The Paradox of Hospice for Caregivers of Cancer Patients

To the Editor:

There are a plethora of research studies noting the challenges of caring for a loved one at the end of life, but less is known about the timeline of caregivers’ quality of life once a family enrolls in hospice care. Our prior work has shown that hospice caregivers can be successfully involved in the care planning process and do benefit from problem-solving intervention.^1,2 Numerous studies have tried to define and measure quality of life (QoL), and most have found it to be less than desirable for family caregivers.^3–5 The purpose of this study was to examine the trajectory of the QoL of family caregivers of hospice patients.

Methods

Data

Secondary analysis of data from two randomized clinical trials of 576 hospice caregivers was performed.^1,2 One trial occurred in the Midwest and consisted of two groups of hospice caregivers, a usual care group and a group that included a Web-conferencing intervention for informal hospice caregivers. Usual hospice care as provided by Medicare-certified hospice programs by regulation includes visits by nurses, social workers, chaplains, and so on. The study conducted at the Northwestern site also included two groups, one group that received “friendly visits” and a second group that received a problem-solving intervention. Both studies used similar protocols and instruments to capture a range of patient and caregiver characteristics, and all were approved by the institutional review board before enrollment.

Measures

Demographics

Patient characteristics included age, gender, race, and residence (private residence vs. other). Primary diagnoses were also used to group patients into one of three categories: those with dementia, cancer, and a third category for patients with other diagnoses. Two patients who had diagnoses of both dementia and cancer were excluded from the analytic sample. Caregiver demographic characteristics were examined: age, gender, race, residence (co-resides with patient, or not), marital status (married vs. other), employment status (employed vs. unemployed), and relationship to patient (spouse/partner, adult child, other).

Caregivers were asked to rate the four domains of emotional, social, financial, and physical QoL using the Caregiver Quality of Life IndexeRevised using a scale of 0e10. Each item ranged from 0 (lowest quality) to 10 (highest quality), with higher scores equating to better QoL.⁶ A total QoL index score can then be created by summing individual scores for all four areas.

Analysis

Descriptive statistics were examined for all patient and caregiver characteristics, as well as caregiver QoL, for the full study population and among diagnoses. In addition, between- and within-group comparisons using paired t-tests were conducted to examine changes in caregiver QoL between baseline and final interviews among diagnosis groups.

Results

Patient and Caregiver Characteristics

The study sample size was 576 caregivers/patients: 381(66%) from the Midwest and 195 (34%) from the Northwest. Most patients in the study were women (66.5%), Caucasian (92%), lived in a private residence (58.5%), and had a mean age of 81.7 years (SD = 12.7). Caregivers had a mean age of 60.7 years, and a majority were female (79%) and Caucasian (93%). Less than half (43%) of caregivers reported to be co-resigning with the patient. Caregivers were mostly either adult children (57%) or spouses (24%). A majority of the caregivers (74%) were married and 40% were employed either full or part time.

Primary Diagnosis Comparisons

Twenty-six percent of patients had cancer as their primary diagnosis, while 15.3% had dementia, and the remaining 58.3% had a primary diagnosis other than cancer or dementia. Cancer patients were younger than patients with dementia (74.4 vs. 87.2 years), whereas the caregivers tending to dementia patients were older than those caring for cancer patients (63.1 vs. 57.8 years, respectively). A majority (77.6%) of cancer patients were living in a private residence, and 56% of caregivers of cancer patients reported to be residing with the patient. By contrast, only 27% of dementia patients resided with their caregiver; they were more likely to live in a long-term care facility.

Quality of Life Among Informal Hospice Caregivers

Caregiver QoL scores significantly (P < 0.0001) decreased (i.e., worsened) between the baseline and final interview for three of the four subscales (emotional, social, physical), as well as the total score for all subjects. Although all caregivers, regardless of patient diagnosis, experienced a decline in QoL, those caring for cancer patients had the most significant decline for all subscales but financial. The financial QoL subscale did not change significantly for any patient diagnosis group. In fact, for caregivers of dementia patients, it improved (Fig. 1). Quality of life trajectory did not vary based on an intervention arm.

Fig. 1.

Quality of life trajectory by diagnosis: emotional, social, physical, and overall.

Discussion

In this study, findings are similar to other reports in the literature demonstrating decline in quality of life for patients, particularly those of cancer caregivers.^7–9 What is interesting and unique is the persistent trajectory of decline. We identified the largest decrease in social QoL (0.76-point drop), followed by emotional QoL, then physical QoL. Changes over time in financial QoL were not statistically significant. We cannot conclude, however, that caregivers’ financial realities were unchanged because the financial benefits associated with the Medicare hospice benefit (e.g., coverage of most medications, provision of durable medical equipment) may have offset additional care-related costs. In addition, the fact that at baseline caregivers scored financial QoL the lowest among the different aspects of QoL suggests that they may have already encountered significant financial burden before the initiation of hospice services. Our finding with regard to decreasing social QoL is consistent with a recent study that evaluated social networks for hospice caregivers. Albright et al.⁸ found that caregivers’ social networks decreased significantly during their hospice enrollment, underscoring a possible connection between the size of one’s social support system (i.e., their social network) and their social quality of life.

Differences by diagnosis also warrant attention. Hospice family caregivers of patients with dementia rated all four aspects of their QoL higher than family caregivers of patients with other diagnoses at baseline. Moreover, the slope of the decline for dementia caregivers was less—that is, their QoL decreased less over time. While these differences were not found to be statistically significant, the results may be clinically significant and warrant further inquiry.

Limitations

As with all secondary analyses, these data were not collected specifically to address the research questions proposed in this study. Our study was predominantly in white caregivers and collected in two regions of the country and hence may not be generalizable to other populations or geographic areas. Our small sample size may have resulted in lack of power in data analysis as well. Furthermore, caution should be used when interpreting comparisons by subtype as there may have been different responses to the interventions by patient diagnosis or other variables. Finally, our findings reflect only changes over time after the initiation of hospice services. Future research would be enriched by data reflecting a broader period, including the prehospice phase of family caregiving.

Conclusion

Although hospice has been shown to provide comfort and improve the QoL in the last few days of life for patients, the same benefit may not be seen in caregivers. Our data demonstrate that trajectory of decline in caregiver QoL is worst for caregivers of cancer patients. This may be a reflection of the poor preparation for events at the end of life, given median hospice enrollment of only 19 days.¹⁰ Regardless, the trend for greater decline in QoL occurs in caregivers of cancer patients. One possible solution may be interventions earlier in the cancer trajectory, such as at the time that a patient becomes metastatic or at the time of palliative care referral. Regardless, the evidence is clear that the needs of hospice caregivers of cancer patients cannot be ignored and deserves more focused attention and intervention as the impact on their health remains long after their loved one passes on.