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Literature Reviews

LIT REVIEW: SPIRITUALITY, PALLIATIVE CARE AND THE PROFESSIONAL CAREGIVER

by Michael Brown

Caregiver observed patient suddenly noticed how spiritual Yo Yo Ma music is (Boston & Mount, 2006).

Caregiver notices how patient suddenly takes up poetry (Brayne et al., 2006, p. 20).

Themes include how spiritual and existential needs of patients are identified and interpreted by professional caregivers, how caregivers identity and interpret own experience of spiritual and existential suffering, and how caregivers perceive strengths and barriers to providing spiritual care (Boston & Mount, 2006).

Patients find it difficult to approach physicians to talk about spiritual and existential matters (Brayne et al., 2006).

When asked what ultimate sense they make of infants suffering, respondents said there was no sense to be made, or this was part of a larger cosmic plan they did not understand, or part of a larger plan that included God or a higher power with degrees of agency over infants

Themes for physicians with regard to end-of-life care include: Physician training marginalizes aspects of care, doctors overwhelmed by the busyness of their days, some doctors self-impose busyness as an involuntary excuse, and there is difficulty communicating subjective views between patient and physicians (Chibnall et al., 2004).

According to Chibnall et al. (2004), physician training was detrimental to providing PSS to patients in St. Louis, Missouri: physicians had to process their first existential crisis alone, lack of empathy from supervisors, lack of time and place to discuss event, use denial as coping mechanism, training instilled message that death is enemy to be defeated or denied, as well as distancing effects of technology and emotional desensitization (p. 421).

Katz & Genevay (2002) noted from case examples that some professionals may not deal with their relationships at home and fill their intimacy void with clients (p. 333). Katz & Genevay (2002) give example of psychiatrist that transferred case to block own difficult feelings stirred up by dying patient (p. 330). In another case, they note how the professional makes assumptions about family

Doorenbos et al. (2006): Nurses that promoted dignified dying in India supported patients to find spiritual comfort at end of life, with nurses from the south reporting a greater number of these spiritual related interventions (p. 32). Doorenbos et al. (2006) speculate this may due to hospitals in south non-governmental Christian organizations, while government-run hospitals for indigent people have nurses who are paid lower salaries and have less palliative care training, and private hospitals in the north focus on superior technological care options and do not place value on palliative care (p. 32).

Ellis & Campbell (2004): "

Interdisciplinary teams

The need for comfort is highly individualized and a person who is spiritually troubled but not in pain physically will seek psycho-spiritual comfort. It therefore takes time to develop trust with patient and their family, time for beneficial communication and understanding, and time enough to make person feel they matter (Evans & Hallett, 2007).

Flannelly et al. (2004) note in their study of scholarly articles that there was a tendency for non-research articles to be more likely to address spirituality, whereas research articles were more likely to address religion. They continue that in the last 20 years or so, spirituality has become differentiated from religion or religiousness, and the concept of spirituality has taken on some of the features of religiousness with the concept of religion narrowed down to its more institutional, doctrinal, or ritualistic features.

Gilliat-Ray (2003) notes that academics and educators have a much wider definition of spirituality than nurses, who tend to define it relation to God or a Deity. She also emphasizes that nurses

There is a need to focus on the knowledge, skills and actions of individual healthcare professionals so that good practice is affirmed, personal skills and limits are recognized, and training and development needs are identified. A four-level competency framework was created by the authors based on knowledge, skills, and actions to specify spiritual and religious care that can be understood and achieved by staff and volunteer caregivers(Gordon & Mitchell, 2004)

Social Work

Operational Definitions of Spirituality

Boston & Mount (2006) highlight how the boundaries between psychological, existential, and spiritual issues were not clearly drawn for participants in the interviews (p. 15).

Boston & Mount (2006) note how the terms

Spirituality: individuals who believe their life have a purpose but do not necessarily participate in established organized belief practices Brown et al., 2006).

Evans & Hallett (2007) did not provide operational definition of spirituality, but discussed aspects of how the spiritual needs of terminally ill incorporate a search for meaning and a sense of forgiveness and is not wholly about specific religious or agnostic issues.

Flannelly et al. (2004) note that spirituality typically was mentioned in the context of spiritual care, needs, awareness, or well-being in the scholarly articles that they studied.

Spiritual care

Operational Definitions of Religion

Religion defined as a way of perceiving life meaning and higher purpose through a codified philosophy, shared doctrine, and community worship (Brown et al., 2006, adapting definitions from McKee & Cheppel, 1992, and Bessinger & Kuhne, 2002).

Flannelly et al. (2004) note that mention of religion typically included religious affiliation/denomi nation and/or religious beliefs, practices, services, traditions in general, or traditions in relation to specific religious faiths in the scholarly articles that they studied.

Religious care

Overview of Methods

Abrahm et al. (1996) used all data collection forms which included demographic and medical information, and assessment of medical, nursing, psychosocial, and spiritual needs of patients and families. Team meetings were held weekly or more if clinically indicated. A medical oncologist, nurse coordinator, oncology social worker, and hospital chaplain were on the team.

Boston and Mount (2006) highlight publications from last ten years that present systematic reviews of research about religion and health, and double blind studies on intercessory prayer suggesting better clinical outcomes among prayed for victims. Boston and Mount (2006) in their study used a qualitative focus group to investigate issues from perspective of highly experienced palliative care providers. Two authors are a palliative care physician and nurse educator experienced in qualitative research.

Brayne et al. (2006) used a questionnaire that provided demographic information, asked about interviewee

Cadge & Catlin (2006) used data from an anonymous survey which included 45 questions, two-thirds were close-ended. The data was collected by Catlin, MD, in the neonatal intensive care unit at Massachusetts General Hospital for Children.

Chibnall et al. (2004) conducted two discussion groups to talk with physicians about end-of-life care.

A questionnaire was filled out by people who left religious communities and subsequently chose to work in mental health care. The questions sought to elicit information on why people entered the religious communities, their experiences while there, reasons for leaving, their subsequent employment, and the impact their religious experience had on their work in caring professions. Very little else about the questionnaire was provided in this article by the authors (Crawford et al., 1998).

Conversational interviews and semi-structured interviews were conducted by Evans & Hallett (2007) using a sampling strategy to explore the meaning of comfort care for hospice nurses, understand how they pursue this work, and examine the means by which they provide comfort to hospice patients. An interview guide with issues was used, and Evans maintained a reflective journal throughout the study. Hallett is a senior lecturer and has Phd in nursing, and Evans is nurse and lecturer with MPhil degree.

Flannelly et al. (2004) read articles published in three journals from 1990 to 1999 to see if they explicitly mentioned religion and spirituality. They included statistical and thematic analyses.

Gilliat-Ray (2003) examines definitions of spirituality in nursing literature and compares them to ways in which spirituality is defined or not defined in field of theology and religious studies.

Measurement Tools

Brown et al. (2006) present some clinical tools that physicians can use a structured approach to assessing and treating spiritual distress, such as the practical guide JAMA, the 10-item instrument called the

Katz & Genevay (2002) present an Early Behavioral Indicators table, a Feeling Self-Reflection Survey, and a Self-Awareness Exploration Questions form to assist professionals in coping with their emotional responses.

Doorenbos et al. (2006): The International Classification for Nursing Practice (ICNP) classifies nursing phenomena, actions, and outcomes that can be classified and enable intercultural and international comparison of nursing data.

Research Conclusions
is given in the context of shared religious beliefs, values, liturgies, and lifestyle of a faith community (Gordon & Mitchell, 2004). is usually given one-to-one, person-centered, makes no assumptions about personal convictions or life orientation, and not necessarily religious (Gordon & Mitchell, 2004). are increasing because spiritual needs not frequently addressed, there is a growing response to family-focused care, and there are broader efforts to improve professional and patient communication (Connor et al., 2002). The inadequacy of words to express spirituality was a common theme" for professional caregivers. (Boston & Mount, 2006, p. 17).’ suffering (Cadge & Catlin, 2006).’s culture and does not explore this particular family’s own responses to their loved one dying (p. 332). …physician and patient respondents believed that holding or expressing dogmatic religious views may create a barrier to fruitful spiritual discussions (p. 49). ’ stereotypes of non-Christian religions must be overcome."Spirituality was equated with a sense of meaning" (e.g., did not believe in life after death but believed in the goodness of his wife) (Boston and Mount, 2006, p. 15). "spiritual" and "psychological" were sometimes difficult to distinguish for caregivers (p. 17).’s professional observations, and questioned the impact death bed phenomenon had on spiritual and religious beliefs of the interviewee. Brayne et al. (2006) also conducted semi-structured interviews that were tape recorded. "Living Well Interview," and interventions including psycho-social-spiritual group discussions (p. 84). "Results from the factor analysis indicate that 11 items can be used to provide a valid assessment of dignified dying among Indian nurses. Further studies are needed to validate these items in other cross-cultural nursing samples."

Data presented indicate the Philadelphia VAMC Hospice Consultation Team was able to provide significant service to its veterans and, probably, also provided cost savings to the VA…" (Abrahm et al., 1996, p. 30). A hospice consultation team made up of a medical oncologist, nurse coordinator, oncology social worker, and hospital chaplain. The hospice consultation team was very effective in identifying and resolving medical, psychosocial, and spiritual problems. However, they discovered that they needed a psychologist or psychiatrist on their team to resolve "psychological problems of anxiety, depression, or anger" (Abrahm et al., 1996, p. 29).

The caregiver who brings awareness of personal vulnerability to the bedside, yet is willing to accompany the patient, effectively lights a fire of possibility that otherwise lies dormant, by activating the patient’s inner capacity to heal himself" (Boston & Mount, 2006, p. 25). Participants in this study suggest that spiritual discussions may be facilitated by the caregiver’s personal experience of suffering and by the imminence of the patient’s death. There is also a need for continuous reflective assessment of the personal emotional cost of being a palliative caregiver and for the provision of informal and formal opportunities for personnel support (Boston & Mount, 2006, p. 24).

The results of Chibnall et al.

Connor et al. (2002):

Crawford et al. (1998) observed that respondents in prior pastoral role cared for mentally ill, switched from religious life to mental health life in secular work, and were disappointed with previous religious life. Respondents

Ellis & Campbell (2004): "

Flannelly et al. (2004):

This survey supported the findings of other studies that patients tend to talk to nurses more than doctors" (Brayne et al., 2006, p. 23). Recommendations included caregiver support by teaching them therapeutic skills, learning language of the dying, providing educational booklets, forming a group with community and inpatient caregivers to discuss spirituality issues, have therapy in unit available for caregivers, have awareness and open discussion built into team structure, annual workshops and supervision specific to spirituality and dying (Brayne et al., 2006, pp. 23-24). ’s (2004) study suggest that the culture that selects and trains technically competent physicians does not value PSS and creates a work environment hostile to PSS concerns, thus it seems interventions designed to improve end-of-life care must address barriers at the cultural, organizational, and clinical levels to be effective (p.423). "The education of all health care professionals needs to value true interdisciplinary collaboration…no individual team member alone can meet the needs of these highly complex patients and families facing the most difficult passage of a lifetime." (p. 354)’ journey involved self-healing, understanding self, and to be understood – a kind of wounded healer journey. …patients may be more influenced by physicians’ manner of approach than by their use of spiritual health screening questions is consistent with a substantial body of literature about sensitive subjects in the doctor–patient interaction...physician spiritual assessment is neither a marker for physician sensitivity nor a guarantee for successful spiritual dialogue" (p. 50)."Since our scientific understanding is constrained by the definitions we use to measure concepts, more explicit operational definitions are needed to help to clarify the relationship between the concepts of religion and spirituality, and their influence on health and well-being."

Hall et a. (2006): It is possible to introduce meaningful interprofessional education to medical, nursing, and spiritual care students early in their training which includes fostering professional collaboration.

Future Research

Cadge & Catlin (2006) note that few people who work in neonatal intensive care units have strictly scientific responses to the existential dilemmas of their work. They continue that the majority of providers referred to otherworldly plans including God or other higher power.

Patterns by religious tradition, occupation, gender, and other demographic factors known to influence religious belief and practice might be evident within individual neonatal intensive care units, but demands further research (Cadge & Catlin, 2006).

The role of institutional factors in the shape of the religious affiliation of the hospital or the religious interest or sympathy of hospital and unit leaders are important contextual influences to investigate in studies comparing more than one unit (Cadge & Catlin, 2006).

Investigate how and in what context spirituality and religion come up and are addressed by physicians, nurses, and chaplains in neonatal intensive care units and other medical settings (Cadge & Catlin, 2006).

Little recent research considers how religion and spirituality are present in institutions among physicians, nurses, patients, social workers, administrators, and other employees (Cadge & Catlin, 2006).

Chibnall et al. (2004) conclude that organizational interventions, such as recognition, feedback, and remediation, combined with a method for quality improvement as espoused by Lynn and colleagues, are particularly unexplored in the current literature. Chibnall et al. also note that recent literature offers a variety of models, but

Connor et al. (2002):

"While these themes are largely invisible in the seemingly secular day-to-day work on the unit, their presence begs for further investigation and explanation" (Cadge & Catlin, 2006, p. 257)."mostly unresearched," for initiating and managing PSS communication at the end of life (p. 423). They also note that future research needs a larger sample size from all medical specialties, as well as broader age, gender, racial, and religious affiliation distributions to provide a wider range of opinions, attitudes, experiences and values (p. 424)."Interdisciplinary care is especially valuable for people who are chronically ill and dying; however, this care is not necessary for all patients. We need clearer knowledge concerning how to apply what kinds of interdisciplinary care to which populations."

Doorenbos et al. (2006):

"Investigate the disparities inherent in different religious affiliations within the cross cultural sample of Indian nurses. As well, "A unifying language framework is necessary to promote scholarly exchange among nurses cross-culturally, and the ICNP® provides such a framework for nursing phenomena and actions. Results of this study contribute to the ongoing development of the ICNP®."

Respondents may have important different, modifying, or secular viewpoints which are not represented here and need to be explored in future study (Cadge & Catlin, 2006).

Gilliat-Ray (2003) suggests the need for more research on spiritual needs be carried out among patients, especially those who have spiritual needs and those who do not belong to any particular faith group. This may help close the gap between what patients really want, and the needs nurses think they are fulfilling for patients.

What Hasn

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Search TermsA range of terms were used in searching through social science and medical journals on the topic of professional caregivers, spirituality, and palliative care. They included: spiritual needs; spiritual; spiritual counsellors; spiritual caregivers; religion; religious affiliation; life experiences; coping; terminally-ill; death and dying; terminally ill patients; death attitudes; care of the chronically ill and dying; and caregivers.

Themes

According to Abrahm et al. (1996), care of cancer patients involves network of hospice services, consultation teams advising on the management of hospitalized cancer patients not residing on the hospital wards, and coordinating with community agencies that provide hospice care to patients in their homes. (p. 24)