Developing the H-5,a Quantifiable Spiritual Assessment for Hospice Care

Abstract

Objective

To develop a quantifiable spiritual assessment model that identifies spiritual concerns in patients and families receiving hospice care.

Method

A survey of interdisciplinary colleagues was conducted at a large hospice program to discover strengths and weaknesses of spiritual assessment documentation. Taking these concerns into account, a pilot group of hospice chaplains (n = 6) adapted the existing PC-7 spiritual assessment for use with hospice patients receiving end of life care. The resulting H-5 assessment model was then utilized by a larger chaplain team (n = 15) which provided feedback via individual interviews at 2 months and 1 year.

Results

The H-5 assessment model employs 5 spiritual concern themes from the PC-7 model, with added indicators to identify a patient’s perceived level of support, relational resources and ability/willingness to access resources. The H-5 broadens the assessment scope to include both patient and family concerns. Additionally, the H-5 includes a scoring rubric to determine overall severity of spiritual distress. Chaplains trained to use the H-5 reported an increase in the quality and consistency of the care they provided, as well as perceived improvement in interdisciplinary rapport and communication.

Significance

Hospice agencies are required to complete comprehensive assessments, including spiritual concerns, as well as provide spiritual counseling to patients and families. There is no standard for assessing spiritual care needs in hospice clinical contexts. This report presents the H-5 assessment model, which identifies the spiritual concerns of hospice patients and their families.

Keywords

hospice spiritual assessment chaplain spiritual care spiritual distress end of life

Introduction

It is widely documented that those who are nearing the end-of-life often struggle with emotional, spiritual and existential concerns¹ and when these concerns go unmet, they impact the well-being of care recipients.^2-4 Hospice is a model of high-quality, compassionate care for people suffering from a terminal illness, often in a home environment. Hospice provides expert medical care, symptom management, and support tailored to the patient’s emotional and spiritual needs and wishes. Hospice programs in the United States (US) are required to provide a core patient care team that includes a hospice nurse, social worker and chaplain.⁵ The CMS Code of Federal Regulations requires that a spiritual needs assessment be documented within 5 days of a patient’s hospice election, followed by provision of spiritual counsel to patients (for those who accept it) as part of the hospice comprehensive model of care.⁶ The Hospice Item Set Manual, published by the US Centers for Medicare and Medicaid Services (CMS) states “Discussion of spiritual concerns is the core of a rigorous assessment of spiritual care needs and is essential to assuring that these needs are met.”^7(p42) Despite these regulations, there is currently no standard for how spiritual care needs are assessed, leaving hospice agencies and/or individual chaplains to determine how to assess and address spiritual concerns of hospice patients.

In the broader healthcare context, chaplain documentation about patient spiritual concerns, and subsequent interventions provided have been described in past studies as limited.⁸ Chaplain documentation often leaves out clinically relevant information or uses “code language” specific to the spiritual care discipline.⁹ When assessments of concerns are not documented clearly, it can hinder interdisciplinary team (IDT) communication and limit the care planning process.

There are existing spiritual assessment tools that have been developed for more general clinical contexts.^10,11 Some common spiritual history-taking tools, often utilized by spiritual generalists (such as physicians and nurses), include the FICA^12,13 and HOPE models.¹⁴ However, in recent years, as the field of chaplaincy continues to professionally evolve and become more research-informed, there have been calls to develop, validate and establish spiritual assessment tools that are specific to particular care settings.⁸ The Spiritual Distress Assessment Tool (SDAT), developed in 2010, identifies and quantifies the spiritual concerns of geriatric medical rehabilitation patients.^15,16 The more recent PC-7 quantifiable spiritual assessment identifies religious/spiritual concerns for patients receiving palliative care.¹⁷ (The PC-7 is now known as the PC-6 in light of further research that streamlines the assessment’s themes.)¹⁸ There is also the recently published quantifiable ONC-5 assessment, which identifies spiritual concerns of adult oncology patients.¹⁹

Currently there are no spiritual assessment models that exist for the hospice care setting which address the time-limited existential concerns of hospice patients, other than assessment forms developed internally by agencies or individuals. The aim of this project was to develop a spiritual assessment model that identifies and quantifies the spiritual concerns in patients and families receiving hospice care. The hope is that a standard hospice spiritual assessment will support the expertise of spiritual care providers, positively impact interdisciplinary communication and ultimately improve patient care.

Methods

The H-5 spiritual assessment model was developed in 4 phases. The first 2 phases focused on developing the model over 4 months, followed by an additional 2 phases to determine usefulness and reliability over 1 year. This project was undertaken by the spiritual care manager and chaplain team of a large home hospice organization serving urban, suburban and rural patients in the Pacific Northwest region of the US in 2022.

Phase 1 – IDT Survey and Review of Existing Assessment Models

In the initial phase of the project, the hospice spiritual care manager gathered feedback from chaplains and IDT members about spiritual assessment documentation. Twenty-seven IDT members completed a survey. Their responses indicated that spiritual care and the work of chaplains were highly valued. However, they also revealed that improvements could be made in relation to documentation clarity with an intentional focus on the nature of a patient’s suffering and care needs (Table 1).

Table 1.

Survey Results, Sample of IDT Comments Prior to Any Changes in Documentation

	Social work comments	Nurse comments	Physician comments
What is most helpful about the chaplains’ documentation?	“Insight into the patient and families state of mind, information relative to their care and comfort that can be useful to the rest of the team.” “Chaplains provide a bigger picture of the existential suffering patients and families are enduring…” “A holistic view of the home social/emotional environment…”	“Gain insight into spiritual needs that might ‘spill over’ into nursing needs.” “They talk about things I don’t have time to delve into.” “Helps me plan my approach to meet (patient) needs.”	“I love when I can get a sense of how engaged a patient is - for example if the patient is on hospice for dementia, and the chaplain includes in their note that patient slept through the entire visit, I find this helpful for recertification. I also find little snippets helpful - like comments that an untouched food tray was at bedside.”
What is least helpful about the chaplains’ documentation?	“...there seems to be some phrases that are sort of trade stock and repetitive. These are usually shorthand for a type of Chaplain ministration with a patient or family. These are not helpful.”	“It is often minimal.” “I don’t read it very often.” “Overly brief notes.”	“When there are generic comments like, “Chaplain provided supportive listening” without clarification. It is a bit difficult to tell what was involved.”
What information (that would be helpful to you) is missing from the chaplains’ documentation?	“I love it if I can tell from the (chaplain) notes what the belief system is for the primary survivor, in addition to the patient, because I need this info to do (the) bereavement assessment.”	“What struggles the patient is going through and what the plan of care is.” “A synopsis of concerns/issues the patient is working through with chaplain in an easy to get at/quick to see place.”	“To be aware of words and thoughts that might affirm the patient and family.”
Do you have any other recommendations for the chaplains’ documentation?	“Keeping the information concise yet rich…”	“I would love if there was a place we could quickly look in the chart to find out a patient’s particular concerns or what they are working through with the chaplain…”	“Would like to better understand any ‘meaning’ of the suffering which the chaplain is able to ascertain.”

During this initial phase, the spiritual care manager also searched for an existing spiritual assessment or history-taking model that could be appropriate for assessing hospice patients. Spiritual assessment models considered were the Spiritual AIM,²⁰ SDAT,¹⁵ PC-7¹⁷ as well as the HOPE¹⁴ history-taking model. As hospice is often considered a final stage of palliative care, the evidence-based and more recently published PC-7 assessment model was determined to have the most applicable themes to the hospice context. However, the PC-7 needed to be adapted to address the urgency and relational complexity of spiritual concerns at end-of-life once a patient is no longer receiving disease-directed treatment.

Phase 2 – Model Development

The second phase of the project involved a pilot group of 6 chaplains actively using and adapting the PC-7 spiritual assessment in the course of their care for hospice patients. This pilot group included 3 board-certified lead chaplains, 2 experienced board-certified chaplains and 1 entry-level chaplain. The pilot group met weekly for 6 weeks to discuss which PC-7 themes seemed most relevant, as well as which themes needed adaptation for hospice care. The spiritual care manager utilized the group’s feedback to update the assessment tool for use in documentation each week. The most recent iteration of the model was made accessible within the electronic medical record by updating a smartphrase, which could be included in each chart note. This process was intensive and collaborative, with the pilot group identifying assessment challenges and bringing new suggestions for improvements to the model each week. Consensus was developed around assessment themes and the scope of when and how to use the assessment.

Phase 3 – Training and Implementation

The resulting H-5 assessment model was presented to the hospice agency’s broader spiritual care team [n = 15.] During monthly meetings for 6 months, the spiritual care manager allotted time for chaplains to share case studies and discuss which spiritual concern themes from the H-5 were present and how the H-5 model could be applied. Once the chaplains were able to use the H-5 to consistently identify spiritual concerns, the focus was shifted to developing consensus around scoring the severity of spiritual distress.

To ensure the larger spiritual care team was using the assessment in clear and consistent ways, the spiritual care manager conducted routine chart reviews, provided positive and developmental feedback and emailed members of the team strong examples of both complex and simple uses of the assessment. For chaplains who struggled with using the H-5, the manager provided 1:1 conversation to help them understand the H-5’s value and purpose. The manager helped chaplains gain mastery of the H-5 by discussing complex cases and how to use the H-5 to identify spiritual concerns and resources observed. Chaplains were also connected with members of the pilot group for additional support and assessment-clarifying conversations. Most of the chaplains on the team were able to confidently use the new assessment within a few months.

Phase 4 – Feedback and Follow-Up Interviews

The final phase of the project involved the spiritual care manager gathering feedback on use of the H-5 assessment. The manager facilitated individual interviews with members of the team about their experience using the H-5 at 2 months post-training, while they were still developing confidence using the model. At 1 year post-training, interviews were conducted again to discuss how using the H-5 had impacted their clinical practice and documentation.

Results

The H-5 was developed by hospice chaplains specifically for use in hospice programs to address their spiritual assessment and care planning requirements. The H-5 is intended to be used at each spiritual care visit to identify and track spiritual concerns through a patient’s end-of-life process. The H-5 preface includes the options to specify the assessment type and scope. The Assessment Type indicates whether it documents an initial or follow-up assessment, or “N/A” (with the option to provide a reason why the assessment may not have been completed on a particular visit.) The Assessment Scope indicates whose concerns the documentation presents: the patient’s, the family’s or both. The pilot group determined that the assessment needed to be flexible enough to assess both patient and family concerns. This flexibility enabled continuity of assessment and care throughout the end-of-life trajectory. In hospice care, patients experience declining capacity as part of their disease progression, limiting direct engagement and leading family caregivers to assume an increasingly central role in care. The pilot group found that including family concerns in their assessment supported this relational shift. Tracking family spiritual distress also identified anticipatory bereavement support needs, surfacing concerns that may otherwise have remained undocumented.

H-5 Themes and Subthemes

Five of the themes from the PC-7 were found to be highly compatible with hospice care. Small revisions were made to be inclusive of family concerns, if indicated. This approach allowed chaplains to move fluidly between patient and family concerns over the course of care. Two PC-7 themes, “Issues related to making decisions about treatment” and “Other dimensions,” were determined to be less applicable to the hospice setting and were not included (Table 2).

Table 2.

H-5 Spiritual Assessment of Spiritual Concerns in Hospice Patients and Their Families

Assessment Type
o Initial
o Follow-up
o N/A - Standard assessment not used due to the patient’s limited ability to verbally engage and no family present to engage
o N/A - Standard assessment not used as not appropriate for this visit
Assessment Scope
o Only the patient’s spiritual concerns and resources
o Both the patient’s and the family’s spiritual concerns and resources
o Only the family’s spiritual concerns and resources

Themes	Indicators	Score
Need for meaning in the face of suffering	• Difficulty coming to terms with changes in things that once gave meaning to their life They are grieving ____________ • Despair or hopelessness about the changes they are experiencing, including ____________ • Questions the meaning of life – whether the life they have lived has meaning • Painful regret about some or all of life lived
Need for integrity/a legacy	• Questions whether they have made a positive contribution to loved ones, others or society• Has tasks that must be completed before they are ready to die, such as ____________• Reminiscing about their life is painful• Distressed about having lived an imperfect life
Concerns about relationships	• Unfinished business with significant others such as ____________• Concerns about their family’s ability to cope without them• Concerns that they are a burden to family/friends• Isolation or lonelinessPatient’s Experienced Level of emotional/relational support • Feels emotionally/relationally connected and supported • Feels some unmet emotional/relational needs, and currently has the ability to engage supportive resources • Feels moderate unmet emotional/relational needs, and currently has reluctance or limited ability to engage supportive resources • Unable to assess
Concerns about dying and death	• Concerns about dying/being unready for death. They are hesitant, reluctant, or avoid considering/discussing mortality or associated issues• Impatient for death• Concerns that illness or death will prevent their participation in important events, including ____________• Torn between letting go and continuing to fight their disease• Uncertainty or fear about life after death. They are ____________• Fear of pain or fear of pain in dying
Concerns about spiritual struggles	• Wonders whether they are being abandoned or punished by God• Concerned about God’s judgment, forgiveness, and/or love• Questions God’s love for them• Feels God is not answering their prayers to ____________• Expresses anger with God• Alienated from former meaningful connections with religious institutions or leaders• Identifies a need for assistance to perform important rituals, religious or otherwiseThat ritual is: ______________
Each main category is given a score based on the following criteria:[0 = no evidence of unmet need, 0* = further assessment needed to clarify needs, 1 = some evidence of unmet need, 2 = substantial evidence of unmet need, 3 = evidence of severe unmet need].Total Spiritual Distress Scoring SystemThe distress score of each category is added to determine severity of distress:[0-5 = low, 6-10 = Moderate, 11-15 = High]		Total

H-5 Assessment model developed by Providence Hospice 2022, adapted from PC-7 Fitchett et al. ¹⁷

Need for Meaning in the Face of Suffering

This PC-7 theme was particularly salient for the hospice context, as patients often wrestle with how to cope with changes and losses they are experiencing in their bodies and lives. Two subthemes from the Need for integrity/a legacy section of the PC-7 (“Questions about the meaning of life” and “Painful regret about some or all of life lived”) were moved into this theme, as the pilot group felt that there was significant overlap between physical suffering and existential suffering.

Need for Integrity/A Legacy

This category from the PC-7 was also deemed highly applicable to hospice patients. Patients nearing death often exhibit a strong need to evaluate their past, present and future.

Concerns About Relationships

This theme from the PC-7 was fully included. The H-5 includes an added prompt to specifically identify unfinished business. The H-5 also adds a prompt to assess a patient’s experienced level of emotional/relational support. This cue was added to address the questions asked in the CMS Consumer Assessment of Healthcare Providers & Systems (CAHPS) Hospice Survey about how much support the patient and family received while on hospice.

Concerns About Dying and Death

This theme remained the same as the PC-7 “Concern or fear about dying or death,” with added prompts to identify upcoming important events as well as uncertainties or fears.

Concerns About Spiritual Struggles

This theme remained the same as the PC-7 “R/S Struggle” theme, with added prompts to identify specific concerns related to prayers and rituals.

Scoring System

The quantifiable element of the PC-7, the scoring system, was carried over into the H-5, with an additional prompt to calculate the Total Spiritual Distress Score. The pilot team developing the H-5 found this score was a helpful way to confirm which patients and families were experiencing the highest levels of spiritual distress, allowing them to personalize the patient’s care plan with more accuracy.

Chaplain Experience of Using the H-5

During Phase 4, chaplains provided feedback about using the model via interviews with the spiritual care manager. One chaplain shared that using the H-5 “improved the visit as it reminds me of what is important, [to] not get lost in the weeds and circle back to existential issues.” Another chaplain talked about how using the H-5 increased the consistency of their care over time: “I look back at previous chart notes to understand a patient’s well-being trajectory.” Some of the chaplains on the team were highly experienced clinicians using a formal assessment tool for the first time. One remarked “[The H-5] gave me framework to take what I’m already doing well and plug it into something that I can quantify.”

A few chaplains appreciated the H-5 for how it communicated their expertise and professionalism to the broader hospice care team. A newer chaplain who was getting established with their IDT reflected that documenting with the H-5 “...validates what we do with our team… it’s not just fluffy feeling stuff.” Chaplains reported that IDT members appreciated what to expect from a chaplain assessment and where to quickly find it. A chaplain who covered a large geographical region with another chaplain noted that using the H-5 “... helps build continuity of care, as I could more easily offer care to [the other chaplain’s] patients … I knew where to focus.”

Hospice care team members are required to forecast how many visits they are planning to provide to a patient within a given timeframe. Multiple chaplains shared how the H-5 helped them determine an appropriate visit cadence. One chaplain shared “It’s helping me just having these numbers and scales. A patient asked for weekly visits, and I didn’t think his needs indicated this [frequency]... but seeing the acuity of the need was high changed my mind.” Another chaplain similarly noted “It makes me more conscious… I saw a patient for an initial [assessmen]t and scoring was low to medium, [then the] next visit it was high, so I saw them sooner – it’s a pinpointing of need through the score.”

After using the H-5 for a year, the chaplains reported increased efficiency as they could focus their patient care around key areas of distress and document it clearly. Having a more formal assessment tool decreased the cognitive burden of documentation, while increasing the consistency and quality of what was documented. Patient care plans more closely addressed the patient’s felt needs and concerns. The H-5 themes became an internal guide, allowing chaplains to focus on areas of distress they may have missed in the past.

Discussion

The H-5 spiritual assessment tool fills the need for a standard, quantifiable model for assessment of spiritual concerns of hospice patients and families. It is based on the PC-7, a quantified model for assessing spiritual concerns of palliative care patients, adding focused prompts and a scoring structure designed to surface end-of-life distress and guide timely interventions.^17,18 It adds to a group of models for spiritual assessment that offer quantified summaries of patient’s spiritual concerns which include the SDAT^15,16 and the ONC-5.¹⁹ The H-5 joins these recent efforts toward evidence-based interprofessional work,²² and enables hospice spiritual care providers to identify support needs in line with US hospice program objectives and requirements.

Inclusion of Family Concerns in Hospice Assessment

The impetus to include family concerns in the H-5 alongside the patients’ is consistent with existing published studies in hospice and palliative care.^4,23-25 Family members often perceive patient spiritual and existential distress and even experience it themselves. A recent study on spiritual concerns and quality of life for cancer patients receiving hospice care noted a “mutuality of spirituality between patients and family caregivers” that impact a patient’s outlook and well-being.^11(p329)

Assessing family concerns is also compatible with the CMS requirement that hospice care agencies provide bereavement counseling to survivors.⁶ CMS administers the CAHPS Hospice Survey which specifically asks survivors how much emotional support the hospice patient and their family received, as well as whether they felt their religious or spiritual beliefs were supported.²¹ Survey scores directly impact hospice reimbursement rates from CMS. Apart from these fiscal incentives, the chaplains developing the H-5 felt it was essential that a hospice spiritual assessment be flexible enough to pay equal attention to the spiritual concerns of both patient and family.

Impact on Chaplain Clinical Practice

When the pilot group presented the H-5 assessment to the broader spiritual care team in Phase 3, there was initial resistance to scoring the level of spiritual distress of patients and families. This discomfort with using a formal assessment model, especially those that attempt to quantify distress, is consistent with past published literature on chaplain documentation outlook.^26,27 However, when the spiritual care manager completed chaplain feedback interviews about the H-5 at 2 months and 1 year, it revealed that the care being provided was becoming more patient-centered.

Chaplains appreciated the H-5 for how it communicated their expertise and professionalism to the IDT. Chaplains self-reported that the H-5 framework helped them have more conscious intentionality in their care and communication of patient concerns with the IDT. This perception is similar to the findings reported by Pierce²⁸ after implementing the use of a spiritual assessment with patients on a palliative care unit. It was also noted by chaplains testing the ONC-5 spiritual assessment during its development, who indicated appreciation for how it helped them communicate with their clinical teams and offered organization for their thoughts during patient encounters.¹⁹

Limitations

The major limitation in the H-5’s development was the absence of formal reliability testing. Chaplains discussed their assessment/scores of informally shared cases, but no formal testing was conducted. An additional limitation was no formal testing of validity, whether chaplains’ H-5 scores of spiritual distress are consistent with patient and family experience. Areas for future research include formal testing of reliability and validity similar to the testing that has been conducted with other quantifiable models for spiritual assessment.^16,18,19 A final limitation is that the tool was developed and used in the Pacific NW, the region in the US with highest proportion of population with no religious affiliation.²⁹ Chaplains working with this population found the H-5 offered an effective way to summarize the spiritual concerns of these patients and families. Future research is needed to determine if chaplains working with patients in regions of the country with different engagement with religion find the H-5 to be similarly useful.

The H-5 is part of a group of quantifiable models for spiritual assessment, including the PC-7 and ONC-5 that have been recently developed in the U.S.^17,19 While there are important similarities in these models, approaches or revisions in 1 model have not been applied to others and thus they are not consistent. For example, the approach to the total score for the H-5 differs from that for the PC-7 and ONC-5. Addressing this inconsistency is also an area for future work. Notwithstanding these limitations, the H-5 has gained interest in chaplaincy and hospice networks. Chaplains who work in hospice programs in other regions have requested access to the tool and found it highly useful.

Conclusion

This article documents the development of the H-5, a quantifiable spiritual assessment that can be used by hospice chaplains to identify spiritual concerns of hospice patients and their families. We hope that by sharing this assessment model, chaplains in other hospice agencies and regions will have a guide to document patient and family concerns, individualize patient care plans, focus their spiritual care interventions, and communicate more effectively with their interdisciplinary teams. We also hope that the H-5 continues to be refined by research teams interested in testing its reliability, validity, and clinical usefulness.

Footnotes

Acknowledgments

The authors express sincere gratitude to the chaplains who participated in the H-5 development pilot group: Jo Laurence, Pandora Canton, Mary Peterson, Riley Sophia, and John Telyea. We also thank Leigh Mackintosh who provided insight on hospice spiritual assessment documentation and Patricia K. Palmer who provided guidance on scoring within assessments.

ORCID iDs

Stacey Michelle Morgan

Brianne Reimer Kruger

George Fitchett

Author Contributions

Stacey Michelle Morgan: Conceptualization, Methodology, Investigation, Writing – review & editing

Brianne Reimer Kruger: Writing – Original Draft, Investigation, Visualization

George Fitchett: Writing – review & editing, Supervision

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

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

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