Planning for end of life or critical care is not a favorite topic of conversation, but it is an important one. Having health care advance directives in place can help ensure your wishes are made clear to your loved ones and physicians when you are not in position to advocate for the type of care you wish to receive.
What is a health care advance directive? The American Bar Association’s Commission on Law and Aging defines a health care advance directive as “the generic term for any document that gives instructions about your health care and/or appoints someone to make medical treatment decisions for you if you cannot make them for yourself.”
Typically, health care advance directives take two main forms: a living will and a durable power of attorney for health care, although the titles for these documents might vary from state to state. Living wills are defined as documents “in which you state your wishes about life-sustaining medical treatment if you are terminally ill, permanently unconscious, or in the end-stage of a fatal illness.” Alternately, a durable power of attorney for health care is defined as a “document in which you appoint someone else to make medical treatment decisions for you if you cannot make them for yourself. The person you name is called your agent, proxy, representative, attorney-in-fact, or surrogate. You can also include instructions for decision-making.”
In this post we will provide some resources that will help you communicate your preferences regarding medical treatment. When completing your research, please keep in mind that the law regarding health care advance directives is very dependent on state law.
There are many helpful online resources for those interested in creating health care advance directives. We have collected a selection of resources below:
- Department of Health and Human Services, Advance Directives and Advance Care Planning: Legal and Policy Issues
- National Hospice and Palliative Care Association, Download Your State’s Advance Directives
- American Bar Association Commission on Law and Aging
- National Academy of Elder Law Attorneys, Review of Advance Health Care Directive Laws in the United States, the Portability of Documents, and the Surrogate Decision Maker When No Document Is Executed
- Mayo Clinic, Living Wills and Advance Directives for Medical Decisions
- Nolo Press, How to Write a Living Will
We also suggest using the Guide to Law Online, created by the Law Library of Congress, to find more information about laws and regulations, as well as legal research guides, for your state.
If you are able to visit your local public law library, there are also several print-based resources that can provide guidance—and, in some resources, even sample forms—regarding different health care advance directives. Some of the print resources in the Library of Congress collection include:
- The Law of Later-Life Health Care and Decision Making, by Lawrence A. Frolik
- Do-it-yourself Living Will : Simple 1-2-3 Kit includes CD with Forms for Every State
- 5@55 : The 5 Essential Legal Documents you Need by Age 55, by Judith D. Grimaldi and Joanne Seminara with Pierre A. Lehu
- The Health Care Power of Attorney and Living Will: Special Health Report/Medical Editor, by Anne Fabiny; legal editor, Charles Sabatino; writer, Francesca Coltrera; editor, Annmarie F. Dadoly
- Durable Powers of Attorney and Health Care Directives, by Michael L.M. Jordan
- The Will and Living Will toolkit : The Ultimate Guide to Preparing your Will and Living Will, by Daniel Sitarz
- Estate Planning : for People with a Chronic Condition or Disability, by Martin M. Shenkman
- Personal Legal Forms Simplified, by Daniel Sitarz
As we have noted in previous Beginner’s Guides, you can find these resources in a library near you by using the WorldCat catalog. When you select a resource from your search results list in WorldCat, scroll down to the “Find a copy in my library” section, enter your zip code (or city and country, for those not in the United States), and WorldCat will list the closest libraries to you that own that resource. You can then click on the library’s name to be taken to the resource’s entry in that library’s catalog.
We hope the information in this Beginner’s Guide helps you get started in your research regarding advance health care directives. If, after reviewing the information above, you still have further research questions, please feel free to use our Ask a Librarian service.
Amid a raging opioid epidemic, there’s a plea for more treatment options. The Food and Drug Administration expects to have a decision on one by May 27.
It’s an implant. Four rods, each about the size of a match stick, inserted in the upper arm. This new device, called Probuphine, delivers a continuous dose of an existing drug, buprenorphine but with better results, says implant maker Braeburn Pharmaceuticals.
In clinical trials, 88 percent of patients with the implants abstained from opioids, as compared to 72 percent of those taking buprenorphine as a daily pill. (Buprenorphine is commonly referred to by its brand name, Suboxone).
“I felt completely normal all the time,” said Dave, a paramedic in a small town outside Boston who was on the implant during a clinical trial. He does not want his last name made public so that co-workers won’t find out he is addicted to opioid pain pills.
Dave, 47, has been in recovery for four years with the help of buprenorphine. Dave said he prefers the implant to the pills for several reasons. With the pills he would sometimes feel the drug wear off. He worried about his 2-year-old granddaughter getting into the bottle. And sometimes Dave would just forget to take his medication, which he’s supposed to do in the morning, 15 minutes before he has anything to eat or drink.
“With the implant you didn’t have to worry about that, you just, it was just there and you felt good all the time,” Dave said.
There’s a second reason the manufacturer says its implants are better than pills.
“Buprenorphine is the third most confiscated opioid by the DEA, so there’s certainly diversion going on,” said Braeburn Pharmaceuticals CEO Behshad Sheldon, referring to illegal sales of the prescribed drug.
But not with the implants, according to Sheldon. She says no one tried to remove their implant during trials so they could sell the drug inside.More Coverage Of The Opioid Addiction Crisis In Mass.
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An FDA advisory committee reviewed the implant in January and recommended approval.
Dr. Barbara Herbert, president of the Massachusetts Society of Addiction Medicine, is one of many providers waiting for the agency’s decision.
“Anything that might help people beat their opioid addiction is a good idea,” Herbert said.
But she has reservations.
Probuphine is only available in one dose, the equivalent of 8 mg per day. You can’t cut a rod in half as you might a pill or adjust the dose. Herbert said that could be a problem.
“We don’t want to overshoot and give people more buprenorphine than they need, because it makes them somnolent. And for some people they’re going to need more,” Herbert warned, which takes patients back to the challenge of remembering to take a daily pill. The company said the 8 mg dose will be effective for a large number of addiction patients.
Herbert is also concerned about price. Sheldon said the cost of the implants will be competitive with other treatments, including Vivitrol, a shot that is $1,000 a month. Herbert said at that rate, providers may be forced to turn patients away or cut back on other services. She questions whether the price will be justified.
“High profits in the middle of this epidemic are really unconscionable,” Herbert said.
Sheldon said there will be rebates and assistance with co-pays to make sure patients can get the implant. The device may mean fewer patients sharing needles and contracting infectious diseases which Sheldon says will save money for doctors and health insurers.
“If they don’t realize those savings we’re happy to rebate them even further,” Sheldon said.
Even at close to a $1,000 a month, demand for the implants, if approved, is expected to be high as more and more Americans struggle with an opioid addiction and more physicians approach addiction as a chronic disease.
Dave, the paramedic who is in recovery, said he’s thought about trying to wean himself off the treatment drugs.
“But then, the more I think about it, it scares the hell out of me, cause I’m scared of going backwards. I honestly don’t know what would happen,” he said.
The company will need to train doctors on how to insert the implant, if approved. Sheldon said she doesn’t know yet if reinserting the device into the same opening in the arm will work or if doctors would have to create a new scar for each six-month replacement.
And then there’s the problem of patient limits. Right now physicians cannot treat more than 100 patients with buprenorphine. The Obama administration wants to raise that cap, and Congress is considering legislation that would do so. Sheldon said one bill would exempt buprenorphine implants from the 100-patient limit, which could effectively increase the cap as well.
Earlier this year, Katy Mallory’s husband, Dan, traveled to Mexico for business. That itself is not typically a big deal, but Katy is pregnant with twin girls, and Mexico is among the countries where the Centers for Disease Control and Prevention say mosquitoes are actively spreading Zika, a virus that’s been linked to severe birth defects.
Dan Mallory says in the middle of his trip, news hit that the Zika wasn’t only transmitted by mosquitoes, but could also be sexually transmitted. So when he returned, the Decatur couple decided to follow the CDC’s recommendation: use condoms during sex.
“It was a little bit weird to think about needing to use protection having been together for 10 years and not having had that conversation in a really, really, really long time,” Katy Mallory said.This story is part of a partnership that includes WABE, NPR and Kaiser Health News. It can be republished for free. (details)
While the couple knew the risk of Dan having Zika and transmitting it to his wife were small, “Fear of the unknown was enough to cause pause and be pretty careful,” he said.
Weighing The Risks
“Careful” describes the approach many women in the South say they’re taking as mosquito season starts up in the region.
The CDC has linked Zika to microcephaly, a birth defect where babies are born with smaller heads and smaller brains that don’t develop properly. The World Health Organization says as of the middle of May 2016, more than 1,300 cases of microcephaly and other neurological disorders believed to be Zika-related had been reported from nine countries, including the U.S.
Georgia has seen 13 Zika cases so far, all of them in people who have traveled to one of the 55 countries where the WHO says Zika is active. None of the cases were in pregnant women.
While the virus hasn’t been seen in mosquitoes in Georgia yet, the potential for transmission, while small, exists.
The disease is spread primarily through one species of mosquito, the Aedes aegypti, though experts say the tiger mosquito could also carry it. Both species of mosquito are found in Georgia and about 30 other U.S. states. Health officials say their presence means the U.S. could eventually see small, local clusters of the Zika virus.
“One bite can do it,” said Sarah Grzywacz, an Atlanta resident who canceled a trip to Mexico after consulting with her doctor. “One bite and you can be infected, and this child we so deeply planned for and deeply wanted could be forever changed and forever injured by our desire to have a vacation.”
Grzywacz, who’s seven months pregnant, says because the mosquitoes that carry Zika are also in Georgia, she tries to stay inside as much as possible and wears pants and long-sleeved shirts when she goes outside. She knows the risk of getting Zika is very, very small, but she wants to be cautious.
“We feel mostly powerless to control what happens because it’s mosquito bites,” Grzywacz said. “How can you go outside in the summer and not get bitten by a mosquito?”
Some Georgia women told WABE they’re holding off on planning a pregnancy this year altogether because of Zika.
“This summer, do I need a full-body net? That is everyone’s question,” said Emory Healthcare gynecologist Dr. John Horton.
Of course there’s no need for body nets, Horton says, but he understands why women are so worried.
His office hands out a Zika form that asks patients about recent travel and any symptoms they may have. At this point, however, Horton would not recommend women delay pregnancy because of Zika.
“I recognize it’s on our Caribbean door, but we haven’t seen it yet, and it may not come,” Horton said.
Horton points out the mosquitoes that carry Zika also carry viruses like dengue, yellow fever and chikungunya. Those haven’t been widely spread in the U.S., in part because people here are better shielded from mosquitoes by screens and air conditioning.
“If it gets here, we will figure this out,” Horton says.
Stopping Zika’s Spread
That “if,” though, has state health officials on alert.
“It’s very important that people are very aware of cleaning up around their house,” said Georgia Department of Public Health Commissioner Brenda Fitzgerald.
The DPH commissioner says the state is taking the risk of Zika seriously. She says the department has set up mosquito traps to figure out where Zika risks might exist. There’s also a public service campaign underway to educate residents on preventing mosquito breeding grounds.
“Toss any container around your home that you’re not using,” Fitzgerald said. “Make sure you empty your gutters. Make sure you get rid of any standing water.”
Fitzgerald says right now the biggest risk to pregnant women is travel-related, but it’s not a minimal one, given that Atlanta’s Hartsfield-Jackson airport hit a record 100 million passengers last year.
The CDC recommends women wait eight weeks after traveling to a Zika-infected country to conceive. If a women’s male partner shows symptoms of Zika, which include rash, joint pain and eye inflammation, the couple should wait six months because the virus can linger in semen.
California state legislators and advocates are racing to get federal approval in the waning months of the Obama administration for a proposal to allow immigrants living in the U.S. illegally onto the California insurance exchange.
Fearful that a new administration will torpedo their plans, they are working hard to win legislative support in California and clear other hurdles at the state and federal level.
California state Sen. Ricardo Lara is carrying a bill to allow people living in the country illegally to purchase health insurance — on their own dime — through the state exchange.
The proposal needs federal approval to modify the marketplace set up under the Affordable Care Act, which specifically prohibits such immigrants from joining the exchanges. Lara’s bill SB10 would compel California to seek that approval.
The measure “is consistent with [President Obama’s] values of immigrant integration,” said Lara. “We’re very confident we’re going to be able to get this done.”
Lara put an urgency clause on the legislation to increase the chances the request will reach Washington, D.C. before Obama leaves office in January. Bills with urgency clauses require a two-thirds majority to pass California’s Legislature, and with the current make-up of the State House, Lara’s measure would need at least a few Republican votes. Its next test is in the Assembly appropriations committee on Wednesday.
Leaders of the California Republican caucus in both legislative chambers declined to comment on whether the bill has enough support to pass. But a Republican strategist said the California GOP might be more likely to support the measure than its national counterpart, to avoid ceding the state’s Latino vote to the Democrats.
“Elected Republicans in California know the party has no future in speaking out [against} those issues,” said Rob Stutzman of Stutzman Public Affairs in Sacramento. “They need to be able to add immigrant voters down the road.”
Proponents say they believe they’ll also get Gov. Jerry Brown’s signature. He’s signed off on other benefits for undocumented immigrants, including driver’s licenses and student financial aid.
Even if the proposal is approved by California lawmakers, however, it faces significant obstacles after that — even under the Obama administration.
“It would be … a struggle to get a proposal in a form that it could be approved by this administration,” said Michael Kolber, who, as a healthcare associate with the New York law firm Manatt, Phelps & Phillips, advises the private and public sector on the Affordable Care Act.
For one thing, public comment and federal review requirements could cause delays, Kolber said.
And even if the proposal works its way through that maze and is reviewed by the Obama administration, he said, it may not be approved because of current federal guidelines.
The U.S. Department of Health and Human Services has strict rules for modifying the Affordable Care Act marketplaces. They might have been put in place to avoid creating a precedent that opens the door to future changes the current administration would deem “less palatable,” Kolber said.This story is part of a partnership that includes CALmatters and Kaiser Health News. It can be republished for free. (details)
Still, advocates would rather bet on this administration than risk dealing with a new one — particularly a Trump administration.
The fate of the proposal “does depend on which president is in the White House, and we’re talking about who’s in the White House in 2017,” Kolber said.
Presumptive Republican nominee Donald Trump says he wants to repeal the Affordable Care Act and has vowed to deport undocumented immigrants from the United States.
Both Democratic presidential candidates, former Secretary of State Hillary Clinton and Sen. Bernie Sanders of Vermont, support the idea of unauthorized immigrants buying unsubsidized health coverage. But whether their administrations would be able to follow through is uncertain.
Administrative hurdles aside, the proposed change in California would have to withstand the storm of the nation’s immigration debate.
Those who seek stronger immigration controls don’t look kindly on extending benefits to people in the country illegally — a tack California has repeatedly taken, most recently in the realm of health care: This month, undocumented children will start receiving full Medi-Cal benefits, and dozens of Northern California counties will start covering primary care and prescription drugs for the undocumented.
Allowing adults on the insurance exchange “is another step in California’s relentless effort to … eliminate any kind of distinction between people who are in the country illegally and people who are here legally,” said Ira Mehlman, media director for the Washington D.C.-based Federation for American Immigration Reform.
Mehlman said the Covered California proposal could lead to taxpayer-funded health care for people who have violated the law.
“First you say they should be eligible, then you come back and say no one can afford it, so now we have to start subsidizing it,” he said.
Advocates of the change see it entirely differently. California would be opening up a marketplace to potential buyers, not giving a “handout,” said Sonya Schwartz, a research fellow at Georgetown University’s Center for Children and Families.
“These immigrants “should be able to have a basic quality of life,” Schwartz said, adding that their good health is important to everyone.
“These are families who are in our same supermarket — we want to make sure they’re getting inoculations,” she said.
As many as 320,000 immigrants now excluded from coverage on the exchange in California could be in the market to buy plans through Covered California, according to the University of California, Berkeley Labor Center.
Though these immigrants may already purchase health plans on the private individual market, proponents of the change say allowing them to enroll through Covered California would make it easier for families with mixed immigration status. Family members could enroll all at once through the state exchange system — though Covered California insurance would not necessarily be less expensive than the private market for the ones who are in the country illegally.
The potential new market for health plans sold on the exchange would include the landscapers, restaurant owners and bakery workers whom Covered California enrollment assistant Adriana Jimenez meets every year in Anaheim.
Many times the parents are here illegally and are ineligible for Covered California or Medi-Cal — but their kids qualify for coverage, said Jimenez, program director at Give For a Smile, a nonprofit that helps low-income families navigate the healthcare system.
Jimenez acknowledged that even if the families were allowed to buy insurance through Covered California, they could be priced out of the market without government subsidies.
“But at least they [would] have the option to buy something” to cover everyone, she said.
More than 7,300 patients at a San Diego-area hospital may have been exposed to infection from contaminated medications last year, state records show.
The problems were traced to the compounding pharmacy lab at Paradise Valley Hospital in National City, California, where inspectors found “dust, stains and foreign material” in a supposedly sterile environment in which thousands of intravenous medications were prepared over eight months — from Jan. 1 to Aug. 18.
During their investigation into the pharmacy, California health inspectors found that oversight of infection control was lacking throughout the hospital, according to documents obtained by a reporter through the California Public Records Act.
According to the inspectors’ report, the head of infection control at the hospital not only neglected to monitor the compounding lab, but also falsified documents to cover up her failure to check practices in the operating rooms in 2015.
Paradise Valley, owned by the for-profit chain Prime Healthcare Services, fired the employee on Aug. 18 after the state uncovered her misconduct, according to state inspectors. The hospital told California officials that it also took steps to address the other problems identified by inspectors.This story also ran in The San Diego Union-Tribune. It can be republished for free (details).
A spokesman for the California Department of Public Health said Paradise Valley was fined $17,500 in December following the investigation. Inspectors did not deem the problems to pose immediate jeopardy to patients, which would have been the most serious violation and could have triggered an initial fine of up to $75,000.
The spokesman, Ronald Owens, said the state “did not identify actual harm to any patients” and that regulators accepted the hospital’s plan of correction. State officials did not say how they investigated the question of patient harm.
The hospital is appealing the state’s penalty, saying outside lab tests determined there was no contamination of the pharmacy or medications.
A Prime Healthcare spokeswoman said it wasn’t necessary to notify patients who received the compounded medications during the eight-month period because “further analysis found no evidence of contamination during this time period.”
Most hospitals perform compounding, which involves mixing or altering approved drugs to meet a patient’s specific needs. Intravenous medications and patient nutrition make up much of the compounding work in hospitals.
Unsanitary conditions in a compounding pharmacy can pose a serious risk to patients because bacteria can grow on surfaces and equipment, leading to contamination of IV drugs and potentially lethal infections. In 2012 and 2013, for example, a nationwide meningitis outbreak was tied to contaminated injections made by a compounding pharmacy in Massachusetts. More than 700 people were sickened, including 64 who died.
The state said the Paradise Valley pharmacy knew that samples taken from workers’ gloved fingertips had tested positive for bacterial growth, but those employees were allowed to continue mixing IVs despite the contamination danger that activity posed.
About Drug Compounding
- Compounding medications involves mixing or altering drugs to meet patients’ needs. Most hospitals do it.
- Compounding can require sterile, germ-free conditions to ensure safety and quality.
- Hospital compounding often focuses on intravenous medications and patient nutrition.
- In a 2012 meningitis outbreak tied to a Massachusetts compounding pharmacy, 700 people were sickened, including 64 who died. Other outbreaks have been reported through the years.
“The hospital did not act on the data showing eight of 11 pharmacy technicians failed the test,” wrote the state inspectors, who work on behalf of the U.S. Centers for Medicare and Medicaid Services. “These failures resulted in the potential from 1/1/15 to 8/18/15 for 7,301 patients to be exposed to preventable infections from 4,322 contaminated IV medications.”
In addition, the state inspection reports said the hospital’s chief nursing officer and an administrator confirmed that the infection-control officer falsified a checklist for observing designated practices in the operating rooms. In one example, she altered a 2013 form to make it appear that surveillance was done in 2015, the state found.
The infection-control officer “acknowledged altering and falsifying the [operating rooms] audit record to make it appear as though she was current in her surveillance of that department. She informed them that she had not performed any audits in the [operating rooms] in 2015 and that the year just got away from her,” according to the state records.
Paradise Valley declined to identify the infection control official. It told inspectors that the employee was terminated because “unethical behavior is not acceptable and not tolerated.”
In addition to the hospital’s poor maintenance of hygiene in the pharmacy, it “failed to ensure that the special care nursery, operating room and the emergency department were maintained to ensure an acceptable level of cleanliness, safety and quality,” the state inspectors said.
State officials also cited Paradise Valley for other deficiencies related to medications.
The hospital’s staff failed to adequately review physician orders and put some patients at risk for overdoses on narcotic pain medications, the state said. Paradise Valley also failed to discard some expired drugs and didn’t have medications available in the operating room for potential emergencies.
Paradise Valley said it has taken measures to correct the range of problems cited by inspectors. The hospital pledged, for instance, to work on its compliance rate for hand-washing. In May 2015, 62 percent of staff were observed performing proper hand hygiene. That was worse than the 2014 rate of 65 percent and far short of the hospital’s goal of 100 percent.
The hospital also told state officials that it had instituted a new cleaning process for the compounding area and began ordering some medications from outside the hospital until technicians in the pharmacy met the appropriate standards, according to state records.
Last year, the U.S. Health and Human Services’ inspector general issued a report calling for better oversight of compounded drugs in hospitals and urging stricter inspections.
Susan Dolan, president of the Association for Professionals in Infection Control and Epidemiology, said the government findings at Paradise Valley indicate several safety breakdowns that could endanger patients.
“There are standards hospital pharmacies should be following to prevent contamination,” said Dolan, an epidemiologist at Children’s Hospital in Aurora, Colorado. “Any deviation can affect patients in a negative way, even including death.”
Prime Healthcare, based in Ontario, has become one of the nation’s largest health systems by acquiring financially struggling hospitals across the country. It runs 43 hospitals in 14 states. The company purchased Paradise Valley Hospital in 2007.