Abstract
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While some will be quick to assume the hospice was simply not trying hard enough to prevent hospitalization, the hospice agency had comprehensive systems in place to respond to patients in crisis, including instructions to follow in the event of an emergency, a phone service staffed by a hospice nurse with the potential to dispatch a hospice nurse, nurse practitioner, or physician within one hour, an on-call physician 24 hours 7 days per week, and an emergency medication kit in the home. The hospice agency also had inpatient hospice units that were within 20 miles of each patient where patients had access to daily physician visits, laboratory services, intravenous medications and fluids, blood transfusions, and imaging.
The primary reason for hospitalization among the majority of caregivers was the occurrence of distressing or difficult to witness signs/symptoms such as breathing difficulties, pain, bleeding, or seizure, and the majority of patients (61%) had a nursing visit within one day of hospitalization, suggesting that hospice engagement was high. However, what was striking to me was that half called 911 and I believe the exemplar quote provided in the article for the distressing symptom theme is elucidating. The quote was from a caregiver who described the situation as horrific when she arrived at home to find her mother seizing. Few people would be prepared for such an event, and even in the setting of known terminal illness, such an event would trigger a 911 call. Similar responses were noted in a study of hospice patients transferred to an inpatient hospice unit. 3 Occurrence of an acute medical event, uncontrolled symptoms, imminent death, or inability to provide needed care safely at home were all reasons for transfer to a higher level of care. 3 Importantly, although all of the caregivers interviewed in this hospice inpatient unit transfer study indicated a strong preference to receive care at home, this preference was superseded by more pressing concerns, including symptom management, pursuit of safety, quality, and/or quantity of life. 3 Thus, while many of us consider disenrollment from hospice a failure of the system, I would submit that careful consideration of the circumstances is needed before rushing to judgment. Certainly, there can be failures of hospices that are not comprehensive in offering layers of support and services to prevent unwanted hospitalizations, but without knowing the caregivers' preference for hospitalization and the risk of poor caregiver outcomes if such an option were not available, our information is incomplete.
The second theme identified by Phongtankuel et al. 2 was a preference to receive workup or interventions unavailable in the home setting. We recently cared for a patient who disenrolled from hospice for exactly this reason; he was hospitalized for a blood transfusion. As a result of a long and complicated transfusion history, he was known to be exceedingly difficult to crossmatch for blood products and required close inpatient monitoring. Given the complexities of performing a type and crossmatch in an inpatient hospice unit, I was surprised to read that the hospice enrolling subjects in this study performs blood transfusions in their inpatient hospice units. The advanced workup capabilities of the hospice inpatient units in this study raise several important issues. First, were caregivers in the study aware that the hospice inpatient units had inpatient hospice units staffed daily by physicians with laboratory draw, imaging, and blood transfusion capabilities? The authors specifically note that caregiver knowledge regarding the general inpatient and continuous care levels of care was not assessed, so we cannot know if this would have altered their decision regarding hospitalization. However, it does make me question how good we are as a hospice community of informing our patients and caregivers about the capabilities of our inpatient care units and our more intensive levels of care. Second, if caregivers were aware of the sophistication of these inpatient hospice units, I suspect this theme of needing to go to a hospital for workup and interventions unavailable at home would be even more prominent in hospices without such sophisticated inpatient units. Knowledge likely varies considerably among caregivers, and as a field, we would benefit from understanding the degree to which caregivers understand the range of services available.
The third theme was a preference to be cared for by nonhospice physicians or at a local hospital. The representative quote in this section describes the caregivers' comfort level with the hospital as a reason for hospitalization. While we often describe the harms that can befall patients during hospitalization, the burdens of caregiving mentioned in this quote cannot be ignored. In a four year study of 392 caregivers and 427 noncaregivers, mortality was 63% higher among caregivers after adjusting for sociodemographic factors and comorbid conditions (relative risk 1.63; 95% CI 1.00–2.65). 4 Spousal caregivers of hospice patients are also known to be at risk of depression and decline in physical health. 5 More information about the caregivers in the study by Phongtankuel et al. 2 would have been useful, such as the amount of time they had been caregivers, a subjective appraisal of caregiving task difficulty, an account of caregiver health problems, and inventory of social support given the association between these variables and caregiver burden. 6 Caregivers who find meaning and subjective benefits from caregiving and have more social resources tend to experience lower depression and higher life satisfaction, even after controlling for patient impairment and caregiver appraisal variables. 7 Future studies assessing the connection between known risk factors for poor caregiver well-being and hospice disenrollment would be valuable particularly since there are data indicating that structured caregiver skill-training interventions to enhance hospice caregiving can be effective in improving caregiver quality of life, reducing burden related to patients' symptoms, and caregiving tasks compared with hospice care alone or hospice plus emotional support. 8
A fourth theme in the Phongtankuel article 2 focused on caregiver discomfort with a home death. I am reminded as I review this theme that just as many wish for guidance and a hand to hold in childbirth, many also hope for the same in death. Increasingly death midwifery and death doula services are becoming available, including creation of the International End-of-Life Doula Association (www.inelda.org). Would the caregivers interviewed for this study who feared a home death have benefitted from support from such providers? The authors list challenges and areas for future research, but did not list options under this fourth theme. Perhaps the role of these providers in addressing discomfort of caregivers with home deaths could be added to the list as a topic of future research.
The themes that emerged from this study suggest that in some cases, disenrollment from hospice may provide relief for both caregivers and patients when symptoms are distressing, workup is unavailable, the hospital is a more familiar and convenient setting, and/or death at home is uncomfortable. As with many studies, we are left with more questions than answers and I hope we are prompted to increasingly consider caregiver burden as we thoughtfully analyze hospice disenrollment as an outcome.