Abstract
Background:
Terminally ill patients experience high symptom burden at the end of life (EoL), even when receiving hospice care. In the U.S., family caregivers play a critical role in managing symptoms experienced by patients receiving home hospice services. Yet, most caregivers don’t receive sufficient support or formal training in symptom management. Therefore, providing additional visits and education to caregivers could potentially improve outcomes for both patient and caregiver. In response, we developed the Improving Home hospice Management of End-of-life issues through technology (I-HoME) intervention, a program designed for family caregivers of home hospice patients. This paper describes the intervention, study design, and protocol used to evaluate the intervention.
Methods:
The I-HoME study is a pilot randomized controlled trial aimed at reducing patient symptom burden through weekly tele-visits and education videos to benefit the patient’s family caregiver. One hundred caregivers will be randomized to hospice care with (n=50) or without (n=50) the I-HoME intervention. Primary outcomes include intervention feasibility (e.g., accrual, attrition, use of the intervention) and acceptability (e.g., caregivers’ comfort accessing the tele-visits and satisfaction). We will also examine preliminary efficacy using validated patient symptom burden and caregiver outcome measures (i.e., burden, depression, anxiety, satisfaction).
Conclusion:
The trial is evaluating a novel symptom management intervention that supports caregivers of patients receiving home hospice services. The intervention employs a multi-pronged approach that provides needed services at a time when close contact and support is crucial. This research could lead to advances in how care gets delivered in the home hospice setting.
Keywords: Hospice, caregivers, symptom management, technology, education
INTRODUCTION
In 2020, over 1.7 million Medicare beneficiaries received hospice services in the last year of life, with the vast majority receiving hospice care at home.1 While home-based hospice care is aimed at reducing suffering and maximizing quality of life (QoL) at the end of life (EoL), patient symptom burden which includes pain, shortness of breath, nausea, anxiety, and depression remains highly prevalent and distressing to both patients and their family caregivers.2–8 High symptom burden leads to poor patient QoL, contributes to other unwanted patient outcomes (e.g., live discharges, hospitalization)9, and can worsen caregiver outcomes (e.g., burden, depression, anxiety, satisfaction).10–12
Hospice patients have significant care needs at the EoL.13,14 Family caregivers play a critical role in meeting these needs. U.S. national data show that family caregivers provide on average, 40 to 60 hours of care each week to patients during their last year of life.14 Despite our reliance on family caregivers to help keep patients safe and comfortable once they enroll in home hospice care, most lack sufficient support or formal training in symptom management.15 Pain management, for example, is particularly challenging for many family caregivers.10,16–18 Barriers to effective pain management include misconceptions about treating pain and use of opioids (e.g., concerns about addiction to pain medications or hastening death with opioids).10,16–18 Lack of preparedness can contribute to caregivers feeling stressed and lead to worse mental health outcomes.19,20 In fact, family caregivers of hospice patients are more likely to suffer from depression, anxiety, stress, and poorer physical health when compared to non-caregivers.21 As many as one in four hospice family caregivers report moderate-to-severe levels of depression, while one in three experiences significant anxiety symptoms.22–24 The challenges faced by caregivers highlight the need for interventions to mitigate caregiver burden to the extent possible. One way to support caregivers is to provide them with additional supports to address symptoms and reduce patient suffering.
Developing and testing interventions to address symptom burden in home hospice care have been challenging given the difficulty in recruiting terminally ill patients and their caregivers at the EoL. Previous intervention studies have focused on educational interventions (e.g., brochures, videos),25,26 using apps to track symptoms,27,28 providing additional supports (e.g., hotline, additional visits) to caregivers,29,30 and implementing cognitive-behavioral methods (e.g., problem-solving therapy).31 While some of these interventions have shown promising results,32,33 many studies in the field lack adequate rigor.34 Therefore, more rigorous and robust research is needed to identify efficacious strategies for family caregivers of home hospice patients given the continued high prevalence of high symptom burden in this patient population.
To this end, we developed an innovative intervention to help home hospice caregivers manage patient symptoms. The 6-week intervention, Improving Home hospice Management of End-of-life issues through technology (I-HoME), is informed by the stress model process of caregiving35 and focuses on reducing patient symptoms (e.g., pain, shortness of breath) in the home hospice setting through: (1) weekly tele-visits (via video or phone) conducted by a hospice nurse practitioner; and (2) caregiver educational videos.
The objectives of this paper are to describe the I-HoME intervention, the study design, and study protocol. The feasibility, acceptability, and preliminary efficacy of the I-HoME intervention is being evaluated in a pilot randomized controlled trial (RCT) where one hundred family caregivers of home hospice patients will be randomly assigned to the I-HoME intervention condition (N=50) or usual care (N=50). Feasibility will be assessed by examining overall accrual, attrition, and use of the intervention. Acceptability will be assessed by measuring caregivers’ comfort accessing the tele-visits and overall satisfaction with the intervention. Efficacy will be assessed by changes in patient symptom burden and caregiver outcomes (i.e., burden, depression, anxiety, satisfaction).
MATERIALS AND METHODS
Trial design
This is a pilot RCT, funded by the National Institute on Aging (NIA), comparing I-HoME to standard home hospice care (NCT04243538). The trial will recruit from multiple hospice teams that serve patients and caregivers in an urban area. Within each hospice team, there are 3 to 4 hospice nurses that carry a census of up to 20 patients. For this trial, nurses will be randomized in a 1:1 manner to either receiving the I-HoME intervention or to standard hospice care using a random number generator. All eligible caregiver participants in a nurse’s panel will be assigned to the arm to which the nurse was randomized. This study is approved by the Institutional Review Board (IRB) at Weill Cornell Medicine and VNS Health, and informed consent was obtained from all participants.
Study setting/Eligibility criteria
The study team will collaborate with a large non-profit hospice organization located in an urban area to recruit study participants and implement study activities. Upon hospice admission, home hospice patients and their designated caregivers will be screened on a weekly basis via the electronic medical record (EMR) for study eligibility. Patient (i.e., name, age, admission date) and caregiver (i.e., name, contact number) information will be obtained through the EMR. Inclusion criteria for caregivers include age 18 years or older, English speaking, and providing caregiving on a weekly basis to a home hospice patient aged 65 years or older. The focus is on caregivers caring for hospice patients 65 years or older as approximately 95% of hospice patients are 65 years of age or older. Because this is a caregiver focused intervention, patients will not be formally enrolled into the study due to concerns about participant burden.
Recruitment/Consent
After identifying potential caregiver participants through EMR screening, the research team will send an email to the patient’s hospice nurse to obtain approval on the appropriateness of enrolling the caregiver into the study. If a patient is deemed to be imminently dying as per the hospice nurse, it would be inappropriate to enroll a caregiver who may not have sufficient time to be consented and participate. The average length of stay for patients at this hospice is 70 days. Once receiving approval from the hospice nurse, a research assistant will contact caregivers by phone to provide detailed information about the study and inquire about their interest in participating. If there is interest, the research assistant will schedule a time to obtain oral, electronic, or written informed consent (based on the caregiver’s preference). All participants will receive a completed copy of the consent form after enrollment.
I-HoME intervention
Caregivers will be randomized to either the I-HoME intervention or the “enhanced” control group at the hospice nurse-level. I-HoME focuses on reducing patient symptoms in the home hospice setting through weekly tele-visits conducted by a hospice nurse practitioner and caregiver educational videos to benefit the family caregiver. The intervention was refined through a user-centered design process, which involves designing for and involving users (i.e., hospice providers, caregivers) in the design process.36 The tele-visits have been designed to enhance caregivers’ self-efficacy regarding symptom management issues. The structure of these visits is outlined in the I-HoME manual of operations and focus on 4 key components to symptom management: inquire, evaluate, treat, and review. Each of the components is described further in Table 1. In addition, links to a library of caregiver educational videos (accessible via a website) will be available for caregivers. Videos will be shared if the nurse practitioner interventionalist deems specific topics addressed by the videos to be relevant and beneficial to the caregiver. The videos (2 to 5 minutes in length) address topics such as: how to assess pain and shortness of breath, understanding signs and symptoms that indicate a patient is approaching the EoL, and addressing common misconceptions about morphine and opioids. The topics are also listed in Table 2.
Table 1.
I-HoME televisit structure
| 1. Inquire |
|
| 2. Evaluate |
|
| 3. Treat |
|
| 4. Summarize |
|
Table 2.
Caregiver educational video topics
| Topics | |
|---|---|
| 1. What is hospice care? | 5. Discussing pain misconceptions |
| 2. How to assess pain? | 6. How to assess shortness of breath |
| 3. Video describing a pain crisis | 7. EoL signs and symptoms |
| 4. Video discussing use of morphine | 8. Last stages of life |
At the start of the study, enrolled caregivers in the I-HoME arm will be mailed a tablet and a user guide on how to access video visits with a hospice nurse practitioner. A research assistant will follow up with the caregiver by phone to teach them how to connect to the video visits using the tablet. Software by Doxy.me (https://doxy.me) will be used to conduct HIPAA compliant synchronous video visits. After caregivers have been trained on accessing the tele-visits, a nurse practitioner will contact the caregiver to schedule weekly visits. Caregivers and patients will continue to receive standard home hospice services in addition to the intervention. The intervention tele-visits are conducted weekly for 6 weeks. A summary of the tele-visit encounter will be entered into the electronic health record for the hospice team to review. NPs will also participate in weekly interdisciplinary meetings with the hospice team if further clarification of recommendations are needed. Missed weekly calls are not made up beyond the 6-week period. The study will conclude at the end of the 6th visit, upon reaching the week 6, or upon death or discharge of hospice patient, whichever one is sooner.
Control
Caregiver participants enrolled in the “enhanced” control arm will receive standard home hospice services. They will also receive a tablet that is uploaded with an electronic version of the hospice admission packet that all caregivers receive at the time of hospice enrollment. The packet includes basic information about caregiver burden and how to cope with the stresses of caregiving. A research assistant will follow up with the caregiver by phone to teach them how to access the digital information on the tablet. The study will conclude upon reaching the week 6 after enrollment, or upon death or discharge of hospice patient, whichever one is sooner.
Measures
After caregiver participants are consented, they will be asked to answer a series of questions as part of the baseline assessment (Table 3). Survey questions as well as feasibility and acceptability questions (only for the intervention group) will be administered on a weekly basis after each visit (Weeks 1, 2, 3, 4, 5, 6). Patient symptom burden will be collected using the Edmonton Symptom Assessment Scale (ESAS)37 as reported by the caregiver. The 12-item Zarit Burden Interview (ZBI-12),38 Patient Health Questionnaire-9 (PHQ-9),39 and General Anxiety Disorder-7 (GAD-7)40 scale will be used to assess caregiver burden, depression, and anxiety on a weekly basis. Caregiving confidence will be measured using the Caregiver Self-Efficacy Scale (CaSES) at three timepoints (baseline, Week 3, Week 6). For the final visit or last survey administered, participants will be asked about their overall satisfaction with care (Week 6). In addition, weekly phone surveys with caregivers in the I-HoME arm will incorporate questions on which videos were viewed and their perceived benefits/harms. Questions will be administered via phone by a research assistant.
Table 3.
Survey timeline for hospice caregivers
| Baseline | Weekly surveys | Final survey |
|---|---|---|
| Demographic data | ||
| Edmonton Symptom Assessment Scale (ESAS) | Edmonton Symptom Assessment Scale (ESAS) | Edmonton Symptom Assessment Scale (ESAS) |
| Caregiver burden (ZBI-12) | Caregiver burden (ZBI-12) | Caregiver burden (ZBI-12) |
| Depression (PHQ-9) | Depression (PHQ-9) | Depression (PHQ-9) |
| Anxiety (GAD-7) | Anxiety (GAD-7) | Anxiety (GAD-7) |
| Feasibility questions | Feasibility questions | Feasibility questions |
| Satisfaction |
Patient data will be collected from the EMR as outlined in Table 4. This will include demographic data, information about their hospice diagnosis and medications, as well as hospice utilization variables from admission to 4 weeks post-study completion.
Table 4.
Data obtained from patient medical records
| Baseline | 4 weeks post study completion |
|---|---|
| Age | Number of nursing visits |
| Gender | Number of social work visits |
| Race/ethnicity | Number of chaplain visits |
| Hospice diagnosis | Use of respite or inpatient hospice services |
| Medications | If discharged from hospice and discharge reason |
| DNR/DNI status |
Compensation
Participants will be compensated $50 for the initial baseline survey followed by $25 each time they complete a within study/end of study phone survey.
Statistical analysis
Feasibility will be assessed by examining accrual rates, attrition rates (i.e., caregiver withdrawal from the study), adherence to the study protocol, hardware/software issues, and use of the intervention (e.g., frequency and duration of visits). Acceptability will be assessed by examining caregivers’ comfort in using the intervention, whether each visit adequately addressed caregivers’ medical concerns, and satisfaction with the intervention.
To assess the intervention’s potential efficacy, we will use mixed models (MMs) to analyze specific outcomes (i.e., symptoms, caregiver burden, depression, anxiety). MMs do not assume that each subject will contribute data at all-time points thus can be used for data with complex attrition patterns.41 In these models, the subject’s initial status (intercept) and the change in their status (slope) will be treated as random effects. The variables of group, time, the interaction of group and time, and any variable that differs between the two conditions at baseline or other variables of theoretical interest, expectation for inclusion in models from the literature, or near significance of difference by conditions will be modeled as fixed effects. Nurses will be examined in models as levels of a random classification factor. For all variables, four models will be tested: a linear effect of time, a log-linear effect of time allowing for more rapid change at the beginning of the study, a quadratic effect of time with no random slope for the quadratic term, and a quadratic effect of time with the slope of the quadratic term also being allowed to be random. Model selection will be done using the Bayesian Information Criterion,42 a measure of model misfit with a penalty added for extra parameters, with inferences only being made from the best fitting model. We will also test for a random intercept and random effect of time by hospice nurse to control for potential nesting by nurse. Given the small number of hospice nurses we anticipate being involved in the study, we do not expect either random effect to be statistically significant and plan to exclude it from the model if it is not.
Our power to detect effects will depend on how quickly the intervention is found successful. With two time points for each subject, we will have 80% power to detect an effect size of d=0.57 on any outcome, which is considered a moderate effect. If it takes the full 7 time points for the full effect of the intervention to be realized, our power will be reduced, and a large effect (d=0.8) will need to be obtained in order to maintain 80% power. A 25% reduction in symptom burden reported by caregivers corresponds to an effect size of 0.71. Under a twotailed hypothesis test, if the intervention is successful by week 1, we would have 94% power to detect an effect of this size. We would have 70% power for a two-tailed hypothesis test across 7 time points.
DISCUSSION
High symptom burden is prevalent and distressing to patients and caregivers receiving EoL care on hospice and leads to poor outcomes (e.g., hospitalization, poor QoL, caregiver burden). Despite this problem, limited progress has been made to develop and test new models of care delivery to improve symptom burden in this setting. This paper describes the study protocol of a NIA funded pilot RCT that will assess the feasibility and acceptability of the I-HoME intervention and its potential efficacy when compared to standard home hospice care. The I-HoME intervention consists of up to 6 weekly tele-visits with a hospice nurse practitioner and caregiver educational video to better support family caregivers in symptom-related issues at the EoL.
This intervention addresses calls to improve EoL care. The Institute of Medicine’s report, “Dying in America,”13 has called for better coverage of patients’ social needs. One component of this involves support for exhausted and overwhelmed family caregivers. Further, the 2018 National Consensus Project Clinical Practice Guidelines for Quality Palliative Care has dedicated one of its eight core domains to the care of patients nearing the end of life and has called for “interdisciplinary team (IDT) ensures reliable access and attention in the days before death, and provides developmentally appropriate education to the patient, family and/or other caregivers about what to expect near death…”43
Limitations
The study design is subject to certain limitations. The intervention is being tested at one urban non-profit hospice site, which limits the generalizability of the results. Based on the results of this study, we hope to expand this intervention to other hospices (e.g., rural hospices, for profit hospice) with different organizational characteristics and/or patient populations. Because randomization is occurring at the hospice nurse level (to avoid nurses having participants in both arms and the risk they might focus more of their time on care for patients in the control group if they know a NP will be providing tele-visits to caregivers in the intervention group), we cannot fully account for the practice behaviors of each nurse in impacting outcomes. In addition, our “enhanced” control group is not an attention control group since it does not account for the amount of contact and general support of an empathic and skilled professional. Thus, even if we find positive impacts on outcomes, we will not be able to conclusively tease out whether the benefits are due to the attention provided to caregiver or from the impacts of the intervention. Lastly, while this is a caregiver focused intervention, we acknowledge that hospice patients are important given that they are experiencing symptoms. We hope to be able to incorporate patients into future studies using I-HoME.
CONCLUSIONS
The study is innovative in several important ways. First, it proposes to develop and test a novel care delivery intervention to support family caregivers who play important roles in helping to mitigate patient symptoms in home hospice care. The multi-pronged approach in providing additional clinical supports (via weekly tele-visits with a nurse practitioner) coupled with caregiver educational videos is unique in this setting. Second, this study will lead to advances in how care can be delivered in this population and introduce a novel and complementary care intervention that brings needed services at a time when close contact and support is needed. Given the limited number of evidence-based hospice interventions to support caregivers,44,45 we anticipate this study to advance knowledge in implementation of hospice interventions for caregivers in the home setting.
Highlights.
Home hospice caregivers play a critical role in managing symptoms at the EoL.
I-HoME is a novel symptom management intervention aimed at reducing symptoms.
The intervention employs a multi-pronged approach to support caregivers in hospice.
Funding
This work was supported by the National Institute on Aging [K76 AG059997]. The sponsor has no role in the study design; in collection, analysis, and interpretation of data, in the writing of the report, or in the decision to submit the article for publication. The views expressed in the article are those of the authors and do not necessarily reflect the views of the National Institutes of Health.
Footnotes
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Declaration of interests
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
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