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Overview of spirituality in palliative care

Overview of spirituality in palliative care
Authors:
Christina M Puchalski, MD, MS, FACP, FAAHPM
Betty Ferrell, PhD, MA, FAAN, FPCN
Shirley Otis-Green, MSW, MA, LCSW, ACSW, OSW-C
George Handzo, BCC, CSSBB
Section Editor:
Susan D Block, MD
Deputy Editor:
Jane Givens, MD
Literature review current through: Apr 2021. | This topic last updated: Feb 03, 2020.

INTRODUCTION — Spirituality is a fundamental element of human experience. It encompasses the individual’s search for meaning and purpose in life and the experience of the transcendent [1]. Spirituality also encompasses the connections one makes with others, themselves, nature, and to the sacred realms, inside as well as outside of traditional religion [1]. Viewed in this way, spirituality is an important component of quality of life (QOL) and may be a key factor in how people cope with illness, experience healing, and achieve a sense of coherence [2].

The diagnosis of chronic or life-threatening illness can lead to spiritual struggles for patients. The turmoil may be short for some patients and protracted for others as individuals attempt to make sense of the reality of their diagnosis with what gives them value and meaning in life. The journey may result in growth and transformation for some people, distress and despair for others, and both for many people [3].

Spiritual care is an essential domain of palliative care. This topic will provide an overview of key spiritual issues in palliative care, describe approaches to spiritual assessment in the clinical setting, and propose a way to integrate treatment of spiritual distress into a palliative care treatment or care plan. Specific discussions on the incorporation of palliative care with regard to various religious traditions are beyond the scope of this topic [4]. For more information regarding their role in clinical care, the clinician is advised to seek input from their local and institutionally based chaplaincy services.

A discussion about the influence of spirituality and religiousness on outcomes (ie, health care decision-making, QOL) in palliative care patients is provided separately. (See "Influence of spirituality and religiousness on outcomes in palliative care patients".)

DEFINITIONS — For purposes of this discussion, the following definitions will apply:

Palliative care is an approach that improves the quality of life (QOL) of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment, and treatment of pain and suffering, including psychosocial, spiritual, and existential suffering as well as physical pain. The field of palliative care is broadly defined as applying to patients from the time of diagnosis of a serious or life-threatening illness until death [5]. (See "Benefits, services, and models of subspecialty palliative care", section on 'Definitions'.)

Spirituality can be defined as an individual’s relationship to and experience of transcendence [6] or the individual’s sense of peace, purpose, and interconnectedness, including existential concerns and beliefs about the meaning of life [7]. Because of the need to standardize a definition for spirituality in palliative care, a group of interprofessional experts in palliative and spiritual care produced a consensus definition of spirituality as “the aspect of humanity that refers to the way individuals seek and express meaning and purpose, and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred” [8]. It may include religion and other worldviews but encompasses far more general ways these experiences are expressed, including through the arts, relationships with nature and others, and, for some, through the concept of secular humanism, the latter of which emphasizes reason, scientific inquiry, individual freedom and responsibility, human values, compassion, and the needs for tolerance and cooperation [9].

Religion is a formal structure through which a person expresses spirituality within a community. A religious community is then organized around common beliefs, attitudes, practices, traditions, and relationships [9].

Spiritual care is defined as interventions, individual or communal, that facilitate the ability to express the integration of the body, mind, and spirit to achieve wholeness, health, and a sense of connection to self, others, and/or a higher power [10].

The relationship between spirituality and health has gained attention in the United States and internationally. Spirituality (which includes religious and existential aspects of care) is one of eight specific domains of quality within palliative care, endorsed by the National Consensus Project (NCP) for Quality Palliative Care and numerous national organizations [5]. Illness can be seen as an injury to the wholeness of the human being, affecting the interrelated biologic, psychological, interpersonal, and spiritual dimensions of human experience [11]. Healing is seen as the restoration of these disruptions in both self-functioning and in relationships. It also asserts that the goal of any treatment must address the totality of the patient, including spiritual wellbeing [12].

As patients approach the end of life, healing takes on greater significance. Despite our inability to ameliorate the patient’s disease, relief of suffering can be accomplished by focusing on other domains associated with the value and meaning of life; healing takes on broader significance as the patient approaches the end of life. Despite the inability to physically cure the patient in palliative care (particularly as they move closer to death), attention to the issues associated with the value and meaning of life, suffering, and death become important [13], including attention to physical suffering, psychological wellbeing, and strengthening of relationships with self and with the significant or sacred, however people understand that, which might include a relationship with God or another higher power [13].

INFLUENCE OF SPIRITUALITY IN PALLIATIVE CARE — A growing body of literature supports the notion that spiritual care is a patient need and common quality of life (QOL) concern [6,7,11,14]. The data also suggest that patients’ spiritual, religious, and cultural beliefs affect health care decision-making and health care outcomes, including coping and QOL and pain management. (See "Influence of spirituality and religiousness on outcomes in palliative care patients", section on 'Religiousness and health care decision-making' and "Influence of spirituality and religiousness on outcomes in palliative care patients", section on 'Impact of spirituality/religion on quality-of-life outcomes'.)

Increasing evidence demonstrates that spiritual distress is a significant aspect of overall distress in palliative care patients, and that spiritual resources of strength are also important to assess. One study involving 491 patients with lung cancer and 366 family caregivers tested a palliative care intervention which included spiritual wellbeing as one of four QOL domains of the intervention [15]. The intervention led to improvements in several key areas of spiritual wellbeing. The study also supports the multidimensionality of spirituality, which includes constructs such as meaning and faith in both religious and nonreligious patients.

Spiritual needs — As they approach the end of life, patients experience a myriad of struggles and needs that have been described as “spiritual.” Spiritual needs tend to be similar across all diseases and are related to love and belonging, hope, coping, meaning and purpose, faith and belief, and making the most of their time left [16]. As such, spiritual needs are related to QOL [17].

The majority of patients with serious illness want their spiritual issues addressed in their care [18]. Patients cite a variety of reasons including increased trust in their clinician, feeling that their wishes are respected, that realistic hope can be encouraged, that their spiritual beliefs help them cope with their illness, and that it gives them a sense of meaning in their lives. Meeting these needs may influence health care utilization, especially as patients approach the end of life [19,20]. As the disease status changes and patients decline, it is important to reevaluate spiritual needs [21].

Spirituality and health care decision-making — Spirituality and/or religion may influence end-of-life medical decision-making, along with personal philosophies [22-24]. For example, a naturalist may decline medications in favor of dietary and other interventions. Patients may also delay treatment choices in order to participate in spiritual rituals such as celebration of the solstice in the woods or participation in a religious ceremony [2]. (See "Influence of spirituality and religiousness on outcomes in palliative care patients", section on 'Influence of spirituality and religiousness on outcomes'.)

Spiritual coping and support — Spiritual coping is the reliance on spiritual and/or cultural or religious beliefs to adapt to the stress related to illness [25]. The available data suggest that spirituality or religious beliefs and practices can profoundly impact how patients cope with the suffering that accompanies a serious life-threatening illness, but the impact may be negative or positive. Most patients identify themselves as being religious or spiritual and also recognize elements of their lives which provide meaning and purpose [1,6].

Negative religious coping (ie, statements regarding disease as punishment or an indicator of abandonment by God) is associated with higher levels of distress, confusion, and depression, and lower levels of physical and emotional wellbeing and QOL [1,6].

Most data examining the influence of spiritual coping on outcomes come from studies of patients with advanced malignancy [1,6,19]:

A study published in 2012 reported a positive impact of spirituality on QOL among patients undergoing palliative radiation therapy for advanced cancer [25]. The impact of positive coping remained significant after controlling for other variables that impact cancer-related outcomes (eg, sex, age, race, and disease variables).

In other studies, cancer patients report that their spirituality is a source of strength that helps them cope, find meaning in their lives, and make sense of the cancer experience as they recover from treatment [15,16,26-28].

However, the importance of spirituality in coping has also been shown in other diseases, including motor neuron disease such as amyotrophic lateral sclerosis (ALS), sickle cell disease, HIV infection and AIDS, Alzheimer disease, multiple sclerosis, and heart failure. The National Consensus Project (NCP) Guidelines for Quality Palliative Care [5] includes spiritual care as one of the eight essential domains of care and stresses that this care applies to all of these diseases and any serious illness, across ages and setting.

Spiritual wellbeing and quality of life — Spiritual wellbeing is the opposite construct of spiritual distress. Theoretically, spiritual wellbeing has an impact on QOL because it can impact other QOL dimensions, including the physical, psychological, interpersonal, or emotional [9,29-34]. Spiritual wellbeing is strongly associated with overall QOL, mental wellbeing, physical wellbeing, emotional wellbeing, and social wellbeing. Supporting spiritual wellbeing may be useful, especially as patients approach the end of life. Spirituality is associated with an improved QOL for those with chronic and serious illness, which appears to hold true regardless of life expectancy.

Cancer patients have reported their spirituality helped them find hope, gratitude, and positivity in their cancer experience, and that their spirituality is a source of strength that helps them cope, find meaning in their lives, and make sense of the cancer experience [16]. Other studies have shown that spiritual wellbeing in cancer patients has been associated with lower levels of depression, better QOL near death, and protection against end-of-life despair and desire for hastened death [1,6].

Spiritual distress and existential suffering — Spiritual distress as a “distress diagnosis” is supported by the National Comprehensive Cancer Network (NCCN) [2]. The NCCN supports the use of spiritual distress categories for several reasons. First, some degree of medicalization is necessary to ensure it is integrated as a dimension of the routine care of these patients. Second, in order to treat and support spiritual suffering, further classification of that suffering is needed to provide more holistic and appropriate care for the patients. Evidence of spiritual distress should prompt referral to chaplains for further assessment [35-38]. A table is provided that includes spiritual distress categories, as well as the proposed diagnosis or issue listed with sample features from the history and examples of statements patients may say (table 1). Further discussion on distress secondary to physical or psychosocial etiologies is discussed separately. (See "Approach to symptom assessment in palliative care".)

The NCCN identifies spiritual distress as a range extending from common, normal feelings of vulnerability, sadness, and fear to disabling issues resulting in depression, anxiety, panic, social isolation, and existential spiritual crises [2]. Spiritual distress might also present clinically as anger, low self-esteem, uncontrollable pain, or other symptoms. The incidence of spiritual distress ranges, with estimates between 40 and 73 percent reported [6]. While specific to patients with cancer, we believe this definition also applies to patients with other medical conditions, where the prevalence is likely to be as high, including military veterans [39].

Studies have found that older adult patients or patients with chronic illness or cancer who experience spiritual distress are at risk for poorer health outcomes, including worse physical health, worse QOL, and greater depression [1,3,6,23]. Patients who report longstanding spiritual or religious struggles have been reported to be at greater risk of disability, higher indices of pain and fatigue, and more difficulties with daily physical functioning [1,6]. Although more limited data are available, spiritual distress may also predict a greater mortality risk, even when controlling for demographic, physical health, and mental health factors [1,6].

There are overlaps between spiritual distress and psychological distress and disorders, and patients vary on how these issues are discussed. All patients presenting with intense distress require a differential diagnosis to ascertain whether a psychological disorder (depression, unresolved grief, anxiety disorder, etc) is a primary driver or secondary result of spiritual distress. Similarly, mental health assessments require attention to spiritual issues that may be contributing to emotional suffering.

Differentiating spiritual, existential, and psychological suffering — The lines differentiating spiritual distress, existential distress, and psychological distress are not clear [2]. Different patients use different language for describing distress, some speaking more psychologically, others with more spiritual references, and others from an existential framework. Effective care requires open-minded and open-ended efforts to understand these multiple ways of thinking about and experiencing distress. Effective exploration requires eliciting and responding to the patient’s framework and language [2].

It is also important to use clinical discernment to distinguish the source of the distress. As an example, a patient with major depression and spiritual or existential distress may benefit from referrals to both a mental health professional and a chaplain. Patients who are struggling with questions such as “Why is this happening to me? What is the meaning of my suffering?” may be asking a spiritual or psychological question, or may be viewing their distress within an existential framework. Four existential domains are recognized through which existential suffering can manifest (table 2) [40,41]. Exploring the patient’s concerns using the patient’s framework is critical to good care. Including different members of the health care team to address the patient’s distress, based on a full assessment, and utilizing a person-centered approach are appropriate. (See 'Interprofessional collaboration' below.)

Patients do not usually disclose spiritual/psychological/existential suffering unless the clinician asks about it. A tool to aid health care providers in the diagnosis of existential suffering involves simply asking the patient, “Are you at peace?” [1]. This very broad question allows patients to respond within their own framework, whether it is spiritual, psychological, or existential. A “no” answer should prompt further exploration for signs of distress and the nature of the distress, which may clarify whether referral to a chaplain or mental health clinician is appropriate [40]. However, some patients may answer that they are at peace but still have spiritual distress, such as hopelessness. Therefore, a specific spiritual distress assessment is recommended as part of a thorough clinical history [42]. (See 'Spiritual screening' below.)

SPIRITUAL STRENGTH — Spirituality also may present as a source of strength for patients and is sometimes referred to as an inner strength. Examples include the ability to find meaning, the ability to seek forgiveness or to forgive, or having a strong spiritual community involvement [43]. Another example of spiritual strength may be a patient’s connection to God or the sacred. Spiritual strengths may help patients cope, find hope in the midst of suffering, find joy in life, and/or find the ability to be grateful [22,44,45]. Finally, some practices such as meditation, mindfulness, or prayer may be a resource of strength for patients. Interdisciplinary approaches to spiritual care are important to provide these resources, which requires training of clinicians in these modalities.

INTEGRATING SPIRITUALITY INTO PALLIATIVE CARE — To better inform the practical incorporation of spiritual care into palliative care, a US National Consensus Conference (NCC) developed a model of implementation of spiritual care that integrates dignity-centered and compassionate care into the biopsychosocial framework that is the basis of palliative care [46,47]. Fundamental to this model is the recognition of the role of all clinicians to attend to the whole person: body, mind, and spirit. This includes the obligation of all clinicians to attend to all dimensions of the suffering of a patient and family and to elicit the patient’s spiritual needs and then respect those beliefs and struggles.

This model has two main components:

The clinician-patient relationship – This is a relational component whereby spiritual care builds on the relationship between the clinician and patient and acknowledges the patient’s serious illness. Inherent to this aspect of spiritual care is the practice of compassionate presence, which can be characterized as being fully present with another as a witness to their own experience. The experience of compassionate presence by the clinician to the patient may result in a sense of healing by the patient within the context of the relationship with the clinician. This was described by the consensus conference as the concept of a transformational healing relationship. Healing may be finding meaning, hope, or a sense of coherence in the midst of their illness [46].

The clinical assessment and treatment of spiritual distress defined in two domains. One is assessment and treatment of spiritual distress. In this model, chaplains, who are ideally board-certified or board-eligible, serve as spiritual care specialists, with the non-chaplain clinicians providing generalist spiritual care [9,33,35]. Thus, all clinicians should address patients’ spirituality, identify and treat spiritual distress, and support spiritual resources of strength. In-depth spiritual counseling and exploration should be referred to the chaplain [48]. In addition, spiritual care refers to provision of compassionate care or presence to patients by the clinician. (See 'Spiritual screening' below.)

The following guidelines are available regarding the integration of spirituality in palliative care [46]:

All health care professionals should be trained in conducting a spiritual screening or history [4,42].

The results of spiritual screening, history, and assessment should be communicated and documented in patient records (eg, charts, computerized databases) and shared with the interprofessional health care team. (See 'Spiritual screening' below and 'Spiritual history' below and 'Spiritual assessment' below.)

Follow-up spiritual histories or assessments should be conducted for all patients whose medical, psychosocial, or spiritual condition changes and as part of routine follow-up in a medical history.

A spiritual concern rises to an issue that warrants addressing if any or all of the following criteria regarding the spiritual concern are met:

It leads to distress or suffering (eg, lack of meaning, showing evidence of conflicted religious beliefs, or need for forgiveness or reconciliation)

It is the cause of or is exacerbating a psychological or physical diagnosis such as depression, anxiety, or acute or chronic pain (eg, severe meaninglessness that leads to depression or suicidality, guilt that leads to chronic physical pain)

It is a secondary cause of or has an impact on the presenting psychological or physical diagnosis (eg, hypertension is difficult to control because the patient refuses to take medications because of his or her religious beliefs)

For all patients, treatment or care plans should include referral to chaplains, as appropriate, development of spiritual goals, and interventions to address any spiritual issues. (See 'Approaching spiritual distress' below.)

Important components on implementation of spiritual care are reviewed below.

Spiritual screening — The primary objectives of the spiritual screen are to:

Assess for spiritual emergencies (ie, spiritual distress, which needs attention by a board-certified or board-eligible chaplain right away).

Identify patients who may benefit from an in-depth spiritual assessment by a chaplain.

Spiritual screening, as with any screening, typically involves one or two questions and is done by clinicians who typically do a screening in the initial admission encounter [21]. For example, a skilled nurse or social worker may do the spiritual screening upon triage or admission in settings such as hospitals, nursing homes, or hospices. As an example, the patient can be asked, “How important is religion and/or spirituality in your coping?”

If patient responds affirmatively, then a follow-up question could be “How well are those resources working for you at this time?”

If the patient describes difficulty with coping and/or that spiritual or religious resources are not working well for them, referral to a board-certified or board-eligible chaplain, is advised.

If there are no difficulties identified by screening, the spiritual history should be obtained by a clinician involved in the admission process.

Others have attempted to enhance the identification of spiritual distress/pain in palliative care populations by a proposed modification of the Edmonton Symptom Assessment Scale (ESAS) to add the category of spiritual pain (“pain deep in your soul/being that is not physical”) to the scale (0 = best; 10 = worst) [1]. (See "Approach to symptom assessment in palliative care", section on 'Assessment and rating instruments for symptoms'.)

Frequently used measures to assess spiritual wellbeing include the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being (FACIT-Sp) and the Spiritual Well-Being Scale [1,42,49].

Spiritual history — As with other components of the medical history, a spiritual history is important for clinicians to take, especially during the initial consultation [24,46]. A spiritual history is more detailed than a screen and is usually performed by clinicians involved in the development of the treatment or care plan.

The spiritual history should not be regarded solely as a survey administered to patients. Targeted questions are employed to invite the patient to share their spiritual and/or religious, cultural, or existential beliefs. The questions are not meant as checklists but serve as an invitation to patients to share their spirituality or that which is significant or sacred to them [50]. The objectives of the spiritual history are to:

Develop a compassionate relationship with the patient.

Invite the patient to share about his or her spiritual beliefs, values, or practices if the patient wishes.

Listen for spiritual themes in the conversation with the patient.

Identify spiritual resources of strength.

Identify spiritual issues or a spiritual diagnosis that affects the patient’s illness or health or the patient’s health care decision-making and choices.

Identify appropriate referrals and treatment or care plans.

Identify resources that may be appropriate for integration into the patient’s overall care plan.

Ultimately, for clinicians, the spiritual history can serve the following goals [50]:

To better understand the patient’s beliefs and values

To identify spiritual themes and assess for spiritual distress (meaninglessness, hopelessness, etc) and spiritual resources of strength (hope, meaning and purpose, resiliency, spiritual community)

To connect with the patient in a deeper and more profound way

To empower the patient to find inner resources of healing and acceptance

To identify spiritual and religious beliefs that might affect health care decision-making

The FICA Spiritual History Tool — The FICA Spiritual History Tool is a validated tool for taking a patient’s spiritual history [21,22,43]. The format of the tool is as follows:

F – Faith and belief: “Do you consider yourself spiritual?” or “Do you have spiritual beliefs that help you cope with stress or with what you are going through?” (It is important to contextualize these questions with what the patient is going through.)

If the patient responds “no,” the clinician may ask, “What gives your life meaning?” Sometimes patients respond with answers such as family, career, or nature. But note that even if the patient identifies a spiritual concern, the clinician should explore further, perhaps by asking follow-up questions, such as “What gives your life meaning?” [51].

I – Importance: “What importance does your spirituality have in your life? Has your spirituality influenced how you take care of yourself in this illness? What role does your spirituality play in your health care decision-making (for example, goals of care, proxy, treatment choices)?”

C – Community: “Are you part of a spiritual or religious community? Is this of support to you, and how? Is there a group of people you really love or who is important to you?” Communities such as churches, temples, and mosques, or a group of like-minded friends can serve as strong support systems for some patients.

A – Address: “How would you like me, your health care provider, to address these issues in your health care?” Also, if the clinician identifies spiritual distress or resources of strength, that should be noted in the assessment and plan.

Spiritual assessment — A spiritual assessment builds on the initial screening by clinicians and is an in-depth, extensive, ongoing conversation in which a board-certified or board-eligible chaplain listens to a patient’s story to understand the patient’s needs and resources [52-56]. Models for spiritual assessments are not built on a set of interview questions but on interpretative frameworks that require extensive training to use effectively. Spiritual assessments are done with patients from many different religious or spiritual traditions and belief systems. A spiritual assessment has these primary objectives:

Develop a relationship with the patient in a clinical setting

Identify spiritual issues and confirm, elaborate, or make a spiritual diagnosis

Develop a spiritual care plan that can be shared with the treatment team

The aim is to understand the patient’s needs and resources by first listening to the patient’s story. There is no specified set of questions. That is, the assessment strategy is a process without a defined script, which is necessary because the content area itself is not amenable to a formulaic structure [57-59]. As a result, it requires extensive training, which is part of the certification process for professional chaplains. Chaplains are trained to deal with both spiritual and emotional issues. The chaplains often participate in family meetings, are involved in advance care planning discussions with patients and families, and provide grief and other spiritual counseling. In addition, they provide spiritual support to palliative care team clinicians [60,61].

APPROACHING SPIRITUAL DISTRESS — We utilize the generalist-specialist model of care in our approach to patients in whom spiritual distress is suspected:

For simple spiritual issues and concerns, non-chaplain clinicians can attend to and explore concerns. The clinician who elicits the spiritual history can simply allow the patient to tell their story and for the patient to explore its meanings. In this process of exploration, and with the support and concern of a compassionate clinician, the patient might come to some understanding and acceptance or peace. Additional interventions might include art or music therapy, yoga, mindfulness meditation, and psychosocial therapy, such as dignity-based therapy [62]. (See "Assessment and management of depression in palliative care", section on 'Existential psychotherapy'.)

For more complex spiritual issues (eg, need for forgiveness and/or reconciliation of self or others, severe existential distress, or lack of connection or love of others or God), referral to chaplains, a mental health clinician, or another qualified spiritual care professional is indicated.

The biopsychosocial and spiritual assessment and treatment plan — Once a patient has been evaluated by the treating clinician or the whole team, spirituality should be included in the overall treatment plan. Often spirituality is not seen as a medical issue and therefore is not included in a treatment or care plan. This can lead to neglect of attending to patients’ spiritual distress [1]. An example of an integrated assessment and treatment plan is shown in a table (table 3).

Interprofessional collaboration — As with other aspects of palliative care, interprofessional collaboration is important when it comes to addressing spirituality [63]. All members of the interprofessional team interact with patients, including responding to and addressing all dimensions of patient care: spiritual, religious, and existential as well as the physical, psychological, and social [64]. Each of these components of care provides insight into the patient’s suffering and their ability to manage that suffering.

Chaplains, ideally board-certified or board-eligible, can provide spiritual counseling and treatment of spiritual or existential distress. They can also advise other members of the palliative care team how to work with patients’ spiritual issues and can contribute to a comprehensive palliative care treatment plan to address the many dimensions of suffering, especially spiritual or existential suffering [65]. Chaplains also can coordinate the involvement of community spiritual care professionals (eg, community clergy, pastoral counselors, or spiritual directors). The role of chaplains is supported by many organizations, including the National Comprehensive Cancer Network (NCCN) [2].

Existential concerns may be difficult to diagnose since patients may have difficulty articulating their distress or may not be willing to disclose it [40,66]. (See 'Spiritual distress and existential suffering' above.)

Palliative care clinicians can explore many of these issues without referring to a mental health professional or a board-certified or board-eligible chaplain initially, through compassionate listening. A communication of empathy and validation of the spiritual or existential distress may be comforting to the patient. Furthermore, a variety of psychotherapeutic modalities (eg, dignity therapy) may alleviate the multifaceted aspects of existential suffering [67]. (See "Assessment and management of depression in palliative care", section on 'Existential psychotherapy'.)

Importance of the patient’s community — The patient’s own spiritual community may be an important resource to engage in care, and the patient or their family may identify their spiritual community as a traditional faith-based community (inclusive of their own pastor), or a network of other friends and family, or other social groups (eg, yoga or meditation group).

For example, a patient who wants to deepen their spiritual life or their relationship with God could benefit from a referral to a spiritual director. A patient who has a shaman for a guide might benefit from integrating the shaman in the formation of a treatment plan. In practice, determining the existence of and the importance of community cultural, religious, and spiritual resources for the patient and family caregiver is a normal part of the chaplain’s assessment process.

Health care chaplains, many of whom are board-certified, routinely coordinate with community religious, spiritual, or cultural resources as desired by the patient.

ADDRESSING SPIRITUALITY WITH PATIENTS — Addressing spirituality with patients should always be done in a respectful manner that recognizes the diversity of belief and nonbelief of our patients. The discussion should be person-centered with the focus on the patient’s spirituality, not the clinician’s. Proselytizing is not ethical in the clinical setting as it violates patient trust. For example, clinician-led prayer is not recommended.

Occasionally patients may ask their clinicians to pray with them or to participate in a spiritual ritual. Clinicians should respond according to their own comfort level. In such a scenario, clinicians can ask the patient to lead the prayer in their own tradition, or the clinician may ask the patient if they would like a chaplain to be present and lead the prayer. For those clinicians who are not comfortable praying or participating in rituals, stepping aside once the chaplain is present or being present and witnessing this important ritual represent two reasonable options.

Practical tools and recommendations for the integration of spirituality as an essential element of palliative care are available from the GW Institute for Spirituality and Health (GWish) [63].

SPIRITUALITY AT THE END OF LIFE — A common goal for the dying patient, family members, and the health care professional is for a meaningful dying experience. Meaning, however, is patient-centered and not provider-centered. Thus, for some patients, loss might be reframed in the context of a life legacy. For others, meaning might be in reconciliation with a higher power or in doing a life review and finding meaning in significant moments of one’s life [68]. However, not all patients are able to frame their goals in these terms.

Concerns about symptoms and family wellbeing are usually paramount. Reconciliation with loved ones or with God and peacefulness are commonly additional goals for this phase of life. The clinician’s role is to help the patient identify their own goals of care in light of their medical condition, treatment options, and prognosis and to develop a care plan that addresses the patient’s goals of care (spiritual and psychosocial as well as physical goals) and to help put in place a personalized plan that respects what is most meaningful to the patient. Engaging the spiritual resources of the patient, either through the institution or the community, can provide comfort, not only to the patient but to the family as well.

Clinicians should be aware that decisions around life-sustaining treatment may be heavily influenced by the patient’s (and/or their loved ones’) spiritual or religious beliefs. Therefore, it is important to explore these beliefs in order to help patients think through preferences around specific interventions.

Some patients may not openly express spiritual, existential, or religious concerns, despite being troubled by them. Clinicians should listen to patients empathetically so that they might be able to learn and understand what these concerns are. This should be done without trying to alleviate the spiritual suffering or by providing premature (or false) reassurances.

End-of-life decisions can be very difficult for patients. It is important that the clinician respectfully shares prognostic data but in a way that honors each patient’s uniqueness and does not take away a sense of hope and meaning for the patient. The clinician should respond by listening to the patient, aiming for a better understanding of the patient’s viewpoint, and helping the patient understand the medical realities of their situation and what treatment can and cannot achieve, recognizing that scientific data are one part of a larger understanding of the patient’s illness and what that means to the patient. Thus, a goals of care discussion must be centered on what the patient and family value most, what their spiritual beliefs or values are, what their preferences are in the context of their illness, and how best to honor those for the patient.

Suffering of patients and families is often challenging for clinicians as many clinicians are trained to “fix” and attempt to resolve distress for patients. Not all suffering can be fixed. Clinicians cannot find and assign goals or legacy building for a patient. Most patients simply need to be heard fully by a compassionate clinician or chaplain who can be present to the patient’s suffering and pain. Most patients can find answers for themselves within the process of sharing their feelings and their pain with a caring clinician. This requires the clinician to be able to listen compassionately without an agenda, often in silence, to the pain of others and, in so doing, create an environment of trust where the patient feels safe to share their deepest concerns.

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

SUMMARY AND RECOMMENDATIONS

Spirituality is a fundamental element of human experience. It encompasses the individual’s search for meaning and purpose in life and the experience of the transcendent. (See 'Introduction' above.)

The relationship between spirituality and health has gained attention in the United States and internationally. Spirituality (which includes religious and existential aspects of care) is one of eight specific domains of quality within palliative care, endorsed by the National Consensus Project (NCP) for Quality Palliative Care and numerous national organizations. (See 'Definitions' above.)

Increasing evidence demonstrates that spiritual distress is a significant aspect of overall distress in palliative care patients. The available data suggest that spirituality and religious beliefs and practices can profoundly impact how patients cope with the suffering that often accompanies a serious life-threatening illness; the impact of these beliefs may be positive (better spiritual wellbeing) or negative (spiritual distress). (See 'Influence of spirituality in palliative care' above.)

Religion and spirituality can also influence health care decision-making (including utilization of health care resources) and quality of life (QOL). (See "Influence of spirituality and religiousness on outcomes in palliative care patients", section on 'Religiousness and health care decision-making' and "Influence of spirituality and religiousness on outcomes in palliative care patients", section on 'Impact of spirituality/religion on quality-of-life outcomes'.)

All health care professionals should be trained in doing a spiritual screening or history. (See 'Spiritual screening' above.)

Spiritual screenings, histories, and assessments should be communicated and documented in patient records (eg, charts, computerized databases) and shared with the interprofessional health care team. The interprofessional team should include chaplains, many of whom are board-certified. (See 'Spiritual history' above.)

For all patients, treatment or care plans should include referral to trained spiritual care providers as appropriate, development of spiritual goals, and interventions to address any spiritual or existential issues. (See 'Spiritual assessment' above.)

As with other aspects of palliative care, interprofessional collaboration is important when it comes to addressing spirituality. All members of the interprofessional team interact with patients, including responding to and addressing all dimensions of patient care: spiritual, religious, and existential as well as the physical, psychological, and social. Each of these components of care provides insight into the patient’s suffering and their ability to manage that suffering. (See 'Interprofessional collaboration' above.)

The lines differentiating spiritual, existential, and psychological distress are not clear. Different patients use different language for describing distress, some speaking more psychologically, others with more spiritual references, and others from an existential framework. Effective care requires open-minded and open-ended efforts to understand these multiple ways of thinking and use clinical discernment to distinguish the source of the distress. As an example, a patient with major depression and spiritual or existential distress may benefit from referrals to both a mental health professional and a board-certified or board-eligible chaplain. (See 'Differentiating spiritual, existential, and psychological suffering' above.)

A common goal for the dying patient, family members, and the health care professional is for a meaningful dying experience. Meaning, however, is patient-centered and not provider-centered. (See 'Spirituality at the end of life' above.)

REFERENCES

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Topic 2198 Version 30.0

References

1 : State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes.

2 : Distress Management, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology.

3 : Does spirituality confer meaning in life among heart failure patients and cancer survivors?

4 : Does spirituality confer meaning in life among heart failure patients and cancer survivors?

5 : National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition.

6 : State of the Science of Spirituality and Palliative Care Research Part II: Screening, Assessment, and Interventions.

7 : State of the Science of Spirituality and Palliative Care Research Part II: Screening, Assessment, and Interventions.

8 : "Are you at peace?": one item to probe spiritual concerns at the end of life.

9 : "Are you at peace?": one item to probe spiritual concerns at the end of life.

10 : "Are you at peace?": one item to probe spiritual concerns at the end of life.

11 : The nature of suffering: physical, psychological, social, and spiritual aspects.

12 : Integrating spirituality into care at the end of life: Providing person-centered quality care

13 : Integrating spirituality into care at the end of life: Providing person-centered quality care

14 : Religion, spirituality and cardiovascular disease: research, clinical implications, and opportunities in Brazil.

15 : Palliative care and spiritual well-being in lung cancer patients and family caregivers.

16 : Spiritual needs and spiritual support preferences of people with end-stage heart failure and their carers: implications for nurse managers.

17 : A systematic review of associations between spiritual well-being and quality of life at the scale and factor levels in studies among patients with cancer.

18 : A systematic review of associations between spiritual well-being and quality of life at the scale and factor levels in studies among patients with cancer.

19 : Advanced cancer patients' reported wishes at the end of life: a randomized controlled trial.

20 : Support of cancer patients' spiritual needs and associations with medical care costs at the end of life.

21 : Determining best methods to screen for religious/spiritual distress.

22 : A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review.

23 : Sympathy, empathy, and compassion: A grounded theory study of palliative care patients' understandings, experiences, and preferences.

24 : Patient and healthcare perspectives on the importance and efficacy of addressing spiritual issues within an interdisciplinary bone marrow transplant clinic: a qualitative study.

25 : The role of spirituality and religious coping in the quality of life of patients with advanced cancer receiving palliative radiation therapy.

26 : The Preference to Discuss Expected Survival Is Associated with Loss of Meaning and Purpose in Terminally Ill Cancer Patients.

27 : Workings of the human spirit in palliative care situations: a consensus model from the Chaplaincy Research Consortium.

28 : Workings of the human spirit in palliative care situations: a consensus model from the Chaplaincy Research Consortium.

29 : Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

30 : Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

31 : Relationship Between Spiritual Well-Being and Hope in Patients with Cardiovascular Disease.

32 : Spiritual Needs and Perception of Quality of Care and Satisfaction With Care in Hematology/Medical Oncology Patients: A Multicultural Assessment.

33 : Development of the PC-7, a Quantifiable Assessment of Spiritual Concerns of Patients Receiving Palliative Care Near the End of Life.

34 : Using Chaplains to Facilitate Advance Care Planning in Medical Practice.

35 : The Evolution of Spiritual Care in the NCCN Distress Management Guidelines.

36 : Time to follow the evidence-Spiritual care in health care

37 : Spiritual assessment within clinical interventions focused on quality of life assessment in palliative care: a secondary analysis of a systematic review

38 : Respecting the spiritual side of advanced cancer care: a systematic review.

39 : Spiritual distress of military veterans at the end of life.

40 : Existential Suffering Part 1: Definition and Diagnosis #319.

41 : Care of the human spirit and the role of dignity therapy: a systematic review of dignity therapy research.

42 : Care of the human spirit and the role of dignity therapy: a systematic review of dignity therapy research.

43 : Evaluation of the FICA Tool for Spiritual Assessment.

44 : Teaching health care providers to provide spiritual care: a pilot study.

45 : Efficacy of Training Interprofessional Spiritual Care Generalists.

46 : Efficacy of Training Interprofessional Spiritual Care Generalists.

47 : Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference.

48 : Chaplains Working in Palliative Care: Who They Are and What They Do.

49 : Chaplains Working in Palliative Care: Who They Are and What They Do.

50 : Spiritual assessment in clinical practice

51 : The religion of "I don't know": Naturalistic pilot observations of spiritual conversations occurring during cancer home hospice nurse visits

52 : Nurses' Experiences of Spiritual Communication with Seriously III Children.

53 : Increasing the Number of Outpatients Receiving Spiritual Assessment: A Pain and Palliative Care Service Quality Improvement Project.

54 : A 10-Year Longitudinal Study of Effects of a Multifaceted Residency Spiritual Care Curriculum: Clinical Ability, Professional Formation, End of Life, and Culture.

55 : An Online Educational Program Improves Pediatric Oncology Nurses' Knowledge, Attitudes, and Spiritual Care Competence.

56 : An Online Educational Program Improves Pediatric Oncology Nurses' Knowledge, Attitudes, and Spiritual Care Competence.

57 : An Online Educational Program Improves Pediatric Oncology Nurses' Knowledge, Attitudes, and Spiritual Care Competence.

58 : Spiritual AIM and the work of the chaplain: a model for assessing spiritual needs and outcomes in relationship.

59 : Guidelines for conducting a spiritual assessment.

60 : Understanding the Differences Between Oncology Patients and Oncology Health Professionals Concerning Spirituality/Religiosity: A Cross-Sectional Study.

61 : "I Told Myself to Stay Positive" Perceptions of Coping Among Latinos With a Cancer Diagnosis Living in the United States.

62 : Restoration and re-creation: spirituality in the lives of healthcare professionals.

63 : Interprofessional Spiritual Care Education Curriculum: A Milestone toward the Provision of Spiritual Care.

64 : Interprofessional Spiritual Care Education Curriculum: A Milestone toward the Provision of Spiritual Care.

65 : How Community Clergy Provide Spiritual Care: Toward a Conceptual Framework for Clergy End-of-Life Education.

66 : Assessment of spiritual suffering in the cancer context: A systematic literature review.

67 : Existential Suffering Part 2: Clinical Response and Management #320.

68 : Provider Difficulties With Spiritual and Forgiveness Communication at the End of Life.