As this blog has previously reported, patients in some parts of the country now can find professional patient advocates to help them. People who have tried it say these advocates are lifesavers who are worth every penny of their fee.
A group that does this for free with volunteers is called Bedside Advocates in the Boston area, founded by retired physician Jonathan Fine. The group was featured in a recent story by NPR health reporter Richard Knox. The problem is that volunteers working part-time can only help a limited number of patients, and the need is vast.
Nurse Dianne Savastano has set up a professional patient advocacy service, also in the Boston area. The NPR story quotes one of her clients, Barbara Porter, who hired Ms. Savastano to help manage the complex care needs of her elderly father, for which she pays Ms. Savastano $15,000 a year. Says Ms. Porter: "I tell him, 'Dad, you got resurrected.' He literally did get resurrected. He would either be dead or in a nursing home right now if it wasn't for Dianne."
Patrick Malone's new book, "The Life You Save," gives a list of pointers for how family members can become effective advocates for their elderly relatives who cannot manage their own care. If you live in an area with professional patient advocates, that should be an option you should consider. None of us can go it alone in this complex health care system.
]]>In my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst," I spend a chapter talking about all the questions you need to ask to find a top primary care doctor. The very first question is the doctor's basic credentials, which are easily available online from organizations like the American Board of Internal Medicine, which certifies internists and a number of sub-specialties within internal medicine.
]]>This is new because it's being rejuvenated as a way to cut costs and get higher quality care; it's old because the term was coined by the American Academy of Pediatrics in 1967. Jane Brody reports on this in her personal health column in the New York Times.
The medical home concept is supported by all the medical societies who represent primary care doctors. Unfortunately, over the last few decades, insurance reimbursements have been slanted toward performance of tests and not the painstaking work of listening to the patient, thinking through the patient's problem, and recommending a course of care.
Getting a top primary care doctor is one of the "Necessary Nine" steps for quality care outlined in my book: "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."
]]>The study was published in the Archives of Internal Medicine and was reported by Nicholas Bakalar in the New York Times. The study was also featured in Tara Parker-Pope's "Well" blog at the Times, which features a number of horror story comments by readers.
Overall, the study found seven times out of 100, abnormal test results were not conveyed to patients. In two large primary care practices, one in four abnormal test results were never mentioned to the patient.
Bottom line: Patients who don't hear back the results of their testing can never assume that no news is good news. People need to ask for a copy of their test results from either the doctor's office or the lab where the test was done.
Getting and reading your own medical records is Step One in the nine-step system I recommend for getting the best medical care, in my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."
]]>As reported in the Boston Globe by Liz Kowalczyk, the project will last a year and will include detailed questionnaires to see how doctors and patients react to these "open notes."
Sometimes the notes a doctor writes after seeing a patient are more blunt than the message the patient might hear in person, for example, a discussion in the office about the patient's obesity or use of narcotic pain relievers.
Patrick Malone's new book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst," advises patients to always read their own medical records -- even if the facts they contain may be a little "raw." The upside to reading your own record is to improve your own understanding of what the doctor's advice was, to help correct errors or omissions in what the doctor wrote, and to otherwise make you the patient a more vital participant in your own health care.
]]>To the Editor:
The reason malpractice is expensive and burdensome is not any unfairness in the system, but because too many patients are being hurt every day in a system that has failed to use basic safety checklists that have made injuries rare in other high-risk industries.
When the hospital industry’s own two-year pilot project to improve safety is called the Five Million Lives Campaign, we can see that the true urgency of reform lies in safety and quality.
“When the right care is delivered to the right patient at the right time, every time” is how Elizabeth A. McGlynn, a RAND Corporation researcher, defined quality care. And when we achieve that, malpractice lawsuits will no longer be the “burden” that some doctors perceive. Patrick Malone
Chevy Chase, Md., June 17, 2009
The writer is a lawyer and the author of “The Life You Save: Nine Steps to Finding the Best Medical Care — and Avoiding the Worst.”
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Another Times letter writer makes the point that we should have public report cards on hospitals and doctors that would give patients basic safety and quality information so we could make intelligent choices about who cares for us. That's an idea worth doing.
All responsible attorneys would like nothing better than to reduce the number of lawsuits that have to be filed seeking accountability on behalf of injured patients. But the way to do that is with comprehensive safety programs that reduce the number of injuries.
]]>Geoff Berg, an internist in Rhode Island, put it this way in a letter to the editor in the New York Times:
"The problem with fee-for-service is not merely that it pays providers to provide service; it pays them to create service as well. It is this almost limitless ability of doctors to create service that makes our per capita health care costs twice that of any other developed country. If physicians were salaried employees with modest incentives for productivity and outcomes, we could, in very short order, have affordable health care for all."
Electronic medical records, if properly used to communicate key information among doctors and with the patient, also could help cut wasteful and pain-inflicting treatments, as letter writer Margie Parko wrote in the Times about her mother-in-law's experiences in the last 18 months of her life.
]]>The President was quoted on that by Senator Ron Wyden in an article in the New York Times by Robert Pear.
Aggressive, high-cost medicine has never been proven to make anyone healthier or live longer. Why do the McAllen doctors order so many tests and procedures? Because they make more money from our fee-for-service system. The answer is to reorganize care so that doctor don't have a built-in conflict of interest where they prosper economically the more stuff they order. But that reorganization is easier said than done. Dr. Gawande rightly looks to models like the Mayo Clinic, where doctors are on salary. Read more about this on Dr. Bob Wachter's health care blog.
One interesting sidelight to Dr. Gawande's article is that he nails the old bug-a-boo of the medical industry: so-called "defensive medicine" in which doctors supposedly order lots and lots of tests not out of any perceived medical necessity but out of fear of being sued for malpractice. A group of McAllen surgeons tried this explanation out on Gawande, but he rightly pointed out to them that Texas has some of the strongest tort reform in the country, so he was skeptical.
He didn't mention, but might have, that other states like California, which in the 1970s made it almost impossible to sue for malpractice except for the most egregious cases, have enjoyed no medical cost savings that anyone has been able to count. Health care economists have proven that what explains disparities in medical costs is high numbers of specialists in a community and correspondingly low numbers of primary care doctors.
That Congress is just now discovering the realities of medical economics, which have been published in study after study over the last three decades, is itself pretty scary.
]]>Tamoxifen has been used for decades to treat breast cancer and, for the survivors, to prevent tumors from forming again. One of the most common side effects of tamoxifen is hot flashes, which can be controlled by SSRI (selective serotonin reuptake inhibitor) antidepressants such as Paxil and Prozac. The new study shows that this cocktail of drugs seems to account for a higher recurrence rate of breast cancer. The study followed almost 1,500 women whose average age was in the early 50s. Researchers found that women who took both tamoxifen and the SSRI antidepressants were almost twice as likely to have their breast cancer return within two years.
At the same ASCO conference, another paper was presented that found no correlation between breast cancer recurrence rate and use of antidepressants. However, authors of this second study pointed out that this study included a much smaller pool of subjects, and they join authors of the first study in recommending that other options should be considered to treat hot flashes.
A new study of women with ovarian cancer has found that women who undergo blood tests every few months to check for early signs of recurrence of the disease do not live any longer than women who wait until they feel symptoms from the cancer's return. The test is called CA125.
As reported by Andrew Pollack in the New York Times, the new study was presented at the annual meeting of the American Society of Clinical Oncology.
The reason that the CA125 test doesn't help is that some cancers are resistant to chemotherapy, so whenever treatment is started, it doesn't matter, and others are very sensitive to chemotherapy, so that they can be knocked back whether treatment is started early or a few months later. This is according to the lead author of the study, Dr. Gordon Rustin of the Mount Vernon Hospital in Middlesex, England.
Peace of mind is an important related issue. A lot of patients experience anxiety when they are waiting for the results of the periodic tests. For some, the knowledge makes them feel in control; for others, the anxiety is too much and they would prefer not to know. So getting the test becomes a very individual decision.
]]>The new guideline widens the effective time window to four and one-half hours after symptoms start. It comes from the American Heart Association/American Stroke Association and is based on European studies.
Stroke experts stress that just because there is more time now to administer this drug does not mean patients or doctors should think they can go slow. The faster treatment is begun, the more likely it is to help break up the clot and restore normal blood flow in the brain. Anyone with stroke symptoms needs to be rushed to a hospital with special expertise in stroke treatment.
]]>The compression stockings provide graduated pressure and should reduce swelling in the legs. Studies have shown that, for patients immobilized after surgery, these stockings effectively reduce formation of blood clots, which can be deadly when the clots travel up to the heart or lungs and obstruct blood flow.
However, in the new Lancet paper, scientists followed 2,500 stroke patients in Britain, Italy and Australia, and found that the use of compression stockings made no significant difference in the occurrence of DVT (deep vein thrombosis, the blood clots in the deep veins of the legs that can travel to the heart or lungs). Patients who wore the stockings actually suffered additional symptoms that include skin breaks, ulcers and blisters.
The results of the study were also presented at the European Stroke Conference on May 27 in Stockholm. Researchers believe this study conclusively shows compression stockings should not be recommended to stroke patients.
]]>It has now been documented that acetaminophen is the most common cause in the U.S. of acute liver failure, which can result in death if a liver transplant cannot be done.
The Food and Drug Administration has recognized that acetaminophen poisoning is a public health issue and has slowly taken steps to educate the public to this popular drug's dangers. In April 2009, the FDA mandated a new warning label, which will say on 500-mg products (Extra Strength Tylenol and its generic equivalents): “Liver warning: This product contains acetaminophen. Severe liver damage may occur if you take more than eight tablets in 24 hours, the maximum daily amount.” It will also warn against using it with other acetaminophen products or with alcohol use of three or more drinks a day. The FDA rejected a request from the Tylenol manufacturer McNeil to water down the warning by removing the word “severe” and adding the word “overdose,” which the agency said could lead consumers to believe they had to greatly exceed the recommended dosage before jeopardizing their livers.
This warning won't take effect until spring 2010. FDA advisors first recommended such a liver warning in 1977.
In the meantime, an FDA advisory panel will meet in late June to consider other steps intended to make it harder to accidentally cause liver failure from taking too much acetaminophen. A "working group" of advisors has recommended among other things:
• limiting the single adult dose to a maximum of 650 mg, and limiting tablet size to 325 mg (down from the current extra-strength size of 500 mg and single dose of 1000 mg);
• lowering the maximum daily dose for adults from 4000 mg to no greater than 3250 mg (and less than that for chronic alcohol users);
• restricting pediatric liquid formulations to a single mid-strength concentration;
• eliminating acetaminophen from combination products.
You can read the working group's recommendations at the FDA's web site here.
In the 1990s, Patrick Malone was one of the first attorneys in the United States to successfully sue the Tylenol manufacturer for hiding the dangers of acetaminophen from doctors and the public. Read about his case of Benedi v. McNeil here. Watch the ABC Prime Time Live segment on this subject by clicking here.
]]>Hydrocephalus involves a buildup of pressure inside the brain from lack of drainage of the cerebrospinal fluid that bathes and cushions the brain and spinal cord. Every person makes about two soda cans' worth of the fluid every day, and if it is not reabsorbed into the blood stream, pressure can build and cause damage to nerves and structures inside the brain.
Typically NPH presents first with a walking disorder -- the victims walk slowly with feet wide apart. It then progresses to urinary incontinence and loss of memory. These three issues are considered a "classic triad" for NPH.
If NPH is suspected, imaging of the brain will reveal one or more enlarged ventricles, the holes inside the brain that are filled with cerebrospinal fluid. The treatment is to put a tube into the ventricle to drain off the accumulated fluid and divert it into the abdomen. This surgically implanted shunt is reported to benefit 70 to 80 percent of patients with NPH. The manufacturer of a programmable shunt has a web site with more information: www.lifenph.com.
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