Author
Instrument
Number of items or domains
Description
Sulmasy [47]
1
“What role does spirituality or religion play in your life?”
Cobb [66]
1
“I see that you describe your religion as ______. Can you tell me more about this?”
Steinhauser et al. [49]
1
“Are you at peace?”
Anandarajah and Hight [50]
HOPE
4
H: Assessment of sources of hope, strength, comfort, meaning, peace, love, and connection.
O: Assessment of organized religion.
P: Assessment of personal spirituality and practices.
E: Effects of spirituality on care and end-of-life decisions.
Puchalski and Romer [51]
FICA
4
F: Faith or belief: what is your faith or belief?
I: Importance: is it important in your life?
C: Community: are you part of a religious or spiritual community?
A: Address: How would you like me, your health-care provider, to address these issues in your health care?
Maugens [52]
SPIRIT
6
S: Spiritual belief system: what is your religious affiliation?
P: Personal Spirituality: What is the importance of spirituality in your daily life?
I: Integration with a spiritual community: Do you belong to any spiritual or religious group?
R: Ritualized practices and restrictions: Are there aspects of medical care that you forbid on religious/spiritual grounds?
I: Implications for medical care: What aspects of your religion/spirituality would you like me to keep in mind as I care for you?
T: Terminal events planning: As we plan for your care near the end of life, how does your faith impact your decisions?
Spiritual needs in advanced illness have been classified into several domains, and exploring each of these domains can serve as a framework for assessment. Groves and Klauser [48] describe four domains of spiritual pain, including (1) meaning (e.g., the inability to make sense of what is happening), (2) forgiveness (e.g., the failure to forgive oneself or others), (3) relatedness (e.g., the loss of relationships and roles) and (4) hopelessness. Sulmasy adds the domain of value, the dignity people have because they are human beings, which is challenged during serious illness because of changes in appearance and abilities. Sulmasy provides a list of questions that can be used to inquire into issues of value, relationship, and meaning [47]. A single question, “Are you at peace?” can be used to begin a discussion of spiritual issues [49]. This question was compared to general quality of life and spiritual well-being in a mixed sample of patients at the end of life (cancer, heart failure, end-stage renal disease, chronic obstructive pulmonary disease). The one-item measure was strongly and positively correlated with emotional and spiritual well-being and moderately and positively correlated with physical well-being, functional well-being, and social well-being.
Several guidelines for conducting structured spiritual assessments have been developed, including HOPE [50], FICA [51], and SPIRIT [52]. In addition, the Working Group on Religious and Spiritual Issues at the End of Life Guidelines for Physicians provides a list of conversation goals and example phrases to help elicit patient concerns [53]. These systems have several commonalities, including identifying how important religion or spirituality is for the patient, how they believe it affects their illness or medical decision-making, and whether the patient has any current spiritual concerns. These assessments provide an outline to ensure providers touch on important aspects of religiousness or spirituality, and can be used as guides for starting conversations with their patients about religious or spiritual needs.
Spiritual Interventions
Spiritual care has been defined as supporting another person in spiritual distress by being present, deeply listening, and being compassionate [54]. Clergy or chaplains have been the primary providers of spiritual care and are trained to address spiritual and existential concerns [54]. However, studies show that many patients want healthcare providers, including physicians, to consider their spiritual or religious beliefs or needs [11, 55, 56], yet 68 % of patients reported that no physician had ever inquired about their spiritual or religious needs [11]. Thus, there is room for healthcare providers to integrate spirituality in the care of patients at the end of life. The role of healthcare providers is to facilitate patients’ experience of spirituality and religiousness, not to give patients’ meaning or to “treat” their spiritual distress [47]. We provide several practical applications for addressing spiritual distress (see Table 10.2 for an overview) and describe the current state of the research in spiritually informed interventions in patients with advanced cardiovascular disease.
Table 10.2
Spiritual and existential interventions
Author | Approach |
|---|---|
Frankl [57] | Have patients reflect on four areas |
1. What are your creations or accomplishments? | |
2. Who or what have you loved? | |
3. What legacy have you left behind? | |
4. What are the things you believe in? How can you use these beliefs to cope with the suffering? | |
Spira [58] | Considering an Optimal Future: “If you had 1 year (month, week) to live and you wanted to make it the most meaningful year of your life: |
What personal characteristics (self-image, personality, assumptions about life) would you want to let go of? | |
What personal characteristics would you want to have to help you make this year a valuable one for you? | |
What activities would you want to engage in that would bring greatest meaning and value to your life? | |
What is stopping you from having these qualities and doing these activities now? | |
What can you do to overcome these barriers and live more fully?” | |
Reprioritizing Life Activities: Helps patients identify meaningful actions and prioritize spending more time in activities that are meaningful to them. | |
1. Make a list of activities you spend your time doing in a typical week. | |
2. Prioritize this list, with the activities you spend most time with at the top and those you spend less time on toward the bottom. | |
3. Prioritize these activities again, but this time list at the top the activities that bring more meaning and personal value to your life, with progressively less meaningful activities toward the bottom. Any activities that you wish you were doing, even though you have not gotten around to them, can also be added to this list. | |
4. Examine the last two columns. If the lists are ordered differently, then it is important to ask what you can do to spend more time engaged in those activities that bring more meaning and value to your life and less in activities that you do out of habit. | |
Groves and Klauser [48] | Art therapy |
Breath work | |
Dream work | |
Energy therapies | |
Forgiveness exercises | |
Guided visualization | |
Prayer | |
Journaling | |
Life review exercises | |
Meditation | |
Music therapy | |
Religious rites and sacred writings | |
Rituals for the bedside | |
Rituals of remembering |
Frankl [57] suggested four areas in which reflection may encourage patients to reconnect to their sense of meaning. These areas included: (1) their creations or accomplishments; (2) who or what have they loved; (3) what legacy have they left behind; and (4) the things they believe in and how can they transcend the suffering. Spira [58] described several existential exercises that may help alleviate existential anxiety. For example, he suggested having patients consider what their optimal futures would be (“If you had 1 year (month, week) to live and you wanted to make it the most meaningful year of your life, what would you do?”) and reprioritizing life activities so that patients are living in accordance with their values. Although these brief interventions have not been formally tested, they provide a basic way for providers to help patients reconnect to what made their lives meaningful and perhaps reduce some of the existential anxiety they are experiencing.
There are many other practices that may be helpful for spiritual distress besides talking. Groves and Klauser [48] describes a number of them, including art and music therapies, guided visualization, meditation, and various rituals (see Table 10.2 for a more complete list). Sometimes a ritual or behavior is a good alternative to talking. Consider for example the importance of birth, death, and marital rituals in various cultures.
Conducting interventional studies in end of life populations can be challenging giving attrition from clinical trials. In one recent trial in patients with advanced solid tumors, only 43.1 % (66 of 153) participants completed a 2-month study protocol [59]. To our knowledge, only two interventions (both in the pilot phase) incorporating spirituality have been formally studied in patients with cardiovascular disease at the end of life. Delaney et al. [60] pilot tested a spirituality-based intervention for community-dwelling patients with cardiovascular disease and Masters and colleagues [61] pilot tested a 12-week mail-based psychospiritual intervention for patients with heart failure. Both interventions showed promising results, as they were deemed feasible to implement and showed significant increases in quality of life. However, future studies are needed to further test the efficacy of these interventions.
There is much room for the research to grow in this area. Spiritually informed interventions for patients with cancer, such as meaning-centered group therapies [62] and dignity therapy [63], are interventions that have had some success and could potentially be adapted for patients with advanced cardiovascular disease. Breitbart and colleagues [62] piloted a meaning-centered group psychotherapy intervention for patients with advanced cancer. Influenced by Frankl’s work, eight group sessions explored concepts and sources of meaning, including the impact of cancer on one’s sense of meaning and identity. Preliminary evidence suggested that compared to a supportive group therapy control, patients in the meaning-centered group experienced greater improvements in spiritual well-being and a sense of meaning as well as decreases in anxiety and desire for hastened death.
Dignity therapy involves the creation of a legacy document [63] via a brief individual psychotherapy designed to address issues of generativity, meaning, and purpose at the end-of-life by having patients reflect on the things that have mattered most to them in life and focus on how they would like to be remembered. Compared to a client-centered psychotherapy and a standard palliative care control, cancer patients who received dignity therapy were more likely to report that the intervention helped them by improving their quality of life and sense of dignity. However, there were no significant differences in depressive or anxiety symptoms, quality of life, spiritual well-being, or physical symptoms between groups or between baseline and follow-up assessments. The researchers concluded that because patients were not very distressed at baseline, their ability to find significant improvements was limited. Chochinov [63] lists the questions used in dignity therapy, which may useful in advanced cardiovascular disease. Further research testing interventions similar to those in oncology and novel interventions that address spirituality at the end of life in patients with cardiovascular disease is needed.
Conclusions
Spirituality and existential issues are highly prevalent in patients with cardiovascular disease at the end of life [16–18]. In general, positive aspects of spirituality (e.g., meaning in life, spiritual well-being, religious or spiritual involvement) are positively related to health and well-being whereas as negative aspects (e.g., religious or spiritual struggle, existential anxiety) are negatively related to health and well-being. This is consistent with findings in healthy samples and in patients with other chronic illnesses [64]. Therefore, identifying patients with significant spiritual struggles or existential anxiety is crucial to providing quality care to patients at the end of life.
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