A dearth of funds to cope with hospice care at home can leave family caregivers beyond wounded when a loved one dies.

According to a Huffington Post report, while the number of people dying at home rather than in an institution—whether a hospital, nursing home or hospice setting—is on the rise.

And while in many respects that’s a good thing for the dying person, for their caregivers it can take a terrible toll—not just because of the emotional difficulty in caring for a dying family member, but also because of money.

Citing statistics from the Centers for Disease Control and Prevention indicating a 29.5 percent increase in the number of those dying at home between 2000 and 2014, the report says that approximately a quarter of all U.S. deaths happen at home.

And, not coincidentally, the percentage of deaths that take place in hospitals, nursing homes and long-term care facilities has fallen.

Nobody likes the idea of a loved one dying alone in an institution, but family caregivers who take on the care of spouses or relatives at home are getting short shrift, not just physically and emotionally but also financially, the report says.

Social policies and financial concerns are behind the trend to die at home, it adds, and while everyone seems to be thinking about the cost of terminal care, particularly how much money Medicare can save by sending the terminally ill home to die outside an institution, nobody seems to be paying attention to its cost to caregivers.

According to the Kaiser Family Foundation, Medicare is footing a huge bill for end-of-life care, with approximately a quarter of traditional Medicare spending for health care going to pay for services provided to beneficiaries in their last year of life.

In fact, says KFF, approximately 8 out of 10 “of the 2.6 million people who died in the U.S. in 2014 were people on Medicare, making Medicare the largest insurer of health care provided during the last year of life.”

The Medicare hospice benefit, which began in 1983, saw the number of hospice admissions immediately increase, according to the report.

And since the benefit emphasizes home care, that encouraged many hospice services that started out around an inpatient model to revamp their operations so they could qualify for reimbursement. “As of 2014,” the report says, “almost 60 percent of patients in hospice were receiving that care—and dying—in their own homes.”

But as the elderly and ill are being encouraged to die at home, both because of the hospice benefit and because of cost-saving measures that capitalize on home care as far cheaper than institutionalized care, caregivers are the ones who are likely suffering.

And although for a patient to receive the Medicare benefit, he or she must have a full-time primary caregiver, that means the caregiver is at risk—not just from “caregiver syndrome,” the agglomeration of chronic disease, stress, depression and social isolation that comes with providing care that can last not just months but years, but also from the financial costs involved.

According to the report, an earlier Stanford University study found that 40 percent of family caregivers for Alzheimer’s patients, who might be providing care for 10—15 years, actually die earlier than the person for whom they’re caring—from stress-related disorders.

In addition, since the Rand Corporation estimates that family caregivers provide about $500 billion in unpaid services and spend an average of 253 hours a month providing care (translating to a job of about 60 hours per week), they’re looking at financial ruin as well. There’s not much room for a job in a week during which 60 hours are already consumed by patient care.

While they’re paying their loved ones’ extraneous expenses—and often essential ones as well—they’re depleting their own savings, spending whatever they may have saved for retirement and possibly even impoverishing themselves.

And during this time, even for a relative on hospice care, they seldom receive enough support from an outside source to relieve the burdens they carry.

And while some hospice organizations may do an excellent job of supporting the family, others do not. The relative is left to carry the burden alone, sometimes at terrible emotional cost.

The problem looks likely to grow under the proposed replacement for the Affordable Care Act, since help with mental health issues is not a priority.

In fact, according to a report in The Atlantic, mental health coverage would be slashed under the American Health Care Act, leaving those without money to spare for their own care while tending to a loved one to face their own old age with problems that surpass the fiscal and move into the realm of the existential.

But there’s also the AHCA’s potential effect on hospice care itself. A report from Hospice Action Network says, “The AHCA … changes the way the federal government pays for Medicaid, changing from a percentage of the state’s total cost to a per-participant rate starting at 85 percent of what the state spent in 2015. This may not affect hospice programs directly, but as the hospice benefit in Medicaid is optional, it is possible that some states could choose to not offer the benefit under this new payment scheme.”

Add to that the fact that the AHCA will slash Medicaid funding, and both end-of-life patients and their caregivers who rely on Medicaid will find themselves facing a possible loss of care at the worst possible time—resulting in an even greater strain on caregivers, who must cope with the results.

Instant Insights /

Caregivers wounded in more ways than one when relative dies at home

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