Patient Protection
Bedside Manner: Advocating for a Relative in the Hospital
By Melinda Beck WSJ Article : October 28, 2008
Don't go to the hospital alone, if you can possibly avoid it.
A friend of mine slipped on the sidewalk recently and broke her hip. She had surgery in one of the best hospitals in the country.
But it was my friend's grown daughter who noticed that she was having an adverse reaction to a pain medication. And that her IV drip had pulled out of a vein and was pumping her arm full of fluid. And that the hot compresses to reduce the swelling in her arm had left blisters on her skin. And that the blood-sugar test she was about to be given was meant for her roommate instead.
Having someone with you in a hospital who is alert and asking questions can help stave off all kinds of potential problems, from mistaken identity to medication mixups to MRSA infections. An estimated 100,000 hospital patients die every year in the U.S. because of preventable errors. Many hospitals are under financial pressures to keep nursing staffs lean. A personal advocate can be a valuable resource. It doesn't have to be a relative -- and it can be more than one person -- as long as they know you and are willing to speak up.
"If we could make only one change in health care, it should be to change the notion that families are visitors. Families are allies and partners for safety and quality," says Beverly Johnson, president of the nonprofit Institute for Family-Centered Care, which is leading a movement to involve families more.
A growing number of hospitals are doing just that -- including unlimited visiting hours, letting family members accompany patients to procedures and even stay during emergencies. "We're drawing on the strength of the family. They're not out in the waiting room, wondering what's going on," says Pat Sodomka, senior vice president for Patient and Family-Centered Care at MCG Health Inc., which runs a 630-bed hospital in Augusta, Ga.
Some hospitals now have nurses give change-of-shift reports at the bedside and encourage families to share observations.
"This is a huge cultural change," says Mary Chatman, Chief Nursing Officer of Pitt County Memorial Hospital in Greenville, N.C., which is giving family and patient advisory groups a voice in designing new facilities and interviewing physicians.
Initially, some staffers worried that family involvement would take up valuable time, but in the long run, it saves time because doctors have more information, says Ms. Chatman. After MCG Health's neuroscience unit became more family-centered, average length of stay dropped 50% because discharge planning went faster. Patient satisfaction rose, and nursing turnover dropped.
Still, it can be difficult for family members to know when to raise an alarm and how.
Karen Aydt Curtiss, a market researcher in Lake Forest, Ill., often felt helpless while her 71-year-old father was recovering from a lung transplant in a big teaching hospital in 2005. He was faring well until he fell, hit his head and was made to lie flat until a neurologist could evaluate him. While he waited -- all weekend -- his new lungs filled up with fluid. He developed pneumonia, then a pulmonary embolism and had three MRSA infections. He died seven months after the transplant, having never left the hospital.
"I wish I had grabbed the neurologist by the sleeve and dragged him to my father's room," says Ms. Curtiss, who is writing a book on how to help a loved one in the hospital, titled "Someone With You."
Among her suggestions:
In Treatment, You May Need an Advocate
By Jane E. Brody : NY Times Article : October 27, 2009
Two days after surgery to replace both my knees, a social worker employed by the hospital told me that the insurance company would not pay for me to stay any longer. Seeing that I was barely able to get to the bathroom on my own, she told the company I was not ready to enter rehab and insisted that I needed at least another day in the hospital.
She was right, and I was grateful for the intervention; I was in no shape to argue with insurance bureaucrats whose goal is to save money and who had no interest in, nor any way to assess, my well-being.
As health issues go, mine was a relatively minor concern. I now realize that in the complex world of modern medicine, nearly all patients, and especially those who are critically ill, need an advocate, someone to negotiate with medical professionals, insurers and others to ensure that they are receiving optimal care.
David Wayne Smith, a disability specialist at the Arizona Arthritis Center in Tucson, became an advocate for his 58-year-old son, who had been thrown from a horse and lay near death in a hospital room 500 miles away. He had several broken ribs, bruised lungs, a fractured clavicle and serious breathing problems, Dr. Smith wrote in the September-October issue of Arthritis Self-Management. For three long weeks, during which there were many close calls with death, his son lay in a drug-induced coma, his breathing maintained by a tube in his throat and a respirator.
Steeling himself against profound feelings of helplessness and fear, Dr. Smith quickly realized he had to become part of his son’s treatment team as a patient advocate.
Dr. Smith began by making himself known to the hospital administrator and everyone involved with his son’s care. He called the chief of the trauma center whenever his son took a turn for the worse and got permission for himself and his son’s wife to attend daily rounds when doctors discussed the patient’s progress. And when his son was ready to leave the trauma center, Dr. Smith insisted that he be transferred to a rehabilitation center, not a regular hospital bed.
Thanks in large part to Dr. Smith’s advocacy, his son made rapid progress in rehab and in two weeks was able to go home, where his father has continued to advocate on his behalf, now to help counter the depression and anxiety that can accompany such a life-changing accident.
When Help Is Important “I see patients routinely in this situation, patients in their 30s and 40s who’ve been told by rheumatologists that they can no longer work and must get by on Social Security disability benefits,” Dr. Smith, 83, said in an interview. “I work with them to find specialists who can help them improve their situation, and I encourage them to take better care of themselves.
“Many patients with rheumatoid arthritis are reluctant to have the surgery that can enable them to get back to work, or they don’t take their medication, or they fail to see the proper specialists.”
Four situations that call for a patient advocate:
Perhaps most important, patient advocates assist with continuity of care, ensuring that critical medical information is given to new providers and helping patients connect with ancillary personnel when employment, financial, legal or other issues arise. For example, the advocate might negotiate with an employer to adapt work responsibilities that fit the abilities of an ill or injured patient but still benefit the employer.
Sometimes, advocates also have to work with families facing role reversal issues when the family breadwinner becomes disabled. Dr. Smith said that when illness or injury disrupted the family dynamic, communication problems were commonplace.
Dr. Smith told of a woman who served as an advocate for her husband, who had been severely injured in a traffic accident. When the trauma surgeon said the man’s leg would have to be amputated, the woman refused to consent to the surgery and instead arranged with his insurance company to have him transferred to a skilled nursing facility, where he could get both physical and occupational therapy.
The wife consulted a plastic surgeon, who repaired injuries to the man’s face and sewed his thumb back on. She also closely monitored his pain medication and arranged for a unit that relieves pain through electrical nerve stimulation, arguing with the insurer that this would be a less costly and more effective approach than heavy-duty drugs.
In the end, the man’s leg was saved and his face minimally scarred. He could walk without any aid or limp and was able to return to work as a clinical nurse.
Key Qualifications An effective advocate, Dr. Smith said, has to be “knowledgeable, committed and aggressive — forceful in a positive way and a good listener.”
He added that it was important to be cooperative, caring and firm, but not demanding, to foster cooperation and not antagonize the patient’s health care providers.
The advocate can be a family member or friend, or a professional patient advocate, who often has a background in medical social work. Some who work with older people are called geriatric care managers. Many patient advocates are volunteers whose compensation comes from satisfaction in helping someone recover.
It is better to avoid advocates who might have a conflict of interest that could compromise patient care. Thus, using an advocate employed by the hospital or insurance company may not always serve the patient’s best interests.
Some hospitals maintain a roster of patient advocate volunteers. The Patient Advocate Foundation, at 800-532-5274 and www.patientadvocate.org, can provide help by phone about problems with insurance, job retention or debt crises resulting from a chronic, life-threatening or debilitating illness.
Learning to Ask Tough Questions Of Your Surgeon
By Laura Landro : WSJ Article : January 9, 2008
While many Web savvy patients today can ask a doctor about minute details of their circulatory system or cancer treatment, when it comes to asking the really tough, personal questions, they often clam up. Even when going under the knife, patients are often too intimidated to ask how qualified a surgeon is, or what safety procedures are in place.
But as complications and errors dog some surgical procedures, experts say it is increasingly crucial for patients to vet their surgeons and take an active role in preventing mistakes.
To help patients be more pro-active, health-care groups, hospitals and medical specialty societies are offering new resources, including Web sites, books and checklists of questions to ask. The aim is to help patients select qualified surgeons, prepare for operations, and overcome the fear that often inhibits them from asking tough questions.
These new efforts are spurred in part by the sharp rise in surgeries performed in outpatient facilities; including doctor's offices and surgical centers, where patients aren't guaranteed the same access to care as in a hospital should something go wrong. A rash of recent news has highlighted the risks, such as the death of rap mogul Kanye West's mother after an office cosmetic procedure by a surgeon who was facing disciplinary action at the state medical board and two malpractice suits that ended in significant payouts.
Since patients can't prevent mishaps once they are under anesthesia, it is all the more important to question surgeons beforehand. "Patients should feel free to ask their surgeon anything they want answered about the operation or the surgeon's competency to perform it," says Thomas Russell, a surgeon and executive director of the American College of Surgeons. "There are no questions that should be off the table."
In a new book to be published this month, "I Need an Operation...Now What? A Patient's Guide to a Safe and Successful Outcome," Dr. Russell provides patients with lists of questions for surgeons, including their success rates, how many operations they perform in a year, and whether they have any health issues of their own that would interfere with their ability to do the procedure. While he suggests using a respectful and nonconfrontational tone, he also urges patients to "size up" the surgeon's communication skills -- and avoid those who are unresponsive, distracted or rushed.
Ronda Collier, a 43-year-old Ann Arbor, Mich., marketing professional, consulted several surgeons prior to having brain surgery a few years ago, but she recalls being too worried about seeming offensive to ask whether a doctor had a good safety record or used recreational drugs or alcohol. With a checklist such as that devised by Dr. Russell, "You can simply say I have this list of questions recommended to me and I'm just going down the list," she says. "It's not a personal attack."
Consumer Guides
Most major hospitals around the country have added to their Web sites checklists such as a 2005 brochure prepared by the federal Agency for Healthcare Research and Quality, "Having Surgery? What You Need to Know." And state medical boards have added consumer guides, such as the Massachusetts Medical Board's guide to asking questions during office-based procedures.
But by far the most useful information comes from medical specialty groups and nonprofit disease advocacy organizations that offer tips for specific surgeries. SpineUniverse.com1, which is affiliated with spine-related medical societies, offers a list of questions specific to back surgery, while breastcancer.org provides a list of questions to ask the doctor before making decisions about mastectomies and lumpectomies.
The American Society for Dermatologic Surgery recently launched a patient-safety campaign urging consumers to check a practitioner's qualifications and credentials before undergoing any cosmetic surgery procedure, offering up some gruesome pictures on its Web site (asds.net2) of complications that resulted from botched lasers, high-tech light devices and chemical peels.
And the American Board of Medical Specialties, whose 24 member boards certify about 85% of U.S. physicians, recently began airing a televised public-service announcement about the importance of board certification, a process that requires doctors to take continuing medical-education courses and periodic exams to demonstrate competency. Its abms.org Web site allows patients to search by name and specialty to verify a physician's certification. Consumers can also use state medical boards' Web sites to see whether a surgeon's license is current and whether there are any disciplinary actions pending; for a $9 fee, the Federation of State Medical Boards (www.fsmb.org3) will also run a search.
To be sure, most of the estimated 40 million surgical procedures that Americans undergo every year are safe, and quality groups such as the Joint Commission, which accredits hospitals and other health-care providers, have in recent years pushed the adoption of new safety measures, such as the use of pre-surgery antibiotics to prevent infections, and post-surgical monitoring to prevent strokes or blood clots.
Resisting Change
Yet many of those safety measures aren't being universally followed, in part because of the frenetic pace of many hospitals but also because hospitals haven't done enough to improve the processes of care. Moreover, surgeons are often resistant to changes in the way they do things -- such as stopping a surgical procedure to do a safety check, says Peter Angood, a surgeon who is vice president and chief patient safety officer of the Joint Commission.
Though still infrequent, wrong-site surgeries -- a term that includes the wrong procedure, wrong site or wrong person -- continue to bedevil safety experts. The Joint Commission in 2004 issued a protocol for all hospitals that includes a final safety check and requires the marking of the procedure site with an indelible marker. But the number of reported cases of wrong-site surgery have actually increased, at a rate of about five to eight new cases per month -- for a total of nearly 550 since 1996.
Preventing Mistakes
A study of near-misses and wrong-site surgeries in Pennsylvania showed that correct information from patients or families was often key to preventing a mistake; Dr. Angood urges patients to participate in marking the site and ask whether surgeons are following the wrong-site prevention steps. The Joint Commission Web site (jointcommission.org4) has more information on the wrong-site protocol; consumers can download a brochure, "Help Avoid Mistakes in Your Surgery" and check the safety record of the facility at qualitycheck.org.
Aside from complications and errors during surgery, patients should ask about issues that may affect recovery after an operation, and what types of post-operative complications may occur. Dr. Russell of the American College of Surgeons advises patients to speak up about any concerns such as a wound that doesn't heal or pain that isn't controlled, and includes a list of post-operative complications to watch out for such as swelling in the legs that could signal a blood clot. In addition to his $19.95 book -- proceeds will be used for safety and education research -- the college offers free consumer information about what to expect from a number of different surgeries on its www.facs.org Web site.
Loss of a Job? Here's How To Replace the Health Benefits
By Anna Wilde Mathews : WSJ Article : November 20, 2008
The U.S. economy has shed some 1.2 million jobs so far this year, forcing many people to cope with one of the toughest aspects of getting laid off: losing the health benefits that go along with being employed.
That shrinkage of the American workplace represents the biggest loss of jobs since the most recent recession, in 2001. Since then, there have been big changes in health coverage for the newly unemployed. The cost of keeping the same health plan you had at work, under the federal Cobra law, is way up. Today, the average family will have to pay 80% more than it did in 2001 to hold on to this coverage.
Buying your own policy in the so-called individual insurance market can be cheaper than Cobra, and there are many more types of health plans being sold. But these policies sometimes have coverage limits and exclusions that can be hard to decipher, and applicants with pre-existing conditions, such as diabetes or heart disease, may simply be turned down.
That's what happened to Bonnie Nelson, 56 years old, of Andover, Minn., who lost her job at a life-insurance company at the end of last year. She and her husband, who works part time and is covered by Medicare, couldn't afford the $450 a month it would have cost to keep her employer plan after she was laid off. But Ms. Nelson was turned down for individual-insurance coverage by four different insurers, who cited the cost of her medications among other factors in rejecting her applications.
Ms. Nelson says she takes medication for asthma and cholesterol and an antidepressant, and used to take a pricey biotech drug for rheumatoid arthritis. For the moment, she has decided to go without health insurance. The lack "is always there, like a little voice in the back of my head," she says. "I try not to worry about it too much."
Here are your main options for staying insured if you are laid off:
Keeping employer coverage. The best choice, if it is available, is to seek coverage from a family member's employer, says Kathleen Murray, of consultant Mercer, a unit of Marsh & McLennan Cos. Even if it isn't open-enrollment season, when employees make their coverage selections for the following year, you may have the right to join a spouse's plan if you act within 30 days after you lose your workplace coverage.
You can also stick with your own employer-sponsored plan under Cobra, the 1986 Consolidated Omnibus Budget Reconciliation Act. The protection generally lasts up to 18 months, and you must opt for Cobra within 60 days of losing your job or of receiving formal notification that you are eligible for the program, whichever is later. The statute includes only companies with 20 or more employees that are continuing to offer a health plan. But some states have their own versions of Cobra that may include employees of smaller companies or cover a different time span.
Resources
If you're facing the loss of your workplace health benefits, here are some places to research your options.
For More Information on Cobra:
Or look at four big insurers' offerings:
UnitedHealthcare, Aetna, WellPoint and Cigna
Check the consumer protections available -- or not -- in your state. Here's a summary from Families USA, a congressional hearing about individual plans being rescinded.
Government Coverage and Rules: StateHealthFacts.org is a Kaiser Family Foundation site with extensive information about state Cobra protections, state coverage options, and other topics:
This site has links to state insurance regulators
And here are state-by-state guides from Families USA with information about government coverage.
If your job loss is tied to trade or imports, you may be eligible for special help. Learn more here.
If you choose to take Cobra coverage, you must keep the health plan you had before you lost your job. After you are in Cobra, you can switch plans -- if you should want lower-cost coverage, for instance -- when the company's active employees go through open enrollment. If you think you may be at risk of losing your job, it may be worth selecting a lower-premium plan while you're still working for the company.
Some people go to great lengths to keep their coverage through Cobra, especially if they think they won't be able to buy another policy. Andrea Marinelli, 49, of Holbrook, N.Y., lost her job as an underwriter at a mortgage-insurance company at the end of January. That was around the time when her husband, who was covered under her insurance, needed a kidney transplant because of advanced diabetes. Ms. Marinelli, who donated the kidney herself, says the couple cashed out her 401(k) retirement plan in order to afford the $1,200-a-month Cobra premium and keep paying their home mortgage. "We said, 'We'll do whatever it takes'" to keep the insurance, she says.
Indeed, Cobra's biggest downside is the cost. Active employees generally pay roughly 25% of their total health-insurance premiums, with the employer picking up the rest. But laid-off employees who get Cobra coverage are responsible for 100% of the cost, plus an additional 2% for administrative expenses. For an employer plan this year, the average annual family premium was $12,680, and for individuals it was $4,704, according to a survey by the Kaiser Family Foundation and the Health Research & Educational Trust. That's up 80% for a family and 75% for an individual from 2001 levels.
About 27% of employees who are eligible for Cobra benefits choose to take them, according to a limited 2006 survey conducted by Spencer's Benefits Reports, a Wolters Kluwer NV publication. You may save some money by choosing to cover only certain family members under Cobra, but the rules are complicated, so check with your employer benefits manager. Another key thing to know: Once Cobra coverage runs out, insurers may be required under federal law to sell you another policy, though there's no guarantee on the price. But different states implement this rule in different ways.
Buying coverage on your own. Big insurers including Aetna Inc., WellPoint Inc., Cigna Corp. and UnitedHealth Group Inc. have been rolling out a greater variety of plans, letting consumers select among an expanding menu of benefits and prices. Aetna this year introduced seven new plans aimed at early retirees that it offered with AARP, the lobbying group for older people, and has a new product, currently available only in Illinois, aimed at young people with premiums as low as $40 a month.
UnitedHealth on Thursday is unveiling several new plans that the company says will offer lower premiums but could require consumers to pay higher out-of-pocket costs. For instance, in certain plans people can choose deductibles as high as $10,000, double the current top figure of $5,000. The insurer will also announce a health-savings-account plan that charges members a percentage of the cost of certain care, such as hospital services, up to a set maximum. That's instead of completely covering such costs after a deductible is met.
The Day After
Premiums for policies people buy on their own vary widely by state and by the age of the applicant. The average annual premium was $2,613 for an individual, and $5,799 for a family, according to the industry survey. Average costs are lower than those for employer-sponsored group plans partly because benefits in individual-insurance policies are often more limited and the plans may have higher charges such as co-payments.
Price was the main reason Kathy Taylor, 55, of Burlington, Conn., decided to buy a policy on her own after she was laid off last month from her job as a property manager. Working with an insurance agent, she settled on a plan that she believes offers benefits comparable to her old insurance. And the premium, at $450 a month, was $300 less than keeping her workplace coverage. The downside: Her old coverage had no deductible, whereas the new plan requires her to pay a $1,500 deductible. Ms. Taylor says she is opening a tax-advantaged health-savings account to help defray the additional costs.
Consumers need to check the fine print when purchasing coverage on their own to make sure they understand what the plan does and doesn't include. For instance, there might be riders blocking coverage for preexisting conditions. "People think, 'I bought a health policy that covers everything.' If that were true, it would be one sentence long," says Joel Ario, Pennsylvania's insurance commissioner. "They're long because they have lists of exclusions and limits."
Insurers have come in for criticism for aggressive marketing. AARP and UnitedHealth, for example, recently said they would suspend selling limited-benefit plans that had caps on coverage for care including surgery. They are facing an investigation by Iowa Republican Sen. Charles Grassley into whether their marketing fully disclosed the coverage limits.
Government safety net. Consumers with modest incomes should check whether they or family members might be eligible for government coverage. The requirements to qualify for Medicaid and the State Children's Health Insurance Program vary by state. In most states, SCHIP can be available for kids in families with incomes twice the federal poverty level, which was $21,200 in 2008 for a household of four in the mainland U.S.
Doing without health insurance should be a last-ditch choice. Beyond the obvious risk of sickness or accident, there is a hidden cost. If you spend more than 63 days without coverage you lose certain legal protections. For instance, a new employer can impose a waiting period before it covers your preexisting conditions.
By Melinda Beck WSJ Article : October 28, 2008
Don't go to the hospital alone, if you can possibly avoid it.
A friend of mine slipped on the sidewalk recently and broke her hip. She had surgery in one of the best hospitals in the country.
But it was my friend's grown daughter who noticed that she was having an adverse reaction to a pain medication. And that her IV drip had pulled out of a vein and was pumping her arm full of fluid. And that the hot compresses to reduce the swelling in her arm had left blisters on her skin. And that the blood-sugar test she was about to be given was meant for her roommate instead.
Having someone with you in a hospital who is alert and asking questions can help stave off all kinds of potential problems, from mistaken identity to medication mixups to MRSA infections. An estimated 100,000 hospital patients die every year in the U.S. because of preventable errors. Many hospitals are under financial pressures to keep nursing staffs lean. A personal advocate can be a valuable resource. It doesn't have to be a relative -- and it can be more than one person -- as long as they know you and are willing to speak up.
"If we could make only one change in health care, it should be to change the notion that families are visitors. Families are allies and partners for safety and quality," says Beverly Johnson, president of the nonprofit Institute for Family-Centered Care, which is leading a movement to involve families more.
A growing number of hospitals are doing just that -- including unlimited visiting hours, letting family members accompany patients to procedures and even stay during emergencies. "We're drawing on the strength of the family. They're not out in the waiting room, wondering what's going on," says Pat Sodomka, senior vice president for Patient and Family-Centered Care at MCG Health Inc., which runs a 630-bed hospital in Augusta, Ga.
Some hospitals now have nurses give change-of-shift reports at the bedside and encourage families to share observations.
"This is a huge cultural change," says Mary Chatman, Chief Nursing Officer of Pitt County Memorial Hospital in Greenville, N.C., which is giving family and patient advisory groups a voice in designing new facilities and interviewing physicians.
Initially, some staffers worried that family involvement would take up valuable time, but in the long run, it saves time because doctors have more information, says Ms. Chatman. After MCG Health's neuroscience unit became more family-centered, average length of stay dropped 50% because discharge planning went faster. Patient satisfaction rose, and nursing turnover dropped.
Still, it can be difficult for family members to know when to raise an alarm and how.
Karen Aydt Curtiss, a market researcher in Lake Forest, Ill., often felt helpless while her 71-year-old father was recovering from a lung transplant in a big teaching hospital in 2005. He was faring well until he fell, hit his head and was made to lie flat until a neurologist could evaluate him. While he waited -- all weekend -- his new lungs filled up with fluid. He developed pneumonia, then a pulmonary embolism and had three MRSA infections. He died seven months after the transplant, having never left the hospital.
"I wish I had grabbed the neurologist by the sleeve and dragged him to my father's room," says Ms. Curtiss, who is writing a book on how to help a loved one in the hospital, titled "Someone With You."
Among her suggestions:
- Ask everyone who enters the room if they've washed their hands and sterilized equipment. Use antibacterial wipes on surfaces.
- Ask nurses to read drug orders aloud and make sure they match the patient's ID bracelet. If it's a new medication, ask what it's for and what to expect.
- Be alert for pressure wounds, also known as bedsores, particularly in long hospital stays. Put a piece of sheepskin (available at medical-supply stores) under the sheet to provide padding and cut moisture. Make sure patients are moved often, and lifted, not slid, which can damage fragile tissue.
- Bring a deck of cards and other games to help patients work their minds and motor skills.
- Keep a journal for observations -- especially if you're sharing the watch with others.
- Never give a patient medications on your own.
- Don't help a patient get in or out of bed by yourself.
- Be respectful and appreciative and remember that other patients may have more urgent needs. But don't hesitate to speak up if you have concerns. Says Ms. Sodomka: "You have knowledge that the caregivers just don't have."
In Treatment, You May Need an Advocate
By Jane E. Brody : NY Times Article : October 27, 2009
Two days after surgery to replace both my knees, a social worker employed by the hospital told me that the insurance company would not pay for me to stay any longer. Seeing that I was barely able to get to the bathroom on my own, she told the company I was not ready to enter rehab and insisted that I needed at least another day in the hospital.
She was right, and I was grateful for the intervention; I was in no shape to argue with insurance bureaucrats whose goal is to save money and who had no interest in, nor any way to assess, my well-being.
As health issues go, mine was a relatively minor concern. I now realize that in the complex world of modern medicine, nearly all patients, and especially those who are critically ill, need an advocate, someone to negotiate with medical professionals, insurers and others to ensure that they are receiving optimal care.
David Wayne Smith, a disability specialist at the Arizona Arthritis Center in Tucson, became an advocate for his 58-year-old son, who had been thrown from a horse and lay near death in a hospital room 500 miles away. He had several broken ribs, bruised lungs, a fractured clavicle and serious breathing problems, Dr. Smith wrote in the September-October issue of Arthritis Self-Management. For three long weeks, during which there were many close calls with death, his son lay in a drug-induced coma, his breathing maintained by a tube in his throat and a respirator.
Steeling himself against profound feelings of helplessness and fear, Dr. Smith quickly realized he had to become part of his son’s treatment team as a patient advocate.
Dr. Smith began by making himself known to the hospital administrator and everyone involved with his son’s care. He called the chief of the trauma center whenever his son took a turn for the worse and got permission for himself and his son’s wife to attend daily rounds when doctors discussed the patient’s progress. And when his son was ready to leave the trauma center, Dr. Smith insisted that he be transferred to a rehabilitation center, not a regular hospital bed.
Thanks in large part to Dr. Smith’s advocacy, his son made rapid progress in rehab and in two weeks was able to go home, where his father has continued to advocate on his behalf, now to help counter the depression and anxiety that can accompany such a life-changing accident.
When Help Is Important “I see patients routinely in this situation, patients in their 30s and 40s who’ve been told by rheumatologists that they can no longer work and must get by on Social Security disability benefits,” Dr. Smith, 83, said in an interview. “I work with them to find specialists who can help them improve their situation, and I encourage them to take better care of themselves.
“Many patients with rheumatoid arthritis are reluctant to have the surgery that can enable them to get back to work, or they don’t take their medication, or they fail to see the proper specialists.”
Four situations that call for a patient advocate:
- Patients’ illnesses or injuries are life-threatening, and they are unable to act in their own behalf. (As with Dr. Smith’s son, such patients may be unconscious or placed in a drug-induced coma, or otherwise heavily medicated.)
- Important decisions must be immediately made regarding treatment, but patients are temporarily unable to act for themselves because of severe physical or emotional trauma.
- Although otherwise competent, patients are unaware of their rights, benefits or treatment options, as may happen with patients who have cancer, heart disease or severe arthritis.
- Patients lack the mental ability to make rational decisions regarding their rights, treatments and benefits.
Perhaps most important, patient advocates assist with continuity of care, ensuring that critical medical information is given to new providers and helping patients connect with ancillary personnel when employment, financial, legal or other issues arise. For example, the advocate might negotiate with an employer to adapt work responsibilities that fit the abilities of an ill or injured patient but still benefit the employer.
Sometimes, advocates also have to work with families facing role reversal issues when the family breadwinner becomes disabled. Dr. Smith said that when illness or injury disrupted the family dynamic, communication problems were commonplace.
Dr. Smith told of a woman who served as an advocate for her husband, who had been severely injured in a traffic accident. When the trauma surgeon said the man’s leg would have to be amputated, the woman refused to consent to the surgery and instead arranged with his insurance company to have him transferred to a skilled nursing facility, where he could get both physical and occupational therapy.
The wife consulted a plastic surgeon, who repaired injuries to the man’s face and sewed his thumb back on. She also closely monitored his pain medication and arranged for a unit that relieves pain through electrical nerve stimulation, arguing with the insurer that this would be a less costly and more effective approach than heavy-duty drugs.
In the end, the man’s leg was saved and his face minimally scarred. He could walk without any aid or limp and was able to return to work as a clinical nurse.
Key Qualifications An effective advocate, Dr. Smith said, has to be “knowledgeable, committed and aggressive — forceful in a positive way and a good listener.”
He added that it was important to be cooperative, caring and firm, but not demanding, to foster cooperation and not antagonize the patient’s health care providers.
The advocate can be a family member or friend, or a professional patient advocate, who often has a background in medical social work. Some who work with older people are called geriatric care managers. Many patient advocates are volunteers whose compensation comes from satisfaction in helping someone recover.
It is better to avoid advocates who might have a conflict of interest that could compromise patient care. Thus, using an advocate employed by the hospital or insurance company may not always serve the patient’s best interests.
Some hospitals maintain a roster of patient advocate volunteers. The Patient Advocate Foundation, at 800-532-5274 and www.patientadvocate.org, can provide help by phone about problems with insurance, job retention or debt crises resulting from a chronic, life-threatening or debilitating illness.
Learning to Ask Tough Questions Of Your Surgeon
By Laura Landro : WSJ Article : January 9, 2008
While many Web savvy patients today can ask a doctor about minute details of their circulatory system or cancer treatment, when it comes to asking the really tough, personal questions, they often clam up. Even when going under the knife, patients are often too intimidated to ask how qualified a surgeon is, or what safety procedures are in place.
But as complications and errors dog some surgical procedures, experts say it is increasingly crucial for patients to vet their surgeons and take an active role in preventing mistakes.
To help patients be more pro-active, health-care groups, hospitals and medical specialty societies are offering new resources, including Web sites, books and checklists of questions to ask. The aim is to help patients select qualified surgeons, prepare for operations, and overcome the fear that often inhibits them from asking tough questions.
These new efforts are spurred in part by the sharp rise in surgeries performed in outpatient facilities; including doctor's offices and surgical centers, where patients aren't guaranteed the same access to care as in a hospital should something go wrong. A rash of recent news has highlighted the risks, such as the death of rap mogul Kanye West's mother after an office cosmetic procedure by a surgeon who was facing disciplinary action at the state medical board and two malpractice suits that ended in significant payouts.
Since patients can't prevent mishaps once they are under anesthesia, it is all the more important to question surgeons beforehand. "Patients should feel free to ask their surgeon anything they want answered about the operation or the surgeon's competency to perform it," says Thomas Russell, a surgeon and executive director of the American College of Surgeons. "There are no questions that should be off the table."
In a new book to be published this month, "I Need an Operation...Now What? A Patient's Guide to a Safe and Successful Outcome," Dr. Russell provides patients with lists of questions for surgeons, including their success rates, how many operations they perform in a year, and whether they have any health issues of their own that would interfere with their ability to do the procedure. While he suggests using a respectful and nonconfrontational tone, he also urges patients to "size up" the surgeon's communication skills -- and avoid those who are unresponsive, distracted or rushed.
Ronda Collier, a 43-year-old Ann Arbor, Mich., marketing professional, consulted several surgeons prior to having brain surgery a few years ago, but she recalls being too worried about seeming offensive to ask whether a doctor had a good safety record or used recreational drugs or alcohol. With a checklist such as that devised by Dr. Russell, "You can simply say I have this list of questions recommended to me and I'm just going down the list," she says. "It's not a personal attack."
Consumer Guides
Most major hospitals around the country have added to their Web sites checklists such as a 2005 brochure prepared by the federal Agency for Healthcare Research and Quality, "Having Surgery? What You Need to Know." And state medical boards have added consumer guides, such as the Massachusetts Medical Board's guide to asking questions during office-based procedures.
But by far the most useful information comes from medical specialty groups and nonprofit disease advocacy organizations that offer tips for specific surgeries. SpineUniverse.com1, which is affiliated with spine-related medical societies, offers a list of questions specific to back surgery, while breastcancer.org provides a list of questions to ask the doctor before making decisions about mastectomies and lumpectomies.
The American Society for Dermatologic Surgery recently launched a patient-safety campaign urging consumers to check a practitioner's qualifications and credentials before undergoing any cosmetic surgery procedure, offering up some gruesome pictures on its Web site (asds.net2) of complications that resulted from botched lasers, high-tech light devices and chemical peels.
And the American Board of Medical Specialties, whose 24 member boards certify about 85% of U.S. physicians, recently began airing a televised public-service announcement about the importance of board certification, a process that requires doctors to take continuing medical-education courses and periodic exams to demonstrate competency. Its abms.org Web site allows patients to search by name and specialty to verify a physician's certification. Consumers can also use state medical boards' Web sites to see whether a surgeon's license is current and whether there are any disciplinary actions pending; for a $9 fee, the Federation of State Medical Boards (www.fsmb.org3) will also run a search.
To be sure, most of the estimated 40 million surgical procedures that Americans undergo every year are safe, and quality groups such as the Joint Commission, which accredits hospitals and other health-care providers, have in recent years pushed the adoption of new safety measures, such as the use of pre-surgery antibiotics to prevent infections, and post-surgical monitoring to prevent strokes or blood clots.
Resisting Change
Yet many of those safety measures aren't being universally followed, in part because of the frenetic pace of many hospitals but also because hospitals haven't done enough to improve the processes of care. Moreover, surgeons are often resistant to changes in the way they do things -- such as stopping a surgical procedure to do a safety check, says Peter Angood, a surgeon who is vice president and chief patient safety officer of the Joint Commission.
Though still infrequent, wrong-site surgeries -- a term that includes the wrong procedure, wrong site or wrong person -- continue to bedevil safety experts. The Joint Commission in 2004 issued a protocol for all hospitals that includes a final safety check and requires the marking of the procedure site with an indelible marker. But the number of reported cases of wrong-site surgery have actually increased, at a rate of about five to eight new cases per month -- for a total of nearly 550 since 1996.
Preventing Mistakes
A study of near-misses and wrong-site surgeries in Pennsylvania showed that correct information from patients or families was often key to preventing a mistake; Dr. Angood urges patients to participate in marking the site and ask whether surgeons are following the wrong-site prevention steps. The Joint Commission Web site (jointcommission.org4) has more information on the wrong-site protocol; consumers can download a brochure, "Help Avoid Mistakes in Your Surgery" and check the safety record of the facility at qualitycheck.org.
Aside from complications and errors during surgery, patients should ask about issues that may affect recovery after an operation, and what types of post-operative complications may occur. Dr. Russell of the American College of Surgeons advises patients to speak up about any concerns such as a wound that doesn't heal or pain that isn't controlled, and includes a list of post-operative complications to watch out for such as swelling in the legs that could signal a blood clot. In addition to his $19.95 book -- proceeds will be used for safety and education research -- the college offers free consumer information about what to expect from a number of different surgeries on its www.facs.org Web site.
Loss of a Job? Here's How To Replace the Health Benefits
By Anna Wilde Mathews : WSJ Article : November 20, 2008
The U.S. economy has shed some 1.2 million jobs so far this year, forcing many people to cope with one of the toughest aspects of getting laid off: losing the health benefits that go along with being employed.
That shrinkage of the American workplace represents the biggest loss of jobs since the most recent recession, in 2001. Since then, there have been big changes in health coverage for the newly unemployed. The cost of keeping the same health plan you had at work, under the federal Cobra law, is way up. Today, the average family will have to pay 80% more than it did in 2001 to hold on to this coverage.
Buying your own policy in the so-called individual insurance market can be cheaper than Cobra, and there are many more types of health plans being sold. But these policies sometimes have coverage limits and exclusions that can be hard to decipher, and applicants with pre-existing conditions, such as diabetes or heart disease, may simply be turned down.
That's what happened to Bonnie Nelson, 56 years old, of Andover, Minn., who lost her job at a life-insurance company at the end of last year. She and her husband, who works part time and is covered by Medicare, couldn't afford the $450 a month it would have cost to keep her employer plan after she was laid off. But Ms. Nelson was turned down for individual-insurance coverage by four different insurers, who cited the cost of her medications among other factors in rejecting her applications.
Ms. Nelson says she takes medication for asthma and cholesterol and an antidepressant, and used to take a pricey biotech drug for rheumatoid arthritis. For the moment, she has decided to go without health insurance. The lack "is always there, like a little voice in the back of my head," she says. "I try not to worry about it too much."
Here are your main options for staying insured if you are laid off:
Keeping employer coverage. The best choice, if it is available, is to seek coverage from a family member's employer, says Kathleen Murray, of consultant Mercer, a unit of Marsh & McLennan Cos. Even if it isn't open-enrollment season, when employees make their coverage selections for the following year, you may have the right to join a spouse's plan if you act within 30 days after you lose your workplace coverage.
You can also stick with your own employer-sponsored plan under Cobra, the 1986 Consolidated Omnibus Budget Reconciliation Act. The protection generally lasts up to 18 months, and you must opt for Cobra within 60 days of losing your job or of receiving formal notification that you are eligible for the program, whichever is later. The statute includes only companies with 20 or more employees that are continuing to offer a health plan. But some states have their own versions of Cobra that may include employees of smaller companies or cover a different time span.
Resources
If you're facing the loss of your workplace health benefits, here are some places to research your options.
For More Information on Cobra:
- The Labor Department's site.
- A backgrounder from a the Employee Benefit Research Institute
Or look at four big insurers' offerings:
UnitedHealthcare, Aetna, WellPoint and Cigna
Check the consumer protections available -- or not -- in your state. Here's a summary from Families USA, a congressional hearing about individual plans being rescinded.
Government Coverage and Rules: StateHealthFacts.org is a Kaiser Family Foundation site with extensive information about state Cobra protections, state coverage options, and other topics:
This site has links to state insurance regulators
And here are state-by-state guides from Families USA with information about government coverage.
If your job loss is tied to trade or imports, you may be eligible for special help. Learn more here.
If you choose to take Cobra coverage, you must keep the health plan you had before you lost your job. After you are in Cobra, you can switch plans -- if you should want lower-cost coverage, for instance -- when the company's active employees go through open enrollment. If you think you may be at risk of losing your job, it may be worth selecting a lower-premium plan while you're still working for the company.
Some people go to great lengths to keep their coverage through Cobra, especially if they think they won't be able to buy another policy. Andrea Marinelli, 49, of Holbrook, N.Y., lost her job as an underwriter at a mortgage-insurance company at the end of January. That was around the time when her husband, who was covered under her insurance, needed a kidney transplant because of advanced diabetes. Ms. Marinelli, who donated the kidney herself, says the couple cashed out her 401(k) retirement plan in order to afford the $1,200-a-month Cobra premium and keep paying their home mortgage. "We said, 'We'll do whatever it takes'" to keep the insurance, she says.
Indeed, Cobra's biggest downside is the cost. Active employees generally pay roughly 25% of their total health-insurance premiums, with the employer picking up the rest. But laid-off employees who get Cobra coverage are responsible for 100% of the cost, plus an additional 2% for administrative expenses. For an employer plan this year, the average annual family premium was $12,680, and for individuals it was $4,704, according to a survey by the Kaiser Family Foundation and the Health Research & Educational Trust. That's up 80% for a family and 75% for an individual from 2001 levels.
About 27% of employees who are eligible for Cobra benefits choose to take them, according to a limited 2006 survey conducted by Spencer's Benefits Reports, a Wolters Kluwer NV publication. You may save some money by choosing to cover only certain family members under Cobra, but the rules are complicated, so check with your employer benefits manager. Another key thing to know: Once Cobra coverage runs out, insurers may be required under federal law to sell you another policy, though there's no guarantee on the price. But different states implement this rule in different ways.
Buying coverage on your own. Big insurers including Aetna Inc., WellPoint Inc., Cigna Corp. and UnitedHealth Group Inc. have been rolling out a greater variety of plans, letting consumers select among an expanding menu of benefits and prices. Aetna this year introduced seven new plans aimed at early retirees that it offered with AARP, the lobbying group for older people, and has a new product, currently available only in Illinois, aimed at young people with premiums as low as $40 a month.
UnitedHealth on Thursday is unveiling several new plans that the company says will offer lower premiums but could require consumers to pay higher out-of-pocket costs. For instance, in certain plans people can choose deductibles as high as $10,000, double the current top figure of $5,000. The insurer will also announce a health-savings-account plan that charges members a percentage of the cost of certain care, such as hospital services, up to a set maximum. That's instead of completely covering such costs after a deductible is met.
The Day After
- For the newly unemployed, staying insured can be costly and confusing.
- The price of keeping your employer's coverage through Cobra has soared in recent years.
- Individual insurance policies offer greater variety, but can have hard-to-decipher limits and exclusions.
Premiums for policies people buy on their own vary widely by state and by the age of the applicant. The average annual premium was $2,613 for an individual, and $5,799 for a family, according to the industry survey. Average costs are lower than those for employer-sponsored group plans partly because benefits in individual-insurance policies are often more limited and the plans may have higher charges such as co-payments.
Price was the main reason Kathy Taylor, 55, of Burlington, Conn., decided to buy a policy on her own after she was laid off last month from her job as a property manager. Working with an insurance agent, she settled on a plan that she believes offers benefits comparable to her old insurance. And the premium, at $450 a month, was $300 less than keeping her workplace coverage. The downside: Her old coverage had no deductible, whereas the new plan requires her to pay a $1,500 deductible. Ms. Taylor says she is opening a tax-advantaged health-savings account to help defray the additional costs.
Consumers need to check the fine print when purchasing coverage on their own to make sure they understand what the plan does and doesn't include. For instance, there might be riders blocking coverage for preexisting conditions. "People think, 'I bought a health policy that covers everything.' If that were true, it would be one sentence long," says Joel Ario, Pennsylvania's insurance commissioner. "They're long because they have lists of exclusions and limits."
Insurers have come in for criticism for aggressive marketing. AARP and UnitedHealth, for example, recently said they would suspend selling limited-benefit plans that had caps on coverage for care including surgery. They are facing an investigation by Iowa Republican Sen. Charles Grassley into whether their marketing fully disclosed the coverage limits.
Government safety net. Consumers with modest incomes should check whether they or family members might be eligible for government coverage. The requirements to qualify for Medicaid and the State Children's Health Insurance Program vary by state. In most states, SCHIP can be available for kids in families with incomes twice the federal poverty level, which was $21,200 in 2008 for a household of four in the mainland U.S.
Doing without health insurance should be a last-ditch choice. Beyond the obvious risk of sickness or accident, there is a hidden cost. If you spend more than 63 days without coverage you lose certain legal protections. For instance, a new employer can impose a waiting period before it covers your preexisting conditions.
