Promise,Provision,and Potential: A Hopeful Trajectory for Spiritual Care in Long-Term Care

Abstract

This Canadian study aimed to better understand the provision of spiritual care in long-term care homes, its purpose/importance, the role of a spiritual care provider (SCP)/chaplain, effective practices, and challenges. Online survey responses revealed the need for spiritual care and the robust role of SCPs. Recommendations are made for more consistent employ and integration of SCPs, supported by sector-specific training and a system to connect LTC homes with skilled SCPs.

Enter any long-term care (LTC) home that is striving to meet its mandate of providing a home for individuals in need of LTC and you will soon realize it is an extraordinary place, filled with people of heart and a sense of calling to difficult and meaningful work. Caregivers want to do it well. And then there are the residents who call this place “home,” people living with physical and cognitive challenges at the close of lives that have been and are rich, full, disappointing … and their families and friends, coping with change, navigating relationship, anticipating loss … Who supports the spirit of such a place?

The pandemic of 2020–2022 has drawn attention to LTC and to those who live and work there. Much attention and effort has necessarily gone into infection control, protecting the health and life of residents (Fisman et al., 2020). Physical care is, unquestionably, important. But there is more. Isolation, loneliness, and boredom, rooted in lack of meaning and connection, threaten the spirits of older adults at the best of times, and more so during a pandemic when contact with support systems and fellow residents is limited. As the crisis wanes and energy shifts to improving LTC into the future, questions of quality of life, and what is essential to maintain meaning in life, have room to arise again.

Literature Review

Spirituality and Aging

In later life, addressing one's spiritual needs for love, hope, peace, and joy, counters risks of loneliness, hopelessness, distress, and despair, while sustaining vitality and meaning (Kuepfer, 2018, 2019). In addition to the importance of addressing spiritual needs, gerontologists, psychologists, and aging theorists write about spiritual development in later life, spiritual tasks, and potential in aging (Erikson & Erickson, 1997; MacKinlay, 2021; Schachter-Shalomi & Miller, 2008). Literature in the field of dementia and spirituality provides hope for ongoing spiritual connectedness, affirming identity, dignity, and worth, and emphasizes the importance of spiritual care providers (SCPs) and faith communities in the lives of persons living with dementia (Swinton, 2012; McFadden & McFadden, 2011).

Health and Well-Being

Spiritual and religious engagement have been shown to contribute to health and well-being in older adults (Koenig, 2012). While the health benefits of a spiritual life have been long-established in North American literature, research is now expanding around the world. Studies have shown spiritual care decreased stress levels and improved mental health among those living in a nursing home in Poland (Heidari et al., 2019) and eased existential loneliness in Sweden (Sjoberg et al., 2019). In Brazil, LTC residents were found to use religious and spiritual coping strategies to deal with their chronic health conditions (Vitorino et al., 2016) and in Iran, spirituality has been found to positively influence health behaviors in older adults through satisfaction with life (Zandworna-Cieslak, 2020). Desai and McFadden (2013) are among those who contend that responding to spiritual need can help reduce antipsychotic use in LTC.

Palliative Care

For most residents, LTC is their final home. Addressing spiritual concerns helps to shift the focus from fighting disease to enjoying the time that remains in meaningful ways. When residents and family are comfortable spiritually, fear of death is decreased, and practices like inappropriate use of feeding tubes, and felt need to transfer to hospital at end of life is reduced (Morley & Sanford, 2014).

In end-of-life care, “emotional and spiritual support” is an important factor (Threapolton et al., 2017). Family perceptions of good care and a good, peaceful death are heightened by spiritual care (Daaeleman et al., 2008; DeRoo et al., 2014; Kinley et al., 2018). A recent Canadian study found that in hoping for a peaceful death for their loved one, families perceived attention to spiritual issues was missing (Lee et al., 2020). Family Care Conferences (FCCs) held to enhance communication around end of life were found in an Ontario study (Durepos et al., 2018), to mainly focus on physical care, though spiritual care was discussed in 67% of the FCCs examined. The Canadian Hospice Palliative Care Association would encourage further focus on spiritual care and on the domain of loss/bereavement. Spiritual care practitioners have developed robust guidelines for palliative care (Cooper et al., 2013), though further research is needed into the psychosocial and spiritual domains of palliative dementia care (Bolt et al., 2019). A recent scoping review has found the gaps in research at the intersections of dementia, palliative care, and spirituality (Palmer et al., 2020).

Quality of Life

While concepts of life quality and spirituality are not causally related (McDonald, 2016), spiritual support can help older adults to cope and make meaning when life quality is diminishing. A recent study in Spain found that in addition to the Dementia Quality of Life scale, the FACIT-Sp Spiritual Well-Being Scale was the best instrument to evaluate aspects that influence quality of life in geriatric institutions (Santana-Berlanga et al., 2020). A study of the effects of spiritual care in two continuum of care communities suggests that spiritual support (both religious and nonreligious) is a vital factor in well-being and quality of life. LTC residents themselves assert that “spiritual connection and closeness” is a crucial aspect promoting meaning and purpose in life (Drageset et al., 2017).

Gaps in the Research

Despite there being literature about the importance of spirituality in later life, there is a dearth of research on the actual provision of spiritual care in LTC. A review of literature to discern what is known about spirituality in LTC found different understandings and expectations among nurses, caregivers and older adults, and concluded that the practical aspects of spiritual needs assessment and spiritual care provision requires further investigation in order to improve service delivery (Gautam et al., 2019).

A Definition of Spiritual Care

Spiritual care is care that recognizes and responds to the needs of the human spirit (including the need for connection, emotional support, respect for values and beliefs, and the search for meaning in life/suffering). Spiritual care facilitates religious care from one's own faith leader/community, meeting needs for relationship and continued participation in religious practices/tradition. Spiritual care includes, but is not confined to, religious care.

The Study

In LTC, what is known about spiritual care is best described by those who provide it, as they get to know residents, discern their needs, and try to meet them. It is important, in these changing times, to learn what is currently being done to provide spiritual care, to discern what works to meet spiritual needs, and to plan for adequate, appropriate, and accessible spiritual care into the future. The aim of this study was to better understand how spiritual care is being provided in LTC homes in southern Ontario, Canada.

Research Question

What is the current state of spiritual care in LTC in three areas (Home and Community Care Support Services regions) in southern Ontario? (and what is the trajectory toward effective, inclusive, and accessible spiritual care into the future?)

Who is providing it? What skills and training do they bring?

What is being provided? (What does spiritual care currently look like?)

What are some best practices that inspire optimum spiritual care provision?

What are the challenges and opportunities?

Another article (Kuepfer et al., 2022) detailed findings about who is providing spiritual care. This article will focus on what is being provided, and the challenges, potential, and opportunities for spiritual care going forward.

Study Method

An exploratory quantitative survey methodology (Babbie, 1989; Del Baso and Lewis, 1997; Nelson and Allred, 2005) was used. Ethics clearance was received from the Office of Research Ethics at the University of Waterloo, #40919. The research consisted of two stages. In the first stage we learned, through phone calls to each long-term-care home, which homes employ a chaplain/SCP, and obtained an email address for the chaplain or for the person responsible for spiritual care/programming if they did not employ a chaplain. In stage 2, an on-line survey (Babbie, 1989; Del Baso and Lewis, 1997; Nelson and Allred, 2005) was developed and sent directly to the chaplain/SCP or contact person identified above. A total of 59 surveys were completed.

The survey sent to SCPs/chaplains asked questions about the person responding to the survey and details about the spiritual care position they fill. Results from this part of the survey are reported in another article (Kuepfer et al., 2022). The remainder of the survey asked questions about the Spiritual Care program provided (what is offered formally/informally, division of time, adequacy).

The survey concluded with open-ended questions about:

the role of a SCP/chaplain

the purpose or importance of spiritual care in LTC

evidence/outcomes of good spiritual care

effective programs, resources, or practices

challenges or obstacles in providing spiritual care in LTC.

The survey sent to those responsible for spiritual care programming in homes without a chaplain asked similar questions, with some wording slightly altered to acknowledge the difference in their role, and a few additional questions (e.g., What education, training, or experience do you find helpful in your role (of providing spiritual care)? What is your comfort level with providing spiritual care programming?).

Most participants answered these open-ended questions, many in considerable detail. Data was extracted, calculations completed and themes were identified from responses to the open-ended questions. The investigators utilized thematic analysis which is often used in qualitative research to make sense of the participants responses (Vaismoradi et al., 2013).

Findings

Responses were put into two groups: Group A included homes that employed a SCP either part or full time, while Group B included homes that did not employ a SCP but relied on volunteers and community clergy. Responses from these two groups shared many similar themes and they also had some differences.

What Does Spiritual Care Currently Look Like?

It should be noted at the outset that these data were gathered before the pandemic began, which curtailed programming, group gatherings, and support offered by community volunteers.

Religion Specific or Multi-Faith Programming

In the homes without a SCP that chose to complete the survey, a weekly or monthly church service is usually offered, dependent on availability of community volunteers, coordinated by recreation staff. Hymn sings may happen, volunteers may visit, and clergy may be called in for specific requests.

In homes with a SCP, a variety of spiritual activities were reported by chaplains in this study to be on their homes’ calendars. Weekly activity reported in homes with SCPs included:

worship services (often several throughout the home, including worship with those living with dementia),

music (hymn sings or other inspirational music),

prayer,

literature-based gatherings (Bible study, book club, spiritual reading circle),

sharing (Java music peer support group, reminiscence, chaplain chats, discussion group),

arts-based opportunities (expressive spiritual arts, inspirational movies),

multi-faith observances (Ismaili daily prayer, Shabbat service),

and individual visits (prayer, scripture reading, sacraments, companionship).

Monthly activity included:

• special worship services, including sacraments led by various faith groups throughout the year,

• multi-faith and cultural gatherings,

• resident engagement through mission teams, “helping hands” and a “Hope” club,

• musical engagement through choirs or a drum circle,

• and support/social gatherings (couple's socials, grief support tea, death cafes).

Throughout the year, memorial services are held and spiritual festivals are observed that are meaningful to the current residents.

Beyond the “Calendar”

Data gathered from SCPs described the spiritual care they provide that is “not on the calendar” as presence. This pastoral presence is provided through the following:

1:1 visits and small group conversations with residents to provide emotional and spiritual support

family care,

end of life accompaniment and education for care-givers

care/counselling for staff/team members,

crisis intervention

facilitating and hosting community volunteers

preparing resources and student supervision

Many homes with SCPs have spiritual practices they observe, including room/neighborhood blessings, a blessing to start the day, and rituals for death/bereavement, including an honor guard (known by various names) to say farewell, symbols to acknowledge the absence of a resident, opportunities to share memories, etc. Grief support for staff, as well as “blessings of the hands that serve” rituals help sustain team members.

Respondents were clear that the spiritual support they provide is not restricted by their own particular faith, but seeks to support the perspective of the residents, staff, and families they serve. SCPs learn as they go how to provide for the spiritual needs of each resident, asking questions, doing research, and connecting with community resources to ensure that needs are met.

Use of Time

SCPs put emphasis on different areas of their work. For example, preparation for leading programs for one SCP takes only 2% of her time, while for others it was as high as 75%. And one to one relational care ranges from 5% of one chaplain's time to 40% for others. 60% of SCPs believe the amount of time allocated to spiritual care is not adequate to meet the needs in their home. Several noted that documenting is important but takes time away from front line support.

SCPs asserted that what is needed most is more one on one time for residents, to listen, to support the residents’ spiritual resources, and time to gather small groups of four to five residents for meaningful spiritual engagement. More time to connect with families, and to support front-line workers is coveted, citing a growing need for counselling, and to lubricate relationships between families, residents, management, and team members with greater understanding. Conflict navigation skills were frequently mentioned. Some mentioned the home being short-staffed in general, which takes away from overall spiritual wellbeing, and necessitates the SCP helping more with care (support with “behaviors” [disruptive personal expressions], mealtime help, etc.). In the words of one respondent (SCP49), “[More time dedicated to spiritual care would mean more] end of life provision of care for residents and families, more spiritual programs and initiatives addressing loneliness, depression, and mental health needs, more support of staff, more involvement overall in the home would provide more awareness of presence, speaking more with families, documenting more of what I do.”

Challenges

Time

The #1 challenge faced by spiritual care is common with other aspects of LTC—time. Many are feeling the stress of not meeting needs adequately, especially for one on one care. Time is also needed to be intentional about providing appropriate and accessible spiritual care. This need for more time is exacerbated by the need for documentation of both spiritual need and the significance and outcomes of spiritual care. ¹ “[Documenting] takes up much of my time but is important as it informs the rest of the health care team and shows that spiritual care is as important as other forms of care.” (SCP48)

Lack of Understanding

“Organizations seem to think that spiritual care is just religious care or prayers only; easy for anyone or volunteers to do.” (SCP41) SCPs feel the tension – they perceive the need for spiritual support is not well understood by the administration or staff, in a setting that prioritizes physical care, and they bring their skills into that setting. Particularly with residents/families who have little interest in traditional religion, SCPs negotiate a balance, being careful not to be “overly spiritual,” while making space for how important spiritual resources tend to become in later life. Spiritual care is not nearly as simple as it is important. “We have a culture of religious care, that does not always encompass the spiritual care needs of the residents,” one respondent (SCP35) explained. It is an on-going challenge for spiritual care to be understood.

Communication and Collaboration

Those who work in LTC are a team. SCPs, especially those who have very limited hours, or feel misunderstood and/or excluded from interdisciplinary meetings, find that communication and collaboration as part of the team is sometimes lacking. It is a challenge for spiritual care to find its way into holistic care, to be understood, valued, and included. Availability of space, volunteers, and other resources is also a challenge for some.

In Homes Without a Chaplain?

Those responsible for spiritual care and programming in homes without a chaplain face multiple challenges. While they generally feel their home respects their residents beliefs and rights, and “honour them the best way we know how,” one respondent (R4) commented “If [spiritual care] was more valued, they wouldn't have let go of their paid Spiritual Director so many years ago and just lumped it in, as an ‘after-thought’, with the general recreation coordinator duties.” (R16)

Recreation staff, to whom the responsibility generally falls, are “not educated enough in this area.” (R4) While trying to “do the best we can” (R4), they express difficulty knowing what the residents need and how to provide it, while feeling they lack experience and training to help residents cope. They rely on community churches, with whom connections are sometimes tenuous, to provide services, and are finding it increasingly difficult to create these partnerships. These data were gathered before homes experienced the loss of all volunteers due to pandemic restrictions. Challenges in providing spiritual care without a chaplain have multiplied.

The Potential in Spiritual Care

The Role of a SCP

When asked to describe the role of a SCP, survey respondents were powerfully articulate. Oft-recurring words included: compassion, listening, presence, trust, comfort, acceptance/love, hope, peace, faith-finding, meaning, time to understand, encouragement, focus, resources, and help/support. In one chaplain's words, “[Later life] can engender serious spiritual questions that contribute to anxiety, depression, hopelessness and despair. Professional chaplains bring time-tested spiritual resources that help [residents] focus on transcendent meaning, purpose, and value.” (SCP6)

A SCP can help residents to express their doubts, fears, and concerns, and support them through transition. Several noted that in the past this role was seen as a religious caregiver. Over time the role is being recognized as providing spiritual care to all, which may include religious care and programming but not necessarily. Some described the role as being an integral part of a larger team, providing much needed support, encouragement, and guidance as needed to residents, family, and staff.

The Purpose of Spiritual Care in Long-Term Care

Why include spiritual care? What is it all about? Why is it important? The following themes emerged from the responses of SCPs:

Holistic care includes the spiritual dimension

Spiritual care is about caring for and nurturing the spirit/soul of individuals

Spiritual care facilitates the “spiritual work” to be done in late life (older adults are often asking tough questions about life/death, dealing with guilt/fear/loss, life-review, healing, finding meaning and peace) including the spiritual work of dying

Spiritual care also provides support for team members and families, especially with end-of-life, and grief

Spiritual care contributes to a healthy organizational culture, for team members as well as residents and families, by fostering respect for diversity of beliefs and practices

Spiritual care offers a sense of community/belonging and continuity/dignity

Spiritual care is about presence, acknowledgement, and affirmation—being there for (in contrast to doing something for, or expecting something of) residents

Is Spiritual Care Valued in Long-Term Care?

Over half of chaplain respondents indicated that spiritual care is “definitely valued” in the home where they work and 80% said it is “moderately to definitely valued.” In contrast, 57% of those responding from homes that do not employ a chaplain said spiritual care is “moderately to definitely valued,” while 43% said “slightly to somewhat.” No one who took time to complete this survey responded that spiritual care is not at all valued by their home.

Positive indicators of the valuing of spiritual care included: employment of a chaplain, feedback from residents, families, and staff who show appreciation and request care, and inclusion of SCPs in interdisciplinary team huddles, meetings, and committees, where their input is valued. Some, in not-for-profit homes especially, also noted the importance of spiritual care to the identity and values of the home.

Homes that do not employ a chaplain show that they value spiritual care by: respecting and honoring residents’ beliefs, ensuring they have spiritual programs, recruitment of spiritual volunteers, and collaborating with community partners.

Conversely, reductions in/inadequate staff time, negative comments, lack of inclusion in meetings, being misunderstood/inaccurate perceptions, being confined to a “subdivision” of recreation programming, and lack of time for person-centered care were seen as negative indicators of the value of spiritual care.

Discussion

Spiritual Care—Promise and Provision

Currently, the Long-term Care Homes Act's requirement to “provide worship services, resources and non-denominational spiritual counselling on a regular basis for every resident who desires them” (Ontario Long-term Care Homes Act, 2007, Regulation 79/10, section 85) manifests in a variety of forms.

Homes without a chaplain (51% of the homes in this study) are dependent on community volunteer resources. The inter-disciplinary team members in these homes who responded to the invitation to participate in this research about spiritual care (n = 13) were those who cared deeply about meeting the spiritual needs of their residents. They “try their best,” (SCP6, R4) but these homes, and the many that chose not to respond with details about their spiritual care provision, struggle to meet, or even be appropriately aware of, the spiritual needs of residents, families, and team members.

These 13 homes, before the pandemic, provided a single weekly, or monthly, worship service, led by local churches, and often a hymn sing. New community volunteers were difficult to find. With increasing care needs and the prevalence of dementia in today's LTC, volunteers need to be comfortable and competent, not only in providing appropriate and effective spiritual care, but also providing it in this context. Without someone specifically responsible and knowledgeable in spiritual care on staff, to support volunteers learning these specialized skills, it is difficult to recruit, adequately equip and retain spiritual care volunteers. With these gradual changes, and now the pandemic, there is a gaping hole in spiritual care provision in homes that were dependent on community resources, highlighting the need for a more sustainable system.

In homes with a SCP, spiritual care is more reliably available, comprehensive, relational, and person-centered. Programming is designed to meet the needs of the residents, rather than simply receiving what community volunteers can offer. Worship can happen throughout the home and accommodate those living with dementia. Creative programming using music, literature, and the arts, and opportunity to gather for discussion and/or prayer, all contributes to spiritual care. A SCP is also able to organize observances for residents of their own particular faith tradition, and individual visits to enable continued religious practice, and to work with students and train volunteers.

Spiritual care provision currently falls into the “program and support services” funding envelope for a LTC home. Consequently, what qualifies for funding is programming that is documented on the activity calendar, and individual care needs documented in residents’ care plans. Good spiritual care, however, does not always fit neatly into these institutional categories.

Spiritual Care—Potential

While spiritual programming is significant and serves a definite purpose, and residents must be supported in their individual spiritual practice, there is much more that a SCP brings to the context of LTC. A respondent aptly summarized, the “purpose of spiritual care is to provide comfort, assurance, inspiration for living a joyful and meaningful life and dealing successfully with challenges, hurts and disappointments.” (SCP8) SCPs facilitate the spiritual work of late life: life review, forgiveness, healing, gratitude, finding peace with life and death. They provide support through transition, conflict, loss, grief, and remind individuals of their unconditional value.

This support is not just for the resident but for the whole organization. LTC is a stressful context. SCPs contribute to a healthy organizational culture as they care for staff and families and empower them to recognize the meaning and value of their roles.

Spiritual care helps to create homes of belonging and respect where, in the midst of physical and cognitive change, individuals are known deeply, their presence is honored and their value upheld. This is the aspiration of many in the LTC sector who care deeply for residents and are working diligently toward culture change. But while it is possible for recreation staff, personal support workers and other team members to increase their competency in general spiritual care through training programs that are emerging, what is lacking is the presence and skill set of spiritual care specialists to provide specialized support to the spirit of the community and the individuals within it.

A sector that truly values spiritual care would ensure that someone with skills and training in spiritual care is employed by every home, that this person be given time and resources to connect with residents, families, and team members, and that they be included in the circle of care for all residents and invited to nurture the spiritual health of the community.

Imagine if each LTC home across Ontario could make this attestation:

We are here to care for body, mind, and spirit

Through spiritual care, we:

provide for the spirit of those who make this place their home

nurture a sense of community/belonging and continuity/dignity

are present for our residents, consistently offering acknowledgement, listening attention, and affirmation

support residents in the spiritual work of late life, including the spiritual work of dying

provide support for families, especially with end-of-life, and grief

cultivate a healthy and meaningful organizational culture, for team members as well as residents and families

Meeting the Challenges

Funding and Integration

Inadequate time, lack of understanding of the role and scope of practice, and suboptimal interdisciplinary communication and collaboration, are common challenges experienced by SCPs in LTC. In short, spiritual care is not adequately integrated in the LTC sector, nor adequately funded.

In homes without a chaplain, spiritual care provision is an unreasonable expectation for those without training or expertise. Those responsible for spiritual care are unequipped and reliant on community volunteers. While they want to provide good spiritual care, they do not have the resources and skill set to do so.

Within the Ontario healthcare system, the need for spiritual care is recognized in hospitals and palliative care (Cooper et al., 2013; Schmidt, 2013), and its adequate provision is supported through the employment of specialists in spiritual care. A study on the prevalence of SCPs in Ontario hospitals found that 70% of all hospitals ensured access to professional spiritual care. When the small rural hospitals are removed from the data set, the percentage climbs to 88–100% of Ontario hospitals provide professional spiritual care (Schmidt, 2013). It is curious that LTC, where people may live for some time with challenges and loss, and most likely will die, does not guarantee appropriate spiritual care as well. Acknowledging its role in undergirding the well-being of not only residents, but the whole organization, spiritual care deserves more than a fraction of “programming” funding. In order to achieve its potential benefits, spiritual care should have designated funding in each home, for enhanced support services and also a voice in leadership/management.

Availability of Competent SCPs

In order to meet the need for quality spiritual care in LTC, SCPs who are well trained to fill the role must be available to those looking to hire. While there is considerable interest in the field of spiritual care work in LTC, there is currently no comprehensive and accessible program to acquire the necessary skill set, and no consistent process for credentialing that the sector can have confidence in.

We have learned from those currently doing the work that competence comes from various sources of learning and experience (that are not currently integrated in any one place):

firm grounding in one's own spiritual tradition and practice

substantial theological, world religion and cultural sensitivity knowledge

supervised practice and reflection, such as is experienced in a Clinical Pastoral Education Unit

understanding of aging, and particularly dementia

cultural sensitivity training, multi-faith/ecumenical participation and networking

understanding of palliative care, end-of-life issues, advanced care planning, etc.

counselling skills: conflict navigation, family systems, grief

leadership skills for large and small groups, and rituals

healthcare documentation, multi-disciplinary team work

A national organization such as the Canadian Association for Spiritual Care could create room for certification that recognizes the unique training needs required for spiritual care in LTC. A process of certification could provide a professional home and place of accountability, as well as a source of qualified SCPs for LTC operators.

Conclusion and Recommendations

SCPs offer a valuable skill set to life in LTC. People needing LTC should be able to expect care for their spirits. We need to discern standards, ensure availability of appropriate training, and adjust the funding model to embrace spiritual as well as physical and psychosocial care.

Initial Recommendations From Research

• There is a need for consistent presence and integration of spiritual care specialists in every LTC home to fill the complex and robust role of spiritual care provision.

• There is a need for spiritual care training that recognizes the unique context of LTC, including opportunity to gain competency in aging and end-of-life issues, dementia, multi-faith care, family counselling, and healthcare team skills. Comprehensive, creative, and accessible training should be designed specifically for SCPs intending to work in LTC.

• A central organization is needed to direct potential SCPs toward training, provide certification, and help LTC organizations to find qualified SCPs to meet their needs.

In LTC we are caring not only for bodies, or even minds, but for spirits, as they live the grand finale of their lives. This last chapter should be precious time that is honored, not seen as putting in time, waiting for the end. The residents, families, and care team of each home deserve the support of a SCP trained to serve in this context. Spiritual care is not an optional “extra,” but is vital to the health of both individuals and the system.

Now is the time to advocate for appropriate care for mind, body, and SPIRIT in long-term care.