from either source, compared to

patients not receiving help. One third of patients wanted to

discuss spiritual questions related to cancer diagnosis and

treatment. Those that desired these discussions scored

significantly lower than those without a desire for dis-

cussion. Communication was important to patients. Eighty

percent want their physician to ask about emotional

problems, 71% about family problems, and 58% wanted

to discuss the Do Not Resuscitate status early in their course

of disease. When asked if doctors should ask patients about

needing spiritual help, 59% of patients said yes.

Conclusions

Our conclusions were that overall recovery from treat-

ment for gynecologic cancer was good for this group of

patients. Factors that were associated in this study with

poorer overall well-being were ovarian cancer, prolonged

therapy, poor education, and little social support. We learned

that spirituality has many dimensions and that some aspects

of spirituality can be measured. Most patients want to

discuss spiritual needs and questions. From this work, it

seemed a culturally appropriate discussion would be most

comforting to patients. We learned that patients want

physicians to show an interest and help take care of the

patients’ spiritual and religious needs.

Studies of spirituality need to take into account measures

of mental health, cultural differences, and long-term follow-

up. The impact of religious and spiritual beliefs on survival,

treatment decisions, and support measures needs additional

research. Further studies, especially intervention trials,

would be of great value.

Brigitte Miller

Wake Forest University,

Department of Obstetrics and Gynecology,

Medical Center Boulevard, 4th Floor,

Comprehensive Cancer Center,

Winston-Salem, NC 27157, USA

E-mail address: [email protected].

Fax: +1 336 716 4334.