On the campaign trail, Democratic presidential candidate Hillary Clinton has sharply criticized the health care industry, accusing pharmaceutical companies of profiteering and vowing to control skyrocketing costs.
But Clinton’s tone was often more conciliatory before her presidential campaign when she addressed medical companies and trade groups as part of her brief but lucrative career delivering speeches for pay.
Elements of the speeches, some of which were delivered behind closed doors, were revealed in a hacked email that WikiLeaks made public in recent weeks.
“I know how critical the role that you play is,” Clinton told the Advanced Medical Technology Association, a medical device trade group, in a 2014 speech. She avoided a direct question about a 2.3 percent tax on medical devices that was intended to fund the Affordable Care Act but was suspended until the end of 2017 after intense industry lobbying.
That appearance, for which Clinton was paid $225,000, was one of 15 paid speeches she gave to health care industry audiences, drawing a total of $3.5 million in fees. Overall, between the end of her tenure as secretary of state in February 2013 and the start of her 2016 White House bid, Clinton was paid about $21.6 million in speaking fees, according to her federal financial disclosure forms.This KHN story also ran in The Washington Post. It can be republished for free (details).
The health care speeches, largely overshadowed by the political storm over Clinton’s paid presentations to big banks, provide another example of an industry with much at stake during the next administration adding to the personal wealth of the woman who is now the Democratic presidential nominee.
Clinton campaign spokeswoman Julie Wood said that the candidate has a long record of “standing up to special interests in health care,” noting that the industry waged an aggressive push against her efforts as first lady in the early 1990s to overhaul the system.
“In this campaign, she has put forward proposals to hold drug companies accountable and ensure they put patients before profits and strengthen scrutiny of insurance companies,” Wood said. “She’s called out drug companies by name when they try to jack up prices with no apparent justification, like Mylan and the EpiPen, or exploit tax loopholes to shift profits overseas, like Pfizer’s proposed inversion, or insurance company mergers that threaten to raise prices and restrict choice.”
Transcripts and excerpts of Clinton’s paid remarks show a cautious speaker treading delicately between flattering her hosts and avoiding compromises on policy that might complicate a presidential run in a time of public antipathy toward the drug industry and rising insurance costs.
One internal email published by WikiLeaks that gained attention this month, for showing an aide flagging politically dicey comments Clinton made to financial institutions, also compiled Clinton’s potentially controversial remarks on issues such as single-payer health care, universal coverage, medical devices and pharmaceutical price controls.
The difference between Clinton’s tone as a candidate and her paid remarks to the industry is evident when it comes to her comments on how drugmakers deal with the burden of paying high U.S. taxes and issues of costs.
In 2014, Clinton seemed sympathetic to the struggles of the drug industry when she appeared alongside Jim Greenwood, chief executive of the Biotechnology Innovation Organization (BIO), a trade association that includes large drugmakers such as Pfizer and Gilead Sciences.
“I don’t want to see biotech companies or pharma companies moving out of our country simply because of some kind of tax — perceived tax disadvantage and potential tax advantage somewhere else,” she said, according to an excerpt included in the email released by WikiLeaks.
The group paid Clinton $335,000 for the speech, according to her disclosure form.
But as a candidate, Clinton has attacked the industry on several fronts. Her campaign website, for instance, singled out the now-defunct proposed merger of Pfizer and Allergan — which would have allowed Pfizer to avoid taxes by moving its headquarters to Ireland — for “eroding the U.S. tax base.” And Clinton sent biotechnology stocks tumbling last year when she rebuked “price gouging” by the specialty drug market, tweeting a link to an article about Turing Pharmaceuticals and then-chief executive Martin Shkreli.
Greenwood, the BIO executive who sat with her in 2014, criticized Clinton’s jab, saying at the group’s convention two years later that “even a lone tweet by a candidate for high office can have unintended, market-moving consequences.”
BIO did not respond to requests for comment.
Clinton resisted the idea of drug price controls during a 2014 dinner with the Drug, Chemical and Associated Technologies Association, at a venue the moderator described as being “filled with individuals from the pharmaceutical industry.” She was paid $250,000 for the speech, the content of which has previously not been reported.
“Well, I have to start by saying I don’t think we proposed price controls,” Clinton said in reference to her efforts in the 1990s, according to the WikiLeaks email. “We proposed more competition, more transparency, state exchanges, if those sound familiar, to entice greater negotiation over price.”
In her 2014 appearance before the Advanced Medical Technology Association, Clinton addressed the group’s conference in Chicago and participated in a question-and-answer session with the group’s chief executive, Stephen Ubl, according to a news release from the group.
Ubl has since become chief executive of the industry’s largest trade association, Pharmaceutical Research and Manufacturers of America, and has been critical of Clinton’s negative comments about the industry during the campaign.
A spokeswoman for the association, Wanda Moebius, said asking Clinton to speak was in keeping with the group’s outreach to important policymakers “to address our members on key issues of the day and to share their policy perspectives.”
The speech excerpts show that Clinton has consistently supported the Affordable Care Act. She applauds government-provided health care but is cautious about applying those lessons to the U.S. market.
Clinton expressed resignation to the current private insurance market in a 2013 address to the Economic Club of Grand Rapids — whose board includes the president of Blue Cross Blue Shield Michigan.
“People are entitled to make a profit,” she said.
Despite Clinton’s criticism, the pharmaceutical and health products industry is the 10th-largest industry among her campaign contributors, giving about $11.6 million to her campaign and outside groups supporting her, according to the Center for Responsive Politics, which analyzes Federal Election Commission data. Hospitals and nursing homes have donated $3.8 million. Republican nominee Donald Trump has received $1.5 million from health professionals.
Although Clinton has campaigned on improving the Affordable Care Act, she also has accepted speaking fees from groups that opposed aspects of the health law, including the National Association of Convenience Stores and Fuel Retailing and the Society for Human Resource Management.
Elizabeth Lucas contributed to this report.
The new enrollment period for the Affordable Care Act opens next Tuesday, and consumers in many areas could see double-digit percentage increases for premiums on average and fewer choices. PBS NewsHour’s Judy Woodruff talks to Mary Agnes Carey of Kaiser Health News and Reid Wilson of The Hill as they consider some of the options that individuals around the country are weighing.
State cuts in K-12 funding over the past decade, which we outline in our new report, haven’t just affected schools’ operating funding for things like teacher salaries and textbooks. Capital spending — to build new schools, renovate and expand facilities, and equip schools with more modern technologies, for example — also fell sharply in most states.
The following is a guest post by Luis Acosta, chief of one of the Law Library’s foreign, comparative, and international law divisions. Luis also recently wrote a post about a report on education as a constitutional right in foreign countries.
The doctrine of sovereign immunity, or state immunity, is an international law principle that limits how national governments can be sued in domestic courts. While the principle is grounded in the need under international law for governments to carry out international relations in an orderly fashion, it is mostly played out within the national procedural law of individual states governing when national courts can hear particular cases.
A recent report by the Law Library of Congress, Laws Lifting Sovereign Immunity in Selected Countries, provides illustrations of certain countries’ national sovereign immunity laws. Among the countries surveyed are Iran and Russia, which premise their sovereign immunity doctrine on negative reciprocity designed to deter other countries lifting sovereign immunity against them. Cuban law similarly provides for judicial claims for damages arising from acts supported by the United States government. The report also reviews the laws of Libya, Sudan, and Syria.
This report is one of many multinational and single-country reports on diverse subjects available on the Law Library’s website.
Researchers interested in learning more about the state immunity doctrine can use the resources of the Law Library of Congress, which holds many titles on this subject, including:
- Fox, Hazel and Philippa Webb. The Law of State Immunity. 3rd New York: Oxford University Press, 2015.
- Yang, Xiaodong. State Immunity in International Law. New York: Cambridge University Press, 2012.
- Alebeek, Rosanne van. The Immunity of States and Their Officials in International Criminal Law and International Human Rights Law. New York: Oxford University Press, 2008.
- Bankas, Ernest K. The State Immunity Controversy in International Law: Private Suits Against Sovereign States in Domestic Courts. New York: Springer, 2005.
SACRAMENTO, Calif.— The “public option,” which stoked fierce debate in the run-up to the Affordable Care Act, is making a comeback — at least among Democratic politicians.
The proposal to create a government-funded health plan, one that might look like Medicare or Medicaid but would be open to everyone, is being advocated by some federal officials, and gaining traction here in California too.
Amid news that two major insurers were pulling out of Affordable Care Act exchanges, 33 senators recently renewed the call for a public option. The idea was first floated, then rejected, during the drafting of the federal health law, which took effect in 2010.
Democratic presidential candidate Hillary Clinton includes a public option in her campaign platform, and President Barack Obama urged Congress to revisit the idea in a JAMA article published in August.
Dave Jones, the elected regulator of California’s private insurance industry, endorsed the idea of a state-specific public option in an interview last month with California Healthline, though he did not specify how it might work.
A public option “would look just like an insurance plan,” except that the state or federal government would pay for medical care, potentially set up the network of doctors and hospitals, and make rules about paying providers, according to Gerald Kominski, Director of the UCLA Center for Health Policy Research. Private industry could be involved in these or other aspects of running the health plan, much as they do in Medicare Advantage and managed Medicaid plans.
California Healthline interviewed Kominski to better understand how a public option could work. The interview was edited for length and clarity.
Q: When we talk about a public option, do we mean a health plan for which the government takes the risk, sets the coverage rules and pays out the claims — and enrollees pay premiums just as they would to an insurance company?
That is what the public option would be. But that still leaves out the answer to a lot of questions about how actually that would occur. How would a government agency essentially become the insurer? So we have two examples. We have the Medicare program and we have the Medicaid program.
Medicare establishes the rules. It contracts with insurance companies to pay the bills. And that’s the way that Medicare has operated for over 50 years.
Now we have Medicare Advantage plans, where the contracting is not to pay bills but is basically contracting with insurers to bundle the services. And rather than pay the doctors and hospitals, the government pays the insurer and puts the insurer at risk.
Q: Insurers have opposed this idea in the past, and they’re opposing it again now that it’s being raised by members of Congress.
Private insurers could participate as administrators or providers on behalf of the state. But here’s one concern that I have with that model: California has four large insurance companies in the exchange that account for about 90 percent of the market.
Let’s say the state of California wanted to create a public option and hire an insurance company to administer that product for it. What would be the reason or the incentive for any of those companies to agree to be the plan administrator for the public option when the public option would be competing with the product that they’re already offering? They would be competing with themselves.Use Our Content This KHN story can be republished for free (details).
Q: Some provider groups may be opposed to a public option because they say that government programs like Medi-Cal pay very little and they believe a public option plan would also pay little. Is this necessarily the case that a government program would pay low rates?
It’s not necessarily the case, but it is in fact what we observe in the Medicare and the Medicaid/Medi-Cal programs.
Q: Do you think a public plan would help bring down costs in the health care system by negotiating for lower payments to hospitals and doctors?
I think that is possible in other areas of the country, where there are markets with one or two health insurance plans in the exchange. I think California has one of the most competitive ACA marketplaces. And so would the public option in California dramatically reduce premiums? I think the answer is no. It would have little or no effect.
For some people, the advantage is that we think that the public option’s going to be around because the state’s not going to back out of its commitment, whereas private insurers come and go in the marketplace.
Q: Is there something about California’s health care system that uniquely primes the state for a public option?
I think so. One of the things that’s unique about California is the high percentage of managed care enrollment. The public option in California would probably include or be based on a managed care model and Californians are pretty receptive to that model.
Q: So if the public option could include private insurance, why are the insurers so opposed?
Well, the simple answer is they don’t want more competition. And again it goes back to, why was this battle so intense during the development and enactment of the ACA back in 2009 and 2010? The insurance industry said we cannot compete with a plan, a government plan, that pays doctors and hospitals using Medicare fees or fee schedules.
You remember the fundamental rule of business is you don’t want more competition. You want the market to yourself.
Q: Do you think it would be more effective or easier to implement a public option at a state or national level?
Well that’s where you can’t ignore the political environment. And so the short answer is in the current political environment, doing something at the national level is extremely difficult. Even though there might be arguments to develop a public option at the national level, it’s very challenging in the current political environment to get the agreement.
Q: Is there something that’s more efficient about a national public option?
Potentially. It’s economies of scale. You know, the larger your potential market nationally, the lower the potential costs per person. You just get administrative savings and efficiency. But it’s not easy to create a national program. One issue that’s challenging is how to put together a national network of doctors and hospitals that would participate. That’s a lot of work.
Q: Do you think the idea of a public option is more viable now than it was when it was debated before and ultimately stripped from the Affordable Care Act?
A: Well, I think that what makes it more attractive right now is the fact that we’ve got two large insurance companies that are pulling out of the exchange marketplaces. And because of that … the idea of a public option to provide stability and protection for people in the exchanges has resurfaced. And I think with good reason.
Last spring, everything changed for Matt Larson.
“One day I was fine. The next I was being rushed by ambulance to Denver Health following two very massive and violent seizures,” said Larson.
The force of the seizures, from the sheer shaking, fractured and dislocated his shoulders and snapped two bones in his back. Soon, his doctors had life-altering test results to share with him.
“They came back and shut the door and said ‘you have mass on your brain,’ which was tough to hear,” said Larson, who lives in Denver.
The diagnosis, a malignant brain tumor called an anaplastic oligodendroglioma, rocked his world. Larson, 36, and his girlfriend, Kelly, decided to get married. He says a couple of days later, surgeons cracked open his skull and scooped out part of his brain. Since then he’s endured the tough road of radiation and chemo, with a sobering outlook.
“I have a 50/50 probability that I’m going to live,” said Larson. “I hope to beat the odds. I desperately want to live.”
But Larson has decided that if the brain cancer returns and is incurable, he’d like the option to end his life rather than face the possibility of an agonizing and painful death.
“It would just bring me a ton of peace and comfort now to know that I have this option,” Larson said.This story is part of a partnership that includes Colorado Public Radio, NPR and Kaiser Health News. It can be republished for free. (details)
He’s become an advocate for Colorado’s Proposition 106. It would give mentally competent adults the ability to end their lives with a doctor-prescribed drug, generally a high dose of a sleeping medication called secobarbital.
“We need to help people diminish and assuage their suffering any way we can,” said Dr. David Grube, a family doctor in Oregon, one of five states to allow the practice.
Grube, who retired after practicing for 38 years, is also a national medical director for the group Compassion & Choices. He became a proponent of what he calls “death with dignity” shortly before the law passed in Oregon in 1994. He was moved to the position after one of his patients, who was dying from bladder cancer, shot himself to death.
“If I can ever prevent such a violent and tragic end to a person’s life, I should be open to helping people,” Grube said.
Four states currently allow the practice: Washington, Oregon, California and Vermont; and Montana has effectively legalized it, due to a court ruling that protects doctors who help dying patients from prosecution.
A poll of likely Colorado voters conducted last month found 70 percent said they favored Proposition 106. The poll of 540 registered voters by Franklin & Marshall College was commissioned by Rocky Mountain PBS and Colorado Mesa University.
Colorado’s proposal is modeled after Oregon’s law. In both, two doctors must determine a patient is mentally capable of making the choice and isn’t under undue influence or coercion. Grube said he has helped about 30 people end their lives, with about a third of those who requested medications deciding not to take them.
“Many more people just want to talk about it, just want to know if it’s a possible option,” said Grube. “Still, in all, it’s quite uncommon.”
According to the Oregon Public Health Division, during 2015, 218 people received prescriptions for lethal medications under the provisions of the state’s Death with Dignity Act. That was up from 155 the prior year. The division has received reports of 132 people who died in 2015 from taking the medications prescribed under the act, a rate of 38.6 per 10,000 patients.
More than 90 percent of those patients died at home and were enrolled in hospice care. Since the Oregon law was passed, 1,545 people have received legal prescriptions; 991 patients died after ingesting the medications.
When patients were asked why they decided to consider ending their lives, the most common concerns were that they were less able to engage in activities that make life enjoyable, and that they were losing both autonomy and dignity. Further down the list were inadequate pain control and the financial impact of the treatment.
Doctors As Healers
But Denver physician Alan Rastrelli opposes the proposal. He worries it will erode the public’s trust in doctors as healers.
“Physicians will go towards this philosophy of assisting a patient in their death,” he said. “That will destroy, I think, the patient and physician relationship.”
Rastrelli, who practiced anesthesiology for 28 years, transitioned into hospice and palliative medicine 15 years ago. He says when doctors help patients end their lives, it creates a societal and bioethical calamity.
Rastrelli worries about what the initiative doesn’t do, such as require a physician to be present when the person dies. He also said it’s difficult to know about common problems or mistakes because reporting requirements in Oregon, and in Colorado’s proposal, are weak.
He advocates helping dying patients to use pain relievers and receive spiritual and psychological support to ease suffering.
“Woody Allen said, ‘I’m not afraid of dying, I just don’t want to be there when it happens,'” Rastrelli said. “We can help people be OK all the way through to the end.”
That makes a lot of sense to advocates with Not Dead Yet, a national group run by people with disabilities that opposes the proposal.
Anita Cameron, one of the group’s board members, said doctors “are humans and they make mistakes.”
Cameron’s mother, Alice, was diagnosed with end-stage chronic lung disease seven years ago. She was given less than six months to live. Today, Cameron’s mother is still alive.
“Had the law been in place, I’m pretty sure those doctors would have convinced my mom to take the pills,” Cameron said. “And she’d be dead.”
Cameron has several disabilities, including multiple sclerosis. She worries that the ballot proposal will encourage people with disabilities to kill themselves. She also thinks that in some cases, insurers will agree to pay for end-of-life medications, but not for measures to keep someone alive.
“When is it going to be a duty to die?” asked Cameron. “That’s what euthanasia is, and when is it going to stop being a choice?”
Battle Draws Big Bucks
The ballot initiative is drawing passion — and plenty of money.
According to the latest filings with the Colorado Secretary of State’s office, backers have raised about $5.6 million, mostly from Compassion & Choices Action Network.
The “No Assisted Suicide Colorado” campaign has raised $2.4 million. That money is primarily coming from the Roman Catholic Archdiocese of Denver, which has donated $1.1 million, as well as other archdioceses around the country.
Both sides have also received numerous smaller donations.
The board of the Colorado Medical Society, the state’s largest physician group, voted to take a neutral position on the measure, just as doctors in California did last year. President-elect Dr. Katie Lozano calls the proposal “the most personal of decisions that must be left to our patients” to decide.
A February poll of 618 Colorado physicians before the ballot measure was proposed found support within the group for physician-assisted death in general. Fifty-six percent of medical society members favored it; 35 percent opposed.
Among those who frequently treat patients in later stages of a terminal illness, the gap was smaller, with 50 percent backing physician-assisted death and 41 percent opposing it.
The medical society said there was a consensus that if the law were to pass, it should focus on protecting patients and doctors, and increasing awareness of end-of-life choices, emphasizing the importance of palliative and hospice care.
Election ballots in Colorado started being mailed last week.
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
Supporters of “death with dignity” have succeeded in legalizing medical aid-in-dying in five states by convincing voters, lawmakers and courts that terminally ill patients have the right to die without suffering intractable pain in their final days or weeks.
When Gov. Jerry Brown signed California’s law in 2015, he said: “I do not know what I would do if I were dying in prolonged and excruciating pain” and that it would be a “comfort to consider the options afforded by this bill.”
Yet the latest research shows that terminally ill patients who seek out aid-in-dying aren’t primarily concerned about pain. Those who’ve actually used these laws thus far have been far more concerned about controlling the way they exit the world than controlling pain.
The research suggests that patients’ motivations are more complicated than they’re often portrayed and could affect or shape how people vote on the issue in other cities and states.
Colorado voters will decide on a ballot initiative to legalize physician aid-in-dying in November. The city council in Washington, D.C., is expected to vote on legalizing the practice next month.This KHN story also ran in The Washington Post. It can be republished for free (details).
“It’s almost never about pain,” said Lonny Shavelson, a Berkeley, Calif., physician who specializes in the care of the terminally ill and who began writing prescriptions for lethal doses of medication in June, when California’s law took effect. “It’s about dignity and control.”
Pain ranks near the bottom of a list of patients’ concerns in Oregon and Washington, the first two states to legalize physician-assisted dying, which provide the most complete details about people’s motivations. Only 25 percent of the 991 Oregon patients who died after taking lethal prescriptions from 1998 to 2015 were concerned about pain or had inadequate pain control, according to reports filed with the state by their doctors. In Washington, 36 percent of 917 who died were concerned about pain.
In contrast, at least 90 percent of patients in both states were motivated by a loss of autonomy, state records show. Forty-one percent of patients in Oregon and 53 percent in Washington said they feared burdening the people they loved. Montana, Vermont and California physician also permit aid-in-dying, but haven’t released detailed information about patients’ motivations.
Compassion & Choices, an advocacy group that supports aid-in-dying, focuses heavily on the need to relieve dying patients of pain.
One of the group’s new ads promotes the District of Columbia’s Death With Dignity Act as giving “a dying person the option to avoid the worst pain and suffering at the end of life.” The widower of Brittany Maynard, a 29-year-old California woman who became the best-known advocate for the right to die, has spoken publicly in support of the legislation. Maynard, who had an aggressive brain tumor, moved to Oregon in 2014 in order to use that state’s aid-in-dying law. She died that year after using a lethal prescription.
“The dying process is what Brittany feared,” said her husband, Dan Diaz. “She was afraid that her final few days on this green earth would be ones where she was tortured by the tumor.”
Mary Klein, a 68-year-old resident of the District who is fighting advanced ovarian cancer, said she wants choices at the end of her life.
“I want to have the option to control my own body and control my own life,” said Klein, a retired journalist and artist who appears in a video supporting legislation to legalize aid-in-dying in the city, created by Compassion & Choices.
Although Klein says she may also enroll in hospice care, which focuses on the needs of people with six months or less to live, she wants to have an alternative if the services don’t meet her needs.
“The dominant reasons for wanting euthanasia or assisted suicide are psychological and involve control factors,” said Ezekiel Emanuel, chair of medical ethics and health policy at the University of Pennsylvania. He noted that most of those who’ve used aid-in-dying laws are white, well-insured and college educated. “These are people who are used to controlling every aspect of their lives, and they want to control this aspect of their lives.”
A study of 56 Oregon patients interested in physician aid-in-dying reached similar conclusions. Although patients were concerned about the risk of future pain, they ranked “current pain” as unimportant, according to the 2009 study in Archives of Internal Medicine (now known as JAMA Internal Medicine). Patients told researchers they were primarily motivated by a desire to “control the circumstances of death and die at home,” as well as a loss of independence, poor quality of life and their inability to care for themselves.
The patients interviewed “look forward to this period in their terminal illness, this time in which they will be not in control, when they will be dependent on others, when they will have a bunch of physical symptoms that will undermine their quality of life, and they want to avoid that,” said Linda Ganzini, a professor of psychiatry and medicine at Oregon Health & Science University.
Critics of aid-in-dying laws have for years warned that they could set the country on a “slippery slope,” in which lethal prescriptions are dispensed not just to the terminally ill, but to anyone with a disease that harms their quality of life. Those fears haven’t come to pass. But physician Ira Byock, who specializes in palliative care, said aid-in-dying laws are creating a slope of another kind. Instead of helping only terminally ill patients in physical pain, they’re being used by patients in psychological distress.
“It’s a bait and switch,” said Byock, executive director and chief medical officer for the Institute for Human Caring of Providence Health and Services, based in Torrance, Calif. “We’re actually helping people hasten their deaths because of existential suffering. That’s chilling to me.”
Although right-to-die campaigns suggest that excruciating pain is often unavoidable, Byock said that “we can relieve the suffering of almost everyone that we care for if we have the time to prepare.”
Hospice staff are on call 24 hours a day to help patients in pain, Byock said. Palliative care and hospice teams also can train family caregivers how to administer emergency pain medications that take effect before nurses can arrive.
Hospice may have alleviated some patients’ concerns, said physician Thomas Smith, director of palliative medicine at Johns Hopkins Medicine in Baltimore. Just 64 percent of Oregon patients and 82 percent of Washington patients last year actually used the lethal medications they were prescribed. Others died without taking them.
“Many people who have the prescriptions don’t use them,” Smith said. “That suggests to me that some people find meaning and purpose and adequate symptom control, not just that they are too weak to take the pills.”
Many Kinds Of Suffering
Barbara Coombs Lee, president of Compassion & Choices, said it’s difficult for people to predict how they will feel as they face a deadly illness. While a healthy person might not imagine being able to tolerate physical disability, people facing the prospect of an early death are often willing to accept harsh treatments or a reduced quality of life in exchange for more time.
That change in perspective could help explain why some of those who advocate for the right to die, including those who obtain lethal prescriptions, never actually choose to hasten their death, Coombs Lee said. But she said that having the prescription on hand can ease patients’ anxiety and give them peace of mind, because they can control the timing and method of death.
Coombs Lee also notes that people can suffer in many ways beyond physical pain. Maynard’s brain tumor caused her to suffer frequent seizures, for example. Coombs Lee also described the case of a dying woman who took a lethal prescription after she began leaking fecal matter, which prevented her from ever feeling clean.
Coombs Lee quotes the woman, Penny Schleuter, in her book, Compassion in Dying: Stories of Dignity and Choice. Schleuter said the pain from her cancer could be controlled. But, she added, “I like doing things for myself, and the idea of having somebody take care of me like I am a little 2-month-old baby is just absolutely repulsive. It’s more painful than any of the pain from the cancer.”
Coombs Lee said, “everyone who is terminally ill has some kind of nightmare that would be worse than death to them. They want to achieve sufficient control to avoid that nightmare for their family.”
Dan Diaz said people shouldn’t underestimate how devastating it can be to lose one’s autonomy.
“If I find myself in a situation where I can’t go to the bathroom on my own, where someone has to change my diapers, where I can’t feed myself, where I can’t care for the people around me, where other people have to move me around to keep me from having bed sores, I would then submit, is that really living?” Diaz asked.
Some people who pursue physician-assisted death “don’t want to be in a hospital, don’t want to be connected to tubes,” Coombs Lee said. “They say, ‘I want to be at home with those I love. I don’t want to be delirious or unconscious at the end of life. Those are all things that play into their fears about what their disease might descend into.”
KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation and coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
PAWTUCKET, R.I. — Dustin French, 29, had four drug overdoses in the span of a year. “I was dead on arrival to the hospital,” he said of his last heroin overdose, which happened in April. “I woke up … and I didn’t feel like myself. I could tell this time I was really dead.”
Now, he says, he’s 100 days clean. He lives with his girlfriend. And he has three sons: an 8-year-old, a 2-year-old and a 1-year-old.
He credits his turnaround to a relationship he launched in the emergency department with a “peer recovery specialist” — someone who had herself struggled with addiction. She was there, he said, “when nobody else was.”
Stories like French’s have led policymakers — here in Rhode Island and in other states — to embrace a road to recovery led by people who have traveled it. It’s a growing effort to address the nation’s burgeoning opioid epidemic.This KHN story also ran on CNN.com. It can be republished for free (details).
Here’s how the idea, still in its infancy, works: During overdose patients’ emergency department stays, they are introduced to a “peer recovery coach.” Patients trust these coaches, with whom they share common experiences. Coaches then stay in touch after discharge, meeting patients regularly to help navigate the path toward sobriety and resolve issues such as housing, food stamp applications, court obligations or job searches.
The model is gaining traction because millions of Americans are estimated to abuse opioids, an epidemic that’s behind billions of dollars in hospitalization costs. States want to train these workers, fund them and integrate them into the health system. Even so, they have to cross numerous logistical hurdles if they want the strategy to pay off.
So far, French has received active follow-up care, both from his coach and from AnchorED, the organization that operates Rhode Island’s peer recovery program.
Now, he has a job cleaning kitchen equipment. He is studying for his commercial driver’s license.
“Anything I needed, she was always there,” he said of his coach. “That program saved my life.”
Rhode Island – where, since 2009, more than 1,000 people have died from painkiller or heroin overdoses — is taking a lead. This summer, the state committed to assigning a peer coach to every hospital emergency department and footing the bill. Other states, such as New York, New Jersey, Wisconsin, Maryland, Pennsylvania, Massachusetts and Delaware, are experimenting with ways to place and pay for peer coaches in their ERs, though programs vary in size and evolution. The National Governors Association has also come out in favor of the mode.
States hope to keep patients healthier and improve their own finances. The cost of a phone call with a peer coach, the logic goes, is less than that of a return trip to the ER. Many addiction patients are covered by Medicaid, the federal-state health plan for low-income people.
But it’s a gamble to see whether lay people — whose main asset is that shared experience with patients — could be part of the secret sauce to curbing painkiller and heroin abuse. And challenges persist. These include getting more insurance plans to cover the service and devising payment structures in which they can easily do that; certifying and training peers; and the big one, finding definitive evidence that the peer coaches help.
“There is barely any research,” noted Dr. Manish Sapra, associate chief of clinical affairs, network hospitals and affiliates for Western Psychiatric Institute and Clinic of the University of Pittsburgh Medical Center, which has a peer recovery pilot program. Despite growing interest, “there are no randomized controlled trials to show peer recovery efforts or peer support have as big an effect as what we’re hoping.”
Intuitively, it makes sense. Peers who have navigated addiction are more relatable, experts said. They can spend an hour with patients, compared to the emergency doctor who, on a hectic Friday night, may only have a few minutes to discuss treatment. And, perhaps most importantly, they offer living proof that recovery is possible.
“When you’re struggling through this issue — however you got there — you often feel like there’s no hope, there’s no end to this and you’re alone,” said Dale Klatzker, president of The Providence Center, which operates AnchorED.
But if advocates want this model to stick, they need to prove peers provide more than just comfort. States want to know the service actually improves health outcomes for people with addiction. Insurers want to know they will save money if they cover this coaching model and the related services, such as helping clients in court or accompanying them to therapy.
That’s why Maryland, which is working to expand its state-sponsored program, is starting to collect data on whether patients improve and what services the counselors help them get. The state hopes to track whether this intervention is cost-effective, by cutting the number of patients who return to the emergency room. Similar research is underway in Rhode Island and Massachusetts.
“Producing robust research to support [its] effectiveness … is critical,” said Colleen Barry, a professor of health policy at Johns Hopkins University, who co-directs its Center for Mental Health and Addiction Policy Research.
And there are other hurdles. States have to figure out how to credential coaches. Some are developing certification programs that including training in motivational interviewing, navigating community resources, building rapport and understanding how addiction and recovery work.
Part of the challenge is ensuring counselors meet certain standards without making them seem less authentic and relatable to patients — like a junior clinician. Many hospitals also have strict rules about whether their employees can have a criminal background, which further limits the pool.
“We want to hire people with lived [addiction] experience, and the reality is most people with that will have a criminal record,” Dr. Sarah Wakeman, medical director of the substance use disorder initiative at Massachusetts General Hospital’s Center for Community Health Improvement, which has piloted the model.
Recruiting is another issue. In Rhode Island, AnchorED employs about 22 peers to serve the state. Each has a caseload of maybe 40 clients at once. But that hardly meets the need, said George O’Toole, who manages the peer recovery program. And that’s in a small state, with about a dozen hospitals. Other states trying to emulate the model have to scale up.
Consider New York. “Everything’s at such a different scale. But [Rhode Island’s] approach makes sense,” said Robert Kent, general counsel for New York State’s Office of Alcoholism and Substance Abuse Services.
Meanwhile, the counselors also need to be established in their own recovery and be willing to work in the program, which can be emotionally taxing and time-consuming.
And then patients don’t always buy in, warned Dr. Gary Bubly, medical director for the Miriam Hospital Emergency Department in Providence. His department has “heavily used” peer coaches. The symptoms of withdrawal can be so unpleasant that, even after an overdose, patients may reject any treatment path.
But the potential outweighs these complications, advocates said. “If there is one thing I can look at in my career and say, ‘That was a good thing,’ — this will be it,” said Rebecca Boss, Rhode Island’s acting director of behavioral healthcare, developmental disabilities and hospitals. She helped develop the program.
Take French, the AnchorED patient. He calls these early recovery months transformative.
“These people understand addiction, and they’re going to meet you where you’re at. Whether you’re using or not — they’re going to help you.”