What changed for caregivers this week — September 21, 2026
A California Medicaid rate increase is moving children out of hospitals and into home-based care, new research shows that where a person receives hospice affects the quality of that care, kidney failure patients are significantly underusing hospice, and the hospice industry is heading into midterms with a specific legislative agenda — a week where the gaps between who gets good end-of-life care and who doesn't were unusually visible.
A California Medicaid rate increase means hundreds of families may finally be able to bring a medically complex child home
Aveanna Healthcare told investors this week that a long-awaited Medicaid rate increase in California is expected to move hundreds of children out of children's hospitals and into home-based pediatric care, according to Home Health Care News. Aveanna, one of the largest pediatric home health providers in the country, said it sees California as a significant growth opportunity as the rate change makes it financially viable for agencies to staff and sustain home nursing for children with complex medical needs — the kind of care that requires skilled nursing visits, ventilator management, or feeding tube support.
For families in California who have a child with complex medical needs currently hospitalized or in a facility, this is a moment worth acting on. The practical barrier to pediatric home care has often been that Medicaid reimbursement rates were too low for agencies to recruit and retain the nurses required — meaning families were told home care was theoretically available but practically impossible to arrange. If that has been the answer a family has received in the past, the rate change is a reason to ask again. A call to the hospital's discharge planning team or social worker, specifically asking whether home nursing is now feasible given the rate environment, is the right starting point. Aveanna operates across California, but it is not the only provider — the local Regional Center or the California Department of Health Care Services can identify what licensed pediatric home health agencies are operating in a given area.
New research finds that where a person receives hospice care affects the quality of that care — and families should know what the data shows
Two analyses published this week examined factors shaping end-of-life care quality, with one finding that the setting in which hospice is delivered has a measurable impact on the care a patient receives, according to Hospice News. Patients receiving hospice in a nursing facility fared differently than those receiving it at home or in a dedicated inpatient hospice unit — a finding that matters because many families do not choose the setting deliberately. A parent or spouse ends up receiving hospice in a nursing facility because that is where they already were, not because anyone evaluated whether it was the best environment for end-of-life care.
The second finding from the same research is worth noting separately: women are the predominant medical decision-makers for family members at the end of life. That is consistent with what most caregiving data shows about who does the work — but it also means that the person fielding calls from the hospice team, signing paperwork, and making decisions about comfort care is most often a daughter, wife, or sister who is also managing her own life and, frequently, other caregiving responsibilities. For any family currently navigating a hospice enrollment decision, the setting question is one worth raising explicitly with the hospice intake coordinator: ask what the research shows about care quality differences across settings, and ask what the hospice's own data looks like for patients in each setting it serves. A hospice that cannot answer that question directly is telling you something.
Kidney failure patients are significantly underusing hospice — and families managing ESRD should understand why that gap exists
More than 831,000 Americans are living with kidney failure, and hospice care is substantially underutilized among that population, according to Hospice News. The reasons are systemic: end-stage renal disease has a treatment — dialysis — that can extend life indefinitely, which creates a structural tension with the hospice benefit's requirement that a patient forgo curative treatment to enroll. Many patients and families are never told that stopping dialysis is an option, or that hospice becomes available once that decision is made. Nephrologists, who manage ESRD patients for years, are often not trained in end-of-life conversations and may not raise hospice as a possibility even when a patient's quality of life on dialysis has deteriorated significantly.
For a family whose parent or spouse is on dialysis and struggling — with fatigue, hospitalizations, or a clear decline in how they are functioning day to day — this is a conversation worth initiating directly. Stopping dialysis is a legal, medically recognized decision that a patient with decision-making capacity can make at any time, and hospice enrollment typically follows within days. The question to bring to the nephrologist is specific: given where things stand right now, what would comfort-focused care look like if dialysis were stopped, and what is the expected timeline? If the nephrologist is not equipped to have that conversation, a palliative care consultation — which does not require stopping dialysis — can open it. The Kidney Supportive Care Research Group at kidneysupportivecare.org maintains resources specifically for patients and families facing this decision.
Hospice providers are heading into midterms with a specific legislative agenda — and one item on the list affects families directly
With midterm elections approaching, hospice industry groups have identified their top legislative priorities for the next Congress, according to Hospice News. Among the priorities: extending telehealth flexibilities that allow hospice physicians and nurses to conduct certain visits remotely, making permanent some of the regulatory changes that were introduced during the pandemic, and addressing the six-month prognosis requirement that governs hospice eligibility — the same structural mismatch that experts flagged two weeks ago as poorly suited to patients with dementia, heart failure, and other conditions with unpredictable decline trajectories.
The prognosis requirement is the item families are most likely to encounter directly. A patient who has been told they do not qualify for hospice because a physician cannot certify a six-month prognosis — even when the family's lived experience is one of ongoing, serious decline — is running into a rule that the industry itself is now pushing Congress to revisit. Whether that push produces legislation before the end of the year is uncertain; the midterm calendar is short and the legislative agenda is crowded. In the meantime, a family in that situation has two practical options: request a second opinion from a hospice medical director, who may assess prognosis differently than the primary physician, or ask for a palliative care referral that can provide symptom management and family support without the eligibility threshold. The National Hospice and Palliative Care Organization's helpline at 800-658-8898 can help families identify what options are available in their area.
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