When families choose hospice care for a dying loved one, they expect comprehensive support during one of life’s most vulnerable times. They picture compassionate nurses, attentive care, and the promise that their loved one won’t die alone. However, not all hospice agencies provide the same level of care, and recent research reveals troubling patterns that families need to understand.
A groundbreaking 2025 study published in Health Affairs found that private equity-owned hospice agencies report the highest profit margins while spending the least on direct patient care compared to all other ownership models. This means fewer nursing visits, less hands-on support, and higher rates of hospital admissions—exactly when families need help most. Understanding these gaps helps families make informed decisions and shows why adding an end-of-life doula to the care team can make a meaningful difference.
This article explores what the research tells us about for-profit hospice care, the specific support that often gets left behind, and how end-of-life doulas can bridge these critical gaps to ensure families receive the comprehensive support they deserve.
The Hidden Reality of For-Profit Hospice
Recent research paints a concerning picture of how ownership structure affects the quality of hospice care. The 2025 study examined nearly 3,000 hospice agencies using 2022 Medicare cost reports and found significant differences depending on ownership. Private equity-owned hospices reported profit margins of 7.6%—the highest among all ownership types—while spending approximately 25% less on direct patient care than other models.
What does “direct patient care” actually mean? It includes nursing visits, health aide services, medications, medical equipment, and the hands-on support that keeps patients comfortable at home. When hospices spend less in these areas, patients experience more crises that could have been prevented with adequate support. The research found that lower hospice spending on direct patient care correlates with higher rates of hospital admissions, intensive care unit stays, and emergency department visits.
A broader body of research has consistently found that for-profit hospice ownership is associated with poorer quality outcomes. These agencies show higher rates of complaints from families, more “live discharges” (removing patients from hospice before death), and higher hospitalization rates compared to not-for-profit hospices. Approximately 90% of hospices with the lowest spending on direct patient care and the highest hospital use rates are for-profit entities. These aren’t isolated findings but patterns that affect thousands of families across the United States.
What Gets Left Behind
When hospice agencies focus on administrative efficiency and profit margins, certain types of support tend to disappear first. Emotional support often becomes rushed or superficial when nurses have limited time for each visit. Families report feeling that medical staff addresses physical symptoms but leaves emotional and psychological needs largely unmet.
Spiritual care receives even less attention in many for-profit settings. While hospice regulations require a spiritual assessment, the depth of spiritual support varies dramatically across agencies. Families may see a chaplain once or twice. Still, ongoing spiritual companionship—the kind that helps someone process their fears about death or find meaning in suffering—rarely happens in time-constrained hospice models.
The reduction in visit frequency creates additional problems. When nurses visit less often, families must manage symptoms and crises on their own for longer periods. This increases anxiety, reduces confidence in caregiving abilities, and frequently leads to those preventable emergency calls. Family education suffers when there’s simply not enough time to explain what’s happening, what to expect next, and how to provide comfort measures at home.
End-of-Life Doulas Bridge the Gap
End-of-life doulas are trained professionals who provide non-medical, holistic support to people navigating serious and terminal illness. Unlike hospice workers who must follow Medicare regulations about visit frequency and documentation, end-of-life doulas have the flexibility to spend extended time with families. They serve as life transition coaches, supporting the dying person and the entire family system through one of life’s most challenging experiences.
An end-of-life doula’s role complements hospice services rather than replacing them. While hospice nurses manage medical symptoms, end-of-life doulas focus on emotional, social, and spiritual dimensions of the dying experience. They provide education about the dying process in a language families can understand, helping reduce fear and increase confidence. This collaboration between medical and non-medical support creates the comprehensive care that families need.
Research shows that families working with end-of-life doulas report feeling empowered—practically and emotionally—to deliver the best end-of-life care possible. They develop what researchers call “death literacy,” which means understanding what’s happening and knowing how to respond confidently rather than panic. This knowledge directly reduces the costly and disruptive emergency calls that occur when families feel overwhelmed and unsupported.
Services Most Hospices Don’t Provide
Vigil planning and vigil sitting represent crucial services that most hospice agencies—whether for-profit or not-for-profit—simply don’t offer. Vigil planning involves creating a detailed plan for the final days and hours of life, including who will be present, what the environment will look and feel like, and what rituals or practices will bring comfort. End-of-life doulas guide families through these decisions, helping them think through details they might not have considered.
Vigil sitting means being physically present during the active dying phase, providing continuous companionship so the person doesn’t die alone. This presence offers tremendous comfort to both the dying person and their family members, who may need breaks for rest or self-care. Hospice volunteers sometimes provide this service, but availability varies widely, and many families never learn it’s even possible to request this support.
Legacy projects create lasting connections between the dying person and their loved ones. These might include recording life stories, creating memory books, writing letters to future grandchildren, or documenting family recipes and traditions. The process of creating these legacies often brings unexpected healing and meaning to the final weeks of life. While some hospice social workers facilitate legacy work, the time constraints of their caseloads often make this impossible.
Extended emotional and spiritual companionship represents another service that falls outside typical hospice care models. End-of-life doulas build deep, trusting relationships with families over weeks or months, creating safe spaces to explore fears, process grief, and find meaning in the experience. Given their many responsibilities, this ongoing presence provides continuity that busy hospice staff simply cannot offer.
Finding the Right Support
Locating a qualified end-of-life doula requires knowing where to look and what questions to ask. The Compassion Crossing website provides a comprehensive “Find an End-of-Life Doula” section in their resources page at https://compassioncrossing.info/resources/#End-of-Life_Doula_Resources. This directory connects families with trained professionals in their local area who can provide support throughout the illness journey.
When interviewing potential end-of-life doulas, families should ask about training and experience. Because the field remains unregulated and lacks oversight, it’s essential to verify that someone has completed comprehensive training from a reputable program. Ask how long they’ve been practicing, how many families they’ve served, and whether they have experience with your loved one’s specific condition. Request references from families they’ve previously supported.
Understanding that end-of-life doulas work alongside hospice—not instead of it—helps families see how these roles complement each other. The end-of-life doula coordinates with the hospice team, attends to the family’s emotional and spiritual needs, and fills the time gaps between medical visits. This collaboration enhances the overall care experience when everyone understands their role and communicates effectively.
Taking Action for Better Care
Families have the right to build a complete care team that addresses all their needs during this sacred time. When selecting a hospice agency, ask direct questions about spending on direct patient care, nurse visit frequency, and availability of social workers and chaplains. Research the agency’s ownership structure and identify quality indicators such as low hospitalization rates and high family satisfaction scores.
Adding an end-of-life doula to the care team matters because it ensures that emotional, social, and spiritual support receive the same attention as physical symptom management. This comprehensive approach reduces crises, decreases family anxiety, and creates the peaceful dying experience that most people hope for. Families who receive this level of support report better outcomes and healthier grief processes after their loved one dies.
Every family deserves complete support during end-of-life transitions. Seeking additional help beyond what hospice provides isn’t a criticism of hardworking nurses and staff—it’s a recognition that one healthcare model can’t meet every need. You don’t have to navigate this alone. Resources exist to help you create the caring, peaceful experience you want for your loved one. Taking action now to build your complete care team is an act of love that honors the life you’re celebrating and the loss you’re facing together.
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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