Receiving Spiritual Care: Experiences of Dying and Grieving Individuals

Abstract

The study examines the perceptions of interfaith spiritual care, received through a volunteer hospice organization, by 10 individuals facing death and dying. Qualitative methodology based on the Interpretive Phenomenological Analysis was used to collect and analyze the data. Four superordinate themes reflected meanings ascribed to spirituality and spiritual care in facing end of life: Vital Role of Spirituality in the End-of-Life Care, Definitions and Parameters of Spirituality and Interfaith Spiritual Care, Distinct Aspects of Interfaith Spiritual Care, and Unmet Spiritual Needs. The results expand an understanding of the role of spirituality and spiritual care as part of the hospice and palliative care through attention to individual perceptions and experiences, as well as to ways to expand attention to spirituality within the hospice care.

Keywords

Hospice spiritual counseling death dying bereavement meaning isolation palliative care inter-disciplinary team chaplaincy inter-faith

Spiritual care practices within hospice settings reflect a growing recognition of the importance of attending to patient’s existential needs within the palliative care settings, as well as in working with those who are bereaved (Cobb, Dowrick, & Lloyd-Williams, 2012; Daly & Matzel, 2013; Nelson-Becker, 2013; Puchalski et al., 2009; Taylor, 2012; Van de Geer & Wulp, 2011). Undoubtedly, religious care for people facing death and loss has a long established history, and a majority of religious bodies, whether large or small, make visible the human existential questions regarding end of life (Paloutzian & Park, 2005). Thus, even within contemporary societies that tend to formally eschew spiritual worldviews, many individuals who face experiences with death and dying seek support from their religious institutions or individuals affiliated with their religious groups (Marrone, 1999; Parry & Ryan, 1995). The attention to spiritual aspects of living and dying was typically relegated to religious institutions or private spiritual practices and has not been included in scholarly examination of the experience of death and grief.

In the recent decades, growing attention has been given to the role of spirituality, not only in the day-to-day lives of individuals unaffected by death and dying (Paloutzian & Park, 2005), but specifically in the experiences of those who face end-of-life concerns (Block, 2001; Chibnall, Videen, Duckro, & Miller, 2002; Daly & Matzel, 2013; McClain, Rosenfeld, & Breitbart, 2003; Nelson-Becker, 2013; Walsh et al., 2007). Definitions of spirituality typically focus, in contrast to religion, on subjective experiences of the sacred, which may or may not include clear and specific beliefs and practices that are considered religious in their nature (McCarroll et al., 2005; Zinnbauer et al., 1997). Not only does this growing focus on spirituality reflects the acceptance of the significance of spirituality in all aspects of Western individual human experience (Paloutzian & Park, 2005), it also emphasizes the profound cultural and social impact of spirituality on societies and institutions, including palliative and grief-focused care (Daly & Matzel, 2013; McClain et al., 2003; Nelson-Becker, 2013).

The World Health Organization (Sepúlveda, Marlin, Yoshida, & Ullrich, 2002) emphasized the key role of spirituality in palliative care practices, although the implementation of concrete ways to include attention to spirituality by all care providers in working with people who are dying or facing life-threatening illnesses has been named as one of the greatest challenges facing palliative care services (Van de Geer & Wulp, 2011). Both the North American and European task forces that examined the role of spirituality in palliative care affirmed the definitions of spirituality as “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they expressed their connectedness to the moment, to self, to others, to nature, and to the significant or sacred” (Puchalski et al., 2009, p. 886; Van de Geer & Wulp, 2011, p. 87).

The history of the hospice movement itself shows its profound connection to the spiritual needs of individuals who are dying and their families. Early forms of hospice were believed to have been developed by Catholic orders, caring for the terminally ill during the crusades (Association of Professional Chaplains [APC], 2013; Connor, 1997). The modern hospice movement was developed in England with the help of Dame Cicely Saunders, a dedicated nurse turned social worker and physician (Connor, 1997). In her initial phases, Saunders recognized the need for spiritual care as an essential element of care for the dying, and her term total pain as related to dying and grieving included the spiritual dimension (Saunders, 2006).

In the United States, the first formally established hospice in Branford, Connecticut was initiated and coordinated in 1974 by a clergy member—chaplain of Yale University, Rev. Edward Dobihal together with the Dean of the Yale School of Nursing, Florence Wald (Aronson, 2005). In addition, the original hospice organizations in the United States included clergy in addition to physicians and other caregivers (APC, 2013; Connor, 1997). Therefore, the earliest forms of hospice care, both outside and within the United States, were grounded in spiritual care for the dying by emphasizing that religious, spiritual, and existential concerns are important to end-of-life care (APC, 2013).

Studies consistently show that a majority of individuals in the West identify themselves as spiritual or religious and that this self-identification plays an especially significant role when they face end-of-life concerns (Astrow, Puchalski, & Sulmasy, 2001; Balboni et al., 2007; Taylor, 2012). An assumption that individual spiritual needs, when dealing with terminal illness or bereavement, can be met through established religious communities has not been supported through research. For example, a study by Balboni et al. (2007) found that 49% of patients in palliative care who identified as religious and spiritual reported that their spiritual needs were not being met by their religious communities. This challenge in meeting subjective spiritual needs is related to negative outcomes: Delgado-Guay et al. (2011) found that in their sample of patients with advanced cancer, the “vast majority” of individuals identified as religious or spiritual. Their study showed that those who reported having low religious or spiritual “quality of life” (i.e., limited space for discussing spirituality or lack of spiritual and religious support) also reported significant “spiritual pain” as well as other negative psychosocial outcomes (p. 85).

Professional organizations that have focused on integration of spiritual care within palliative and bereavement care organizations highlight the complexity of what spiritual care may entail (Egan et al., 2011; Kalish, 2012; Puchalski et al., 2009). Specifically, the Consensus report on spirituality in palliative care as well as the European task force on the same issue indicated that spiritual care includes multiple approaches and domains. These approaches can include compassionate presence, meaning-focused therapy, identification of spiritual needs or resources, body work, yoga, meditation, and guided visualization among other integrative approaches that focus on spirituality (Puchalski et al., 2009; Van de Geer & Wulp, 2011).

The provision of spiritual care may depend on the type of hospice setting in which it occurs. Currently, the majority of U.S. hospices functions in three distinct ways: Medicare-certified hospices, social model hospices, and volunteer hospices (Jones, 2011). Medicare-certified hospices are regulated through the Medicare Conditions of Participation (Centers for Medicare & Medicaid Services [CMS], 2008; Connor, 2007). Medicare or insurance companies reimburse these types of hospices for providing hospice care that meets the Condition of Participation guidelines. The second type of hospice setting, termed social model hospices tends to include free-standing facilities that offer a location, in which Medicare-certified hospices can house their patients (Jones, 2011). Typically, “social model” hospices provide a place in between the dying individual’s home and an institution where care is delivered in a manner focused on the psychosocial and spiritual needs (Jones, 2011).

In the third approach, volunteer hospices function as a supplement to the Medicare-certified hospice by providing dedicated professional volunteers ranging from clergy and social workers to nurses and physicians who address varied needs of dying individuals and their families (Connor, 2007; Stoddard, 1978). Volunteer hospices typically receive financial support from the community through donations.

Volunteer and social model hospices tend to follow guidelines provided by the Volunteer Hospice Network (VHN) and National Hospice and Palliative Care Organization (NHCPO), although volunteer hospices do not have an organized body that offers regulation (Schmidt, 2003). Both social model and volunteer hospices tend to focus to a greater degree on the social and spiritual needs of dying individuals and their families. Historically, these organizations have been seen as a response to the medicalization of the hospice movement; their work is viewed as a move toward nonmedical interventions such as social work, counseling, and chaplaincy (Schmidt, 2003).

Research on the inclusion of spiritual care within end-of-life, hospice, or bereavement treatment points to the importance of attending to spiritual needs and experiences of people who are dying (Block, 2001; Chibnall et al., 2002; McClain et al., 2003) and grieving (Walsh et al., 2007). Despite this evidence, systematic inclusion of spiritual care practices within palliative and hospice care organizations continues to be problematic (Puchalski et al., 2009; Van de Geer & Wulp, 2011). Among the reasons for this challenge are lack of integration of spiritual care within all aspects of palliative and bereavement care, relegation of spiritual care to religious leaders or religiously designated chaplains, lack of interprofessional collaboration, lack of training on spirituality, and lack of research regarding the use of spiritual care (Puchalski et al., 2009).

Therefore, scholars have called to expand the inclusion of spiritual care in working with dying and bereaved individuals in research on clinical care (Van de Geer & Wulp, 2011). Because of the subjective and contextually dependent experience of spiritual care, qualitative research methods may be especially fitting in studying spiritual care from the perspectives of individuals who received such care (Creswell, 2012). Thus, this study provided an in-depth investigation of spiritual care in the lived experiences of individuals, both facing end-of-life concerns and those who are bereaved (but also experienced spiritual care as part of caring for a dying close relative or partner). These individuals participated in a spiritual care program through a social/volunteer model hospice that offers comprehensive counseling and social work services.

Methodology

Research Approach

Qualitative methods for data collection and analysis have been used in studying phenomena across multiple fields that seek to understand subjective human experiences (Barker, Pistrang, & Elliott, 2003; Creswell, 2012; Maxwell, 2005). Qualitative approaches’ advantage is in providing an in-depth and detailed examination of phenomena that may not be measurable through objective means as well as offering the opportunity to explore context and meaning of these phenomena in people’s lives (Barker et al., 2003).

Creswell (2012) highlighted that qualitative research enables scholarship to be carried out within naturalistic settings with attention to nuances of context and influencing social dynamics. In addition, such research allows scholars to examine ambiguous and complex phenomena that reflect individual level of experience while seeking to discover connections between individual human experiences toward a perspective that enhances understanding on a societal or communal level (Creswell, 2012). In addition, rich detailed description of the phenomena and their context allow those who interact with them to build a deeper knowledge and perspective, to inform their work, and to encourage future research, including quantitative (Maxwell, 2005).

Qualitative research encompasses many schools and perspectives, including Grounded Theory, phenomenology, narrative, ethnographic, and hermeneutic among others (see Creswell, 2012 for review). Each approach provides a different viewpoint on the phenomenon, guiding principles of data collection, analysis, and presentation. This study was based on a phenomenological approach that focuses on understanding phenomena with an emphasis on the lived experience of individuals (i.e., first-hand, subjective, and comprehensive accounts; Smith, Flowers, & Larkin, 2009). Phenomenological qualitative approaches further include differentiated strategies (Smith, 2004). This study on lived experiences of individuals who received spiritual care used the Interpretive Phenomenological Analysis.

Interpretive Phenomenological Analysis

The Interpretative Phenomenological Analysis (IPA) grew out of qualitative studies in health-care settings in the mid-1990s with emphases on capturing and exploring not only the lived experiences of phenomena themselves but also specifically on the meanings that people assign to their experiences (Smith et al., 2009). Thus, the overall aim of the IPA is “to explore in detail how participants are making sense of their personal and social world” (Smith & Osborn, 2008, p. 53). In addition, IPA as an interpretative approach emphasizes the role of the researchers in making sense or interpreting the data gathered from first-hand accounts (Smith & Osborn, 2008). Therefore, IPA stresses that “the participant is trying to make sense of their personal and social world and the researcher is trying to make sense of the participant trying to make sense of what is happening to them [sic]” (Smith et al., 2009, p. 3). Such an interpretation allows special attention to be given to the context of the interview and participants’ background.

In addition, IPA is idiographic because of its concern with the particular rather than general aspects of the subjective experience (Smith et al., 2009). Therefore, IPA studies are carried out with a relatively small (i.e., typically five to seven) and homogenous sample (i.e., individuals from shared backgrounds related to the phenomenon studied). Smith (2004), similar to other qualitative scholars (Creswell, 2012; Maxwell, 2005), emphasized that the rich details of the individual’s experience help inform about the common experiences of humanity related to varied phenomena.

As stated earlier, IPA was initially developed in the context of health psychology and used in studies such as experiences of HIV/AIDS diagnosis, relational dynamics in dealing with terminal illness, and severe medical complications (see Smith et al., 2009 for review and examples). IPA has also been used in applied social and clinical psychology (Reid, Flowers, & Larkin, 2005). According to Smith and Osborn (2007), IPA is applicable for “dynamic, contextual and subjective, and relatively under-studied topics where issues relating to identity, the self and sense-making are investigated” (p. 525). Therefore, IPA methodology is fitting in the study of spiritual care experiences of individuals facing end of life, specifically those dealing with terminal illness and impending death, as well as those who are bereaved and participated in a spiritual care program as a partner or relative of a person who received end-of-life hospice care.

Participants

Smith (2004) suggested that participant selection must follow theoretical and practical considerations related to studied phenomenon. Furthermore, Smith et al. (2009) indicated that participants should “represent a perspective, rather than a population” (p. 49). The IPA methodologists further emphasized that participants should be considered “experts” on their own experiences in the researched phenomenon, thus providing the researchers with a detailed understanding of their inner experiences.

In this study, an initial discussion of selecting participants occurred in several meetings with both providers of spiritual care as well as hospice administration and staff, familiar with both the process and the population of patients (terminally ill or dying) and clients (bereaved) who typically received spiritual care. These initial meetings resulted in a list of individuals who may be best suited for the study. Among settings and types of participants to include were those who were dealing with terminal illness, those who were receiving assisted living care, those who were receiving skilled nursing care in long-term care facilities, and those who participated in the spiritual care program as part of their bereavement (typically, as part of care for their dying relative or partner and then following their death).

Protection of Human Subjects approvals, including those by several Institutional Review Boards, was conducted prior to approaching participants. All participants received written and verbal consent forms and were also informed about the purpose of the study as well as their rights to not answer questions or discontinue the interview. An invitation to participate in the study (yes/no indication, choice of contact method) was mailed out to a list of individuals who received spiritual care within the previous year. This invitation included a prestamped return envelope. The responses were then shared with researchers, who were external to the hospice setting. The researchers followed up with participants to confirm their interest in participating.

As stated earlier, samples for IPA studies often include five to seven participants. In this study, 10 adults selected to participate. Their ages ranged from mid-40s to late 90s. Four were men, and six were women. Three individuals were receiving spiritual care as part of their diagnosis of a terminal illness; four individuals participated in the spiritual care program offered at their assisted living or skilled nursing long-term care location based on their advanced age; and three individuals were close relatives of those who died within the last year and received spiritual care in tandem with their relative as well as for themselves as part of their bereavement.

The backgrounds of participants were varied. Although several identified with organized religious beliefs and practices to some degree, the majority of participants identified themselves as spiritual or indicated that their religious preferences (e.g., Hinduism, Unitarian–Universalist backgrounds) were not represented by the traditional providers of spiritual care (e.g., chaplains). Most of the participants indicated that spirituality was a significant or very significant part of their lives or the lives of relatives whom they grieved. Nevertheless, several individuals stated that they did not perceive themselves as religious or spiritual but that it was vital for them that either they or their dying relative had an opportunity to examine existential or spiritual dimensions of death and dying.

All of the participants in the study received spiritual care services. Those who were in the assisted living or skilled care facilities as well as those who were facing terminal illness while in their home or the local medical hospice participated in spiritual care services at least once a week. The spiritual care services were given primarily by two counselors with advanced graduate-level training in spiritual care who were on staff at the local social model/volunteer (counseling-focused) hospice. In addition, three of the 10 individuals received spiritual care services from lay spiritual care companions, who were extensively trained through the volunteer hospice.

To protect individual identity and maintain confidentiality of participants, throughout the write-up of this study, participants will be referred to only by their approximate age, gender, and their specific relation to end-of-life experience (i.e., terminal illness, advanced age, bereavement). Because of distinct nature of participants’ spiritual and religious affiliations within their specific care settings, further information regarding their identity may break their confidentiality.

Data Collection

Interviews were conducted at a location and time chosen by the participants. Two of the interviews were carried out by phone because of participants’ location at the time of the study. Other interviews took place at locations most convenient to the participants, which often were either inside or near their room/bed. Although researchers checked on participants’ wishes for privacy during interviews, some of the participants indicated that they either did not care about others being present in the room (e.g., sleeping roommate, nurse) or asked that their room be vacated for the time of the interview.

Interviews varied in length. Several interviews with individuals who were facing severe physical and cognitive limitations because of their end-of-life experiences lasted for only 20 to 30 minutes. Most interviews lasted between 1 and 1.5 hours. All participants received consent forms informing them of the goals of the study, encouraging them to participate to the extent that they felt was appropriate, offering the opportunity to ask questions or to stop the study, as well as information about confidentiality. They signed the consent forms and were given a copy along with a verbal explanation of their rights. All of the participants expressed eagerness to participate in the study and to share their experiences and opinions, stating that spiritual care was an important aspect of their experience. Interviews were recorded and transcribed verbatim, and all names and identifying information were changed. The recorded interview data were primarily collected via electronic mediums and was securely stored on researchers’ computers.

Data Analysis

IPA scholars proposed specific stages of data analysis (Shinebourne & Smith, 2009; Smith et al., 2009). The first stage involves Immersion, which includes reading and evaluation of each individual transcript multiple times while noting significant themes, points, and ideas emerging in individual narratives. The process involves a line-by-line breakdown of the participant’s experiences with focus on their meanings, perspectives, and interests.

The second stage include Transformation of data, which emphasizes “convergence and divergence, commonality and nuance” (Smith et al., 2009, p. 79) among individual narrative toward construction of overall themes. During the third step, termed Labeling, the researchers discuss and decide on descriptive titles for each emergent theme or pattern in a way that encompasses multiple participant responses. In this stage, the goal is to “develop a structure, frame, or gestalt which illustrates the relationship between themes” (Smith et al., 2009, p. 79).

The last step of the analysis involves Organization. This stage not only provides an organized schema of themes and their interrelations but also includes a focus on the interpretive processes used by researchers. As common in all qualitative research, the organized themes must include “relevant extracts in the participants’ own words, not only to enable the reader to assess the pertinence of the interpretations, but also to retain the voice of the participant’s personal experience” (Shinebourne & Smith, 2009, p. 155).

Trustworthiness or validity of qualitative research findings is often a key aspect of the analysis (Creswell, 2012). Although member checking of the data (i.e., solicitation of further clarifications and confirmation of findings through follow-up interview with participants) is often recommended, in case of a study with individuals who faced end-of-life concerns, such follow-up seemed contraindicated. However, the study purposefully involved active review and involvement of peers (coresearchers with focus on methodological steps) and experts (coresearchers with focus on relevance, veracity, and comprehensiveness of the findings). Thus, peer checking and expert checking were carried out throughout the process of data analysis and writing of the results (Creswell, 2012).

Results

The results of the study were organized around the superordinate themes that appeared to be overarching within the narratives of individuals who participated in the study. Although each narrative emphasized a distinct subjective experience of the spiritual care process, the themes reflect global perceptions that as researchers we interpreted to represent the meanings across multiple participants and contexts. This section provides a summary of the themes, found in the study, illustrated by participant quotes. In addition, we highlight the distinct aspects found within each theme that point to variations and diversity of meaning and experiences related to aspects of spiritual care.

Vital Role of Spirituality in the End-of-Life Care

The majority of participants highlighted that, in their experience, spiritual and existential concerns were among the most significant aspects of end-of-life care for either themselves or relatives for whom they cared through their relatives’ dying. Most of the participants described significant spiritual connections and personal practices as part of their end-of-life care such as meditation, prayer, engagement in private rituals, discussions of spiritual topics, spiritual readings, and other forms of spiritual engagement.

A woman in her 40s, diagnosed with a terminal illness, stated that for her reengagement with spirituality occurred when she was

Getting sick, really sick. Facing death, you know … It was a time of shock. It finally made me stop and remember what is important to me. Helped me get back to being spiritual, seeking spiritual help, understanding life differently. You tend to run around, think you are spiritual, forget to really do anything about it, and then – it happens … Mine [terminal illness] made me re-engage with meditation practice … I started to work with a healer, with prayers for healing … It opened me to the Big Picture [participant emphasis].

A man in his 60s, who cared for his spouse through her terminal illness and death, shared that for him it was

More important than anything that [my wife] had that chance to talk with [spiritual care counselor] about what was most important to her. Her questions. Especially about afterlife, you know. That’s what she wanted most. What she needed most … She was clear. It was then important to all of us [caring for his wife].

The evidence of interest in spirituality was visible not just through narratives but also through displays and discussions of participants’ daily practices and artifacts related to their spiritual interests. For example, many, although not all, participants who were interviewed had spiritual books visible right next to them, including Tao Te Ching, the Bible as well as books about afterlife and miraculous healing. For example, a female participant in her late 70s who resided in an assisted living community began the interview with the concern that the Tao Te Ching book, which she carried with her “everywhere” and “read all the time,” was missing. After finding the book, the participant read several passages from the book, stating “Isn’t this marvelous … It is just what is needed to think about life, to deal with this [assisted living], to keep asking the right questions.” In addition, several participants referred to spiritual objects such as spiritual altars or art pieces that were created as the result of their interfaith spiritual experience and helpful in their experience of end of life. Several participants emphasized that spirituality was at the center of their lives throughout their lifespan and that focusing on their spiritual perspectives and practices from an open perspective was essential for their end-of-life care. For example, a male participant in his 50s discussed his sibling, whom he observed receiving interfaith spiritual care: “Her [sibling’s] spiritual life was focused on meditation, yoga, [the sibling] had I believe there is a Hindu temple up on the hill a little bit south of [town], and … used to go up not infrequently.” A woman in her late 90s remarked, “I’ve been always interested in spirituality. When I was working, treating people [as a counselor], we always talked about spirituality … Spirituality is so important.”

However, other individuals described themselves as neither spiritual nor religious throughout their lives but stated that facing end-of-life issues caused them to begin to search for spiritual meaning in life and to understand the spiritual nature of life and death. Although some mentioned more traditional spiritual practices related to their religious background (e.g., reading the Bible), several indicated that their end-of-life experience led them to expand their spiritual perspectives.

For example, a male participant interviewed at a long-term care facility, who was in his late 80s, shared that for many years he was severely depressed and contemplated suicide because of severe restrictions on his life by conditions related to his age and health. He discussed ways that the opportunity to participate in the spiritual care program allowed him to think about his life and suffering in broader spiritual context. He stated that meetings with his interfaith spiritual care counselor encouraged him to return to reading the Bible, which he stated he had not read for most of his adult life. He described his spiritual care experiences:

We don’t talk about the Bible. It’s just I started reading it. We talk about meaning. I don’t talk about spiritual. Spirituality. Spiritual care. I talk about how I depend on everything. Everyone. Meaning. Last time I talked about India … I thought about how in India, things are much worse. Circumstances can be so bad. So many poor. So much poverty. Struggle. But people go on. Have meaning. Have spirituality … I have always been interested in India. Read about India … They have beautiful philosophy. It’s hidden, you know. Less in your face. It is about living. Surviving. And living well. No matter where.

Another participant, a man in his 40s, who also participated from an assisted living facility because of debilitating long-term and terminal illness, similarly discussed that meetings with his spiritual care counselor encouraged him to look toward spiritual aspects of life and death.

As I started praying more and stuff, and I never in my life had opened a Bible, was raised Catholic, first communion, my baptism all that stuff. And then uh, the person I got to God was through [spiritual counselor], spiritually you know, like not having to be Catholic or Christian, just the fact of believing in God … Miracles do happen, you know, and I believe that. But yeah through [the spiritual counselor] I was able to reach a lot of goals in my life that I never thought I had cared about you know.

Therefore, the findings of the study indicated that participants perceived that a focus on their spiritual needs specifically through the spiritual care program was related to a significant part of their overall life experience. In addition, the spiritual care program aided them in engaging with spiritually focused questions and practices because of and as part of their end-of-life experiences.

Definitions and Parameters of Spirituality and Interfaith Spiritual Care

Another theme that emerged through the interviews focused on the diverse and dynamic definitions of interfaith spiritual care. Among the most common responses to how participants perceived their initial engagement with the spiritual care program offered through the local volunteer hospice center was their confusion. Specifically, spiritual care’s definition and parameters were often unclear for participants, and each one provided a description that fit their own perception.

A participant in her late 90s, residing in the skilled care facility shared, “Spiritual care?… At first, I didn’t know what spiritual care was. What is spiritual care? What it means? I wasn’t sure. I just met with [spiritual care counselor].” In addition, when asked, individuals resisted a definition and expressed that the spiritual care had “to meet me where I was” rather than have a predefined focus. Thus, participants used such words as “meditation,” “talking about meaning,” “prayer,” “wondering about afterlife,” “treating spirit not just body,” “confirming spiritual perspective,” “opportunity to look, to go deeper in dealing with death sentence,” “unity with like minded [spiritual] people,” “dealing with anger at God,” “energetic healing” among multiple other descriptive perspectives of how participants understood what occurred within the interfaith spiritual care process.

Moreover, several participants expressed their initial hesitation or concern about receiving interfaith spiritual care because of lack of knowing of what may be involved, but especially because of the perception that interfaith spiritual care will be similar to what they perceived within traditional religious care (e.g., a visit from a priest or rabbi). For example, a female participant in her late 70s who resided in an assisted living community shared,

I rebelled against all that crap [traditional religion] long ago … Now I’m here [assisted living], and all they have is these same [traditional religious teachings and leaders] … I can’t find anywhere here, I can’t find understanding of spirituality that is broader, not exclusive to Christianity … I wondered about the [spiritual care counselor] … but then found it was pleasant to talk with someone who is like-minded … to be heard, to have unity [about open spiritual perspectives].

A male participant reflecting on the end-of-life interfaith spiritual care experiences of his sibling remarked that his sibling was most likely not be open to spiritual care experiences, if reflecting mainstream religious approaches, but that because his sibling “was into energy healing and that was part of what they did and [the sibling] was again able to find a way to meet needs although they were perhaps outside of the standard.”

Thus, as evident in this theme, participants often did not know about the nature of what a “spiritual care” program entailed and how spirituality was defined. However, most seemed relieved that the definitions of spirituality were broadly connected to meaning, practices, and beliefs that reflected an open and nontraditional approach to spirituality.

Distinct Aspects of Interfaith Spiritual Care

One of the themes found within data focused on aspects of the interfaith spiritual care services that were distinct from other end-of-life services, including medical, counseling, social work, or traditional chaplaincy. Although many participants described that the main aspect of their spiritual care was “talking,” they also discussed (without prompting) how their spiritual care processes were different from counseling or “psychology” they experienced in other settings and with other providers of care.

For example, a female participant in her 40s who was facing terminal illness shared that in counseling and psychological services she received prior or at the time of the study interview, she perceived the focus on spirituality as a “coping mechanism” at best and as a “defense mechanism” at worst. She also indicated that although she appreciated the social work services she received, they mainly “navigate systems, give support with logistics … helped to be on top of it … not be overwhelmed by all that needed to be done, decided.” She further stated that it was vital to her that her spiritual care service was guided by a “spiritual perspective on illness, on dying.” She further stated that it was very important to her to explore “spiritual perspectives on anger, on feelings” related to her diagnosis and treatment, to have her thoughts and feelings be “reflected back from a spiritual perspective,” and “to practice meditation, to pray, to forgive … to have gratitude … even in the midst of diagnosis and treatment.” She emphasized throughout her interview that other counseling-type services she received were not able to offer her a profoundly spiritual focus on her experience she sought.

A female participant in her late 90s similarly emphasized the distinct aspects of focusing on spirituality as part of her end-of-life experience:

It gives me more courage. Courage to be in the near death. To be at the end. I know I have this … scared little girl inside. Harsh critic, you know. Still there. I read about it (points toward her books). Way to be free. To understand. Spirituality … it brings precious things that I’m scared to talk about because others, others here, family, they might think it’s childish … But spirituality, spirituality is in everything. Body is in the mind. And mind in the body. Spirit. It’s alive! We are alive. People often live like they are dead. Like their bodies are dead. Go through, work, live, even have sex, and are like dead … If we love the body, care, the soul, mind can be alive. Alive. Because spirituality.

A male participant in his 60s who participated in spiritual care as part of end-of-life services for his dying spouse stated that he found that many professionals they encountered in palliative care were often uninterested and insensitive to spiritual needs he saw his spouse raise during her experiences of dying. During the interview, he indicated that in their experience, not only medical providers (doctors and nurses) but also social workers and counselors appeared “jaded” by dealing with death and dying. He indicated that both he and his spouse often experienced individuals as helpful in terms of medical needs but limited in their ability to deal with what he perceived were “the largest, the most important questions about death.” Thus, he discussed that interfaith spiritual care meetings, both for his spouse and himself, which openly engaged them in asking questions about life after death, meaning of life, and spiritual aspects of dying, were the “most significant, needed, and important” services they received.

Another bereaved male participant who witnessed spiritual care for his sibling also remarked that interfaith spiritual care services were significant for the larger circle of the family of the dying individual. He stated that

The thing that I personally benefited most from is that after [my sibling] died, [spiritual care counselor] was available to help with family and friends. Not living in [same city as the sibling], I didn’t know anybody … so personally the thing I benefited from was having somebody [spiritual care counselor] to help me do the [funeral] service. And I think that was real, everybody in the family who came benefited from that hospice [spiritual] care, although you have to ask [the spiritual care counselor] or the hospice people if they actually were, if the hospice was part of that, or if [the spiritual care counselor] just did it on her own, but I was really grateful for it.

A male participant in his 40s, dealing with debilitating long-term illness that brought him close to dying several times, shared that in his life he faced many challenging life experiences, including incarceration, relational difficulties, and addictions. He shared, however, that it was through interfaith spiritual care services that he received as part of the hospice care that he was able to face his existential questions about himself and life. He shared,

I don’t know but with [the spiritual care counselor] I’ve just accepted God and just praying and everything and being thankful for everything seems to make everything alright. For me it does, you know. I’m pretty happy and pretty satisfied with what I’m doing right now. Even though I’m stuck in this bed … I’ve been given my last rights three times, and to not check out [from life and others] and have a chance to come back here is really … so I’m gonna do all I can and get all I can out of it [life]. [The spiritual care counselor] and them [spiritual care companions] have been a big part of me coming to this point in my life. To make myself understand where I needed to be.

Among other distinct aspects of interfaith spiritual care services, mentioned by participants, included help with learning to meditate, prayer, energetic healing (e.g., Reiki), or discussing such questions as what occurs after death, development of personal spiritual practices and goals, conducting spiritual life reviews, planning for spiritual aspects of funeral services and life ceremonies, dealing with existential guilt, creating meaning within their suffering, questioning past religious beliefs and practices, and exploring new spiritual perspectives related to living and dying.

Lastly, several participants indicated that although they knew they needed medical care and appreciated help with logistical needs related to planning end of life, they also stated that if they had a choice, they would replace all other end-of-life care, including medical one, with interfaith spiritual care assistance. In words of a female participant, “at the end of it all, we are just spiritual beings returning back to spiritual.”

Therefore, this theme emphasizes the distinct and profound impact of interfaith spiritual care practices as experienced by participants. Although all of the participants received multiple services related to their experiences with death and dying, many highlighted that interfaith spiritual care services fulfilled a specific need in their lives.

Unmet Spiritual Care Needs

As part of the interviews, many participants reflected on the limitations of spiritual care they received. Among the most common sentiment among participants was that they wanted greater access to interfaith spiritual care program and services. As one of the participants emphatically stated, “More spiritual care counseling [should be] offered!” Most participants indicated that they perceived their spiritual care counselors as available and accessible to them but were aware that interfaith spiritual care services, as formally offered through the local social/volunteer model hospice, were limited in their scope.

Two participants suggested a creation of an interfaith spiritual care-focused group. A participant who faced terminal illness stated that “people often do this all alone. But we all need a place to talk about the spiritual, the existential. The group would be helpful.” Other participants indicated that they wished that more individuals would be trained in providing interfaith spiritual care and that they could be more engaged in settings where people who face end-of-life issues, especially assisted living and long-term care facilities. Lastly, participants expressed a wish that greater visibility and clarity about the broad parameters of interfaith spiritual care services could help more people seek out the services.

Another suggestion focused on provision of interfaith spiritual care to families and friends of people who are facing death. Although the participants who were bereaved shared that they received some direct help from their dying relative’s spiritual care counselor, one of them suggested that the interfaith spiritual care program may need to focus much more directly on the needs of the entire family. He stated, “As a general point I am just making about family nonspecifically, but specifically in [my sibling’s] case, if they could have thought through the system [to offer spiritual care] and how everybody is impacted by the illness [spiritually].”

During several interviews, participants indicated that they wondered how much of the benefit they received was related to their specific spiritual care counselor or companion and how much it was related to spiritual care program itself. Participants described warm, positive connections with their spiritual care counselors. They also at times openly wondered if the counselors ability to be deeply respectful of multiple spiritual traditions, to have broad knowledge of diverse spiritual practice, to engage in mind–body spiritually focused treatments, and to be available for multiple spiritual needs (e.g., conducting celebration of life services, teaching meditation practices, facilitating creation of personal dying rituals) was only descriptive of the counselor as a specific person rather than a representative of an institutional service.

Discussion

The results of the study provide a rich contextual description of how individuals make meaning of the interfaith spiritual care services related to their end-of-life experiences. The study supports many prior claims that attention to spiritual needs has a direct significant impact on all aspects of palliative and bereavement care (Block, 2001; Chibnall et al., 2002; McClain et al., 2003; Walsh et al., 2007). In addition, the study affirms that in people’s lived experience of interfaith spiritual care services, spirituality is a distinct but highly subjective aspect of living and dying (Egan et al., 2011). In fact, in this study, most participants long for a broad and inclusive perspective on spirituality, one that is not directly related to established religious beliefs and practices. Moreover, this study highlights that despite a general stereotypical perception that all individuals who are older and are facing end of life embrace traditional religious practices, many older people have had lifelong interests in diverse and nontraditional spiritual paths such as those related to Eastern spiritual approaches. Our study showed that they perceive very limited access to interfaith spiritual care that is open to divergent perspectives within their facilities or hospital settings. Similarly, Balboni et al. (2007) found that in their study nearly half of the terminally ill individuals, who indicated that they valued spirituality, shared that their spiritual needs were not met by any established religious community or service.

This study also showed that despite confusion regarding the definitions and parameters of the interfaith spiritual care service, especially initially, individuals describe multiple distinct aspects of what interfaith spiritual care offered them. In addition, individuals seem to have a clear differentiation between what they perceived as counseling, psychological, or social work care as well as medical care versus spiritual care. This finding reflects the guidelines and parameters of interfaith spiritual care discussed in the consensus meetings by palliative care specialists both in the United States and Europe (Puchalski et al., 2009; Van de Geer & Wulp, 2011).

Lastly, the study offers a description of an interfaith spiritual care service model offered by a social/volunteer model hospice center within a community in contrast to spiritual care services within medical hospice or hospital palliative care frameworks. Daly and Matzel (2013) discussed the need for transdisciplinary and multisetting approaches to interfaith spiritual care for end-of-life services, and this study provides a view into the experiences of individuals who experienced such services.

The limitations of this study are related to the nature of the phenomenon we examined as well as possibilities for future research. First, as researchers, we faced a challenge in accessing participants. On one hand, many individuals expressed strong interest in participating and were open to discussing their experiences initially. It was, however, very difficult to find times and location that worked for qualitative interview-based research. In many cases, participants received significant medical interventions or were of such an advanced age that medical meetings or times when they needed rest limited their available times. In addition, researchers were highly aware of interviewing people with compromised immune systems and thus missed many weeks of times when participants may have been available when we were dealing with common colds or infections. Lastly, several of the participants indicated they wished to participate but died prior to their participation.

As scholars conducting qualitative research in the community rather than a single institution (e.g., medical hospice, hospital), we recognize that such challenges reflect the nature of research as well as the nature of the study. Although we may have wished to include interviews with more participants, we perceived that the data we obtained were saturated and provided a comprehensive insight into the meaning and experiences of people who received interfaith spiritual care services. Future studies could continue to explore the longitudinal narrative experiences of interfaith spiritual care—from early stages to final stages of receiving services. However, we also understand that the “timing” of such studies is nearly impossible considering the often unpredictable and intense experience of facing death and dying.

Nine of the 10 participants in our study were White American individuals. Undoubtedly, spiritual care needs are different for individuals, whose cultural and ethnic backgrounds have different values regarding religion and spirituality. Future studies could seek to examine interfaith spiritual care services with members of diverse ethnic communities in the United States.

In addition, this study primarily focused on interfaith spiritual care experiences of people who were in midlife through advanced age. This choice was based on the population served through the spiritual care program as part of the hospice organization that hosted and funded the research with financial support from the Archstone Foundation. However, further study could not only examine distinct spiritual care needs of children and adolescents but also explore unique spiritual care needs that may arise based on individuals’ age. Lastly, the interviews focused on experiences of those who benefited from and appreciated interfaith spiritual care services. It is as important to seek out perspectives of those who either do not seek such services or receive but do not benefit from them.

Conclusion

This study echoes the resounding recommendation by providers of care, clinicians, and scholars to actively include attention to the spiritual needs of people who are facing end of life. In addition, the study affirms the call for specific, institutionalized practices such as the formal interfaith spiritual care program described in the study. For many people, death and dying carries profoundly spiritual implications, and as the nearly centenary participant stated, for many individuals, “spirituality is everything.” Thus, we hope that this study sheds light on ways that people perceive receiving spiritually focused care as well as offers highlights into how this study further contributes to the growing body of knowledge regarding end-of-life needs and experiences.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded, in part, by the Archstone Foundation.

Author Biographies

Anthony Bonavita, MDiv, received his degree from Naropa University and worked as a hospice and hospital chaplain for over ten years in both Denver, CO and Santa Barbara, CA. Currently he is completing doctorate in clinical psychology at Pacifica Graduate Institute and working in private practice as a psychological assistant. His research interests include the intersection of Buddhist practice and depth psychological perspectives.

Oksana Yakushko is a professor and chair of clinical psychology department at Pacifica Graduate Institute, Carpinteria, CA. Her scholarly work has included focus on diversity, spirituality, and depth psychological perspectives (Jungian, psychoanalytic, feminist, post-colonial). Her approach to scholarly inquiry emphasizes human sciences and qualitative perspectives that focus on human meaning, social contexts, relational dynamics, implicit values, and existential concerns.

Melissa L. Morgan Consoli is an associate professor in the Counseling, Clinical and School Psychology Department at the University of California, Santa Barbara. Her research interests lie in the areas of wellness and healing, spirituality, social justice and immigration, with an emphasis on Latino/a populations. She studies these issues cross-culturally, including international, national and immigrant populations. Dr. Morgan Consoli has published as well as given multiple presentations and trainings . She teaches academic courses on multicultural issues, theories, gender issues, ethnic and racial issues in counseling, and prevention.

Steve Jacobsen, MDiv, EdD, was a pastor for 27 years during which he published a book and 11 articles on the relationship of spirituality to a variety of topics, including secular work, leadership, and digital technology. In 2000 he was a visiting scholar the Department of Religious Studies at UCSB. He served as executive director of Hospice of Santa Barbara from 2008–2013, then become director at La Casa de Maria Retreat and Conference Center which serves 200 nonprofit and spiritual groups annually.

Rev. Laura L. Mancuso, MS, CRC, is an interfaith minister who serves the Santa Barbara community as an end-of-life chaplain, spiritual advisor, and grief counselor. Rev. Mancuso previously worked as a spiritual care counselor at Hospice of Santa Barbara, and is now the spiritual life program leader at Vista del Monte Retirement Community and an advance care planning facilitator with The Alliance for Living & Dying Well of Santa Barbara and Sansum Clinic. She strives to honors all faith traditions, as well as the spiritual paths and life philosophies of those who do not adhere to any religion.

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