End-of-Life Care in Nursing Homes: Hospice, Palliative Options, and Planning

Roughly 20 percent of Americans die in nursing homes each year, according to the Centers for Disease Control and Prevention — a figure that makes skilled nursing facilities one of the most consequential settings for end-of-life care in the country. That care unfolds across a surprisingly complex regulatory and clinical landscape, where hospice eligibility rules, palliative care frameworks, and a resident's own documented wishes all have to align. This page maps that landscape: what hospice and palliative care actually mean inside a nursing home, how Medicare and Medicaid govern them, where the real friction points are, and what planning ahead actually looks like in practice.

Definition and Scope

Palliative care and hospice care are related but not identical — a distinction that carries real clinical and financial consequences inside a nursing home.

Palliative care is a broad approach to relieving suffering — pain, breathlessness, anxiety, nausea — at any stage of illness, alongside curative or life-prolonging treatment. The World Health Organization defines palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness" (WHO, Palliative Care Fact Sheet). It is not limited to the dying. A 65-year-old resident receiving chemotherapy can receive palliative care.

Hospice care is palliative care in a specific, regulated configuration: it is delivered when a physician certifies that a patient has a terminal prognosis of 6 months or fewer if the illness follows its expected course. At that point, the treatment philosophy pivots away from curative intervention toward comfort and quality of life. In a nursing home, hospice is almost always delivered by a separate Medicare-certified hospice agency whose staff come into the facility — it is not the nursing home itself providing hospice, with narrow exceptions.

The regulatory home for nursing home end-of-life care spans at least two federal programs: Medicare's hospice benefit under 42 CFR Part 418, and Medicaid's nursing facility requirements under 42 CFR Part 483. Both are administered by the Centers for Medicare & Medicaid Services (CMS).

Core Mechanics or Structure

When a nursing home resident elects hospice, something structurally unusual happens: two separate providers become simultaneously responsible for the same person. The nursing home retains responsibility for room, board, and the resident's baseline nursing facility care. The hospice agency assumes responsibility for pain management, symptom control, spiritual support, social work, and bereavement counseling for the family. Medicare pays both — but through separate benefit structures.

Medicare Part A covers the hospice benefit. The hospice agency is reimbursed through four benefit period levels: two 90-day periods, followed by an unlimited series of 60-day periods, each requiring re-certification of terminal prognosis. The hospice agency is reimbursed at a per-diem rate that varies by level of care: routine home care (the most common), continuous home care, inpatient respite care, and general inpatient care (CMS, Medicare Hospice Benefit).

Meanwhile, if the resident is Medicaid-eligible and in a Medicaid-certified facility, Medicaid typically covers the room and board portion — but only the portion exceeding what the hospice per diem already reimburses. The mechanics here can create billing complexity that families rarely anticipate.

Advance directives — including Do Not Resuscitate (DNR) orders, Do Not Intubate (DNI) orders, and POLST (Physician Orders for Life-Sustaining Treatment) forms — are the clinical instruments that translate a resident's preferences into actionable medical orders. POLST is recognized in 48 states plus the District of Columbia as of the National POLST Organization's registry, and nursing homes are required under the Patient Self-Determination Act of 1990 to ask about and document these directives at admission.

Causal Relationships or Drivers

Late hospice enrollment is one of the most consistent findings in end-of-life research. The Medicare Payment Advisory Commission (MedPAC) has documented that a substantial share of Medicare hospice beneficiaries are enrolled for fewer than 7 days before death — meaning the full benefit (including extended symptom management and family support) is never used. Three structural drivers account for most of this pattern.

First, the 6-month prognosis requirement creates hesitation among physicians who are uncertain about trajectories, particularly for non-cancer diagnoses like heart failure, COPD, and dementia. Dementia follows a particularly unpredictable course; the National Hospice and Palliative Care Organization (NHPCO) has noted that dementia patients are often referred to hospice significantly later than cancer patients, despite equivalent symptom burden.

Second, the hospice election requires a resident to formally waive Medicare coverage for "curative" treatment related to the terminal diagnosis. For a resident who is ambivalent about stopping curative treatment — or whose family is ambivalent — this creates a psychological barrier with real clinical stakes.

Third, nursing homes themselves face a structural incentive conflict: when a resident transitions to hospice, the facility's Medicare Part A skilled nursing reimbursement (if active) typically ends, because skilled nursing care and hospice cannot be billed simultaneously for the same condition. The regulatory context for nursing home care makes clear that these reimbursement rules shape clinical decision-making in ways families may not anticipate.

Classification Boundaries

Four distinct care categories operate in nursing home end-of-life settings, and they do not overlap cleanly.

Skilled nursing care targets recovery or maintenance of function. It is time-limited under Medicare Part A and requires documented medical necessity for skilled services.

Palliative care consultation can occur alongside any level of care — skilled or custodial — and does not require a terminal diagnosis. It is typically delivered by a consulting team or embedded staff.

Hospice care requires terminal certification, a formal election, and a Medicare-certified hospice provider. It supersedes the Medicare Part A skilled nursing benefit for the terminal condition.

Comfort-focused care without hospice is a fourth, often overlooked option: a resident who meets hospice criteria but declines the formal election (or whose family declines it) can still receive comfort-oriented care under the nursing home's own care plan, without enrolling in hospice. This does not trigger the waiver of curative treatment and does not activate the hospice benefit structure — but it also does not provide the same level of interdisciplinary hospice team support.

Understanding these boundaries matters especially for residents with dementia care needs, where prognosis is uncertain and family preferences about curative treatment tend to evolve over time.

Tradeoffs and Tensions

The hospice election waiver is arguably the most contested feature of the Medicare hospice benefit. Requiring a patient to formally abandon curative treatment in order to access comfort-focused care strikes many clinicians and ethicists as a false choice — particularly for conditions like heart failure, where some interventions (diuretics, for instance) serve both curative and comfort purposes simultaneously.

CMS launched the Medicare Care Choices Model pilot, which allowed certain beneficiaries to receive concurrent hospice-like services without waiving their right to curative treatment. The pilot ran from 2016 to 2021; results from the evaluation showed that participants had higher rates of hospice enrollment and lower rates of hospitalization in the last 90 days of life (CMS Innovation Center, Medicare Care Choices Model).

A second tension involves staffing. Nursing homes are not required to have dedicated palliative care staff. The CMS nursing home staffing standards set minimum requirements for registered nurses and nurse aides, but no federal mandate exists for palliative care specialists on staff. Families and residents may assume the facility has this expertise in-house; often, it does not.

Common Misconceptions

Hospice means giving up. This framing is both common and clinically inaccurate. Research published in the Journal of Pain and Symptom Management has found that hospice patients with certain diagnoses — including congestive heart failure and lung cancer — lived longer than matched non-hospice patients with similar conditions. The mechanisms are not fully established, but reduced hospitalizations and better symptom management likely contribute.

Hospice is only for the last few days. The Medicare hospice benefit begins at the 6-month terminal prognosis threshold. Enrolling close to death forfeits most of the benefit's value — the interdisciplinary team, the caregiver support, the advance planning time.

The nursing home handles everything once hospice starts. The nursing home and the hospice agency have distinct, contractually defined responsibilities. Coordination gaps between them are a documented quality problem. CMS requires a written agreement between the nursing home and the hospice agency specifying who is responsible for each service (42 CFR § 418.112).

Palliative care requires a terminal diagnosis. It does not. A resident receiving rehabilitation services after a hip fracture can receive palliative care for pain management simultaneously.

Checklist or Steps

The following sequence represents the documented pathway for initiating hospice care in a nursing home setting, drawn from CMS guidance and the requirements of 42 CFR Part 418.

  1. Terminal prognosis established — A physician (or nurse practitioner in some states) certifies a prognosis of 6 months or fewer if the illness runs its normal course.
  2. Hospice election form signed — The resident or legal representative signs the election statement, which also documents the waiver of Medicare coverage for curative treatment related to the terminal diagnosis.
  3. Hospice agency selected — The resident has the right to choose any Medicare-certified hospice provider serving the area; the nursing home may not restrict this choice.
  4. Written agreement executed — The hospice agency and nursing home sign a written agreement delineating services, per 42 CFR § 418.112.
  5. Interdisciplinary care plan developed — Within 5 days of enrollment, the hospice team must complete an initial assessment; a comprehensive plan must follow.
  6. Advance directives reviewed and updated — POLST, DNR/DNI, and any existing healthcare proxy documents are reviewed and reconciled with the hospice care plan.
  7. Care plan conferences scheduled — Ongoing coordination between nursing home staff and hospice team, with family involvement per the resident's preferences.
  8. Benefit period recertification — At 90 days, 90 days again, and then every 60 days, the attending physician must re-certify that the terminal prognosis still applies.

For a broader orientation to where end-of-life care fits within nursing home operations, the National Nursing Home Authority home page provides context on how this topic connects to admissions, quality, and care planning across the facility lifecycle.

Reference Table or Matrix

Care Type Terminal Diagnosis Required? Curative Treatment Allowed? Medicare Benefit Primary Provider
Palliative Care (general) No Yes No dedicated benefit; billed through usual care Nursing home or consulting team
Comfort Care without Hospice No Yes (at resident's election) No separate benefit Nursing home
Hospice (routine home care level) Yes (≤6 months) No (for terminal diagnosis) Part A, per diem ~$216/day (2024 base rate, CMS) Medicare-certified hospice agency
Hospice (general inpatient level) Yes (≤6 months) No (for terminal diagnosis) Part A, higher per diem ~$1,099/day (2024 base rate, CMS) Hospice agency in inpatient setting
Skilled Nursing Facility Care No Yes Part A, up to 100 days per benefit period Nursing home

2024 hospice payment rates: CMS Hospice Center

References