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, Lopez, died at age 49 of pancreatic and vaginal cancer that had slowly spread throughout her body over two years. She left behind a 15-year-old daughter and little Coco. But with hospice care, she spent her last weeks where she wanted to be — at home, with her pain under control.

Sandra was in and out of the hospital in 2014, but for the months she was home, a hospice nurse from 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,” she 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 to 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 other places, the goal is to cure patients and not just care for them. Treating and testing is just what they do — letting go isn’t, says Dennis.

“Physicians put off the conversation [about hospice]: ‘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,’” Dennis says.

New York has 7 out of the ten hospitals in the United States 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 healthcare 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 to close to 50 percent nationally. Statewide, the rate is closer to 30 percent. But that still makes New York 50th out of 51 states and the District of Columbia, according to the 2011 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 their multi-night 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. Facing death, she was at peace and knew she could stay that way — as long as someone was with her at home, at her bedside, helping subdue her pain.

This story is part of a reporting partnership between NPR, WNYC and Kaiser Health News. Special thanks to WYNC’s Data Team.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

The National Children’s Study has been cancelled despite almost 10 years of work and $1.3 billion of funding after a National Institutes of Health working group concluded that the project had gotten too expensive to continue.

Researchers and children’s health advocates, meanwhile, fear that while funding for smaller projects will continue in 2015 with an already appropriated $165 million, NIH may use that money for research not related to children’s health.

The ambitious study, commissioned through the passage of the Children’s Health Act in 2000, set out to follow 100,000 children from birth to age 21 and track the effects of a broad range of environmental and biological factors on their health. However, concerns about the study’s design, research methodology and management, most recently detailed in a June 16 report by the National Academy of Sciences, led to questions about whether the effort should continue. An NIH working group was charged with evaluating these issues.

“Based on the working group’s findings and internal deliberation, I am accepting … findings that the NCS is not feasible,” said NIH Director Francis Collins in the Dec. 12 announcement of the program’s dismantlement. “I am disappointed that this study failed to achieve its goals. Yet I am optimistic that other approaches will provide answers to these important research questions.”

An NIH spokesperson said that the agency will use the experiences from the National Children’s Study, including best practices on data collection and recruitment, to examine the links between environmental factors and child health and development in the smaller studies to be started in 2015.

“NIH will work with Congress to address any questions that they may have about the NCS. It’s important to note that the Vanguard study [the pilot study that was the precursor to the NCS] did provide insights on best practices and strategies for conducting studies of this size and complexity,” the spokesperson said.

Dean Baker, director at the Center for Occupational and Environmental Health at the University of California Irvine, was disappointed with the decision and says there is cause for concern because NIH could use the $165 million for other research while still asserting that the agency has been doing what is required by the Children’s Health Act.

“I hope there’s something that could be used as the successor to National Children’s Study, otherwise the funding will evaporate in following years,” Baker said, who was involved in the initial study design and Vanguard Study.

NIH has 90 days to submit new research plans to Congress.

Nigel Paneth, a professor of epidemiology and pediatrics at the University of Michigan, was involved with designing the study from its inception in 2000, and although he views the cancellation as the right decision, he doesn’t agree with the way NIH dismantled the work at the original 40 sites and doesn’t think the communications via email and letters with participants is being handled correctly. Researchers put a large effort into engaging communities and getting buy-in from participants.

“They [NIH] had no concept that they were real people out there,” he said. As the research was being slowed down and the number of sites was constricting, researchers were expected to turn over individuals’ information to other researchers without consulting participants. “It was mismanaged, from the conceptual idea to actualization in the field,” he said.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

More than 1 million people selected a health plan during the fourth week of the health law’s open enrollment and nearly 2.5 million have done so since it began Nov. 15, federal officials said Tuesday.

“And this was before an extremely busy weekend,” said Andy Slavitt, principal deputy administrator of the Centers for Medicare & Medicaid Services, which oversees the federal online marketplace used by 37 states.

Tuesday’s report did not include enrollment for the final three days before the Dec. 15 deadline for people to enroll if they want coverage to begin Jan. 1.

Just over half of those individuals who have selected plans since the health law’s second open enrollment season began are returning customers. Enrollment in the states running their own exchanges is not yet available.

As expected, interest in healthcare.gov soared in the final days before the mid-December deadline, with 1.6 million people phoning the call center from Dec. 13 through Dec. 15, officials told reporters.

To avoid longer waiting times, nearly 500,000 people who called just hours before the Dec. 15 midnight PST deadline left their contact information. Website officials have begun to call them back, Slavitt said, and they will be able to enroll in coverage to begin Jan. 1.

At its peak volume Monday, healthcare.gov had more than 125,000 concurrent users but “we did not run into capacity constraints,” Slavitt said. “In other words, we are able to handle even more volume in the coming months ahead.” One website “waiting room” was used for about 90 minutes for “several thousand” individuals creating new accounts, Slavitt said. Their average wait time was about three minutes. Returning customers or those doing “window shopping” were not affected, Slavitt added.

In a call with reporters, Slavitt and Kevin Counihan, the CEO of healthcare.gov, said federal officials have begun to automatically re-enroll 2014 customers who have not selected a new plan for 2015. For consumers whose current coverage won’t be offered next year – less than 5 percent of current enrollees – an automated matching process has begun to place individuals in similar coverage, Counihan said.

Counihan said the website has been sending daily updates to insurers to let them know about people that have switched health plans, helping to avoid confusion that could lead to insurers double-billing consumers. Separately Tuesday, America’s Health Insurance Plans said they would give consumers additional time to pay premiums due Jan. 1 and would provide prompt refunds if individuals were mistakenly billed for two health plans.

Several states, including California and Minnesota, have extended enrollment deadlines for coverage to begin Jan. 1.

Earlier Tuesday the consulting firm Avalere Health estimated that 10.5 million people would enroll in the health law’s state and federal exchanges by the end of 2015. Administration officials have estimated that about 9 million people would enroll in the exchanges while the Congressional Budget Office has estimated 13 million.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

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