Top Ten Tips Palliative Care Clinicians Should Know About Spirituality in Serious Illness

Introduction

Illness is a spiritual event, and religion and spirituality (R/S) are important resources for coping with serious illness and making medical decisions.^1,2 In multiple studies of people with serious illness, more than half indicate the “importance” and “helpfulness” of R/S.^3,4 In fact, many people report turning to personal spiritual reflection and prayer or look to a religious leader when making important medical decisions. ⁵ Illness creates disruption in patients' and families' lives, not just in their routines and schedules. Illness challenges core beliefs about how the world functions and leads people to examine the order of the world and their place in it. These concerns address a core aspect of spirituality, that of meaning and purpose of life.^6–8 Illness raises questions that are fundamentally existential, like “what does this illness mean for me and those I love?” These questions can be sources of spiritual pain and growth.

Rather than being an optional add-on, spiritual pain was core to the original concept of “total pain” that informed the early hospice and palliative care (PC) movement. Dame Cicely Saunders emphasized “pain as a key which unlocks other problems and as something which requires multiple interventions for its resolution…to include physical, psychological, social, emotional and spiritual elements.” ⁹ Understanding the spiritual components of total pain can help with whole person care. Also, patients may manifest emotional and spiritual suffering through physical symptoms, and these symptoms may improve through directly addressing underlying concerns.

R/S can contribute to healing. Spiritual practices, community, and beliefs may contribute to positive religious/spiritual coping. ¹⁰ These resources may help patients and families navigate medical decisions and increase the possibility of making values-aligned choices that limit potential decisional regret. Making values-aligned choices can improve posttraumatic stress and other mental health outcomes. ¹¹ Incorporating R/S promotes patient-centered, holistic care, and healing. In this study, we describe top 10 tips to recognize spiritual and religious pain as well as how to partner with interprofessional colleagues to heal spiritual distress.

Tip 1: You Can Use the Same Communication Tools You Have Already Mastered to Address R/S

Some members of the interdisciplinary team may not be prepared to address R/S issues in the health care setting.^12,13 Some fear that a Pandora's box is opened by inquiring about R/S or that they will not know how to respond if the conversation goes in a complicated direction or requires certain religious insight. Providers highlight that another barrier to inquiring about R/S is constraints on their schedule, fearing such inquiry may occupy significant time. ¹⁴

These concerns are understandable. But thoughtful communicators should trust themselves to speak about R/S just as they would any other sensitive topic. The same skills will come into play as around responding to challenging emotions, delivering bad news, or providing medical care with cultural humility and sensitivity. It is important to treat the patient as the expert on how their religious tradition or spiritual beliefs impact their health care and be an active listener. One need not be a theologian or an expert on world religions to engage on this topic. You can adopt a curious and caring attitude by asking “How does your R/S inform your current health situation?” Other basic communication tools that are helpful are the NURSE mnemonic (Name, Understand, Respect, Support, and Explore) described in Table 1 and 5 Rs of cultural humility.^15,16

Tip 2: Patients Experience R/S Pain, Distress, or Struggle; Since It May Not Be the Patients You Would Expect, It Is Very Important to Screen All New Patients for R/S Pain or Struggle

It is well-established that R/S are among the most important and helpful resources for coping with serious and terminal illness. ⁴ However, some patients and families also experience what is referred to as R/S pain, distress, or struggle. R/S struggle includes “tensions, conflicts, and negative emotions around sacred matters.” ¹⁷ Between 10% and 40% of patients with advanced illness may experience R/S pain or struggle.^12,18–22 There is strong evidence that R/S pain or struggle is associated with poorer emotional well-being and quality of life.^23,24 There is also evidence that it is associated with poorer adherence to recommended treatment, ²⁵ increased health care utilization, ²⁶ poorer functional status, ²⁷ and mortality. ²⁸

In light of its harmful effects, it is important to screen all new patients for R/S pain or struggle and to repeat the screening at regular intervals or when there is a change in a patient's condition. One effective approach is to use the Spiritual Pain question that has been added to the revised version of the Edmonton Symptom Assessment Scale (ESAS). ¹⁹ That question is, “Are you experiencing spiritual pain? Spiritual pain is pain deep in your soul/being that is not physical.” Like the other items in the ESAS, the responses for this item are 0 (No spiritual pain) to 10 (Worst spiritual pain). A response of 4 or greater indicates possible moderate or severe spiritual pain that should be assessed by a qualified chaplain.

Ideally, spiritual screening should be performed during the first or second visit with the patient, regardless of whether spiritual distress is mentioned in the consult from a referring provider. Some clinics track spiritual screening with a tool such as the ESAS at every appointment, along with other symptoms, to monitor changes over time. Spiritual screenings can be conducted when there is a change in the illness, treatment, prognosis, or a significant psychosocial event that occurs in the patient's life and/or at specific intervals (i.e., six-month follow-up visit). Spiritual screening is also a way to explore the overall well-being and coping of a patient if your clinical intuition tells you that something is unusual or different compared to previous clinical encounters. Other tools are available to screen for R/S pain or struggle, and research about the best tools for different clinical contexts is ongoing.^29,30

Tip 3: Many Patients Want Their Medical Providers to Ask About R/S Beliefs and Practices; Taking a R/S History Is a Good Way to Do That

Many, but not all, patients want their medical providers to ask about their R/S beliefs and practices; a systematic review found a median of 70.5% patients thought it was appropriate for physicians to inquire about patients' R/S in at least some circumstances. ³¹ Many patients feel that it helps their providers know them better and it strengthens the patient-provider relationship. ³¹ Taking an R/S history provides a good opportunity to find out if R/S is important for each patient and, if it is important to learn more about it. There are a number of tools for R/S history-taking. ³² The FICA is a frequently used tool for spiritual history-taking.^33,34 See Table 2 for the items in the FICA.

Tip 4: Chaplains Diagnose Spiritual Distress and Needs through a Process Called Spiritual Assessment, which Includes a Plan of Care to Address Identified Area(s) of Spiritual Pain and Suffering

While any member of the interprofessional team can use the tools offered above to screen for spiritual distress and uncover R/S needs and resources, chaplains are expert in developing a care plan to address diagnosed spiritual distress. Ideally, all PC patients should meet with a chaplain. Given staffing constraints, many clinics and inpatient PC teams use a predetermined cut-point to trigger a referral to a chaplain if there is moderate or high psychosocial distress, for example.

Chaplains document their assessment, interventions, and outcomes to describe the spiritual care they provide. As spiritual care is an inherently relational clinical practice, some chaplains feel that the word assessment, rather than “diagnosis,” better describes the process. There are several spiritual assessment models that guide chaplains in the work of diagnosis and clinical practice related to R/S distress and at least two have been be developed and studied in PC.^35,36 Table 2 illustrates areas of spiritual distress that inform chaplains' spiritual care plans. Clinicians can support holistic care by knowing how to screen and refer. Knowing that chaplains engage deeply with R/S information may be a comfort to medical providers who worry that they lack the time and knowledge to develop spiritual care plans.

Tip 5: R/S Factors into Advance Care Planning Conversations; Chaplains Can Be an Asset When Navigating These Conversations with Patients and Families

Decision making about life sustaining treatments raises R/S concerns for patients.^37,38 Patients may wish to make decisions that are consistent with their values or faith. Spiritual screening and spiritual history, as discussed above, can reveal R/S traditions and practices at any point during the trajectory of the serious illness or at end of life. Spiritual screening and history aligned with advance care planning will touch upon considerations related to palliation, religious needs, and expectations before and after death, including possible need for faith-specific clergy.

Patients may worry that it would be wrong or sinful to either undergo or forgo certain medical treatments. Hoping for a miracle is common (see Tip #6). This hope may translate into a belief that the patient, doctor, or family should continue life-sustaining treatments so that the miracle may occur. Some patients and families believe that death means a reunion with God or a state of peace and accept comfort care on that basis. Some patients may resist advance care plannning (ACP) because they feel that God is in control and taking over that control is wrong.

While understanding these common themes is important, clinicians should ask individual patients or family members about the role of faith in their decision-making process. ³⁴ A common question might be, “What should I know about your religious or spiritual beliefs as I support you in making these decisions?” Awareness of the important role that R/S play in decision making can also help clinicians listen for and respond to religious themes that patients and families raise.

One study found that although there was discussion of R/S concerns in 16.1% of intensive care unit (ICU) family meetings, physicians rarely responded to surrogate's statements to learn more and most often responded by changing the subject. ³⁹ Out of 249 conferences, only two were attended by chaplains. Chaplains may be able to elicit or explore these beliefs in greater depth with patients and decision makers. Professional chaplains are trained to assess and provide for the religious and spiritual needs of patients from all traditions and worldviews, including those outside the chaplain's own. If there are concerns about theology or dogma, chaplains can bring their expertise in theological reflection or invite a faith leader from a particular tradition if needed. With both religious and nonreligious patients, life review and reflection may help patients come to terms with their medical situation. ⁴⁰

Tip 6: When Patients or Families Tell You They Believe in Miracles, Choose to See It as an Entrée into Goals of Care Rather than a Rejection of Science or Medicine

A 2010 survey from the Pew Forum on Religion indicates that nearly 80% of Americans believe in miracles.^41,42 Many of those people do not affiliate with a religion and may not even attribute the miracle to God or a religious deity. Miracle is a term that is used widely by patients and families facing serious health crisis and has a unique and personal meaning to every individual. It may or may not reflect the theological teachings of a particular faith tradition. Therefore, convey curiosity about what is meant by a miracle each time the word is used.

Expressing belief in a miracle of any kind can feel risky and vulnerable for patients and families, so reassure them that someone from the team will stick with them, no matter what they believe. Start with “Tell me more.” Keep the AMEN acronym in mind: Affirm, Meet, Educate, No Matter What. ⁴³ Several studies offer “taxonomies” of hope for miracles and guide providers in how to respond.^44,45 For example, an innocuous hope for a miracle, is one where the object of hope is plausible, and a clinician can respond through exploring what a patient understands about their illness. On the contrary, an expression of hope that is shaken for a miracle, may entail confusion and anger about a hope that will not materialize and necessitates validation of the patient's feelings and engagement of professional spiritual care support. ⁴⁵

Some patients and family members may mention “miracle” in conversations about goals of care. ⁴⁶ Some people see modern medicine or effective symptom management to be miracles. People sometimes hold up religious belief as a way to not address decision making or to advocate for continued life-sustaining treatments. We recommend approaching the discussion of miracles with compassion and address it as you do any kind of resistance to decision making. Some people mention miracles to feel more empowered and push back against systemic power dynamics in health care; many seriously ill patients and their loved ones feel helpless and they may attempt to draw on something supernatural for authority and power.

Tip 7: Patients May Ask if You Are Spiritual or Religious or Make Statements About R/S that You Do Not Agree with; Good Spiritual Care Requires Respecting Boundaries About Your Personal Disclosures and About Patient Beliefs

Discussing anything as personal as R/S requires the clinician to respect interpersonal boundaries. Chaplains are carefully trained in how to connect with patients while maintaining boundaries, but basic knowledge is important for all clinicians. A fundamental precept of spiritual care is that chaplains and other clinicians should not proselytize or attempt to convince a patient or family member to practice a certain faith or believe a certain way. Rather, spiritual care involves a process of inquiry and reflection, in which the patient or family member's point of view is central. Clinicians should avoid giving R/S advice or correcting a patient's or family's theological belief even if they strongly disagree with it or find it is a source of conflict with the medical team.

Some patients also ask chaplains or clinicians to disclose their R/S affiliation. One option is to respond with a general statement affirming your care for the patient as a whole person and your desire to hear about what is important to them, including faith beliefs, R/S practices, or other core values. When a patient probes, one might think of the question as any other personal disclosure: (1) What do I feel comfortable sharing?; (2) How might a disclosure support or detract from clinical rapport?; and (3) What makes the most sense in the current situation? It is okay to decline to reveal information that feels too personal.

Patients may ask for prayer.^47–49 Offers of prayer need to consider appropriate boundaries and the role of prayer in the patient's faith. If a patient asks for prayer, a clinician may defer to a chaplain or participate if they feel comfortable. Participation does not mean that the clinician believes the same as the patient, but sharing prayer may be a source of support.^50,51 Interestingly, there are little data available about whether patients find it helpful when physicians do pray and how this impacts rapport. Many patients and physicians believe that R/S and prayer should be discussed with each other, but perhaps each are waiting for the other to initiate the topic.

Tip 8: It Is Appropriate to Refer Chaplaincy/Spiritual Care without First Checking with the Patient

It is not required to tell a patient that you are making a referral to a chaplain. If you choose to inform them, you can introduce a chaplain by explaining that “The chaplain is another member of our team coming to see you. They are the specialists to support religious/spiritual/existential aspects^6,52,53 of your illness and treatment.” ⁵⁴

Many nonchaplain clergy do not have training as health care workers. It is helpful for medical providers and chaplains, if available, to interpret the medical context for clergy, with the patient's permission. We recommend that, even if the patient's clergy is present, the chaplain join as well to support clear communication. As your health care partners, chaplains address decision making, spiritual distress, religious struggle, and coping. ⁵⁵ Chaplains are health care team members contributing at rounds, participating in care conferences, and communicating spiritual assessments through documentation.

Tip 9: Spiritually Attuned PC Medical Providers Listen for Key Words and Phrases

The previous points establish guidelines to attend to R/S issues with sensitivity and intentionality. Additional key words and phrases may serve as indicators for needing specialized spiritual support and a subsequent referral to a chaplain. The main indicators are comments or incidents that indicate spiritual distress.

As mentioned above, spiritual distress involves intra- and interpersonal R/S tensions and struggles and may include feeling abandoned by God/a higher power, being in conflict with others about R/S beliefs or practices, or struggling with ultimate meaning.^56,57 As already noted, chaplains use a diagnostic process called spiritual assessment to monitor patients, drawing out statements and stories, and listening for terms that may indicate spiritual distress.^35,58 Table 3 provides categories and examples of key words and phrases.

Patients and/or families voicing a hope for a miracle in the setting of a life-limiting illness (see Tip #6), in addition to indicating need for advance care planning (see Tip #5) may also require specialized spiritual care. Any indication that the outcome of the patient's health trajectory is entirely out of their own or their providers' control, with the patient deferring control to God or karma, may indicate complexity in how beliefs and values will apply to decision making. Such a complex situation typically necessitates a chaplain's insight.^59,60

The patient's view of God's role may be a barrier but also a potential resource in accepting the natural process of death as part of life and being at peace with it. Fear of death, concerns about the afterlife, and suffering as punishment or experienced as deserved are additional important themes to be attuned to as potential prompts for chaplain referral.^35,61,62

Tip 10: R/S Is an Aspect of Culture that Intersects in Infinite Ways with Other Facets of Identity, Including Race, Nationality, Sexual Orientation, and More; Providing Culturally Humble and Values-Concordant Care Mitigates Challenges and Obstacles Related to R/S and Health Disparities

As with any other aspect of culture, patients who identify with a spiritual or religious community share similar beliefs and values that likely inform their approach to illness and medical care. Some domains that may be impacted by a patient's cultural/religious/spiritual background include the following:

Nutrition—Dietary restrictions, special food, or fasting considerations if patient is hospitalized on a holy day.

Medication and treatments—Ingredients, how much/when to use pain medication.

Modesty—Being cared for by providers by the same gender if possible, helping the patient be modestly dressed in mixed company.

Ritual objects and religious garb—Ensuring patient has access to religiously and spiritually significant reading or listening material; allowing patient to keep ritual objects where they can see and touch them (if applicable), preparations for end-of-life and postmortem care should they die in the hospital (e.g., timeframe for moving the body of the deceased patient).

Holy days—arranging for visit from clergy, providing appropriate ritual items/foods, understanding constraints for treatment on these days, and empathizing with patient's sadness about missing observance/celebration with loved ones.

Decision making—knowing who in the family takes the lead or is involved, clarity on whether clergy should be present or consulted.

Conclusion

Spiritual care is central to high-quality, patient-centered PC. The above tips empower all medical providers to screen for suffering and be spiritual care generalists. Opportunities for healing of the whole-patient emerge when spiritual needs are recognized and properly addressed.