Enhancing communication between oncology care providers and patient caregivers during hospice
Background When patients enroll in hospice, they and their close family and friends (ie, caregivers) often report feeling a sense of abandonment because of the break in routine communication with their oncology clinicians (physicians, nurse practitioners [NP], registered nurses [RN], and/or physician assistants [PA]).
Objective To assess the feasibility of an intervention to facilitate communication between oncology clinicians and caregivers of patients in hospice care.
Methods Caregivers of patients with cancer who enrolled in home hospice were eligible to participate. The intervention consisted of supportive phone calls from their oncology clinicians, an optional clinic visit, and a bereavement call. The primary outcome was feasibility, defined as >70% of caregivers receiving >50% of phone calls and >70% of caregivers completing >50% of questionnaires. We also assessed caregiver satisfaction with the supportive intervention, stress, decision regret, and perceptions of end-of-life care.
Results Of 38 eligible caregivers, 6 declined participation, 7 could not be reached, and 25 (81%) enrolled in the study. Of those, 22 caregivers were evaluable after 2 patients died before the intervention began and 1 caregiver withdrew. Oncology clinicians completed 164 of the expected 180 calls (91%) to caregivers. The majority of the calls were made by the RN or NP. Caregivers completed 78 of the expected 99 (79%) questionnaires. All of the caregivers received >50% of scheduled phone calls, and 73% completed >50% of the questionnaires. During exit interviews, caregivers reported satisfaction with the intervention.
Limitations Single-institution, small sample size
Conclusions This intervention proved feasible because caregivers received the majority of planned phone calls from oncology clinicians, completed the majority of study assessments, and reported satisfaction with the intervention. A randomized trial to evaluate the impact on caregiver outcomes is warranted.
Funding Supported on NIH T32CA071345
Accepted for publication January 31, 2018
Correspondence Jessica R Bauman, MD; Jessica.Bauman@fccc.edu
Disclosures The authors report no disclosures/conflicts of interest.
Citation JCSO 2018;16(2):e72-e80.
2018 Frontline Medical Communications
doi https://doi.org/10.12788/jcso.0391
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These results suggest that a simple, telephone-based intervention of scheduled calls from the oncology team at prompted intervals is not only feasible, but may also help foster continuity between the patient and caregiver and the oncology team. We received feedback from both oncology clinicians and caregivers that the initial call frequency was too often, suggesting that communication may not need to be very frequent to maintain continuity and provide support. This also suggests that if the calls are too frequent, they may be more intrusive than helpful for both oncologists and caregivers. Alternatively, caregiver suggestion for fewer phone calls may indicate that concerns about abandonment are less prevalent than existing literature has suggested.
Limitations
Our study has several important limitations. The sample size was small as this was a feasibility study conducted at a single tertiary care hospital, and the population was 90% white and 95% college educated, which may limit the generalizability of our results. In addition, the median length of stay in hospice for patients on this study was 36 days, which is long compared with national averages,32,33 and thus the outcomes may not represent the experience of a more heterogeneous population. The longer length of stay in hospice may have contributed to caregivers’ high satisfaction with the quality of end-of-life care.
Oncologists did not grant permission for the study team to approach all eligible caregivers, which may have introduced selection bias. We were also not able to reach 6 participants for exit interviews. People less satisfied with the intervention or with hospice may be more likely to have missing data, which could introduce bias into the satisfaction ratings. Furthermore, we did not explore the oncology clinicians’ perspective of the intervention or assess the time commitment of the calls. Oncology clinicians have many competing responsibilities and have variable experience and comfort with hospice care. Therefore, future studies should explore the perspective of oncology clinicians in regard to the intervention.
,Finally, we did not require communication with the hospice agency as part of the intervention as there were ten different hospices involved. Thus, we do not know how the intervention impacted the hospice team’s care of the patient. However, based upon the success of this pilot study, future larger studies should explore the impact of the intervention from the perspective of the hospice care team and include oncology clinician communication with the hospice agency.
Conclusion
These findings demonstrate the feasibility and acceptability of an intervention to enhance communication between oncology clinicians and caregivers of patients with advanced cancer receiving hospice care. Importantly, the high caregiver satisfaction with the intervention in this study suggests that maintaining communication with the primary oncology team during hospice care may be an important component of high quality end-of-life care, though the desire for decreased calls suggests that this communication need not be frequent to maintain the continuity. A randomized study with a larger and more diverse patient/caregiver sample would allow us to explore the impact of the intervention on caregiver feelings of abandonment by the oncology team and short- and long-term caregiver outcomes, as well as to understand the perspective of the oncology and hospice clinicians involved.
