Development,Implementation,and Evaluation of a Social Work Needs Assessment Tool: An Innovative Approach When the Palliative Care Request Is Unclear

Introduction

Palliative care focuses on whole person care for people with serious illnesses. ¹ To do so, providers must acknowledge that sources of distress may arise in domains other than the physical body, an idea best captured by Cicely Saunders' concept of total pain: “the suffering that encompasses all of a person's physical, psychological, social, spiritual, and practical struggles.” ²

The acknowledgment that serious illness can create not only physical distress but also suffering in psychological, social, spiritual, and practical realms speaks to the scope of palliative care and the necessity of an interdisciplinary team. Determining the specific needs and greatest distress of a patient and/or patient's social support system requires thoughtful purposeful assessment. The objective of this article is to present a palliative care needs assessment tool, and to discuss the process and outcomes of implementation. The tool is designed to identify palliative care needs and total pain of a patient/patient's social support system (hereafter this will be referred to as “patient”) when there is no initial clarity on the appropriate palliative care intervention; it also aims to assess readiness to discuss future planning and offer specific language as a guide.

Background

Throughout the years, palliative care has evolved in its scope and evidence base. During its infancy, palliative care was the most utilized in cancer patients and most often near the end of life. Throughout the years, however, the scope expanded to include all life-limiting illnesses throughout disease trajectory.^3,4 As palliative care services expanded, the evidence followed suit, demonstrating that earlier initiation of palliative care benefits patients and families throughout the trajectory of illness.^3–7

The expansion of palliative care to earlier points in a disease trajectory required palliative care teams to adapt. Earlier initiation of palliative care can mean that referring providers may initiate referrals based on perceived burden of illness, or a palliative care service may utilize automatic triggers, frailty indices, or the “Surprise Question.”^3,8–10 These referrals often have no imminent treatment decision/lack a specific request. The challenge for the palliative care team in these situations is to identify the appropriate need and intervention, utilizing the interdisciplinary team centered to the patient. A thorough assessment of “total pain,” patient's unique needs, and, crucially, the patient's lived experience of their illness is necessary to yield information that guides the next step of the palliative care service.

The perspective of the patient regarding areas of symptom burden, illness trajectory, and prognosis are essential in developing a palliative care treatment plan.^3,11 Ideally, palliative care interventions should stem from assessment of need in conjunction with a medical determination of illness trajectory or a referring provider's perception of the case. Eliciting the perspective of the patient and their readiness to participate in any advance care planning is fundamental if the goal is to partner and align.^12,13

Methods

To meet the challenge of identifying needs that cover the scope of palliative care interventions, and capture the perspective of a patient, a comprehensive needs assessment tool was created based on the domains laid out in several previously created assessments.^14–19

A group of five palliative care Licensed Clinical Social Workers (LCSWs) on an inpatient service, seeking input from the interdisciplinary team, amended and finalized the assessment over the course of several months (Appendix A1). All LCSWs have specialty training in palliative care, with one social worker holding the Advanced Palliative and Hospice Social Work Certification (APHSW-C) certification. During this process, the focus was on selecting the questions that elicited the most information from patients and/or families. The overarching goal remained to assess readiness to engage with palliative care, to assess multiple palliative care domains, and to better understand the lived experience of the patient and their support system. Put simply: after listening to the patient, is there an appropriate palliative care intervention, and is there readiness to engage in these interventions?

Four outcomes were selected with the intent to analyze the effectiveness of the assessment based on the previously stated intent. Operating definitions were established to ensure continuity when evaluating outcomes (Table 1).

After finalizing the questions and outcomes, the LCSWs conducted the assessments with patients in an inpatient hospital setting. The referrals came from two main sources: direct referrals from attending physicians and referrals from an automatic trigger protocol based on utilization of the medical system and disease burden. To be appropriate for the assessment, a patient needed to meet certain criteria (Table 1). First, all patients were adults with a life-limiting illness. Second, none of the assessed patients were in a symptom crisis, were acutely decompensating, nor faced an urgent treatment decision. If a patient did not have cognitive capacity to complete the assessment, it was completed with the caregiver. Finally, all patients had some experience living with their illness; it was not appropriate to conduct this assessment with a patient very recently diagnosed with a life-limiting illness.

It is worth noting that although the needs assessment template outlines a number of questions, the questions did not need to be asked in order, nor did every question need to be asked. However, to successfully complete the needs assessment, all domains need to be addressed. Allowing for flexibility in the conduction of the needs assessment permitted the conversation to evolve organically and provided space for a skillful follow-up if later discussion was a more appropriate way to address a domain.

Needs assessments were documented using a template in the electronic medical record. Fifty randomly selected needs assessments conducted over the course of three months were then chosen, and a chart review was completed to determine if the assessment yielded the desired outcomes.

Results

Table 2 illustrates the data collected from the 50 randomly selected needs assessments reviewed. The highlights include 23 (46%) resulting in an outpatient supportive care referral, 50 (100%) eliciting a patient value(s), 31 (62%) eliciting a treatment preference, and 44 (88%) having a documented decision maker.

Conclusions

The purpose of this tool is to thoroughly assess palliative care needs when the appropriate palliative care intervention is unknown. To accomplish this, specific language was offered as a guide to assess readiness to discuss future planning and to understand the lived experience of a patient. Owing to recent debate around advance care planning, ²⁰ particularly around the utility of treatment preferences, our assessment focused not only on establishing treatment preferences but also in documenting the values/priorities that a patient links to their overall health.

The four outcomes analyzed were consistently met, suggesting that this tool has value in assessing readiness for a palliative care intervention, eliciting and documenting values, and in decision maker documentation. These four outcomes are valuable in capturing where a patient currently is in their disease trajectory, while also providing a potential framework for future decision making.

As a group, we were most surprised that this tool was so successful at capturing values. Ideally, the elicitation of these values would help to encompass the lived experience of a patient/support system and help guide future palliative care—and, potentially medical—interventions. Even if a patient is not imminently facing a treatment decision, it helps frame a patient's future hopes, which can guide providers as to how to present treatment options at later encounters. A possibility for future research would be exploring if values are more stable than hypothetical treatment decisions and could be helpful in attaining goal-concordant care.

Aside from the outcomes measured, the group expressed that often the needs assessment itself was an intervention, although one more difficult to measure or describe. A sampling of the insights from the social work team are displayed as follows (Table 3).

There are notable weaknesses in our tool. First, the outcomes do not reflect the appropriateness of the referrals, only the manner in which referrals are handled. It should not be considered a failing of the assessment tool if a patient has no needs presently. Furthermore, there is a possibility that patients/families may not currently have needs but may have future needs that could not be captured by this one-time intervention. Social workers also commented that the timing of when to conduct the needs assessment could be difficult, as well as a potential barrier of facing other distractions during the busy hospital stay. Finally, our particular palliative care program is supported by a robust outpatient home and clinic palliative care continuum. Frequently, the assessment led to a referral for future discussion but not during the inpatient stay. This is a luxury that many sites would not have.

The consensus among the greater interdisciplinary palliative care team is that the tool was useful in eliciting the readiness of a patient and their social support system, assessing a variety of domains, and determining the appropriate palliative care intervention. Furthermore, the team found the tool useful in triaging utilization of each discipline's strengths and efficiently addressing patient needs. The outcomes that were analyzed were sufficiently promising, and the needs assessment tool is now a standard part of practice for the team.