The Patient and Family Member Experience of Financial Stress Related to Critical Illness

Abstract

Background: The experience of financial stress during and after critical illness for patients and their family is poorly understood.

Objectives: Our objectives were to (1) explore common financial concerns, their contribution to emotional stress, and potential opportunities for interventions to reduce financial stress in patients with critical illness and their family members; and (2) confirm patient and family members' willingness to provide information on this topic.

Design: Cross-sectional survey study.

Setting/Subjects: Patients (18/24, response rate 75%) and their family members (32/58, response rate 55%) from two prior randomized trials at an urban, level 1 Trauma center.

Results: Ten (56%) patients and 19 (70%) family members reported financial worries during an intensive care unit (ICU) stay; 70% of both groups reported financial worries post-ICU discharge. Thirty percent (3/10) of patients and 43% (10/23) of family members who were not asked about financial concerns by hospital staff wished that they had been asked. Both patients and family believed that it would have been helpful to have information about insurance coverage, interpreting hospital bills, and estimated out-of-pocket costs. Among patients, 47% favored receiving these services after the ICU stay (7/15), while 20% (3/15) preferred these services in the ICU; 73% of family members preferred receiving them during the ICU stay (22/30), while 27% (8/30) preferred these services after the ICU stay.

Conclusion: Our findings suggest that the experience of financial stress and the worry it causes during and after critical illness are common and potentially modifiable with simple targeted interventions.

Introduction

Financial stress is strongly correlated with health-related quality of life among outpatients with conditions such as cancer, indicating that financial stress is an important patient-centered outcome.¹ Although we know that patients and family members experience financial stress during and after critical illness,^2–7 metrics are lacking that quantify this stress or provide insights into specific financial stressors and interventions that might alleviate these concerns. Therefore, we conducted a survey-based study to explore causes of financial stress, the degree to which financial concerns cause distress, and attitudes toward services that could possibly reduce financial distress. Our rationale for this study was also to assess patient and family members' willingness to provide information on this sensitive topic and to confirm that addressing financial stress among those who have experienced critical illness can be feasibly performed in future investigations. We administered this questionnaire to a sample of patients with a history of critical illness who were mechanically ventilated and their family member caregivers; this study provides initial data from the questionnaire.

Methods

Setting and study population

Participants were enrolled from three intensive care units (ICUs) (medical/cardiac, trauma/surgical, neurology/neurosurgical) at a level 1 trauma hospital in Seattle, Washington.

Eligible participants included family members of critically ill patients requiring mechanical ventilation who survived their critical illness. Patients were ≥18 years old and had previously participated in one of two randomized trials: the Coping Skills Training versus Education Program (CSTEP)⁸ or the Facilitating Communication Study (FCS).⁹ Both trials used a systematic sampling strategy to identify consecutive eligible patients; participation rates for family members were 49% (CSTEP)⁸ and 76% (FCS).⁹

Measures

Separate questionnaires were developed for patients and family members. Questions were derived from a review of published questions¹⁰ as well as inputs from social workers (n = 5), financial counselors (n = 2), health economists (n = 3), and ICU researchers and clinicians (n = 3). The survey was reviewed and piloted for content and clarity by participants of a post-ICU discharge support group¹¹ and members of the Cambia Palliative Care Center of Excellence Community Advisory Board.

Key components of financial stress include both objective financial burden (e.g., lost income, unemployment) and subjective financial distress (e.g., worry from perceived financial prospects).¹² Our questions addressed experiences during and after ICU discharge, and encompassed three domains: (1) objective measures related to financial well-being, including employment, household finances, and hospital bills/debts; (2) subjective measures of finance-related stress and burden; and (3) attitudes toward usefulness of services to reduce financial worry. Survey questions are available in the Supplementary Data.

Recruitment and data collection

Participants were contacted by mail in March 2017. Mailings included an initial letter with opt-out postcard, a second mailing with questionnaire and US $5 incentive, and two additional mailings to nonrespondents at four and six weeks. The time between respondents' participation in the original study and recruitment to this study ranged from 2 to 6.5 years. The University of Washington institutional review board approved the study protocol (No. 52641).

Analysis

SPSS Version 19 was used to obtain frequency distributions for categorical variables and means with standard deviations for continuous variables.

Results

Participant demographics

The sample included 18 patients and 32 family members (Table 1 and Supplementary Table S1). The response rates for patients and families for this survey were 75% and 55%, respectively (Supplementary Table S2).

Table 1.

Characteristics of Participants

Characteristic	n (%)a
Patients (n = 18 unless otherwise noted)
Female	4 (22.2)
Agea	54.0 (16.2)
Education
High school graduate or less	6 (33.3)
Trade school or some college	9 (50.0)
Four-year college degree	1 (5.6)
Graduate work	2 (11.1)
Currently married	8 (44.4)
Annual pretax household income before hospitalization (n = 16)
$0–$25,000	5 (31.2)
$25,001–$50,000	6 (37.5)
≥$50,001	5 (31.2)
Employment status before hospitalization (n = 17)
Employed full-time	8 (47.1)
Employed but on leave	1 (5.9)
Retired	3 (17.6)
Disabled	2 (11.8)
Other (full-time student; disabled but manage apartment; retired but self-employed)	3 (17.6)
Insurance
Medicare or military	6 (33.3)
Medicaid	3 (16.7)
Commercial	9 (50.0)
None	4 (22.2)
Apache total scorea	22.2 (6.8)
Days in ICUa	8.8 (7.0)
Caregivers (n = 32 unless otherwise noted)
Female	26 (81.3)
Agea (n = 31)	57.0 (10.9)
Currently married (n = 10)	9 (90.0)
Annual pretax household income (n = 27)
$0–$25,000	6 (22.2)
$25,001–$50,000	3 (11.1)
≥$50,001	18 (66.7)
Relationship to patient
Spouse/partner	13 (40.6)
Parent	11 (34.4)
Other	8 (25.0)

^aFor continuous measures (age, Apache score, and days in ICU), the mean values (SD) were substituted for n (%).

ICU, intensive care unit; SD, standard deviation.

Patients: Approximately one-third of patients (5/16) had an annual pretax household income of >$50,000 before hospitalization, and 47% were employed full-time before hospitalization (8/17). Fifty percent (9/18) had commercial insurance (Table 1).

Families: Nearly half of family (13/32) were the patient's spouse or partner. Approximately two-thirds (18/27) had an annual pretax household income of >$50,000 (18/27).

Objective measures of financial well-being

Patients: 47% of patients (8/17) with employment data reported reductions in employment attributable to their illness and 41% stopped working (7/17). Half of patients had dipped into savings (8/16), and 44% of patients reported incurring debt because of medical bills (8/18).

Families: 13% reported post-ICU discharge employment changes as a result of the patient's ICU stay (3/24). Approximately half of family members reported dipping into savings as a result of caregiving expenses (15/29).

Subjective measures of finance-related stress

Patients: Reflecting back to the ICU stay, 56% patients said that finances had been a “somewhat, quite or extremely important” source of worry, and a similar percentage indicated that they worried “some, most, or all of the time” (10/18). “Household bills” and “lost income from work” were the most common sources of worry. After hospital discharge, 70% worried about finances “some, most, or all of the time” (12/17); 35% said that finances were an extremely important source of postdischarge worry (6/17).

Families: 70% family members reported worrying about finances “some, most, or all of the time” during the patient's ICU stay (19/27). Hospital bills, household bills, job security, lost income from work, and food/parking/lodging/transportation during the hospital stay were all reported sources of worry. Forty-six percent felt that being a caregiver had increased their financial worries (12/26).

Attitudes toward services to reduce financial distress

Patients and family members responded similarly to questions about desired services. Sixty-three percent of patients (10/16) and 85% of family members (23/27) reported that they were not asked about financial concerns during the ICU stay. Among those who were not asked about financial concerns during the ICU stay, 30% of patients (3/10) and 43% of family members (10/23) would have liked to be asked. Both patients and family members felt that information about insurance coverage, interpreting hospital bills, and estimated out-of-pocket costs in and after the hospital stay would be helpful (Fig. 1). Among patients, 47% favored receiving these services after the ICU (7/15), while 20% (3/15) preferred these services in the ICU; 73% of family members preferred receiving them during the ICU (22/30), while 27% (8/30) preferred these services after the ICU.

FIG. 1.

ICU services to reduce financial worry. Patient and family member responses to potential services that may have reduced financial worry. *Response options varied for respondents, with patients offered yes, no, and not sure, and families offered yes, no. FMLA, Family and Medical Leave Act; ICU, intensive care unit.

Discussion

Our study revealed several important findings: (1) financial concerns were a source of worry for most critically ill patients and family members; (2) patients more often preferred receiving financial information after ICU discharge with family members preferring to receive it in the ICU; and (3) the majority of participants felt that it would be helpful to receive information about interpreting hospital bills, understand insurance coverage, and anticipate out-of-pocket costs.

Our finding that financial stress affected the majority of study participants speaks to the high prevalence of financial stress and why it is important to understand how this impacts patients and family members during and after critical illness. While in our work we have previously found financial stress to mediate symptoms of anxiety and depression in patients with critical illness, few additional studies are available to describe the associations between financial stress and patient- and family outcomes.² Most studies in this area have been conducted with patients with cancer, and have reported its association with decreased quality of life,¹³ higher symptom burden,^14,15 poor adherence to treatment,¹⁶ and poor survival.¹⁷ Patients with advanced cancer have reported financial stress to be more severe than physical, family, or emotional distress.¹⁸ Our response rates suggest that participants were eager to discuss this topic and their experiences despite the lapse in time between participating in the original trials and completing this questionnaire.

We found that patients and families differed in the time frame within which they preferred to discuss financial concerns. This suggests that a simple screening questionnaire assessing when patients or families would like to address financial concerns (i.e., during or after an ICU admission) should be evaluated to facilitate appropriate triage. The majority of participants felt that information on how to interpret hospital bills, expected out-of-pocket costs, and insurance coverage would be helpful; this provides insights into potential counseling services that might help alleviate financial worry. One mechanism to address these topics may be a financial navigator who assists patients or family members with these types of questions and concerns. These types of novel interventions are being explored in the oncology population with promising results.¹⁹

Our study has several limitations. First, our sample size was small and from a single center, and thus results may not be generalizable. Further, selection bias associated with the criteria for the CSTEP⁸ and FCS⁹ trials could limit generalizability. However, despite these limitations, we were able to observe some trends worthy of additional investigation. Second, significant time elapsed between the pertinent ICU admission and recontact for this study, which might reduce recall of financial stress; however, our response rates suggest that financial stress has a significant impact on both patients and families, and is remembered years later. Last, the questionnaire has content validity based on our review by investigators and others, but has not undergone formal validation. Further studies are needed to confirm and extend this preliminary validation.

Our study has several strengths. First, to our knowledge, this is the first survey-based study to examine sources of financial distress and attitudes toward services to address and reduce this distress in a population that experienced critical illness. Second, although further study is needed, this survey provides questions that address domains of interest to patients and family members, and confirms their willingness to provide information on this topic. Evaluating this survey in larger and more diverse cohorts could provide valuable information about the experience of financial stress and the distress it causes during and after critical illness and ways to modify it.

In conclusion, this study suggests that the experience of financial stress and the distress it causes during and after critical illness is common, potentially modifiable with targeted interventions, and a topic of importance to critically ill patients and their family members worthy of future investigation.

Funding Information

This project was supported by the Agency for Healthcare Research and Quality (AHRQ) (K12HS022982). This research was also made possible by Grant Number 195 from the Patient-Centered Outcomes Research Institute (PCORI), the National Institute of Nursing Research (R01 NR05226), and the Cambia Health Foundation.

Author Disclosure Statement

No competing financial interests exist.

The content is solely the responsibility of the authors and does not necessarily represent the official views of AHRQ.

Supplementary Material

Supplementary Data

Supplementary Table S1

Supplementary Table S2