Introduction: The Hidden Power of Confident Caregivers
Being a home hospice caregiver is one of the most loving and most challenging roles a person can take on. Many family members are suddenly asked to manage pain, breathing changes, confusion, and personal care while watching someone they love decline, often with little formal training. This emotional weight can be overwhelming, especially when caregivers feel unprepared and alone.
Research shows that when caregivers feel more comfortable and capable of managing symptoms, patients have fewer crises, caregivers feel less burdened, and satisfaction with hospice care is higher. At the same time, patients at home often continue to struggle with high symptom burden, leading to distress, emergency calls, and hospital transfers near the end of life. The I-HoME pilot study (Improving Home Hospice Management of End-of-Life Symptoms) was created to address this gap by giving caregivers practical, ongoing education and support.
This article explores what the I-HoME pilot study reveals about empowering caregivers and how combining telehealth visits, educational videos, and end-of-life doulas can improve both patient outcomes and family satisfaction.
Understanding the I-HoME Pilot Study: What It Proves
The I-HoME intervention was designed for caregivers of patients receiving home hospice services, with a simple but powerful goal: reduce patient symptom burden by improving caregiver skills and confidence. In this pilot randomized study, caregivers were assigned either to usual hospice care or to hospice care plus the I-HoME program, which included weekly tele-visits with a nurse practitioner and caregiver education videos for up to six weeks.
Early findings show that the program was feasible to deliver in the home setting and acceptable to both caregivers and hospice staff. While the complete outcome data are still emerging, the design reflects a strong evidence-based belief: when caregivers receive structured, repeated education and symptom support, patients are more likely to experience better-controlled symptoms and fewer stressful care transitions. For hospice agencies, these points point to a practical path forward—investing in caregiver education is not just “nice to have”; it is a clinical strategy to improve quality of care.
Three Pillars of Caregiver Support
To translate the I-HoME approach and related best practices into everyday hospice work, think in terms of three reinforcing pillars of caregiver support:
Weekly telehealth visits with a nurse practitioner
Structured educational videos and written guides
End-of-life doula partnership and advocacy
These elements can be used alone or in combination, depending on your agency’s resources and each family’s needs.
Weekly Telehealth Visits with Nurse Practitioners
In I-HoME, caregivers met weekly by video with a nurse practitioner who focused on symptom assessment, problem-solving, and coaching. This regular contact helped caregivers feel less isolated and more confident handling issues such as pain, shortness of breath, agitation, and changes in appetite.
Benefits of weekly telehealth visits include:
Real-time troubleshooting: Caregivers can describe symptoms as they are happening and receive immediate guidance, often preventing escalation into a crisis.
Reinforced education: Repeated, short teaching sessions help caregivers retain and apply information better than a single extended teaching visit.
Stronger relationships: Caregivers often feel seen and supported when a clinician regularly checks in on both the patient and the family’s emotional well-being.
For agencies, telehealth offers a flexible way to extend expert support between in-person visits without overloading staff, especially in rural or high-volume settings.
Educational Videos and Learning Resources
The I-HoME program pairs tele-visits with caregiver education videos that teach practical skills, such as recognizing symptom changes and using medications as prescribed. Other pilot work in hospice has shown that caregivers are willing to watch multiple short videos and often report feeling more prepared afterward.
Hospice providers can build on this model by using or recommending:
Educational nursing visits that incorporate video-based teaching
Training videos, such as those available on The Hospice Care Plan YouTube channel, which walk caregivers through common end-of-life symptoms and comfort measures
The Hospice Care Plan guide, which allows caregivers to track symptoms, medications, and care routines in a simple, structured way
These tools let caregivers learn at their own pace and revisit topics as often as needed, which is especially valuable when they are tired, stressed, or have varying levels of health literacy.
End-of-Life Doula Partnership and Advocacy
End-of-life doulas (sometimes called life transition coaches) offer non-medical, holistic support that complements hospice services. They often:
Reinforce the education provided by hospice nurses and nurse practitioners
Help families understand what is happening physically, emotionally, and spiritually
Act as advocates during care conferences and challenging family conversations
However, it is crucial to be transparent: the end-of-life doula field is currently unregulated. There is no nationally recognized licensing body or standardized accreditation, and “certification” typically only means that a person completed a particular school’s curriculum, which may not be externally validated. Because of this, agencies should guide families in thoughtfully choosing end-of-life doulas and view them as partners who support, rather than replace, licensed hospice professionals.
Studies in home hospice settings show that when caregivers feel less comfortable managing symptoms, they experience more burden, lower satisfaction, and lower ratings of end-of-life care. When their comfort and skills improve, these measures move in a better direction.
Confident caregivers are more likely to:
Recognize early signs of pain, anxiety, or respiratory distress and respond promptly
Use prescribed medications safely and effectively, reducing unnecessary suffering and late-night crisis calls
Communicate clearly with the hospice team, giving accurate reports that lead to better care plans
Education also helps caregivers understand which changes are expected at the end of life and which require urgent attention, reducing panic and unnecessary emergency department visits. By teaching families what normal dying can look like, hospice teams convert fear into informed compassion.
Family Preparation: The Hospice Journey Handbook
Even the most skilled hospice team cannot be at the bedside 24/7. Families need accessible, trustworthy resources they can return to again and again as the journey unfolds.
The Hospice Journey Handbook: Your Complete Guide Through the Hospice Experience offers plain-language information about what to expect physically, emotionally, and practically during home hospice care. It addresses both the meaningful and the very hard parts of the experience, helping families feel less alone and more prepared. When used alongside ongoing team support, such a handbook can:
Normalize the emotional ups and downs of caregiving and grief
Help families anticipate likely changes, so fewer events feel like emergencies
Support powers of attorney and decision-makers in understanding options and advocating for patient-centered choices
Encouraging caregivers, powers of attorney, and key family members to read a comprehensive hospice guide early in the admission can set a shared foundation for communication and expectations throughout the plan of care.
Finding Qualified Support: Navigating the Unregulated Doula Field
Because end-of-life doula work is not regulated, families and hospice providers must take extra care in choosing the right person. This is a crucial ethical responsibility in protecting vulnerable patients and overwhelmed caregivers.
What to Look For in an End-of-Life Doula
When helping families consider a doula or life transition coach, recommend they look for:
Strong word-of-mouth referrals from trusted professionals or families who have worked with the doula
Verified testimonials that describe specific, concrete ways the doula supported patients and families
Clear role boundaries, with an understanding that the doula does not provide medical care or override hospice clinical decisions
Comfort with hospice collaboration, including willingness to attend care conferences, follow care plans, and communicate respectfully with the clinical team
You might also suggest a brief, structured interview before hiring, where families can ask about experience with similar diagnoses, cultural or spiritual sensitivity, and availability during anticipated periods of decline.
Red Flags and Verification Steps
To protect patients and families, teach them to be cautious when they notice:
Promises to “cure” illness, provide medical treatments, or replace hospice services
Pressure to stop medications or disregard the physician’s or nurse’s recommendations
Vague or unverifiable training claims, especially without references or testimonials
Reluctance to collaborate with the hospice team or refusal to document services clearly
Hospice providers can support families by offering a simple checklist for interviewing doulas and by clarifying exactly how the hospice team and doula can work together to enhance, not fragment, care.
Hospice Providers: Your Next Steps to Excellence
Hospice professionals are uniquely positioned to turn the I-HoME lessons into everyday practice. Even small changes in how agencies educate and support caregivers can produce meaningful improvements in symptom control, patient comfort, and family satisfaction.
Practical steps for hospice programs:
Pilot weekly telehealth check-ins with a nurse practitioner or experienced hospice nurse for a small group of high-risk patients, focusing on structured symptom review and caregiver coaching.
Integrate educational videos into routine care, such as those from The Hospice Care Plan YouTube channel, and pair them with in-person or telehealth discussions to reinforce learning.
Provide caregivers with The Hospice Care Plan guide to help them track symptoms and interventions in a clear, organized way that aligns with the plan of care.
Encourage families to read The Hospice Journey Handbook early in the hospice admission, especially caregivers, powers of attorney, and key decision-makers.
Develop a framework for working with end-of-life doulas, including recommended interview questions, guidance on vetting, and clear written role boundaries to share with families.
For organizations with limited resources, these strategies can be scaled by starting with one component—such as monthly telehealth visits or a standard caregiver video series—and building over time as you see the impact on crises, revocations, and satisfaction scores.
When hospice teams treat caregiver confidence as a core clinical outcome, not just a side benefit, patient care changes, families feel safer, patients experience fewer unmanaged symptoms, and satisfaction surveys begin to reflect the quiet but powerful work of education, partnership, and advocacy at the bedside. Now is the time for hospice providers to embrace telehealth support, structured education tools, and carefully chosen doula partners as standard parts of their outreach—because when caregivers are supported, everyone’s end-of-life experience improves.
At present, no official organization oversees end-of-life doulas (EOLDs). Remember that some EOLDs listed in directories may no longer be practicing, so it’s important to verify their current status.
End-of-Life Doula Schools
The following are end-of-life (aka death doula) schools for those interested in becoming an end-of-life doula:
Remember that there is currently no official accrediting body for end-of-life doula programs. It’s advisable to conduct discovery sessions with any doula school you’re considering—whether or not it’s listed here—to verify that it meets your needs. Also, ask questions and contact references, such as former students, to assess whether the school offered a solid foundation for launching your own death doula practice.
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