Prompted by a state law that took effect this year, a coalition of emergency and social service providers is working to create an electronic registry that will be accessible to first responders and medical providers.

This article first appeared December 7, 2016 on Kaiser Health News.

By Anna Gorman

CONCORD, Calif. — Mary De Freze, who has heart problems, chronic lung disease and a history of falling, knows she may not have too many years left. And she's clear about what she wants — and doesn't want — at the end of her life.

"I don't want to be in a lot of pain and I don't want to be kept alive by machines," said De Freze, 81.

After a recent fall landed De Freze in Stonebrook Healthcare Center with cracked ribs and a bruised spleen, the staff there helped her put those wishes on paper.

The document they used, Physician Orders for Life-Sustaining Treatment, or POLST, gives patients a choice of how much medical care they want in an emergency.

Prompted by a state law that took effect this year, a coalition of emergency and social service providers is working to create an electronic registry for POLST forms so they will be available to first responders and medical providers when they are needed. The group is starting with a three-year pilot project in San Diego and Contra Costa counties that could serve as a model for a single, statewide registry. Paper-based POLST forms are used across the nation, but electronic registries exist only in a few states, including Oregon, New York and West Virginia.

Many adults have advance directives, which are legal documents that designate a surrogate decision-maker and list patients' health care preferences. POLST forms go further, creating a set of medical orders that are signed by the provider and the patient or a legally recognized decision-maker. Unlike advance directives, they are specifically designed for people who are already seriously ill or near the end of life.

Research shows that POLST forms help ensure patients' end-of-life wishes are followed. But that only happens if doctors and other emergency providers can get them quickly. In California, the POLST form is a paper document and might not be at hand when patients need it. In many situations — a heart attack, a stroke or severe dementia — patients may not be able to communicate. And doctors may not be able to reach their families right away.

Without information on what patients want, there is an increased chance their wishes won't be followed.

"If you take the time to fill out a POLST form, you want your health care wishes to be known and respected," said Kate O'Malley, a senior program officer at the California Health Care Foundation, which is funding the pilot project in California. (California Healthline is an editorially independent service of the California Health Care Foundation.)

A POLST registry "would be a big plus for being able to give people the care they want and not give them the care they don't want," said Jeffrey Klingman, a neurologist at Kaiser Permanente in the East Bay.

"I don't want to do things to people they don't want done," he said. "On the other hand, I don't want to delay treatment while I wait to figure out what they want done."

Oregon was the first state to use POLST forms in 1991. California has been using them for nearly 20 years. Filling out the forms is voluntary, but once they are completed and signed, they must be followed, and providers have immunity from criminal prosecution or civil liability when they do so in good faith. The forms are printed on bright pink paper and include decisions such as whether a patient should be resuscitated, admitted to the intensive care unit or have a feeding tube inserted.

Tony Chicotel, a staff attorney at California Advocates for Nursing Home Reform in San Francisco, said patients should document their wishes in advance but that there are some downsides to doing so only with POLST forms. They are not nearly as thorough as advance directives and don't allow you to designate a decision-maker, he noted. "The most comprehensive health care planning you can do is to name an agent."

In addition, Chicotel said many nursing home residents are being urged to complete POLST forms even if they aren't seriously ill or at the end of life. He said if an electronic registry is created, it should also include advance health care directives.

California's electronic registry would be a secure, cloud-based portal for medical providers to submit and view POLST forms, regardless of whether the patient was at home, in the hospital or at a nursing home.

An electronic registry is a "no-brainer," said Judy Thomas, CEO of the Coalition for Compassionate Care of California, which coordinates the state's POLST program. But implementation will be much harder because it will require the cooperation of state agencies, doctors, emergency personnel, and private and public health systems. Success will also depend in part on hospitals' willingness to share records.

"We are not asking all health systems to share all information," said Allen Namath, co-founder of Vynca, the technology vendor for the project. "But the value in these forms is being able to share them."

Patients who go through the trouble of documenting their medical preferences shouldn't have to worry about getting the wrong care, he said. "It is not a cardiology problem. It is not a cancer problem. Helping improve our end-of-life care … applies to everybody."

San Diego County already has a health information exchange that allows hospitals and health systems to share some data. But Contra Costa County is further behind.

"It's going to be challenging," said Donald Waters, executive director of the Alameda-Contra Costa Medical Association, which is helping lead the pilot project.

But Waters said it's worth the effort to overcome the hurdles because having documents uploaded means paramedics and others will know in an instant if patients want to be resuscitated or just kept comfortable.

Situations arise every day in which being able to access POLST forms electronically could improve end-of-life care, said Tom Sugarman, an emergency physician at Sutter Delta Medical Center in Antioch, Calif.

"If you come [to the hospital] in full cardiac arrest … we only have one or two minutes to make a decision," said Sugarman, who educates doctors about POLST. "All physicians are going to err on the side of preserving life."

Sometimes, however, a patient may prefer comfort care, Sugarman said. A POLST form — if it is available — means families don't have to make decisions during an emergency, he said. "The worst time to have that conversation is during a crisis."

At Chaparral House, a nursing home in Berkeley, the POLST forms are in the residents' folders at the nursing station. The forms go with patients to the hospital, but sometimes there is still a disconnect. Administrator KJ Page recalls one resident getting a feeding tube when he didn't want one and another who almost underwent bypass surgery against his wishes.

Audrey de Jesus, 83, arrived at Chaparral House just a few months ago. She uses a wheelchair and an oxygen tank. Beside her bed sits a Bible and a book of Psalms.

De Jesus has seven children and said the form tells them exactly what she wants — comfort-focused treatment — so there aren't any questions in an emergency. "I want pain control and the least suffering for my family," she said.

Stonebrook Healthcare Center Social Services Director Shirley Jackson said filling out POLST forms is part of the admission process. "It's almost like a driver's license for the end of your life," she said. "It's important."

Having the form available electronically would make it much easier for everyone. "If, God forbid, you have to send somebody out in an emergency, especially if they are unresponsive, it's right there in the chart," she said.

De Freze, a former certified nursing assistant, said she plans to put her pink form on her refrigerator when she leaves Stonebrook. She knows she could have an emergency and may not be able to tell doctors or paramedics what she wants.

"You can't communicate if you are in excruciating pain," she said.

Among other things, the bill pushes federal agencies and health providers to use EHR systems and to collect data to enhance research and treatment.

This article first appeared December 2, 2016 on Kaiser Health News.

By Sydney Lupkin and Steven Findlay

A sprawling health bill expected to pass the Senate and become law before the end of the year is a grab bag for industries that spent plenty of money lobbying to make sure it happened that way.

Here are some of the winners and losers in the 21st Century Cures Act:

Winners

Pharmaceutical and Medical Device Companies. The bill will likely save drug and device companies billions of dollars bringing products to market by giving the Food and Drug Administration new authority and tools to demand fewer studies from those companies and speed up approvals.

The changes represent a massive lobbying effort by 58 pharmaceutical companies, 24 device companies and 26 "biotech products and research" companies, according to a Kaiser Health News analysis of lobbying data compiled by the Center for Responsive Politics. The groups reported more than $192 million in lobbying expenses on the Cures Act and other legislative priorities, the analysis shows.

Medical schools, hospitals and physicians. The bill provides $4.8 billion over 10 years in additional funding to National Institutes of Health, the federal government's main biomedical research organization. (The funds are not guaranteed, however, and will be subject to annual appropriations.)

The money could help researchers at universities and medical centers get hundreds of millions more dollars in research grants, most of it toward research on cancer, neurobiology and genetic medicine.

The bill attracted lobbying activity from more than 60 schools, 36 hospitals and several dozen groups representing physician organizations. They reported spending more than $120 million in disclosures that included Cures Act lobbying.

Mental health and substance abuse advocates. The bill provides $1 billion in state grants over two years to address opioid abuse and addiction. While most of that money goes to treatment facilities, some will fund research.

The bill also boosts funding for mental health research and treatment, with hundreds of millions of dollars authorized for dozens of existing and new programs.

Mental health, psychology and psychiatry groups spent $1.8 million on lobbying disclosures that included the Cures bill as an issue.

Patient groups. Specialty disease and patient advocacy groups supported the legislation and lobbied vigorously. Many of these groups get a portion of their funding from drug and device companies. The bill includes more patient input in the drug development and approval process, and the bill is a boost to the clout of such groups.

More than two dozen patient groups lobbied the bill, and reported spending $6.4 million in disclosures that named the bill as one of their issues.

Health information technology and software companies. The bill pushes federal agencies and health providers nationwide to use electronic health records systems and to collect data to enhance research and treatment. Although it doesn't specifically fund the effort, IT and data management companies could gain millions of dollars in new business.

More than a dozen computer, software and telecom companies reported Cures Act lobbying. The groups' total lobbying spending was $35 million on Cures as well as other legislation.

Losers

Preventive medicine. The bill cuts $3.5 billion — about 30 percent — from the Prevention and Public Health Fund established under Obamacare to promote prevention of Alzheimer's disease, hospital acquired infections, chronic illnesses and other ailments.

Consumer and patient safety groups. Groups like Public Citizen and the National Center for Health Research either fought the law outright or sought substantial changes. Although they won on some points, these groups still say Cures opens the door for unsafe drug and device approvals and doesn't address rising drug costs.

Hair growth patients. The bill says federal Medicaid will no longer help pay for drugs that help patients restore hair. The National Alopecia Areata Foundation spent $40,000 on lobbying disclosures this cycle that included Cures.

The FDA. The bill gives the FDA an additional $500 million through 2026 and more hiring power, but critics say it isn't enough to cover the additional workload under the bill. The agency also got something it opposed: renewal of a controversial voucher program that awards companies that approve drugs for rare pediatric diseases.

As they debate and discuss ways to repeal the Affordable Care Act, lawmakers will weigh the value of the Center for Medicare & Medicaid Innovation.

This article first appeared December 1, 2016 on Kaiser Health News.

By Julie Appleby

Joint replacements. Cardiac care. Chemotherapy.

What do those things have to do with the repeal of the Affordable Care Act?

Economists and policymakers think the U.S. may be overpaying for such services, which helps drive up health care expenses for everyone. And the health law has a program that includes testing new ways to pay for care — including in those three areas — that might result in better quality and lower costs.

But with the ACA up for potential repeal, what happens to that testing now? One of the emerging questions is whether Congress will save all or part of that effort, known as the Center for Medicare & Medicaid Innovation.

Republican lawmakers have complained — along with some in the health care industry — that the law under the Obama administration gave too much authority to the head of the Department of Health and Human Services to create and expand projects. Now, however, that very same authority may look appealing as Republicans head the department and may want to use the center to test their own ideas, including those that would revamp Medicare or Medicaid.

"You can dislike that authority, until you have the opportunity to use the authority," said Rodney Whitlock, a vice president at ML Strategies, a government consulting firm in Washington, D.C., and former Republican staff member of the Senate Finance Committee.

As they debate and discuss ways to repeal the Affordable Care Act, lawmakers will weigh the innovation center, funded through the health law with $10 billion for 2011 to 2019, and another $10 billion for each subsequent decade. The Congressional Budget Office estimates the center would increase federal spending initially, but ultimately result in lower costs and save up to $34 billion over the next 10 years.

Congressional Republicans have not yet hinted whether they will keep, modify or kill the program but they generally support the cost-saving goal of the center and many observers think they will want to preserve it.

"If health care providers can do a better job of delivering patient care … at the same or lower costs, that's the kind of flexibility the system needs more of," said Mark McClellan, a professor of health policy at Duke University who headed Medicare for two years under the George W. Bush administration.

One group that generally supports the broad cost-saving goal of the center, nonetheless warned that Congress should place limits on it. Otherwise, "there is nothing preventing [the center] from testing a model … that includes all Medicare and/or Medicaid beneficiaries in the U.S," the Healthcare Leaders for Accountable Innovation in Medicare said in a white paper. "In effect [the center] could test a model that completely restructures the Medicare or Medicaid program."

Billions of dollars have already been spent by the center, testing a variety of ideas, from ways to improve care for at-home dialysis to ways to foster more collaboration between doctors and hospitals to efforts to reduce unnecessary hospital visits by chronically ill Medicare patients. Many of the efforts look at ways to move from Medicare's traditional fee-for-service payment system — that economists and policymakers say drive up costs — and instead set up reimbursement that rewards coordinated care. Few of the projects have been in place long enough for the center to determine if they truly save money and improve care.

Even if the center were eliminated, many experts say these types of payment reforms will continue because of private sector interest.

"Pay-for-value is going to be a guiding principle going forward irrespective of who is in power," said Dan Mendelson, president and CEO of the consulting firm Avalere Health. "It would surprise me to see wholesale U-turn from that policy."

To date, most of the programs funded by the innovation center are voluntary, but controversy has arisen over several recent initiatives that require participation by doctors or hospitals.

What may happen is that there will be fewer of these mandatory efforts. This year, one such project got underway, testing a method of "bundling" payments for joint replacements at 800 hospitals in 67 metro areas. For their Medicare patients, the project requires a single bundled payment to cover the cost of these procedures, including in-patient and post-operative care, instead of separate payments for each doctor, hospital or nursing home visit. A similar mandatory project for certain kinds of cardiac care has also been proposed.

In the end, the center's future will be determined by whether the Republican majority believes it is one of the best ways to slow rising medical costs, said Christopher Condeluci, principal at CC Law & Policy in Washington, D.C., and the former tax and benefits counsel to the Senate Finance Committee.

"If the answer is yes, they will keep it and it might go to new heights," Condeluci said.

But economist Joe Antos, a resident scholar at the American Enterprise Institute, does not think the new administration — or many members of Congress — will push to use the center's authority to create broad, mandatory nationwide experiments with Medicare.

"I can't imagine a Trump administration saying we want the bureaucrats to decide on the health care your grandmother is going to get," said Antos. "Anything that is that much of a marquee issue absolutely has to go through Congress."

A transitional care clinic in San Antonio helps the mentally ill avoid winding up in the ER, where round-the-clock activity and confusion is ill-suited to the needs of patients who are already agitated, suicidal or psychotic.

This article first appeared November 22, 2016 on Kaiser Health News.

By Liz Szabo

SAN ANTONIO— Yolanda Solar has battled a life-threatening disease for more than three decades.

The disease nearly killed her last summer, and Solar, a 73-year-old grandmother, was rushed to the hospital by ambulance.

When Solar was discharged one week later, she received bad news: She would have to wait until March to see a doctor.

Waiting seven months for treatment would be unthinkable if Solar had cancer or heart disease. But Solar suffers from severe depression, and waiting that long for help is typical — and potentially dangerous.

Although San Antonio has earned widespread praise for its success in keeping people with mental illness out of jail, patients here routinely wait months to see psychiatrists, who are in short supply across the country. The number of available psychiatrists who specialize in the care of the elderly or children is even smaller.

Without routine medical care, patients like Solar, who tried to kill herself in August with an overdose of pills, can quickly deteriorate. Many return to the emergency room. Some don't survive.

But Solar was luckier than most.

Emergency room staff made an appointment for her at a transitional care clinic at the University of Texas Health Science Center at San Antonio, which annually treats up to 1,500 patients with serious mental illness until they can find regular care. The clinic helps the mentally ill avoid winding up in the ER, where round-the-clock activity and confusion is ill-suited to the needs of patients who are already agitated, suicidal or psychotic.

Communities like San Antonio are increasingly focused on reducing emergency room use by people with mental illness. In addition to being chaotic, emergency rooms are among the most expensive places in the health system to get urgent care.

Patients like Solar end up in the ER because they can't find care in the community, and emergency rooms can't legally turn anyone away. The mentally ill can be stranded in the ER for hours, days or even weeks with minimal treatment, because doctors deem them too disabled to discharge, but can't find them an inpatient psychiatric bed, which would allow patients to get more intensive care.

More than half of emergency room physicians said their local mental health system has gotten worse in the past year, according to a survey of 1,716 members of the American College of Emergency Physicians, released in October. Seventy-five percent of ER doctors said on their last shift, they saw at least one psychiatric patient who needed to be hospitalized.

"The emergency department becomes the de facto dumping ground for all mental health patients," said Gillian Schmitz, a San Antonio emergency physician.

The number of ER patients with a mental illness grew from 4.4 million in 2002 to 6.8 million in 2011, an increase of 55 percent, according to a 2016 study in Health Affairs. About 836,000 Americans a year go to the emergency room after harming themselves, according to the Centers for Disease Control and Prevention. Nearly 43,000 Americans committed suicide in 2014 — more than are killed annually in car accidents.

The American College of Emergency Physicians devoted much of its annual meeting in October to patients with psychiatric crises.

Everyone suffers when people with mental illness are stuck in limbo in the ER, Schmitz said. Other patients face longer waits for care and hospitals lose money. That's because insurers pay emergency rooms only for their initial encounter with a patient, but not for time spent waiting for an inpatient bed.

"Every hour we are holding a psych patient," Schmitz said, "is lost revenue that hospitals could be earning on other medical patients."

Personalized care

Solar's story also shows the progress that people with mental illness can make when they receive prompt and comprehensive care. She has not returned to the ER since beginning treatment in August.

Hospital staff scheduled her appointment at the transitional care clinic through a web-based computer system before she left the hospital. Like most patients, Solar was seen within a few days.

Solar now meets regularly with a psychiatrist, who manages her medications, and a counselor to discuss her fears.

A therapist visits her at home to help organize her medications, which include pills for high blood pressure and cholesterol. The visits are paid for through a Medicaid pilot program, which allows staff to provide extra services for up to five patients who are considered "high utilizers" of health care, or patients who are particularly costly to insurers because of repeat trips to the hospital or ER, said Megan Fredrick, the clinic's program manager.

Patients with serious mental illness, which can cause cognitive changes similar to dementia, often need help with day-to-day tasks, said psychologist Dawn Velligan, project director at the transitional care clinic. Therapists help patients set alarms that remind them when to take their medicines. They work with patients on calendars and organizational skills, so that clients don't miss appointments.

Through a type of therapy called cognitive adaption training, clinic staff teach basic skills, such as how to shop for groceries or take the bus to a medical appointment, Velligan said.

Only 2.5 percent of psychiatric patients seen at the transitional care clinic return to the ER within three months, compared to 10 percent of patients who aren't seen at the clinic, Fredrick said.

Without the clinic's help, Solar said, she would probably have considered suicide again.

"Sometimes, I get pretty, pretty, pretty depressed," said Solar, who was raised by an alcoholic father. Her depression began, Solar said, during an unhappy marriage.

Yet for years, Solar suffered in silence. The first time she saw a psychiatrist was after her August suicide attempt.

Nationwide, more than half of people with mental illness go without treatment, according to Mental Health America, an advocacy group. The reasons are complex. Many people with mental illness don't realize they're sick, or that treatment can help. Some patients lack transportation or money to pay for care. About 17 percent of people with a mental illness in the U.S. are uninsured, according to Mental Health America.

"For many of our elderly Hispanic patients, this is the first time they've seen a therapist," Cynthia Sierra, a clinic counselor. "You're raised not to talk about your problems with strangers … You can carry years of burdens and trauma."

Unsolved problems

For all its success, the transitional care clinic can't help everyone.

With an annual budget of $3.5 million — provided by a variety of grants and a fund for Medicaid demonstration projects — the clinic sees just a fraction of those who need help.

"We constantly have to beg for money," Velligan said.

Although the transitional clinic accepts patients covered by Medicare, Medicaid or private insurance, it can't accept most uninsured patients.

Psychiatrist Harsh Trivedi describes the program as a "Band-Aid" that fails to address the larger problem of inadequate care for people with mental illness.

"Unfortunately, creating these programs doesn't actually solve the real access issues," said Trivedi, chair of the American Psychiatric Association's council on healthcare systems and financing.

Trivedi notes that the national shortage of psychiatrists means that even well-insured patients often have to wait for care. Although the overall number of physicians increased 14 percent from 2003 to 2013, the number of psychiatrists fell by 10 percent when adjusted for population growth, according to a July study in Health Affairs.

That shortage is projected to worsen over the next decade as large numbers of psychiatrists reach retirement age, said Trivedi, who is also the president and CEO of Sheppard Pratt Health System in Maryland.

Many psychiatrists have stopped taking insurance because health plans pay them too little to sustain a practice, Trivedi said.

To really help more patients, the country needs to rebuild the mental health system, investing both in outpatient care, more hospitals beds and supportive services, Schmitz said. Instead, states have been steadily slashing mental health budgets for years.

"As a society, we're OK with the fact that someone with depression isn't able to get care," Trivedi said. "That double standard allows some of our most vulnerable people to end up in harm's way."