A new study offers surprising findings about end-of-life care — specifically, physicians tend to be more likely to accommodate the advanced-care wishes of patients with cancer or dementia than renal disease, congestive heart failure, pulmonary disease or frailty.
“There’s been a lot of focus on end-of-life care for cancer,” said Melissa Wachterman, the study’s principal author and a physician at the VA Boston Healthcare System and the Boston-based Brigham and Women’s Hospital. “But most people don’t die of cancer. And the quality of end-of-life care for those dying of other conditions … is not as good.”
The research was published online Sunday in JAMA Internal Medicine.
Researchers examined survey data from the families of about 34,000 people who died in the Veterans Affairs health system between Oct. 1, 2009 and Sept. 30, 2012. They looked at how those families rated the quality of medical care and whether patients had access to things like a palliative care consultation, whether they died in hospice or the intensive care unit — a majority prefer the former — and whether they had a do-not-resuscitate order in place, since those usually stem from end-of-life planning conversations.Use Our Content This KHN story can be republished for free (details).
About 60 percent of people with a relative dying of cancer or dementia said their relative got excellent end-of-life treatment, with about 80 percent saying the relative always got the care he or she wanted.
Those figures drop off for other conditions: About 55 percent of people reported excellent end-of-life care for relatives who died of renal, cardiovascular or pulmonary conditions, and about 54 percent indicated that for family members dying of “frailty.” Those same groups ranged between 73 and 77 percent in saying doctors always gave desired care.
Patients with these conditions were also markedly less likely to have a palliative-care consultation — meetings designed to focus care on alleviating pain and improving quality of life — and tended in greater numbers to die in the intensive care unit and not in hospice care. That’s out of line with many Americans’ stated preferences. Studies show most people want to die comfortably at home, opting for fewer rather than more treatments.
“There’s clearly room for improvement,” said Wachterman.
Though the study focused on the VA, she said, she would expect the trend to bear out in other health care settings.
The federal government has tried to make it easier for health professionals to accommodate patients’ dying wishes. Doctors can now bill Medicare, the health insurance program for senior citizens, for talking to them about end-of-life preferences. Federal estimates suggest that by 2040, people older than 65 will make up a fifth of the population.
But many physicians say they feel uncomfortable or don’t know how to have these talks.
Taking steps to better incorporate palliative doctors into the continuum of care could help, said Amos Bailey, a professor of palliative medicine at the University of Colorado Anschutz Medical Campus.
In the short term, though, there probably won’t be enough of those specialists to meet the growing need, he said, adding that primary care physicians must be prepared. Bailey, who also directs the school’s masters’ program in palliative care, was not involved with the study but wrote an accompanying opinion piece.
Culturally, Wachterman noted, doctors and patients alike don’t often think to talk about death preferences until it seems unavoidable. For cancer and dementia, she suggested, there may be a broader understanding that the diseases are terminal. And there’s a clearer timeline for when to start planning for death.
“Everybody gets that if you have advanced cancer, it’s very serious,” she said. But, she added, “There isn’t always the recognition that these other conditions are also very serious.”
But health professionals need to know what their patients would want, even if dying seems like an abstract idea, said Harriet Warshaw, executive director of the Conversation Project, a Boston-based group that promotes end-of-life planning.
“It’s always too early and too late,” she said. “We don’t know when we’re going to die, so it’s important to get those [plans] right, and have those discussions with our clinicians and our loved ones.”
Medicare payments help, she added. But advance-planning talks need to be integrated into routine care. For instance, electronic health records could prompt doctors to float the subject with patients.
Wachterman noted, however, that less care isn’t what everyone wants. For some patients who want to do everything possible to fight disease death in an intensive care unit could be the right outcome, even if it’s uncomfortable.
“The right amount of the ICU is not zero, even for people at the end of life. We want to match the use of invasive interventions with patient preferences,” she said.
But to unearth those preferences, it’s crucial to have systems and protocols that help foster open dialogue, Warshaw said.
“We know from the research people want to have [these conversations],” she said. “It’s about getting physicians over the fear of raising this. They’re not abandoning their patients. They’re continuing to help their patients on the life journey.”
The Supreme Court struck down key aspects of a Texas abortion law Monday, casting doubt on similar laws in nearly two dozen states.
At issue in the court’s decision were two specific provisions of a sweeping law to restrict abortions passed by the Texas legislature in 2013. The provisions before the court required doctors who perform abortions to have admitting privileges at a hospital no more than 30 miles from the abortion clinic and required abortion clinics to meet the same health and safety standards as “ambulatory surgical centers” that perform much more complicated procedures.
Opponents of the bill argued before the court that if both requirements were to be enforced, only 10 clinics would remain to perform abortions in Texas, compared to more than 40 before the law was passed. Such limited access in a state so large would cause an “undue burden” on a woman’s right to obtain an abortion, they said.
The court has said in the past that states can regulate access to abortion but not in a way that causes an undue burden on women.
In a 5-3 ruling, written by Justice Stephen Breyer, the court said that “both the admitting privileges and the surgical-center requirements place a substantial obstacle in the path of women seeking a previability abortion, constitute an undue burden on abortion access, and thus violate the Constitution.”
One of the key questions was which side Justice Anthony Kennedy, who has been a swing vote on abortion issues, would join. He signed onto the majority opinion with the four justices who traditionally support abortion rights.The immediate impact of the ruling means that the plaintiff in the case, Whole Woman’s Health, will not have to close any more of its Texas clinics.
“Every day Whole Woman’s Health treats our patients with compassion, respect and dignity,” said Amy Hagstrom Miller, the founder and CEO of the group. “And today the Supreme Court did the same. We’re thrilled that today justice was served and our clinics stay open.”
Many of the laws were based on models written by Americans United for Life, an anti-abortion legal group. Clark Forsythe, the group’s acting president, said Monday’s decision “endangers women nationwide as health and safety standards are at risk.”
The impact on other states with similar laws is not yet clear. According to the Guttmacher Institute, 14 states require physicians that perform abortions have admitting privileges or some other relationship with a nearby hospital, while 22 states have facility requirements that are near or exactly what is required to be an ambulatory surgical center.
The main dissent in the case was written by Justice Samuel Alito, and joined by Chief Justice John Roberts and Justice Clarence Thomas. They argued that the constitutional question should not have been triggered in the case, because part of the law had previously been challenged separately and the plaintiffs lost.
“As we have said, ‘a losing litigant deserves no rematch after a defeat fairly suffered, in adversarial proceedings, on an issue identical in substance to the one he subsequently seeks to raise,” the dissent said.
On June 15, the Leonard D. Schaeffer Initiative for Innovation in Health Policy held its inaugural event featuring Senator Ron Wyden and health policy experts from across the political spectrum on the topic of how to reform Medicare to improve care and coordination for Medicare’s chronically ill.
Chronic care: Getting its complexity and cost under control
The event comes at a time when legislation on Medicare reform for chronic care may be imminent: over the last two years, a bipartisan working group on chronic care has formed and the Senate Finance Committee has held hearings and published policy options on how best to tackle the changing landscape of health care for America’s elderly.
At the Schaeffer Initiative event, Senator Wyden called for Medicare reforms to support coordination, home health, benefit flexibility, and technology use that could improve care for chronically ill beneficiaries.
Senator Wyden also intimated that the bipartisan working group may release legislation early next year, which could include increased financial support for coordinating care for the sickest patients, greater use of technologies and financial support for appropriate home health care, greater flexibility for supplementary benefits in Medicare Advantage, and ways to support continuing innovation in Medicare.Chronic conditions among Medicare beneficiaries "The debate about American healthcare is way, way, way out of whack [particularly for] the striking lack of attention to what now dominates American health care: chronic illness." – Senator Ron Wyden
In Medicare today, health care for individuals with chronic conditions accounts for a staggering share of overall Medicare spending—a significant change from 1965 when Medicare started. In 2012, the Centers for Medicare and Medicaid Services (CMS) published a report detailing the prevalence and impact of chronic conditions (PDF) in Medicare.
The figure below details the disproportionate share of total Medicare spending for beneficiaries with chronic conditions—a share that increases as the number of chronic conditions increases. Beneficiaries with six or more chronic conditions represent only 14% of the Medicare Fee for Service beneficiary population but tally 46% of total Medicare spending.
Source: CMS. Chronic Conditions Among Medicare Beneficiaries, Chartbook: 2012 Edition, page 24. Available online at https://www.cms.gov/research-statistics-data-and-systems/statistics-trends-and-reports/chronic-conditions/downloads/2012chartbook.pdf.
In fact, the expense of a few combinations of chronic diseases drives Medicare spending to an astonishing degree. The four costliest three-disease combinations include beneficiaries with stroke, chronic kidney disease, and either asthma, chronic obstructive pulmonary disease, depression, or heart failure.
Total per capita costs for beneficiaries with these combinations of disease exceed $60,000---seven times that of the average Medicare beneficiary.Background on legislation
Senator Wyden proposed legislation in 2014 that would have established Better Care Plans (BPCs), a variation on Accountable Care Organizations, aimed at improving coordination of high cost, chronically ill Medicare beneficiaries. By requiring beneficiaries to actively enroll in such plans, they offered the potential to better engage patients, as multiple panelists at the event recommended.
Subsequently, in July 2014, the Senate Finance Committee held a hearing on how to address the unmet needs of patients with chronic illness, focusing on experiences of patients, caregivers, payers and health systems that have been involved in care for individuals with chronic disease. The following Finance Committee hearing on chronic care, in May 2015, focused on how to mobilize a plan, with prominent policy administrators and experts Patrick Conway and Mark Miller as witnesses.
Building on this, Senators Wyden and Hatch announced the launch of an on-going, bipartisan working group on improving chronic care for Medicare beneficiaries that released a policy options paper in December 2015 that outlined six key areas of reform.Four areas of reform discussed at the event
Framed around “Updating the Medicare guarantee,” Senator Wyden focused on four key areas of chronic care reform at the Schaeffer Initiative event:
- Coordination. The first of these four reform topics was coordination. While he credited the positive impact of free wellness visits, follow up coordination without added burdens on the patients is needed. Medicare recently added a fee code that newly reimburses physicians for the labor-intensive task of connecting all the dots associated with a chronically ill patient’s care.
- Targeted home visits. Second, Senator Wyden cited appropriate care in the home as a source of untapped Medicare savings and improved quality of life for seniors. He highlighted the Independence At Home (IAH) demonstration, touting early results indicating a savings of $3,000 per Medicare beneficiary.
Additionally, policymakers have argued that Medicare’s Accountable Care Organizations—physician groups accountable for quality and total cost of care for Medicare beneficiaries—are hampered by reimbursement constraints. Notable among the services that could be used more effectively is telemedicine. Another reform noted in the bipartisan working group policy options paper would waive telehealth reimbursement requirements for Accountable Care Organizations that had agreed to take on risk for financial losses.
- Flexibility in Medicare Advantage. The third area of reform focused on increasing flexibility within the Medicare Advantage program so as to enable more personalized insurance plans for individuals with special needs as a result of their chronic conditions.
As outlined in their December paper, one policy option to support flexibility in Medicare Advantage would be to allow Medicare Advantage plans to provide supplemental services that are related to the treatment or prevention of chronic disease. In their paper, they solicited comment on whether this flexibility should be granted to all Medicare Advantage plans, or a subset based on the plan’s record of quality performance or other criteria.
- Keeping up with innovation. Finally, Senator Wyden focused explicitly on the current inability of Medicare to keep up with advancements in science, like telemedicine and new drugs. While these exist, many are beyond the reach of Medicare beneficiaries because of current benefit design and other policies.
Among the policies they were included in the policy options paper is the elimination of geographic limitations on use of telemedicine consults in cases of suspected stroke. Additionally, the paper suggested allowing Medicare Advantage plans to include some telehealth services in their bid amounts to Medicare.
The main purpose for these reforms, as Senator Wyden strongly argued, is to improve the care for millions of elderly and disabled Americans with chronic conditions, and alleviate their suffering. Panelists were in agreement with that goal, but cautioned, however, not to expect huge savings from many of these reforms in the short run, as many improvements require investments in care managers and other infrastructure, but that a reasonable objective would be improvements in quality for similar or slightly lower costs.
The Schaeffer Initiative for Innovation in Health Policy, run jointly by Brookings and the USC Schaeffer Center, will also be releasing a series of policy analyses and recommendations later this year and in 2017, many of which can help inform this legislative process. Schaeffer Initiative work is being completed on Medicare Advantage and delivery system reform, prescription drug payment, and better coordinating post-acute care.Video
Cecilia Ramirez is worried about her weight and troubling symptoms that hint of diabetes, but she won’t seek medical help because she can’t afford it.
“I don’t go to the doctor when I’m sick — it’s too expensive,” she said, adding that worries about her weight and troubling symptoms that hint of diabetes will also have to wait until she can afford to make an appointment.
Though she is a sales worker at an insurance agency in Highlandtown, an East Baltimore neighborhood that has seen an influx of Hispanic immigrants in recent years, Ramirez, 23, has no health insurance.This KHN story also ran in The Baltimore Sun. It can be republished for free (details).
Her predicament is shared by thousands of Hispanic immigrants in East Baltimore, and millions nationally, who cannot afford regular medical services and are uninsured because they lack the benefits attached to legal U.S. residency and citizenship.
Ramirez’s parents came illegally to the U.S. from Mexico when she was 10. Her immigration status now — “lawfully present” — allows her to work and study here without fear of deportation, but she has no path to citizenship. She is ineligible for health coverage under the Affordable Care Act or any public insurance program.
(The Supreme Court’s decision last week in a related immigration case did not change this.)
Her $23,000 annual income would easily qualify her for Medicaid, but only her two young children can get it. Ramirez’s employer can’t afford to offer her private health insurance either, and even if it did, she doubts she could afford it. So, how can Ramirez deal with the hacking from her lungs?
“Vicks VapoRub,” offers her boss, David Rosario, drawing cynical laughter from Ramirez and others in the office.
Latinos, uninsured or not, face many challenges when it comes to finding medical care. Many have trouble speaking and understanding English, are poor and undereducated, or lack transportation. Others come from cultures where health care is a luxury they don’t regularly seek out.
But the inability of non-citizens to join affordable health plans remains the primary stumbling block separating people from Mexico, Central America and South America from care.
“What we’re seeing across the country is that the undocumented are one of the most vulnerable groups out there when it comes to insurability,” said Steven Lopez, manager of the health policy project at the National Council of La Raza, the largest Latino advocacy group in the U.S. “The opportunity to get regular health care is the key to finding greater opportunity. If you don’t have your health, you’re not going to progress in life.”
Nationwide, more than 5 million people living in the U.S. illegally are without medical coverage, with indications that most are Hispanic, according to an Urban Institute report released in March. Nearly half of all immigrants living here without permission are uninsured, compared with 10.5 percent of U.S. citizens and roughly 15 percent of non-citizens living here legally, the report noted. Hispanic adults’ uninsured rate fell to 28 percent last year — 13 percentage points below 2013 — but remains far higher than those of non-Hispanic whites, blacks and Asians, according to federal statistics released in May.Immigrants’ Uneven Access To Health Insurance
American citizens under 65 who don’t have employer-provided health insurance can buy it or qualify for Medicaid through Obamacare exchanges where they might also be eligible for tax credits.
Non-citizens in the U.S. illegally don’t have these options. Some immigrants classified as lawfully present — those on the path to citizenship or granted permission to remain in the country — can buy Obamacare policies, with tax credits if they qualify. They also can qualify under Medicaid if they meet certain criteria.
Source: Kaiser Family Foundation
“This is the tricky part for us,” said Leana Wen, Baltimore’s health commissioner. “The Affordable Care Act excludes these individuals” who lack authorization to live in the U.S. “They fall through the cracks.”
They have done so even as Mayor Stephanie Rawlings-Blake works to draw more immigrants here in the hope they will repopulate hollowed out inner-city blocks. Latinos, who figure prominently in the mayor’s drive to recruit 10,000 new families, continue to filter into several older East Baltimore neighborhoods, including Fells Point, Greektown, Highlandtown and Patterson Park.
Baltimore’s population includes around 30,000 Latinos, up from just 9,000 15 years ago, city officials say. Medical providers and Latino advocates say that 40 to 60 percent of them live in the U.S. illegally, a range close to the Urban Institute’s national estimates.
Health is a major concern. Baltimore Latinos are twice as likely as non-Latinos to say they have poor or fair health, according to a city health department survey in 2011.
There is insufficient data to make judgments about the health of the city’s Latinos or compare them to other groups. But death from cardiovascular disease and cancer were the two leading causes of death among the city’s Latinos in 2012, according to a 2014 report by the department. Unintentional injury and chronic liver disease or cirrhosis tied for the fourth leading cause of death among the city’s Latinos, but they were much less common among white and black populations, the report found.
“People can start businesses and buy homes, but they can’t get medical insurance,” said Rosario, who serves as board president for the Latino Providers Network, an organization that links Hispanics to services.
As a result, health providers say that when they see people come into their offices or clinics, they are often in advanced stages of illness.
“Typically, we see a lot of diabetes and obesity-related diseases, like high blood pressure,” said Kathleen Page, an infectious disease specialist at Johns Hopkins Hospital and a cofounder of Centro SOL, a Bayview clinic and outreach program that treats Hispanic clients at reduced prices. Baltimore Latinos suffer higher rates of those disorders despite being younger as a group than the rest of the city’s population. Chronic infections and mental health problems such as anxiety and depression run rampant, Page added.
About 95 percent of the Hispanic patients she sees at her HIV clinic are living here illegally and lack health insurance.
Latinos’ ability to find treatment is tied directly to their immigration status.
Some people in the U.S. without documentation can receive payments for baby deliveries through Emergency Medicaid. Federally qualified health clinics offer basic medical care to thousands of the uninsured at reduced rates, with no questions asked about status, but the federal government offers no insurance options for those living in the U.S. without permission.
Insurability can vary even within households, reflecting mixed immigration status among family members. Cecilia Ramirez’s mother, who does not have permission to live in the U.S., long remained uninsured, putting off treatment for uterine fibroids for years because she was worried about the cost of care.
Meanwhile, Ramirez’s children, 7-year-old Jenny and Kimberly, 3, receive insurance through Medicaid. Because they were born in the U.S., giving them citizenship, and they meet Medicaid’s eligibility standards, they are able to see primary care physicians and get other care if needed. Much of it is paid for, unlike their mother’s.
As a foreign-born child of immigrants who entered the U.S. without permission, Ramirez’s access to health care is problematic. She applied for and received “lawfully present” status under a 2012 Obama administration policy that allowed people who arrived in the U.S. before age 16 and are now under age 35 to work and study in the U.S. without fearing deportation. Some 665,000 others have also received such status nationwide, according to figures from the Department of Homeland Security. But they were also excluded from gaining health insurance under the Affordable Care Act by a related policy of the Department of Health and Human Services. Some states, including California and New York, have softened their standards and enrolled some people here illegally in Medicaid. But nationally, most remain without coverage.
To help people like Ramirez and other low-income people without permission to live here, several institutions in East Baltimore have cobbled together an array of medical services outside of typical hospital settings. Baltimore City, Johns Hopkins Bayview, two federally subsidized clinics and one charity-run clinic offer bilingual interpreters, health providers who speak Spanish and, perhaps most importantly, low fees and sliding scales for care.
The Access Partnership, or TAP, a Johns Hopkins charitable program, offers diagnostic tests and visits to specialists for very low fees, usually no more than $20. The program serves people who lack insurance, make 200 percent or less of the federal poverty level and have been local residents for six months. More than 90 percent are Hispanic, and none are asked if they are living in the U.S. illegally, said Barbara Cook, the group’s medical director.
Cecilia Ramirez’s mother got diagnostic tests and subsequent surgery a little over a year ago to remove her uterus with help from TAP. Nonetheless, Ramirez wonders if the outcome would have been better if she had gotten help earlier.
“If she had had insurance, she might have sought out care, instead of having to wait so long that they had to remove part of her body,” she said.
Blue Cross and Blue Shield of Minnesota will retreat from the sale of health plans to individuals and families in the state starting next year. The insurer, Minnesota’s largest, said extraordinary financial losses drove the decision.
“Based on current medical claim trends, Blue Cross is projecting a total loss of more than $500 million in the individual [health plan] segment over three years,” the insurer said in an emailed statement.
The Blues reported a loss of $265 million on insurance operations from individual market plans in 2015. The insurer said claims for medical care far exceeded premium revenue for those plans.This story is part of a partnership that includes Minnesota Public Radio, NPR and Kaiser Health News. It can be republished for free. (details)
“The individual market remains in transition and we look forward to working toward a more stable path with policy leaders here in Minnesota and at the national level,” the company stated. “Shifts and changes in health plan participation and market segments have contributed to a volatile individual market, where costs and prices have been escalating at unprecedented levels.”
The decision will have far-reaching implications.
Blue Cross Blue Shield says the change will affect about “103,000 Minnesotans [who] have purchased Blue Cross coverage on their own, through an agent or broker, or on MNsure,” the state’s insurance exchange.
“We understand and regret the difficulty we know this causes for some of our members,” the insurer wrote. “We will be notifying all of our members individually and work with them to assess and transition to alternative coverage options in 2017.”
Cynthia Cox of the Kaiser Family Foundation, who analyzes individual health insurance markets around the country, says what the Blues are doing in Minnesota is similar to a walk back by UnitedHealth Group, the nation’s largest health insurance company. (KHN is an editorially independent program of the Kaiser Family Foundation.)
“Right now what it seems like is that insurance companies are really trying to reset their strategy,” Cox said. “So they may be pulling out selectively in certain markets to reevaluate their strategy and participation in the exchanges.”
She said the individual markets just aren’t turning out as expected. “The hope was that these markets would encourage exchange competition and [get] more insurers to come in. … I don’t know if we’re at a point where it’s completely worrisome, but I think it does raise some red flags in pointing out that insurance companies need to be able to make a profit or at least cover their costs.”
In response to the development in Minnesota, Gov. Mark Dayton, a Democrat, highlighted gains in enrolling more Minnesotans in health insurance plans since the implementation of the Affordable Care Act. But he also acknowledged the insurer’s departure reflects the instability in the market for individual and family coverage.
“This creates a serious and unintended challenge for the individual market: the Minnesotans who seek coverage there tend to have greater, more expensive health care needs than the general population,” said Dayton. “Blue Cross Blue Shield’s decision to leave the individual market is symptomatic of conditions in the national health insurance marketplace.
University of Minnesota health economist Roger Feldman called the Blues’ departure a major blow to Minnesota’s already troubled individual market. “What this says about the individual market is that it is very unstable and it has been disrupted by a number of events, and we still don’t know whether it will recover or not from those disruptions,” he said.
Feldman said lawmakers would be wise to pay attention to the unstable individual markets and to shore them up with a carrot and stick approach.
“To get people to sign up in the exchange we need one or both of those,” he said. “The stick could be to raise the penalties on people who don’t buy insurance, and the carrot could be to increase the subsidies for people that do. I think that’s the only way that we’re going to get a decent mix of risks to buy into that exchange.”
Although the main Blue Cross Blue Shield unit is leaving Minnesota’s individual market, its much smaller subsidiary, Blue Plus, will continue to offer plans on the individual market, according to the company statement. Blue Plus, has only about 13,000 members according to his message.
Kaiser’s Cox says that’s typical and leaves insurers a re-entrance option.
MNsure spokesman Shane Delaney said about 20,000 Minnesotans purchased Blue Cross and Blue Shield of Minnesota plans through MNsure. He said the vast majority of them qualified for tax credits to help pay premiums. Delaney said all of the Blue Cross and Blue Shield customers losing their coverage next year should look for other options on MNsure, the only place eligible applicants can secure federal tax credits.
This story is part of a reporting partnership with NPR, Minnesota Public Radio and Kaiser Health News.