Too Little, Too Late For Many New Yorkers Seeking Hospice
Sandra Lopez and her Chihuahua, Coco, were inseparable. He followed her everywhere, and kept Lopez's mood up when she was in pain — which was often.
On Oct. 15, 2014, Lopez died at age 49 of melanoma that had slowly spread throughout her body over the course of two years.
Lopez was in and out of the hospital in 2014, but during the months she was home, a hospice nurse from the Metropolitan Jewish Health System visited once a week to help manage the pain, backed up by a 24-hour, nurse-staffed phone line that Lopez called often.
"Some days the pain is so excruciating," Lopez told me in August from the couch in her Brooklyn apartment, "that the pain overrides the medication."
But despite evidence that hospices can greatly relieve discomfort, extend life and save money, and despite a generous hospice benefit available through both Medicare and Medicaid, relatively few people in New York take advantage of it, compared with elsewhere in the country.
The reasons for this local gap are complicated, but Jeanne Dennis, senior vice president of hospice and palliative care at the Visiting Nurse Service of New York, says one place to start is with patients' fears. "If you're referred to hospice, it means no one expects you to get better," Dennis says. "And that is, in my mind, a threshold that's difficult for people to step over."
Experts also focus on what they call medical culture, which can vary dramatically from region to region. According to this theory, physicians in the metropolitan area are specialists and sub-specialists, and institutions put a premium on treatments and tests. Even more than in other places, the goal in New York City is to cure patients rather than simply care for them. Treating and testing is just what they do — letting go isn't, says Dennis.
Physicians put off the conversation, she says, with rationalizations like, " 'It's a little too soon'; 'It's a little too early'; 'I don't have enough time today'; 'I'm not sure they're ready for it.' "
New York has 7 out of the 10 hospitals in the country with the fewest hospice referrals. Local academic medical centers — national leaders in research — do better, but still lag behind the rest of the country in their referral rates. It's a big contrast to some hospitals around the country, particularly several in Arizona, Utah and Florida, where more than 75 percent of dying patients take advantage of Medicare's hospice benefit.
Further, most hospice referrals in New York are for brief stays — a week or less — 2.5 times shorter than the national average. Szoa Geng, a health care consultant from the firm Strategy&, says when hospitals move people to hospice with just a few days left to live, the patients don't get the full hospice experience.
"They're not getting the psychosocial support, and their families are not," Geng says. "It can be a time of closure, and coming to peace with a lot of things in your life, and none of that can happen if you come onto hospice with a day left."
Hospice care mostly takes place at home, but it can also occur in freestanding hospices, nursing homes or designated areas of hospitals. To receive the care, a doctor must predict a patient is in the last six months of life without hope of improving. There's no penalty for outliving that prediction; some patients stabilize and go off hospice care, then return later when they start declining again.
About 25 percent of people in the New York metropolitan area use hospice care in their last six months of life, compared with close to 50 percent nationally. Statewide, the rate is closer to 30 percent. But that still makes New York 49th out of 50 states and the District of Columbia, according to the 2012 Dartmouth Health Atlas, the most recent statistics available.
Sandra Lopez said that before her oncologist told her about hospice care, she frequently called 911 to request an ambulance to take her to the hospital, where she would be admitted and spend days at a time. That happened "dozens and dozens of times" in a year, Lopez said.
At around $210 a day, Lopez's hospice care cost Medicaid tens of thousands of dollars — probably less than her revolving-door trips to the hospital (with all their multinight stays), but still a lot of money.
For Lopez, hospice helped her get ready to walk down the final road.
"I stopped worrying — like the worry box I used to be," she told me in August. "I just live my life normally, like everybody else, because worrying will just probably get me more sick."
Lopez knew that at some point her body would start shutting down, but she would never say how much time her doctors estimated she had remaining, because she didn't dwell on that, she said. She was at peace as she faced death and knew she could stay that way — as long as someone was with her at home, at her bedside, helping to subdue her pain.
This story is part of an NPR reporting partnership with WNYC and Kaiser Health News. Special thanks to WYNC's Data Team.
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Transcript
STEVE INSKEEP, HOST:
Many of us have reached that moment of realizing that a loved one needed hospice care designed to provide comfort in their final days. Many people have also declined that care. In fact, there's a regional divide. In New York people choose hospice less often than elsewhere. Fred Mogul of our member station WNYC reports on one New Yorker who did.
SANDRA LOPEZ: Hi, baby. Yeah.
FRED MOGUL, BYLINE: Sandra Lopez and her Chihuahua, Coco, are inseparable.
LOPEZ: You're my baby. Big kiss.
MOGUL: Coco helps keep Lopez's mood up when she's in pain, which is often.
LOPEZ: When I'm feeling really depressed, down and out, I'll pick him up, and he nourishes me back to life.
MOGUL: But Coco can only do so much. The 49-year-old Lopez is slowly dying of malignant skin cancer that's spread throughout her body.
LOPEZ: Some days the pain is so excruciating. The pain overrides the medication.
MOGUL: That happens much less since Heather Meyerend, a hospice nurse from the Metropolitan Jewish Health System, has been making weekly visits to Lopez's apartment in Brooklyn.
HEATHER MEYEREND: OK. Let me just do this, and we'll see.
MOGUL: Meyerend checks her breathing...
LOPEZ: I made coffee.
MOGUL: ...Her blood pressure and her vital signs.
MEYEREND: OK. That's pretty good. It's the same range.
MOGUL: And Meyerend talks to her about what's happening with her many medications.
MEYEREND: Are you using your treatment, the nebulizer?
LOPEZ: No. Remember I told you that it gets me dizzy...
MEYEREND: Oh, that's right. It makes you...
LOPEZ: That gets my heart racing.
MEYEREND: Yeah.
LOPEZ: I feel, like, so anxious and nervous, so I don't take it.
MOGUL: Lopez says she's lucky her doctor told her about home hospice care, but she's in the minority locally. Despite strong evidence that hospice can extend life and save money, only about 25 percent of terminally ill New Yorkers use hospices, compared with closer to 50 percent nationally. In parts of Arizona, Florida and Utah up to three-fourths of people pass away in a hospice. Jeanne Dennis, from the Visiting Nurses Service of New York, says there are many reasons why this area has some of the lowest hospice rates in the country, but one place to start is patients' fears.
JEANNE DENNIS: If you're referred to hospice, it means no one expects you to get better. And that is in my mind a threshold that's difficult for people to step over.
MOGUL: And it isn't just patients and their family members; doctors and hospitals in this region are geared to cure patients not just care for them. More than almost any place else in the country physicians here are specialists and subspecialists working or trained at high-powered academic medical centers. Treating and testing is just what they do; letting go isn't.
DENNIS: Physicians put off the conversation. It's a little too soon. It's a little too early. I don't have enough time today. I'm not sure they're ready for it.
MOGUL: New York has 7 out of the 10 hospitals in the country with the fewest hospice referrals. And unlike Sandra Lopez's experience, most hospice referrals here are for brief stays, a week or less, two and a half times shorter than the national average. Consultant Szoa Geng says when hospitals move patients to hospice with just a few days left to live, patients can benefit from the pain and symptom management, but they don't get the full hospice experience.
SZOA GENG: They're not really getting the psychosocial support, and their families are not. It can be a time of closure and coming to peace with a lot of things in your life. And none of that can happen if you come onto hospice with a day left.
MOGUL: Hospice care usually occurs at home, but it can also take place in a nursing home, freestanding hospice center or dedicated area of a hospital. In Sandra Lopez's apartment, Heather Meyerend is both a nurse and a chaplain.
MEYEREND: When you overcome something and you have that freedom to talk about it...
LOPEZ: That's good.
MEYEREND: ...It gives them hope, it encourages, it is.
LOPEZ: Definitely.
MEYEREND: It really is.
LOPEZ: I'm not confused who's in charge because I know God is in charge.
MOGUL: Hospice is a basic benefit covered by Medicare for six months for the elderly and terminally ill. Some patients can be recertified for longer, and some stabilize, go off hospice care and then return later when they start declining again. All of this can be difficult to pull off. Jeanne Dennis says even though hospice workers offer a lot of help, most of the heavy lifting - feeding, dressing, bathing - still falls to other caregivers.
DENNIS: It takes commitment. It takes confidence. It takes a lot for a family to get through that experience.
MOGUL: Back in Brooklyn, Sandra Lopez has help from family members and also from a part-time home health aide who helps get her up and around and fed. Lopez says hospice has improved her quality of life in many ways, especially in keeping her pain controlled so she doesn't have to call 911 for help.
LOPEZ: Before hospice four months ago, I was probably in the hospital, like, 15 times in a month.
MOGUL: So in the whole 12 months before the hospice, like, dozens and dozens of...
LOPEZ: Dozens of times. But I'm really glad that I have hospice, that I'm home with my daughter, you know. She's 15, and, you know, she don't need to see me running to the hospital every time, you know?
MOGUL: Lopez says most of those trips led to multi-night hospital stays. Hospice care has almost eliminated that, probably saving taxpayers thousands of dollars. By one estimate, hospices save around 20 percent of what Medicare spends on a patient's last six months of life. For Lopez, hospice is helping her get ready to walk down the final road.
LOPEZ: I stopped worrying like the worry box I used to be. I just live my life normally like everybody else because worrying will just probably get me more sick.
MOGUL: With tumors in her breast, arm and pancreas, Lopez knows at some point her body will start shutting down. But she says she's at peace and can stay that way as long as someone is with her at home, at her bedside, helping subdue her pain. For NPR News, I'm Fred Mogul in New York.
INSKEEP: Sandra Lopez passed away shortly after Fred Mogul filed that report. This story was part of a reporting partnership with NPR, WNYC and Kaiser Health News. Transcript provided by NPR, Copyright NPR.
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