RACHEL MARTIN, HOST:
People in this country are thinking differently about death. Fewer Americans are dying in a hospital with the support and care of doctors and nurses. More now choose to spend their final days at home, often getting hospice care. One big reason is because Medicare has allowed more patients to qualify for this benefit. But hospice only goes so far, and the actual burden of 24-hour care falls to the families. Blake Farmer of member station WPLN in Nashville reports.
BLAKE FARMER, BYLINE: Hospice usually means dying at home. And even though surveys show it's what most of us want, it's not all it's cracked up to be, says Joy Johnston.
JOY JOHNSTON: I'm not anti-hospice at all, but I think people aren't prepared for all the effort that it takes to give someone a good death at home.
FARMER: At age 40, Johnston relocated from Atlanta to New Mexico to care for her dying mother. And one intimate task tipped the scales - trying to get her mom's bowels moving. Constipation plagues many dying patients.
JOHNSTON: And it's ironically called the comfort kit that you get with home hospice. They include suppositories. And so I had to do that, and that was the lowest point. And I'm sure it was the lowest point for my mother, as well. And it didn't work.
FARMER: Johnston, like many family caregivers, was surprised that hospice still left most of the work to her. She says the final weeks of her mother's life, she felt more like a nurse than a daughter. Hospice primarily supports from afar, even in the intense final days, when adjusting morphine doses or handling typical symptoms like bleeding and breathing trouble. And that can be scary, says Dr. Joan Teno. She's a leading hospice researcher at Oregon Health and Science University.
JOAN TENO: Imagine if you're the caregiver and that you're in the house, and it's the middle of the night - 2 o'clock in the morning - and all of a sudden, your family member has a grand mal seizure.
FARMER: Teno says that's exactly what happened with her own mother. While it was difficult for me to witness, I knew what to do.
FARMER: Teno's father, who died in the last year, went to a hospice residence with round-the-clock medical attention. Teno called it a godsend. But an inpatient facility is rarely an option. With more people spending more time on hospice, hospice has become the most profitable service sector in health care. For-profit agencies now outnumber the nonprofits. But they aren't building hospice units, mostly because they're not profitable. So it's on families to make do at home, and often that means hiring extra help.
KARRIE VELEZ: You want some yogurt?
JEAN MCCASLAND: (Vocalizing).
VELEZ: Some peach - peach yogurt?
JEAN MCCASLAND: What's that?
FARMER: Hospice patient Jean McCasland is sitting at the kitchen table of her home outside Nashville. Nurse aide Karrie Velez is spooning out yogurt laced with that morning's medication, ground up in a pill crusher.
VELEZ: Because if you don't, she will just spit them out.
FARMER: Like a growing share of hospice patients, McCasland has Alzheimer's. And dementia patients need a service hospice rarely provides - a one-on-one sitter so the family caregiver can get some kind of break each day. John McCasland is Jean's husband of nearly 50 years.
JOHN MCCASLAND: I have said from the beginning that that was my intention - that she would be at home through the duration, as long as I was able.
FARMER: But what hospice provided wasn't enough. He had to drain their retirement accounts to hire a private caregiver out of pocket.
JOHN MCCASLAND: We were told that we would have a nurse visit once a week and more often if we wanted that.
FARMER: Hospice agencies usually bring in a hospital bed, an oxygen machine, a wheelchair - whatever equipment's needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce. Medicare says hospice can include home health aides and homemaker services. But in practice, it's often limited to a couple of baths a week.
JOHN MCCASLAND: I don't know. I guess I've just accepted what's available and not really thought beyond what could be because this is what they say they do.
FARMER: Families rarely consider whether they're getting their money's worth because they're not paying. It's all Medicare. John even keeps his monthly statements in a three-ring binder, but he'd never taken a closer look at what's charged to the government.
JOHN MCCASLAND: That's $200 a day.
FARMER: Nearly $200 every day, whether the hospice agency showed up or not. The daily rate drops a bit after the first two months, but John does the quick math. At that point, after Jean had been on hospice a year, Medicare had paid the agency $60,000.
JOHN MCCASLAND: When you consider the amount of money that's involved, perhaps they would provide somebody round the clock.
FARMER: Far from it. Medicare data reveals that on average, a nurse or aide is only there at the house about half an hour a day. When Jean died in October, the hospice nurse showed up afterward to officially document the death. It was just John and Karrie Velez, the longtime private caregiver, who'd been by her side for several days straight. And that's pretty typical, according to professor Katherine Ornstein.
KATHERINE ORNSTEIN: It does take a toll.
FARMER: Ornstein studies the last year of life at Mount Sinai Hospital in New York. And she finds the increasing burden on loved ones is reaching a breaking point.
ORNSTEIN: You know, our long-term care system in this country is really using families - unpaid family members. That's our situation.
FARMER: For some who've gone through home hospice with a loved one, the experience has changed their own wishes. Coneigh Sea, a social worker from Murfreesboro, Tenn., holds up a portrait of her husband.
CONEIGH SEA: This is probably five years before he died.
FARMER: He died of prostate cancer in their bedroom. Enough time has passed that the fog of managing his medication and bodily fluids - mostly by herself - is cleared. She says it was a burden.
SEA: And for me to say that, there's that guilt. You know? But I know better. It was a burden that I lovingly did.
FARMER: But Sea was scarred. And she recently sat down her grown children to make sure they don't do the same for her.
SEA: I told my family - if there is such a thing, I will come back, and I will haunt you (laughter). Don't you do that.
FARMER: Their options are limited, though. Sidestepping home hospice either means a pricey nursing home or passing away with the often unnecessary chaos and cost of a hospital, which is precisely what hospice was trying to avoid.
For NPR News, I'm Blake Farmer in Nashville.
(SOUNDBITE OF CHRISTIAN SCOTT'S "VIDEOTAPE")
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.