SAN FRANCISCO — Dan Swangard knows what death looks like.

As a physician, he has seen patients die in hospitals, hooked to morphine drips and overcome with anxiety. He has watched death drag on for weeks or months as terrified relatives stand by helplessly.

Recently, however, his thoughts about how seriously ill people die have become personal. Swangard was diagnosed in 2013 with a rare form of metastatic cancer.

To remove the cancer, surgeons took out parts of his pancreas and liver, as well as his entire spleen and gallbladder. The operation was successful but Swangard, 48, knows there’s a strong chance the disease will return. And if he gets to a point where there’s nothing more medicine can do, he wants to be able to control when and how his life ends.

“It’s very real for me,” said Swangard, who lives in Bolinas, Calif. “This could be my own issue a year from now.”

That’s one of the reasons Swangard joined a California lawsuit last month [February] seeking to let doctors prescribe lethal medications to certain patients who want to hasten death. If he were given only months to live, Swangard said, he can’t say for certain whether he would take them.

“But I want to be able to make that choice,” he said.

The right-to-die movement has gained renewed momentum in California and around the nation following the highly publicized death of an East Bay woman with brain cancer. Brittany Maynard, 29, moved to Oregon to take advantage of its “Death with Dignity” law and died in November after taking a fatal dose of barbiturates prescribed by her doctor.

The California lawsuit asks the court to protect physicians from liability if they prescribe lethal medications to patients who are both terminally ill and mentally competent to decide their fate.

The lawsuit argues that while it is against the law in California for anyone to assist in another’s suicide, these cases are not suicides. Rather, the suit argues, they are choices by a dying person on how his or her life should end and decisions about one’s own body protected under the state constitution.

Separately, two California state senators have proposed a bill that would allow doctors to prescribe lethal medication to certain terminally ill adults.

Three states – Oregon, Washington and Vermont – already have laws allowing physician-assisted deaths. Courts in New Mexico and Montana also have ruled that aid in dying is legal, and a suit was also recently filed in New York.

Legislation is pending in several other states. Kathryn Tucker, an attorney on several of the court cases, is also spearheading the California lawsuit. This time, she and her legal team decided to include among the plaintiffs two doctors with life-threatening illnesses, Swangard and a retired San Francisco obstetrician.

Physicians “have a very deep and broad understanding about what the journey to death can be like,” said Tucker, executive director of the Disability Rights Legal Center. “The curtain is pulled back. For lay people, death is much more mysterious.”

Historically, doctors have been some of the most vocal critics of assisted suicide, also called aid-in-dying. The American Medical Association still says that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer.” Similarly, the California

Medical Association takes the view that helping patients die conflicts with doctors’ commitment to do no harm. “It is the physicians’ job to take care of the patient and that is amplified when that patient is most sick,” said spokeswoman Molly Weedn.

But a recent survey of 21,000 doctors in the U.S. and Europe shows views may be shifting. According to Medscape, the organization that did the survey, 54 percent of American doctors support assisted suicide, up from 46 percent four years earlier.

Swangard is among those who believe that taking care of patients means letting them choose how their lives should end. That’s not the same as killing patients or facilitating suicide, he said.

Swangard completed his medical residency in San Francisco in the in the middle of the AIDS crisis; young men were dying all around him. Throughout his career as an internal medicine doctor, a hospice volunteer and now an anesthesiologist, he has become frustrated with how the medical system handles death. Doctors spend so much time trying to extend life that few focus on what patients wanted in their last days, he said.

“I don’t think we know how to die,” he said. “We fight tooth and nail to keep that from happening.”

Swangard’s own illness was discovered in early 2013 during a long overdue check-up. He hadn’t been worried about his health – he was obsessed with fitness, swimming regularly and seeing a trainer twice a week. But when the doctor pressed on Swangard’s stomach, he felt a mango-sized mass.

He had a visceral feeling, he said, “something bad was happening.”

Within a week, a surgeon found a neuroendocrine tumor in the pancreas and metastasis in the liver. It was the same cancer that took Steve Jobs’ life – one that doesn’t generally respond to chemotherapy or radiation. “My fears became real,” he said.

The doctors told him they believed they got all the cancerous cells. But Swangard was tormented by questions: Am I going to be alive in a year? Is my cancer going to come back?

“I wasn’t sleeping, I wasn’t exercising, I was marinating in my own sadness and fear of what this all meant,” he said. “I thought, ‘This is going to kill me.’”

Since his diagnosis, Swangard said he has had a greater understanding of his patients’ struggles. Occasionally, he holds their hands and tells them he has been where they are.

Earlier this year, a physician friend asked him if he’d be willing to join the California case. Swangard didn’t hesitate. He didn’t go into medicine to help dying people linger and wants to help change that approach — for his patients and for himself.

When he dies, Swangard said, he wants to be surrounded by people he loves. He doesn’t want to be in a drug-induced haze, nor consumed by worry about what’s next. He wants to be able to say good bye.

“It is a little bit of a blessing to know how I might die,” he said. “I don’t think a lot of patients have insight into what to expect.”

These days, he wears a Buddhist prayer bracelet, a reminder to focus on the present. He cut his work hours, swims as often as he can and meditates regularly. At home, he stares out at the ocean, often watching dolphins pass by. He makes every effort to stay calm and healthy.

He is in remission but he knows that what happens with the cancer is largely outside his control An MRI last year showed a small lesion in his liver, which doctors are watching closely.

“It’s this big unknown,” he said.

Dr. Robert Liner, a fellow plaintiff who only recently met Swangard, lives with the same uncertainty.

On his 69th birthday in May 2013, the retired obstetrician had a bad cough. He felt tired and short of breath. His wife took him to the hospital, where doctors discovered malignant masses on his kidneys –advanced- stage lymphoma.

After radiation and chemotherapy, the tumors shrank. He also is in remission. But if the cancer comes back, he said, “the prospects are not going to be good.”

He often thinks of a former patient, a 25-year-old woman with metastatic ovarian cancer. She wanted to die while she still was able to communicate. Liner wasn’t able to help ease her death because the law wouldn’t let him. “I felt like I’d failed her,” he said.

Years before his diagnosis, Liner, now 70, became involved with Compassion & Choices, an organization that promotes aid-in-dying. He has a shelf of books in his San Francisco home devoted to the subject: Being Mortal, Dying Right, Knocking on Heaven’s Door.

He keeps a stack of notecards with quotes about the end of life, which he often recites in speeches to church groups or senior centers. One reads, “The best preparation for death is a life well-lived.”

He believes having medication to hasten death helps terminally ill people live fully in their last weeks or months without being immobilized by fear. “If you are riddled with anxiety, you are not free to concentrate on what’s most meaningful to you,” he said.

Like Swangard, Liner doesn’t know if he would take the medication. He recently married the woman he calls his “beloved” and said he has lots of plans for his retirement years, including writing a screenplay and improving his piano playing.

“My wife says I’d be hanging on to life by my fingernails,” he said.

But that decision should be his to make, with his family and his doctor, he said. “I want the comfort of knowing it’s up to me when enough is enough,” 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.

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MARY AGNES CAREY:  Welcome to Health on the Hill, I’m Mary Agnes Carey. The troubled Medicare Physician payment formula is one step closer to repeal. After 17 short-term fixes over the last decade, the House of Representatives voted overwhelming to scrap Medicare’s Sustainable Growth Rate, or SGR, and replace it with a system that pays doctors based on the quality of care rather than the quantity.

The Senate is expected to act on the measure next month. Jennifer Haberkorn of Politico Pro joins us now with the latest. Thanks, Jen.

JENNIFER HABERKORN, POLITICO PRO:  Thanks, MAC.

MARY AGNES CAREY:  The House voted 392-37 to pass an SGR overhaul. President Obama supported this plan and there was a lot of pressure on the Senate to act, but it didn’t. Why didn’t the chamber vote on the SGR bill before it left town for a two-week recess?

JENNIFER HABERKORN, POLITICO PRO:  The Senate was wrapping up its “vote-o-rama,” which is a purely Washington term for 15 hours of straight voting on amendments to the budget. Some hoped, and some thought that they would then move to this and pass this Sustainable Growth Rate repeal immediately. But the Senate feels like they have some time – the Obama administration can delay Medicare payments, essentially delaying the cuts to doctors, for two weeks. So they have time to return to this and pass it before physicians would actually see a cut in their rates.

Also the Senate really wanted to amend this policy. It was passed by the House, they were kind of miffed that they weren’t involved. So they want to be able to vote on making some changes to policy. Those amendments are unlikely to be approved, but they want to be able to make a point. There was also some concern that they didn’t have enough time to read the legislation and then all of the budget votes, and they were skeptical of passing this at about 4 in the morning.

MARY AGNES CAREY:  The Senate doesn’t come back until April 13, and that leaves a lot of time for lobbying on this package – maybe people who like it, people who don’t. What are you expecting?

JENNIFER HABERKORN, POLITICO PRO:  Traditionally in Washington, the more time you have, the more opportunity there is for opposition to fester. That should be a concern in this case because it is two weeks before the Senate returns, but the House vote, as we said, was overwhelming: 392 votes. Advocacy groups are pretty overwhelmingly supportive of it. And I don’t see any real opposition brewing unless something new comes out – something unexpected like there’s a provision in the bill that no one realizes was there or something really significant like that. So I see the next two weeks – physician groups putting some lobbying time into ensuring the Senate vote is as strong as possible.

MARY AGNES CAREY:  You mentioned Senate amendments a moment ago. What sort of amendments are we likely to see when the Senate takes up this package?

JENNIFER HABERKORN, POLITICO PRO:  The Senate really wants four years of funding for the Children’s Health Insurance Program. The policy right now is only two years and they want to be able to vote on doubling that to four. I don’t think that is likely to pass, particularly because it is a pretty expensive policy change. We are also likely to see an amendment on a budget point of order, which is really just acknowledging that this policy is not fully paid for, so it would add to the deficit in the first ten years and particularly conservative budget hawks would like to be able to voice opposition to adding to the deficit.

MARY AGNES CAREY:  Let’s go back to that House vote for a minute. Just want to get your impressions, I mean I found it so interesting that House Speaker John Boehner could convince many conservative Republicans to vote for this, even though as you say it wasn’t fully paid for. Nancy Pelosi the Democratic leader also got her troops mostly to go along, even though they had concerns, same concerns as Senate Democrats about the Children’s Health Insurance Program funding, there were some concerns that beneficiaries are picking up too much of this package. How did that all come together?

JENNIFER HABERKORN, POLITICO PRO:  I think a couple really strategic decisions by leadership were key. Conservatives were able to get the early support of Americans for Tax Reform, which is really influential with conservatives who are concerned about the budget. That kind of quelled some of that opposition. Nancy Pelosi very early on made it clear that she wanted more money for the CHIP program, but just wasn’t going to be able to get it in this deal.  And so, that really tapped down opposition from the far ends of both sides, Republicans and Democrats.  Also, this policy was just so widely hated that there was a lot of support for getting rid of it even if you had to accept some things that you didn’t like.

MARY AGNES CAREY:  Do you think that House vote, coupled with the likely Senate action on the sustainable growth rate scrapping this formula once and for all, is this a sign that we are going to see more bipartisan cooperation on health care in the future?

JENNIFER HABERKORN, POLITICO PRO:  You know, it’s certainly a sign that it’s possible. Whether we are going to see more of this, it’s really hard to say at this time.  This deal seemed to come out of nowhere. You know, we’ve been doing “doc fixes” like you mentioned earlier for a decade. No one thought the policy would going to get repaired anytime soon. And it was perhaps less about health care and more about just this recurring, very Washington, problem of fixing this budget problem.  But I will say, this was the number one policy concern of just about every physician organization, a lot of the hospital organizations because they were always taxed to pay for these doc fixes. So it kind of clears the plate of health advocacy organizations and helps health policy people on Capitol Hill.

MARY AGNES CAREY:  We’ll see were it goes. Thanks so much Jennifer Haberkorn of Politico Pro.

JENNIFER HABERKORN, POLITICO PRO:  Great to talk to you.

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 good news: Three-quarters of people who were eligible for the most generous financial subsidies on the federal health insurance exchange this year signed up for coverage, according to a new analysis by Avalere Health. The puzzler: Enrollment dropped off substantially for people with only slightly higher incomes who would also have qualified for significant subsidies.

Stiffer penalties for not having coverage and redoubled efforts to reach out and educate people about the health law and their obligations may be keys to increasing enrollment for people in these income groups, says Caroline Pearson, a senior vice president at Avalere Health.

Subsidies alone aren’t enough, she says.

“The carrots as a standalone don’t work,” Pearson says, referring to subsidies that are available to make coverage more affordable for people with incomes between 100 and 400 percent of the federal poverty level. “You have to make people aware of the mandate, and as the mandate penalties increase that will strengthen the effect.”

Unless they qualify for an exemption, most people are required by the law to have health insurance or face fines. The penalty for not having health insurance in 2014 was the greater of $95 or 1 percent of annual income. This year, the penalty increases to $325 or 2 percent of income, and in 2016 rises to $695 or 2.5 percent of income.

Avalere based its analysis on the number of people who in 2013 would have been eligible to enroll on the federal marketplace that serves 37 states because they didn’t have group coverage or were uninsured and the number that bought a marketplace plan during the 2015 open enrollment period that ended in February.

While 76 percent of eligible people with incomes between 100 and 150 percent of the federal poverty level ($11,670 to $17,505 for an individual) enrolled in plans in 2014, only 41 percent of those whose income was between 151 and 200 percent of poverty ($17,622 to $23,340) signed up. In the next income bracket, eligible individuals with incomes between 201 and 250 percent of poverty ($23,457 to $29,175), just 30 percent enrolled coverage on the federal marketplace, the analysis found.

Only 2 percent of eligible people whose incomes were 400 percent of the poverty level ($46,680) or higher enrolled on the exchange, the Avalere analysis found. Since they were ineligible for subsidies, those individuals had little motivation to buy a plan through the exchange and may have bought coverage outside it.

Many of those with more modest incomes could have received significant subsidies on the exchange, including premium tax credits and cost sharing subsidies to reduce out-of-pocket costs such as deductibles and copayments.

For people with incomes between 151 and 200 percent of poverty, and to a lesser extent those in the next higher income bracket, “the financial incentive is still quite high and the benefit is high,” says Pearson. “That’s where education seems important.”

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

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

Catherine Jarett ran into a nasty surprise after she sent a form to Medi-Cal on behalf of her clients. An estate attorney, Jarett was hired by the sons of an elderly Vallejo woman who had died. For more than 20 years, the woman had been enrolled in Medi-Cal, as the state’s Medicaid insurance program for the poor is known.

After Jarett filed the form with Medi-Cal — a death notice as required — the state sent a bill for a hefty $76,349. Jarett was stunned. It was for the cost of health, vision and dental insurance, she said.

The bill was part of Medi-Cal’s “estate recovery program.” Under a federal law not widely known to consumers, states can seize assets of Medicaid beneficiaries after they die. “I was never aware of this wrinkle that they could recover for health insurance,” Jarett said.

Jarett’s clients did not want to speak to reporters, but Jarett said they insisted their mother had not been to the doctor in years and had even died at home. But Jarett said the charges included a breakdown by month of the state’s payments to a managed care plan as part of Medi-Cal.

While a 1993 federal law mandates that states recover assets for nursing home care, the law makes it optional that states recover for medical services — doctor visits, hospital stays and the like — for people 55 and over. Advocates say just 10 states do this optional recovery, but it isn’t clear that the other states pursue the assets as aggressively as California.

“It’s an awful system, and it needs to be changed. It absolutely needs to be changed,” said Pat McGinnis, executive director of California Advocates for Nursing Home Reform. Her group is sponsoring a bill, SB33, introduced by state Sen. Ed Hernandez (D-West Covina), that would abolish this optional recovery. The bill was heard by the Senate Health Committee on Wednesday and passed out of committee by a vote of 8-0. It will go before the Senate Appropriations committee next.

Last year, a similar bill sailed through the legislature, but was ultimately vetoed by Gov. Jerry Brown. Still, in a statement last September when he vetoed the bill, Brown left an opening. He said estate protection might be a “reasonable policy goal,” but that the cost “needs to be considered alongside other worthwhile policy changes.”

Figuring out that cost is a challenge. In 2013 and 2014, the state recovered $61 million in 3,900 cases, said Carol Sloan with the Department of Health Care Services. But the state does not break down how much of that $61 million is for nursing home care and how much of it is for medical services.

For perspective, $17.8 billion in state general fund dollars went to Medi-Cal last year. The total budget for Medi-Cal is significantly more than that after adding in federal dollars and various taxes— $85.7 billion.

‘Leery’ of Medi-Cal

Like the attorney Jarett, Anne-Louise Vernon, 60, of Campbell, had never heard of estate recovery. She had been “so looking forward,” she says, to signing up for insurance under the Affordable Care Act. Her income was too low for her to qualify for subsidies to purchase insurance on the Covered California marketplace. Instead, she qualified for Medi-Cal.

Vernon said she was “leery,” and asked if there were strings attached. “I was told, ‘No, no, it’s completely free.’” She said it was some time later, when she was looking around online, that she found a reference on an FAQ page about assets being seized. She was furious.

“So you’re breaking the law if you don’t have health insurance,” Vernon said, referring to Obamacare’s “individual mandate” that everyone have health insurance. She said she felt forced into Medi-Cal: “They don’t tell people it’s a loan.”

Vernon held onto her home years ago after a divorce, but said she was “involuntarily retired” and has been living on savings. She knows she could shelter her home but doesn’t want to take that step. “I’m 60! I’m not going to sign my house over to my kids at this age.”

For other people, attorneys’ fees to take the legal steps to shelter a property are a big issue. “People who end up on Medi-Cal are poor people,” said McGinnis. “They’re the ones that usually cannot afford to pay an attorney $300 to $400 an hour.”

‘Collection Agency for the Feds’

Estate recovery has become a much bigger issue since the rollout of Obamacare started more than a year ago. Under the expansion of Medicaid, people earning up to 138 percent of the federal poverty level are eligible (in states like California that are participating in the expansion). But for those people, 100 percent of the cost of their health coverage is borne by the federal government for the first three years, drifting down to 90 percent after that, and any recovered money would be returned to the federal government.

“What are we? A collection agency for the feds?” asked McGinnis, who also says CANHR is hearing from consumers who will disenroll from Medi-Cal if the policy has not changed. Other advocates believe the policy is a barrier to enrollment for some people.

For now, Vernon is staying on Medi-Cal. Like 80 percent of Medi-Cal beneficiaries in California, she is enrolled in a managed care plan. When she wanted to know what her Medi-Cal coverage cost, she spent “hours and hours on the phone” calling both her managed care plan and the state, she says, and got the runaround from both of them. No one could tell her what her coverage cost.

Finally, an advocate sent her a link to the exact page on a state website where she could find out how to file a request for information — with a $25 fee. She finally got an answer: $578.71 a month. If she stays on Medi-Cal for another five years until she’s 65, when she becomes eligible for Medicare, the state will have paid almost $35,000 for her managed care premium. After she dies, the state could bill her estate for that amount — or more, if she continues on Medi-Cal.

Ironically, if Vernon, and others like her, earned just a bit more money, they would qualify for heavily subsidized private insurance through the Covered California exchange. The state estimates that the “per member per month” premium for those newly eligible for Medi-Cal who are 55 and older (remember, the state can’t collect on people under 55) is $620.98, or nearly $75,000 over 10 years.

Vernon plugged her age and ZIP code into the Covered California insurance calculator, but increased her income to $17,000 to see what would happen.

She found she could get a plan for as little as $31 a month, “estate recovery free,” she noted. These plans come with a $2,250 out-of-pocket limit, but even if a 55-year-old maxed that out every year, the 10-year total of deductible plus premium is $26,220 — about $50,000 less than what would be accrued on Medi-Cal, with no estate recovery.

This story is part of a reporting partnership that includes KQED, NPR and Kaiser Health News.

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