Development of the CASH Assessment Tool To Address Existential Concerns in Patients with Serious Illness

Introduction

Existential suffering in patients with serious illness significantly impacts quality of life. Despite increased attention to its prevalence and importance in recent years, it remains a challenge to define, assess, and manage accurately. As part of a comprehensive approach to patient care, palliative care specialists address existential concerns in addition to the physical, psychological, and social needs of patients with serious illness. However, inherent difficulties in addressing existential suffering include lack of a unified definition, a paucity of data on interventions, and inadequate training in this area. Thus, improving upon understanding and practice in the existential domain is a topic of continued interest for palliative care providers.^1,2

In the medical literature, the term “existential” relates to identity, connectedness, hope, and meaning or purpose in life, and is often associated with spirituality.^1,3 Well-recognized domains of existential suffering include the loss of meaning or purpose, a sense of hopelessness or isolation, the loss of autonomy and associated fear of being a burden to others, and the fear of death and dying. Existential suffering or distress is a common and debilitating symptom among patients with serious illness, especially at the end of life. ¹

Several assessment tools have been developed to address existential suffering. Many consist of self-report surveys with yes–no questions or Likert-type scales.^4–11 Although effective and perhaps more convenient to administer and measure, these tools may limit meaningful interaction and dialogue between patient and provider. Such tools may be less likely to identify related issues, such as obstacles and assets in coping with distress. Thus, a more dialogue-oriented approach aimed at understanding patients' experience of their illness utilizing open-ended questions, while potentially more time-consuming, may provide the most comprehensive approach to evaluating existential distress.^1,12–14 Furthermore, such an approach may dually serve as an intervention by achieving a therapeutic awareness and understanding of these existential issues by both patient and health care provider. ²

As a quality improvement project, our palliative care team designed a method of existential inquiry for use in the consultative process for patients with serious, chronic, and/or life-threatening illness. Our goal was to identify existential concerns in these patients and communicate these findings with the primary team. In doing so, we hoped to engender awareness of this issue amongst health care providers and its importance in the comprehensive care of patients with serious illness. We felt that eliciting existential concerns would also deepen our understanding of these patients and promote empathy. In addition, we hoped to more effectively identify patients appropriate for referral to our chaplain and/or psychologist for more intensive focus on existential concerns.

Methods

Several members of the interdisciplinary palliative care team at Virginia Commonwealth University (VCU), an urban academic tertiary care center, participated in this quality improvement project. Members consisted of a palliative care attending physician, four fellows, two advanced practice nurses, and a chaplain. The team used their collective experiences to develop questions intended to provide insight into how serious illness affects patients, as well as to identify strengths and weaknesses in coping with illness. We utilized a dialogue-oriented approach with a short set of inquiries aimed to yield high quality information without significantly increasing consultation time. The final existential assessment tool consisted of the four questions described in Table 1.

We chose open-ended questions with a broad scope to enable individual interpretation and to avoid bias, as well as to facilitate interaction and development of rapport between the palliative provider and patient. We realized that the broad interpretation of these questions might result in identification of issues beyond typical existential domains. We felt that this risk was acceptable because we aimed to elicit from patients the current issues of principal importance to them. Gaining such information, even if not directly existential in nature, would still enhance the quality of the consult and improve patient care and understanding.

To aid the palliative care team in remembering these four questions, we devised the mnemonic CASH, with each letter representing the primary goal of each question as described in Table 1. During consultation on patients with a serious, chronic, and/or life-threatening illness, members of the palliative care team asked the CASH questions as a supplement to the consultation, typically at the beginning or the end of the patient evaluation. The questions were asked together in the order in which they appear in Table 1. To elicit realistic and relevant responses, team members were encouraged to frame the questions in terms of the patient's current state of illness. For example, “Given what you know about your cancer right now, what are you hoping for?” If patients indicated they did not understand a question, the palliative consultant attempted to rephrase the question for better understanding. If patients still did not understand the question after an attempt to explain it, the consultant moved on to the next question. Palliative consultants frequently repeated back answers to patients to appraise validity. The answers to these questions were immediately documented in the patient's electronic medical record within the consult note. In addition, answers were often verbally communicated to the consulting team by the consultant. The palliative care consultant contacted the chaplain and/or psychologist on the palliative interdisciplinary team to further evaluate those patients identified as having significant existential distress.

In order to evaluate the appropriateness of our tool, we designed brief surveys, one for the primary physicians caring for patients who underwent the existential assessment; and one for the palliative consultants who administered the CASH assessment. Immediately after the initial palliative consult was completed, physician members of the patient's primary team received the anonymous electronic survey via e-mail. Survey responses were either yes–no or on a Likert scale for ease of completing the survey. Space was also available for supplementary written comments. Similarly, upon completion of the quality improvement project, palliative care fellows and advanced practice nurses who performed the CASH assessment also received an anonymous electronic survey via e-mail. Again, the survey consisted of yes–no questions and Likert scales with space for additional comments.

Results/Procedures

Examples of patient responses to the CASH questions are outlined in Table 2. This insightful qualitative information reflects patients' beliefs, priorities, and preoccupations in relation to their illness. Patients did not always respond to each question; lack of response was thought to be due to poor understanding of the question being asked. Some questions yielded more information than others, but the question of highest yield varied from patient to patient. In most cases, however, at least one of the four questions would resonate with the patient and provide insight into their existential concerns.

Eleven surveys were sent to primary team physicians whose patients had received a CASH assessment as part of a palliative care consultation, and nine surveys were completed (81% response rate). The survey respondents were all housestaff (interns or residents) in the VCU internal medicine residency program and all had requested an inpatient palliative care consultation. Results of this small survey were overall very positive (Table 3). Eight of nine (89%) primary providers appreciated the existential assessment and found that the assessment helped them better understand their patient. Seven physicians (76%) stated that the assessment had a positive impact on their practice, and 5 (56%) noticed an improvement in their care of the patient. None of the physicians surveyed had negative responses to the survey questions. Six of these physicians (67%) relayed the information from the existential assessment to other providers.

Six palliative care fellows and nurse practitioners were surveyed upon completion of the quality improvement project (Table 4). Two of the questions were omitted by one of the respondents yielding an 83% response rate for these questions, which are indicated in the table with total number of respondents (total n=5). However, the remaining three questions were answered by all respondents and are indicated in the table with a total n=6. Five respondents (100%) enjoyed asking the CASH questions, while five of six respondents (83%) felt that this project would help them design other quality improvement projects in the future. Reasons for not asking CASH questions included inappropriateness to the consult (e.g., patient did not have a terminal illness), lack of perceived patient/family receptiveness, or consultants being too busy. In response to CASH questions, palliative consultants felt that patients/families seemed happy they were asked or seemed puzzled by them, but none seemed angered by them. Half of the respondents suggested changes to care based on the patients' responses. None of the survey respondents felt that additional questions should be added to CASH.

Discussion/Lessons Learned

In our small group of patients, the CASH assessment tool was useful in eliciting the existential concerns of patients with serious illness. Moreover, survey results showed that the CASH assessment improved primary providers' understanding of their patients and enhanced the care they provided these patients. Both primary providers and palliative consultants considered the tool to be helpful. Notably, the majority of palliative care consultants indicated that they had enough time to perform the assessment during their consultation. Thus, as a brief set of questions with an easy-to-remember mnemonic, the CASH assessment tool is feasible for a busy palliative consult service and can augment the care of patients with serious illness.

The broad scope of the CASH questions has both advantages and disadvantages. As mentioned previously, the questions were designed to allow for individual interpretation and to limit bias. However, on several occasions, patients had difficulty interpreting the meaning of a question and were unable to answer it. We found that the ease or difficulty with each question varied with each patient. Perhaps the understanding of questions and the quality of answers would enhance with repeated CASH assessments in the same patient over time. The CASH questions are fairly basic and easy to remember, which may facilitate broader application of this tool by providers outside of the palliative care subspecialty. These questions are general enough to detect a variety of issues that are of principal concern to patients, but that may be outside of the typical existential domain. As previously stated, we feel that any information gained from this assessment tool is likely to help accomplish the goal of improved patient care and understanding, even if the information is not directly existential. The CASH assessment tool may also be useful as a segue to discussion about goals of care, advanced directives, and code status.

Next Steps

We recognize the need to further evaluate the difficulty patients had in answering all of the CASH questions in order to ensure we are using the best set of questions. As previously mentioned, the question with which patients had difficulty varied among patients; thus we were unable to identify a particular question that needed to be revised or omitted. However, we have formulated two simple approaches aimed at enhancing patients' overall understanding of the CASH questions. First, we will implement an introduction for clinicians to use when asking the CASH questions in order to place them in a more relevant framework. For example, “You may have a lot on your mind while you are dealing with this illness. I have a few questions to ask you that might help me understand what you're going through.” In addition, we will repeat the CASH questions to the same patient over time, which will familiarize the patient with these questions and may generate more insightful answers as patients become accustomed to the questions. In order to further refine the CASH questions in the future, we plan to include a survey of the patients who received the CASH intervention to assess how they perceive the assessment and to elicit feedback regarding the CASH questions. We would use patient responses to assess which aspects of the questions are effective and which should be changed in order to enhance their appropriateness.

We feel that the CASH assessment tool has potential for more widespread application as a means to evaluate existential concerns, improve understanding of patients, and enhance overall patient care. The positive results of this quality improvement project merit more rigorous evaluation of the CASH assessment tool. After further refining the CASH questions, we plan to perform an official clinical study with a larger sample size and ideally in multiple centers to evaluate the tool across different settings and patient populations. A more formal demonstration of the validity and reliability of the CASH tool will also be necessary. We plan to continue implementation of this tool at our institution and hope to further refine the tool through more dedicated research.