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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Before we started the study, we conducted training sessions with oncology clinicians from the participating disease centers to review study procedures and expectations of the phone calls. Supportive phone calls during hospice were not a part of standard practice prior to the study. The RN, NP or PA, and/or physician who had an established relationship with the patient and caregiver completed the phone calls. They decided based on their respective relationships with the patients and their workloads who would call each week, though the majority of calls were conducted by the RN or NP. All the clinicians had experience comanaging patients with hospice agencies, and our general practice is for the oncology physician to serve as the hospice attending of record. The calls were intended to offer support and reassurance to caregivers. We did not script the calls so that clinicians could tailor their content to the individual needs of the caregiver, as informed by their established relationship. The calls could include the patient if he/she was able to and interested in speaking to the clinician. There was no standardized communication with hospice as part of the intervention. If a caregiver raised concerns about symptom management during a call, the clinician would advise the caregiver to contact the hospice team directly or the clinician would call the hospice to discuss, depending on the clinical scenario and the clinician’s judgment. Research staff reminded oncology clinicians to call caregivers on the scheduled date and to document the discussion in the electronic medical record. The hospice phone number was included in the e-mail. If the call was not documented, research staff sent a reminder e-mail to the oncology clinicians 24 hours after the call was due.
Caregiver-reported measures
Caregivers completed a demographic questionnaire at baseline in which they reported their age, gender, race, ethnicity, religion, employment status, and relationship to the patient. We collected information about patient characteristics from the electronic medical record, including age, gender, and cancer type. In addition, we administered validated, self-report measures (see below). We limited the number of measures to decrease caregiver burden:
The baseline questionnaire included the FACQ-PC, the FAMCARE scale, the PSS, and the Decision Regret Scale. Initially, the study involved weekly questionnaires after baseline that included the FACQ-PC, the FAMCARE scale, and the PSS. However, after 3 months of study enrollment, we received feedback that the questionnaires were too frequent, so we amended the protocol and changed the frequency to weekly for 2 weeks, then monthly thereafter until the patient died.
Caregiver exit interview
Exit interviews included the toolkit interview, the Quality of End-of-Life Care scale, and the Decision Regret Scale. Caregivers also reported patients’ place and date of death. After the first 6 caregivers enrolled, we amended the exit interview to include open-ended feedback from caregivers. Specifically, we evaluated caregivers’ perceptions of the ECHO intervention by asking them about their perception of and satisfaction with the content and frequency of the oncology clinicians’ phone calls, whether they had an in-person visit with their oncology clinicians after the start of hospice care, whether the clinician/s contacted them after the patient died, and whether there were ways in which the clinician/s could help in the future.
Data collection and storage
Caregivers were given the option of completing study measures by telephone or e-mail so that they could complete them on a computer when it was convenient for them. Caregivers received a link to Research Electronic Data Capture (REDCap), a web-based, HIPAA-compliant application that allows participants to answer questionnaires online. The exit interviews were completed by phone, and research staff entered the data into the REDCap database. In addition, with we obtained caregiver permission to audiorecord the exit interviews, which were then transcribed and de-identified.
Statistical analysis
The primary outcome for the study was feasibility, which we defined as >70% of the caregivers receiving >50% of the phone calls from an oncology clinician, and >70% of the caregivers completing >50% of the questionnaires. All time points for the questionnaires and the exit interview counted toward feasibility. Exploratory endpoints included caregiver-reported satisfaction, stress, quality of end-of-life care, and decision-making regret.
Using STATA (v9.3; StataCorp, College Station, Texas) for all statistical analyses, we summarized participants’ characteristics and outcomes as frequencies and percentages for categorical variables and mean standard deviation for continuous variables. We used the repeated-measures t test to assess changes in caregiver outcomes over time. We used the Fisher exact test to compare clinically meaningful threshold scores of perceived stress between men and women.
We examined caregivers’ open-ended feedback using descriptive analyses to summarize comments about the intervention and to inform possible refinements for a future study.
