Factors Associated With Live Discharge of Heart Failure Patients From Hospice: A Multimethod StudyFree Access

Design

This study used a multimethod approach in which both quantitative data (i.e., medical records) and qualitative data (i.e., interviews with hospice providers) were collected, analyzed, and presented. An underlying assumption of this approach was that our research question could be answered more comprehensively than by using a single method alone (9). Data were obtained from a nonprofit hospice agency in New York City with an average daily census of 1,000 patients. The agency institutional review board approved all study procedures.

Quantitative data

Data on adult home hospice patients admitted and discharged between 2013 and 2017 were obtained by querying medical records. A total of 18,509 patients across all diagnoses were served during this period; the first period of hospice enrollment was examined for patients with multiple episodes. A total of 1,553 patients (8.4%) had a primary diagnosis of heart failure. Approximately 2.7% (n = 508) of the total patient population were missing data on ≥1 variables, including 3.5% (n = 55) of heart failure patients. These cases were excluded, which resulted in analytical samples of 18,001 patients across all diagnosis groups and 1,498 patients with heart failure. Several measures were identified, including discharge reason, sex, age, race/ethnicity, marital status, primary caregiver, health care proxy, and payer. Charlson comorbidity index scores were calculated based on the weights and codes updated by Quan et al. (10). Hospice referral source distinguished patients who came to the hospice from the hospital versus nonhospital settings. The Palliative Performance Scale (PPS) score at hospice enrollment was included as a measure of functional status (11). PPS scores ranged from 10% (bedbound, extensive disease) to 70% (reduced ambulation, significant disease), with higher scores indicating greater functioning (Online Table 1).

Qualitative data

Nineteen hospice providers were recruited for qualitative interviews between March and May 2018. Purposive sampling was used to select a diverse range of perspectives from hospice providers across the region (Manhattan and the Bronx) and discipline (i.e., nursing, social work, medicine). Providers who attended Interdisciplinary Team Meetings on dates when our study team was present were invited to participate in interviews. The researchers explained the study purpose and obtained informed consent from interviewees. A semistructured interview guide was developed to elicit information about heart failure patient experiences and circumstances that precipitated live discharge (Online Appendix). Interviews lasted approximately 30 min, and were audio-recorded and transcribed verbatim. Interviewees received $25 gift certificates for their time.

Data analysis

Quantitative data

Table 1 describes the hospice patients with heart failure in our study population. Most patients were women (56.7%), 85 years or older (63.4%), and White (50.1%). However, the agency also served substantial minorities of Hispanics (24.1%), African Americans (18.0%), and Asians, or patients with other race/ethnic backgrounds (7.9%). Most patients were not currently married (64.2%), and some patients lacked a primary caregiver (16.4%) or health care proxy (16.2%). Medicare Fee-for-Service represented the most frequent payer (61.1%). Most patients were referred to hospice from the hospital (55.1%). The largest group of patients had PPS scores between 10% and 30%, which indicated extensive disease and near-total care (39.9%).

Table 2 compared the distribution of hospice discharge reasons among patients with heart failure with other diagnoses. Most patients with heart failure died in hospice (69.6%). The percentage of heart failure patients with live discharge (30.4%) was considerably higher than that for cancer (23.2%), dementia (23.1%), and stroke (17.9%). Perhaps due to similar patterns of prognostic uncertainty and symptom burden, the live discharge rate among patients with pulmonary disease (31.7%) was comparable to heart failure. The most frequent live discharge reason among patients with heart failure included revocations among patients who dialed 911 and were admitted to acute care hospitals (i.e., acute hospitalization; 15.4% of patients). Acute hospitalization often stemmed from 911 calls due to panic and anxiety associated with sudden uncontrolled symptom exacerbations, including shortness of breath and pain. The second leading reason for live discharge was elective revocations to resume disease-directed treatments without acute hospitalization (i.e., elective revocation; 6.1%). Treatments that prompted elective revocation included pacemaker upgrades, implantations of automatic implantable cardioverter defibrillators or left ventricular assist devices, implantation of monitoring systems, and trial treatments. Additional reasons for live discharge included a loss of hospice eligibility due to extended prognosis (disqualification; 4.8%) and moves out of the service area or to other hospice and/or palliative settings (transferred; 4.1%). A notable trend was observed in live discharges across the study period. The percentage of heart failure patients with live discharge increased from 26.0% in 2013 to 33.6% in 2017. Much of this trend was attributable to an increase in the percentage of patients with disqualification, which rose from 1.9% of all patients in 2013 to 7.2% in 2017.

Associations of sociodemographic and clinical characteristics with live discharge reason were examined among heart failure patients (Table 3). The odds of acute hospitalization were greater among younger patients, including those ages 18 to 74 years (adjusted odds ratio [AOR]: 2.10; 95% confidence interval [CI]: 1.34 to 3.28) or 75 to 84 years (AOR: 1.79; 95% CI: 1.24 to 2.62). Elevated risk of hospitalization was also observed among Hispanic (AOR: 2.99; 95% CI: 1.99 to 4.50), African American (AOR: 2.06; 95% CI: 1.31 to 3.24), and Asian and/or other patients (AOR: 1.96; 95% CI: 1.08 to 3.57) compared with white patients. Higher PPS scores at hospice enrollment were associated with greater odds of hospitalization (PPS scores: 50% to 70%: AOR: 5.68; 95% CI: 3.66 to 8.79). Risk for elective revocation was greater among those aged 75 to 84 years (AOR: 1.99; 95% CI: 1.18 to 3.38), patients without a primary caregiver (AOR: 2.08; 95% CI: 1.25 to 3.48), and patients with PPS scores of 50% to 70% (AOR: 3.77; 95% CI: 2.14 to 6.64) or 40% (AOR: 1.85; 95% CI: 1.06 to 3.24). Risk for disqualification was greater among Hispanic patients compared with white patients (AOR: 2.32; 95% CI: 1.23 to 4.34), and for patients with PPS scores of 50% to 70% (AOR: 4.90; 95% CI: 2.5 to 9.55) or 40% (AOR: 2.57; 95% CI: 1.35 to 4.92). The odds of transferring were greater among Hispanic (AOR: 2.25; 95% CI: 1.10 to 4.62) and Asian and/or other race/ethnicities (AOR: 2.25; 95% CI: 1.04 to 6.18) compared with white patients. Increased risk for transferring was also observed among those without a primary caregiver (AOR: 1.98; 95% CI: 1.05 to 3.71), and for patients with PPS scores of 50% to 70% (AOR: 5.49; 95% CI: 2.66 to 11.34) or 40% (AOR: 2.53; 95% CI: 1.23 to 5.23).

Qualitative data

Interviewees included 17 registered nurses, 1 social worker, and 1 physician. Interviewees were mostly women (78.9%), white (47.4%) or African American (31.6%), English-speaking (52.6%), and were an average age of 48.8 ± 12.3 years. Most worked in hospice for ≥5 (57.9%; n = 11). Three themes were identified: unique characteristics; understanding and expectations of hospice; and sociocultural and family context.

Unique characteristics

Health care providers were aware that patients in hospice with heart failure are different from other diagnosis groups. Distinguishing features included the disease process itself, which was described as a “long road” with many “peaks and valleys.” Patients with heart failure were typically enrolled in hospice following a series of hospitalizations and emergency department visits. One interviewee described how patients with heart failure “are so used to getting sick and they get better…sick…better.” Rapid, sudden, and dramatic changes in patients’ conditions were described by providers, including sudden symptom exacerbations (e.g., “the symptoms could set on…it’s so sudden”) and changes in physical functioning (e.g., “I could see that he had declined a lot from one time to the next”). In addition to these distinguishing features, patients with heart failure were also described as having a “different symptomology and different management of symptoms.” Providers identified several common characteristics among heart failure patients, including comorbid conditions (e.g., renal failure, pulmonary disease), medical devices (e.g., pacemakers, defibrillators), and complex medication regimens (e.g., diuretic agents, inotropes). Patients with heart failure were also described as having certain signs and symptoms that distinguished them from other diagnosis groups (e.g., cancer or dementia), and which often represented the focus of hospice providers’ care management and educational interventions. These signs and symptoms included weight gain, edema and fluid retention, respiratory distress, weakness, pain, and anxiety (i.e., often as a consequence of distressing symptoms).

Understanding and expectations of hospice

Patients arrived at hospice with varying expectations, understanding, and acceptance about their condition. Providers spoke of patients and families who “come into hospice not having any idea what it’s about,” “don’t understand the whole prognosis,” are “expecting a miracle,” and “use hospice to get the service that they need,” without acknowledging that they “are at the end.” Limited understanding of “the hospice concept” and “resistance” to educational interventions by hospice nurses were described as barriers to keeping patients continuously enrolled in hospice, especially in cases in which patients held perceptions that “if they call 911 and they go to the hospital…they feel that if they hear it from the hospital or doctor there, that’s different.” Clinicians spoke of educating patients and managing their expectations about what services to expect through hospice. Some patients and families were described as being “pro-hospice,” whereas others were described as harboring views that “hospice is not doing anything.” Providers also described needing to manage expectations among patients that nurses and other staff will “be there 24/7 (all the time).”

Providers spoke of identifying patients with greater readiness for home hospice: “They had the life they had. They are happy…and quite peaceful about it.” In contrast, patients with less readiness for hospice often lacked advanced directives or had unrealistic expectations about medical interventions at the end-of-life (e.g., cardiopulmonary resuscitation).

Sociocultural and family context

Hospice providers spoke about the sociocultural and family context in which patients received care. Socioeconomic background, culture, religion, social support, language, and family dynamics were all cited as important factors that influenced the course and outcomes of hospice. Educational attainment was mentioned as influencing patients’ knowledge and readiness for hospice. Financial resources were identified as enabling patients and families to secure needed private care and other assistance; those without such resources were described as “struggling to put something together.” Cultural concepts were also highlighted as affecting the patient experience. One concept included the “hero,” which was invoked to describe patients who “don’t want to die” and associated aggressive measures, including hospitalization, with “reassurance” that they were taking every possible action to prolong life. Language barriers were mentioned as posing obstacles to educational interventions, especially when providers were reliant on interpreters to communicate with patients and caregivers.

A related subtheme was distress and panic, which included descriptions of caregivers who expressed anxiety or a “state of panic” toward uncontrolled symptoms, hesitancy to administer treatments that were perceived as hastening death, and vigilance about providing every opportunity to prolong life. Some providers linked these situations to views among patients and/or caregivers that the hospital is “where you go when you’re sick” and is a place that provides them with “every opportunity to live.” Distressing circumstances faced by hospice patients often presented dilemmas for caregivers, some of whom were aware of their loved one’s preferences to die at home, but nevertheless felt unprepared or uncomfortable keeping patients at home when difficult-to-manage symptoms arose. Panic was described as being dependent on the level of trust between family members and the hospice team, including whether a connection was made with team members who met their needs. Social support was viewed by hospice providers as an important aspect of sociocultural and family context that helped to keep patients comfortable at home. Heart failure was viewed by providers as a disease that produces “a lot of emotional and physical distress” for both patients and caregivers. Hospice providers felt that patients who experienced distressing symptoms in the absence of social supports were left with few options other than calling 911. (“Most people that call [911] don’t have any support at home. They live alone. Not being able to breathe and live alone, have no one to call…right?”) The presence of nurses, family members, and aides were described as providing emotional support to patients who helped maintain their comfort at home.

Study limitations

Patients and providers were studied at a single hospice agency in the northeastern United States. The extent to which our findings could be generalized to other agencies and palliative settings outside of the United States would require further analysis. In addition, our data set did not include measures of patient socioeconomic status (i.e., income and/or education), language, culture and/or religion, or perceived social and/or emotional support. All of these constructs might represent important factors for live discharge among heart failure patients. Future research should clarify their contributions. Furthermore, our qualitative interviews were limited to hospice providers, most of whom were nurses, and thus did not directly represent the views and perspectives of patients or caregivers. Qualitative interviews with patients and caregivers, as well as other health care personnel, could provide additional insights into the circumstances underlying live discharge.