Every day in family meetings across the United States, we clinicians are delivering difficult truth to a family: Their loved one is nearing the end of life, and comfort-focused care is the appropriate (and desired) next step. Goals are aligned. The clinical picture is clear. And then the conversation hits a wall that has nothing to do with the practice or the art of medicine: Our patient cannot go home. Not because home isn’t wanted (it almost always is) but because home is no longer possible. A spouse in their eighties who cannot manage medications, transfers, or nighttime crises. Adult children who live hours away or are working two jobs. A home without a bedroom on the first floor, without a bathroom that accommodates a hospital bed, without the physical or emotional infrastructure to support someone who is actively dying. These are not failures of love. They are the realities of caregiving in America. And under current Medicare policy, those realities can determine whether a dying person ever accesses the end-of-life care they have earned. This is not a fringe scenario. It is one of the most common, least discussed structural failures in American end-of-life care, one that drives up costs, erodes workforce well-being, and denies patients and families the dignified deaths they deserve. It is also one that is eminently fixable, if policymakers are willing to act.
How the system fails at the worst possible moment
When a patient is dying and cannot be safely cared for at home, the clinical team faces a narrow set of options. Inpatient hospice is appropriate only for acute symptom crises and is time-limited by definition. Assisted living facilities vary widely in their capacity to support complex end-of-life needs and are rarely covered by Medicare. That leaves the skilled nursing facility, but accessing SNF-level nursing care through Medicare requires documentation of a skilled, rehabilitative need. For a patient who is dying, that documentation is, at best, a stretch.
What has emerged is a workaround so widespread it has become standard practice: the “trial of skilled rehabilitation.” A patient who has lost functional capacity, stopped eating, and articulated a clear preference for comfort is admitted to a SNF under a Medicare Part A skilled stay. The paperwork reflects a rehabilitative trajectory. The clinical reality does not. Therapy staff are dispatched to bedsides where patients cannot participate. Progress notes are written for patients who are not progressing. And everyone in the building, clinicians, nurses, discharge planning, family, understands the arrangement for what it is: the only available path to the nursing care this person actually needs.
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Compounding this, Medicare rules prohibit patients in SNFs from simultaneously accessing the full Medicare hospice benefit unless the hospice agency agrees to absorb room and board costs, typically $200 to $300 per day per patient, an arrangement that is financially unsustainable for most providers. The result is that patients who need both SNF-level nursing care and comprehensive hospice support frequently receive neither in full. They receive a skilled stay that is not truly skilled and a hospice referral, if it comes at all, that arrives too late or too incomplete to make the difference it should.
This is not fraud perpetrated by bad actors. It is the predictable consequence of a workforce trying to do right by patients within a regulatory framework that makes “right” structurally difficult. But it carries costs that are neither small nor evenly distributed.
The human cost of systemic misalignment
The literature on moral distress in health care is substantial and growing. A 2022 study published in the Journal of Pain and Symptom Management found that hospice and palliative care clinicians report significantly elevated rates of burnout compared to other specialties, with regulatory burden and documentation requirements among the most frequently cited contributors. The American Hospital Association identified administrative complexity, including navigating coverage restrictions, as a primary driver of workforce attrition in the field.
The SNF-hospice gap is a textbook case of the structural misalignment that produces moral injury. Nurses document skilled progress notes for patients who are actively dying. Clinicians facilitate billing arrangements that contradict the care plans they have developed with families. Social workers spend hours navigating coverage rules when they should be providing grief support. Therapy staff are placed in the position of justifying interventions for patients who cannot benefit from them. Each of these is a small fracture. Accumulated over months and careers, they become something more serious, and they are among the reasons experienced palliative care and hospice clinicians are leaving the field at rates the workforce cannot absorb.
For families, the consequences are less visible in the data but no less real. Research consistently demonstrates that families who report confusion or inconsistency in the care planning process experience more complicated grief, lower satisfaction with end-of-life care, and higher rates of post-loss depression. When a family has been told their loved one is dying, and then signs paperwork authorizing rehabilitation services, the cognitive dissonance does not resolve cleanly. It becomes part of how they carry the loss. It generates guilt that was never warranted and questions that should never have been left unanswered.
An equity problem, not just a policy problem
The burden of these coverage gaps is not borne equally. Patients with educated, health-literate family advocates, or access to providers with deep institutional knowledge of the system’s workarounds, typically have better odds of navigating toward goal-concordant care. Those without those resources frequently do not.
The data bear this out. A 2020 analysis in Health Affairs found that Black and Hispanic Medicare beneficiaries were significantly less likely than white beneficiaries to enroll in hospice, and when they did enroll, did so later in the disease trajectory: patterns consistent with structural barriers to access rather than differences in preference alone. The families least equipped to manage a complex home death, those with fewer financial resources, smaller support networks, older or disabled caregivers, are precisely the families most likely to need SNF placement at end of life. They are also the families least positioned to navigate the gaps in what that placement can provide.
Equitable end-of-life care requires more than clinical goodwill. It requires policy structures that do not systematically disadvantage those who are already most vulnerable.
What policy reform can accomplish
The problems are significant. The solutions, while not simple, are within reach. Several areas of CMS policy merit urgent attention:
- Restructure the SNF-hospice payment model. The concurrent care prohibition is a product of regulatory silos, not clinical evidence. CMS should pilot and scale models that allow full hospice benefit access within the SNF setting without requiring hospices to absorb facility costs. The Medicare Care Choices Model, which permitted concurrent curative and hospice care for certain diagnoses, demonstrated measurable improvements in hospice enrollment and patient-reported outcomes before its conclusion in 2021. A SNF-specific analog is both clinically logical and programmatically feasible.
- Recognize comfort-focused care as a skilled service. The skilled nursing benefit was built around a rehabilitative framework that does not account for the complexity of dying. Expert symptom management, palliative assessment, and comfort-focused care coordination require skilled clinical judgment. CMS coverage criteria should reflect that reality and should not require clinicians to construct rehabilitative goals to justify necessary nursing care for someone who is not going to rehabilitate.
- Create a viable covered pathway for patients who cannot die at home. This is the gap that receives the least attention and causes the most harm. Not every patient can die at home. Not every family can provide that care. Medicare policy must account for this reality with a coverage pathway, whether through hospice residential benefit expansion, SNF-hospice integration, or a new benefit category, that does not require a dying person to be admitted under false pretenses in order to access safe, supported care.
- Align SNF quality metrics with hospice outcomes. Current SNF quality reporting does not adequately capture end-of-life care quality. Integrating metrics around hospice referral timeliness, advance care planning documentation, and family-reported satisfaction would create structural incentives for facilities to build genuine hospice partnerships rather than treat hospice referral as a discharge event.
- Address hospice reimbursement adequacy. The Medicare hospice per diem rate has not kept pace with the actual cost of interdisciplinary care delivery. Reimbursement gaps translate directly into staffing constraints, which translate directly into the care patients receive. A workforce that cannot be sustained cannot deliver the care the benefit promises.
- Reduce documentation burden at end of life. Requirements that compel clinicians to document against clinical reality are not quality safeguards. They are sources of error, distress, and system distrust. Streamlined, goal-concordant documentation frameworks for clearly comfort-focused patients would reduce administrative burden and allow clinicians to direct their time and attention where it belongs.
The case for collective action
The problems described here did not emerge from malice. They emerged from a Medicare benefit structure built in the 1980s that could not anticipate the complexity of modern serious illness care, the demographic reality of an aging population, or the proportion of Americans who would spend their final months without the home-based support infrastructure the hospice benefit assumes they have. The rules made a kind of sense at the time. They have not kept pace with the world they now govern.
What makes this moment different is the convergence of factors that make reform genuinely possible: a bipartisan record of interest in hospice and palliative care policy improvement, a post-pandemic workforce crisis that has made the costs of clinician burnout impossible to ignore, and a robust body of evidence that goal-concordant end-of-life care is not only more humane but more cost-effective than the fragmented alternative.
The clinical community, professional societies, and policy organizations have done the foundational work. The evidence base is there. What remains is the translation of that evidence into regulatory action and the collective will to insist that where someone dies, and who can or cannot care for them at home, should not determine the quality of their final days.
Every patient in this country deserves access to end-of-life care that reflects their goals, honors their dignity, and does not require their family to sign paperwork describing a story that isn’t true. That is not an aspirational standard. It is a baseline one. We have the knowledge and the tools to meet it. What we need now are the policy structures that make it possible and the shared commitment, across clinical, regulatory, and legislative domains, to build them.
This essay is cited in the KevinMD record on end of life.
Patricia M. Fogelman is a nurse practitioner.
