I've recently posted about Medical Aid in Dying (MAID), which is quite controversial. An alternative model of end of life care is a hospice, which offers palliative care to patients with terminal diagnoses. But it turns out that Medicare only covers very limited hospice care, so that most patients who qualify medically have to be cared for by relatives at home.
Slate has the story, by a hospice doctor.
“But They Are Dying.” Hospice physicians like me can’t usually offer patients the care they need.
By Charlotte Grinberg
"A patient qualifies for hospice when they have a terminal illness with a prognosis of six months or less based on the natural progression of their disease. Hospice does not usually provide 24/7 private care or the physical place of residence for the dying; typically, people with a terminal diagnosis who opt against further medical interventions die at home, and with significant caregiving duties provided by someone in their family or hired privately. The only place where people receive 24/7 care by hospice-trained professionals are inpatient hospice facilities.
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"I also work with patients who are under routine care at home or in an assisted living or a nursing facility. To me it’s clear that continuous attention provides a better experience, for patients and their loved ones. But most hospice patients will never be able to access inpatient hospice care. In fact, most hospices across America don’t even have inpatient hospice facilities because they are expensive to build, staff, and maintain, and ultimately depend heavily on philanthropy to both build and cover ongoing operations. Instead, dying patients only see a hospice nurse approximately once per week and are able to call a hospice triage nurse 24/7. They rarely—or never—see a hospice physician.
"The average cost of routine hospice at an inpatient hospice facility is $350 a day. Medicare will only cover inpatient hospice care under very specific circumstances. Families can request “respite care” for five days at a time to get temporary relief from serving as caregivers. Patients can also meet a General Inpatient Hospice level of care. The GIP level of care is intended to cover the time it takes to stabilize a crisis of acute symptoms that cannot be managed in any care setting other than a Medicare-certified inpatient hospice facility (or a contracted hospital or nursing facility). Once a patient’s symptoms are stabilized, the payment for room and board ceases, and the patient is considered to be in a routine level of care.
GIP is only approved when there is a crisis of physical symptoms such as pain, vomiting, seizures, or difficulty breathing. In 2021, only about 1 percent of all hospice days in the United States qualified for the GIP level. Medicare specifies that GIP is not appropriate for situations where a patient’s caregiver support has simply broken down. Complete caregiver breakdown would also not qualify someone for respite care, because respite care is specifically designed to be temporary relief. The primary burden still falls on the patient’s support system, if they have one, to simply figure out how to manage."