Dialysis from the sharp end of the needle

Price Comparison Shopping Enters the Medical Marketplace

By David L. Rosenbloom

A stent is a small, metal, cage-like tube which is used in angioplasty to widen an occluded artery. I had two such stents inserted into my renal artery six months after my kidney transplant because I had developed a stenosis, or narrowing of the artery, due to a buildup of scar tissue from the transplant. The procedure was done out-patient under a light sedative, and lasted about two hours. It’s a fairly common procedure, particularly for cardiac patients with an arterial stenosis.

My procedure was successful. Several months later I received an explanation of benefits (EOB) from Medicare outlining the hospital’s charges and the amounts approved and paid by Medicare and my secondary insurance. The difference was shocking, to say the least.  The hospital, a well-known university teaching hospital with an excellent reputation, billed Medicare $91,471 including the surgeon’s fee. The two stents, billed at $29,019 each, amounted to 64% of the total cost. Medicare allowed $5,801 for the hospital and $705 for the surgeon.  This was amazing considering that my entire transplant surgery and five days of hospitalization was billed at $212,000. Medicare allowed just under $24,000 for that much more involved surgery.

Another way of looking at this ludicrous pricing situation, over which I had no say, is to imagine that I had ordered a brand new Porsche Panamera but received a used Ford pickup instead. In reality I probably got the equivalent of Porsche stents, if there is such a thing, at a bargain-basement price. What was the “real” cost? Who knows. Hospital pricing is so opaque and Byzantine that price comparison shopping by patients is impossible. For decades, health insurers have privately negotiated reimbursement rates with hospitals and physicians, often agreeing not to reveal those numbers for competitive reasons. This practice, however, is about to change radically.

I was thinking of all this while reading an interesting New York Times article, Bringing Comparison Shopping to the Doctor’s Office. Several new companies are beginning to develop medical cost-comparison databases to help patients and employers estimate prices for the most common medical procedures like colonoscopies and other diagnostic tests. With the coming of health insurance exchanges built into the new reform legislation past earlier this year, upwards of 40 million formerly uninsured people will soon  be shopping for mandated health insurance. Coupled with many large employers seeking ways to reduce their outlays for healthcare benefits, cost-comparison firms may become a growth industry which finally introduces open competition into the healthcare market.

One such company is Castlight Health, a San Francisco-based startup founded by Dr. Giovanni Colella, former head of Relay Health, a web-based service connecting doctors and patients, and Todd Park, former co-founder of Athenahealth and now chief technology officer of Health and Human Services (HHS). Castlight has developed a way to pull data from millions of EOB forms supplied by employers seeking cost-comparison data. Safeway, the grocery chain with 200,000 employees, has signed on as Castlight’s first customer. Employers pay a fee by the employee by the month. A mobile version is being developed so employees can access the Castlight database right from the doctor’s office.  Eventually, they will offer the service to anyone via the internet. 

What makes Castlight unusual, is that it is being financed not only by private investors but also by the prestigious Cleveland Clinic. To date, Castlight has raised over $80 million. The Cleveland Clinic, headquartered in Cleveland, OH, with satellite clinics throughout Ohio, Florida, Nevada and the United Arab Emirites, would not reveal how much they have invested, but were eager to explain their interest in this new venture when I contacted them a few days ago. Spokesperson Eileen Sheil said that Cleveland Clinic “has established transparency as a high priority in recent years. We offer all in-patients 24-hour access to their medical records, which they can also retrieve from home on our web site, and we regularly share our financial and business relationships with physicians with the public.”

Recently Dr. Delos Cosgrove, chief executive of the Cleveland Clinic, was quoted in the N.Y. Times saying:

Ideally, transparency in health care pricing could lead to higher-quality, lower-cost health care, and more patient involvement in buying health care ... “Because they begin to realize that a trip to the doctor is not free, they might stay home and take the aspirin instead of getting the neurologic work-up.”

Ms. Sheil added that the Clinic wants to stay “ahead of the curve on trends” in patient-centered medicine, and remain a leader in quality healthcare in the U.S. and the world.  Currently, the Cleveland Clinic has 3.5 million patients worldwide.

Recent studies suggest that the more patients know about prices, the more money they save. Mercer, a research unit of Marsh & McLennan the internationally known business consultant, found that people on high-deductible health plans spent less when they had knowledge of the prices of doctor visits and diagnostic tests.

A point reinforced in the Times article. 

“I’m a big believer in trying to create market forces wherever you can and then let personal accountability really drive the result,” said Steven A. Burd, the chief executive of Safeway.

For instance, Safeway pays up to $1,200 for its employees’ colonoscopies, a preventative procedure to detect cancer. If employees wish to go to a doctor who charges more, they must pay the difference. According to Castlight, colonoscopies in the Bay Area, where Safeway is based, range from $500 to $3,000, and sometimes a doctor charges different rates at different hospitals.

While Castlight plans to add quality measurements to its price information, there is no universally accepted set of quality measurements in medicine. Also there are many procedures for which Castlight’s service is not applicable, like the delivery of a baby with complications or any type of extreme emergency such as a heart attack or serious injuries requiring immediate surgery. But it does seem like a sensible start to bringing more buying power into patients’ hands and has the potential to help control spiraling medical costs, which now account for 16% of our GNP, the highest in the world. 

Cost Consciousness and Patient Care: Can they be compatible?

By David L. Rosenbloom

Cost effectiveness has been a byword in the business and manufacturing worlds for many decades. And we know it can be a double-edged sword, providing economic benefits while simultaneously causing unintended societal harm.  The same may be true today in our current efforts to reform medical practice in America by lowering costs while doing no harm to patients. The manner in which we educate the next generation of doctors and patients may determine the outcome.

A case in point was recently made by a commentary in the NEJM by Dr. Molly Cooke, professor of medicine at the University of California, San Francisco, and director of the school’s Academy of Medical Educators:

It is old news that the cost of medical care in the United States is unsupportable, yet we seem unable to grapple with the issue effectively. As current ideas for health care reform have percolated through Congress, cost-control mechanisms have generally been recognized as the weak component. Our country is remarkably generative in the development of new diagnostic tests, drugs, and procedures — and remarkably undisciplined in their deployment. New diagnostic and therapeutic procedures and the broadened application of established ones account for two thirds of the growth in health care expenditures. Since the importance of this problem has been recognized for nearly 40 years, one might imagine that medical educators have attempted to incorporate cost consciousness into their teaching, but such efforts have been remarkably few, and curricula remain largely silent on the role of cost in the planning of diagnostic and treatment strategies.

Dr. Cooke points to the length of a hospital stay as another important driver of the costs.

It unfortunately becomes a high priority to prepare patients for early discharge, which often serves as a rationale for preemptively ordering tests and consultations to avoid delaying discharge. Consequently, students and residents have scarce opportunity to practice cost-effective diagnostic strategies and explain their rationale to patients and families.

Dr. Michael Whitcomb, former senior vice president for medical education at the American Association of Medical Colleges, and former editor of the journal Academic Medicine, is quoted in the New York Times as saying:

“Medical schools have done a really terrible job over the years in educating students about the system that they’re going to encounter.”  According to a recent A.A.M.C. survey, about 60 percent of 102 American and Canadian medical schools include some material on health care costs, although the time they devote to it varies widely…  A separate survey of 155 large teaching hospitals, that together sponsor more than two-thirds of accredited residency programs in the U.S., found that only 41% had made sure that all their residencies included material on health care costs.

It’s not that medical students don’t have any idea of the cost of procedures.

The NY Times continues:

“You definitely try to think about it,” said Dr. Ian Warrington, a first-year resident at Beth Israel Deaconess Medical Center in Boston… All of us are aware that a CT scan is significantly more expensive than a chest X-ray, and an M.R.I. is significantly more than a CT scan”.  But resident doctors’ heavy workloads and the need to care efficiently for very sick people make it hard for them to consider the cost of tests and treatments.

I had a recent conversation with Dr. Donald W. Larsen, chief medical officer at the USC University Hospital and the USC Norris Cancer Hospital in Los Angeles. Dr. Larsen is clearly aware of this time/benefit constraint in medical education:

“Certainly teaching medical students, residents, and attending physicians these skills are a real challenge these days given the volume of skills they must acquire in a limited period of time in a rapidly changing environment. This is compounded by regulatory restrictions on work hours and tight control by the Accreditation Council for Graduate Medical Education (ACGME) on residency training programs that don’t leave much room for creativity.

Other important topics include professionalism, ethics, quality, patient safety, and risk management. Somehow they also have to learn how to manage their medical practice, as well as prepare and pass their medical boards.

I think electronic medical records will be very helpful decision making tools in the future, not only with regard to benchmarking and best practices around clinical decisions, but also may help us make cost effective decisions. Though we have to be cautious that we don’t go too far and compromise care for the sake of saving money.

The crux of the dilemma goes to the very nature of how we as a society view our physicians and how they view their role in that society.  Dr. Cooke points out that physicians see themselves, and teach students accordingly, that doctors are advocates for each patient, “obligated to eschew all considerations other than benefit to that patient and his or her preferences.”

However, she warns that:

... we must abandon the myth of the physician as single-minded advocate for any amount of benefit for every patient. We make all kinds of choices in caring for patients; some involve denying care that patients perceive as — and that might actually be — beneficial. Given that we make value-based decisions about the deployment of other finite resources, such as our time and the use of beds in the intensive care unit, why not about costly treatments?

So where do we go from here? 

For awhile now, many in the medical field, like Dr. Donald Berwick of IHI, have been advocating that patient centered care must involve the patient in the process of diagnosing and strategizing treatment. The expanded access to detailed medical information, much of it on the internet, has transformed many patients from dependent and acquiescent to activated, informed, and sometimes insistent consumers of health care services.  And in the best instances, doctors recognize patients and caregivers who are educable, and make them an integral part of the healthcare team.

I know in my own long history with kidney disease, I have become less dependent on my doctors to make those decisions.  I am the ultimate consumer of those healthcare services and I seek to know the cost-benefit ratio, particularly if a procedure or test seems unwarranted or will do more harm than good. It is often the small things we do that alter our lives for the better. Grand plans for reform rarely work as we hope. Often the simplest changes make the biggest difference. And so it is with healthcare. Medical school education is only one part of the equation. Patient education is another. Until we do something about bring the two into the equation, costs will continue to escalate.

New study links undiagnosed hypertension to CKD

By David Rosenbloom

Hypertension, abnormally high blood pressure, is called the “silent killer” for good reason. And I know this from personal experience. In May 2002 at age 57 I was diagnosed with CKD5 and placed in a  dialysis clinic within three weeks.  Over the preceding four months, my creatinine had climbed from 1.2 to 6.0, my GFR had dropped to 10-15% and my blood pressure rose to dangerously high levels.  

I had no known history of kidney or heart disease nor was I diabetic.  My blood pressure was always normal when taken at my annual physical. I ate a healthy diet, exercised several times a week and was not overweight. Yet probably sometime in my early 50s, I developed hypertension that went undetected. I also had no idea that I had lived my entire life to that point on one functioning kidney, the other being vestigial. Ultrasound tests taken at the time of my diagnosis, determined that startling fact.

I, unfortunately, am not alone. According to a recent study by the John Hopkins School of Medicine:

As many as 8 million adults in the United States who have undiagnosed or early-stage hypertension may also have kidney disease, putting them at higher risk for what may be preventable kidney failure.

The study, published online in the journal Hypertension, found that 27.5% of those with diagnosed hypertension also had kidney disease, while 13.4% with normal blood pressure have kidney disease. I clearly was in this group even though I had no outward symptoms.

Of people with early-stage hypertension, 17.3% had kidney disease, while of those who had undiagnosed hypertension, 22% had kidney disease. The research team at Johns Hopkins used data collected from the National Health and Nutrition Examination Survey (1999-2006), looking at records from nearly 18,000 participants for whom information on blood pressure and kidney function was available. This is the first time any study has estimated the prevalence of kidney disease among people with varying degrees of hypertension. Kidney disease rates were based on creatinine levels in the blood and proteins in the urine, and were estimated using guidelines from the National Kidney Foundation (NFK).

Experts have estimated that nearly a third of Americans have hypertension and have no knowledge of it nor are unaware that their blood pressure is in the danger zone. Consequently, they may not seek testing and treatment for hypertension or for kidney disease. Concurrently, an estimated 26 million adults in the U.S. have CKD, and the number is growing as obesity and diabetes reaches epidemic proportions. The conclusion is unmistakable. Hypertension and kidney disease go hand in hand.

“There’s likely a very large group who have kidney disease and don’t know about it,” said Deidra C. Crews, the study’s leader and a nephrology instructor at the Johns Hopkins University School of Medicine. “For people who have pre-hypertension, an alarm should go off in their physicians that says maybe this person should be tested for kidney disease. And patients should know that having even pre-hypertension is a big risk factor for kidney disease, and they may need to make lifestyle changes.”

In the study, Crews pointed out that there is some disagreement in the medical community over what levels of kidney function and urine protein should be used to diagnose kidney disease. Her study uses current guidelines from the NKF. Some nephrologists believe those guidelines may be too loose and that stricter guidelines would paint a truer—if smaller—picture of the number of people who suffer from kidney disease. My own nephrologist at the USC Keck School of Medicine has told me that even in patients without hypertension, kidney function declines about 1% per year after age 50.

NKF and many other kidney support organizations have mounted public education campaigns to make people aware of the prevalence of hypertension, it’s link to kidney disease and the need for everyone to be tested at regular intervals.  Like smoking, whose detrimental effects were first highlighted by the U.S. Surgeon General’s report over 50 years ago, the link between hypertension and CKD needs to become common knowledge.  Hopefully this Johns-Hopkins study will have the same effect.

Patients’ Reviews Missing from Drug Safety Studies

By David L. Rosenbloom

I am always amazed at the inbred arrogance of the medical profession. For such a large industry, and it is an industry, to ignore its customer base is not just stupid, it’s often fatal. Unfortunately with medicine, it’s the customer who suffers the most, not the industry.

Smart, successful companies test market new products before widely introducing them to consumers. So do pharmaceutical manufacturers. They are required by federal law to perform clinical trials before gaining FDA approval to bring them to market.

But according to a study published in the NEJM by Ethan Basch, MD, an oncologist at Memorial Sloan-Kettering Cancer Center in Manhattan who specializes in treating patients with prostate cancer:

A patient wants to know about symptoms she may have from a prescription drug she is taking. Consulting the label’s “Adverse Reactions” section, she finds a wealth of data. Little does she realize that this information, largely collected during clinical trials, is based almost entirely on clinicians’ impressions of patients’ symptoms — not on patients’ own firsthand reports of their experiences with the drug.

In an interview in the New York Times, Dr. Basch says that direct reports from patients are rarely in clinical trials:

If patients’ comments are sought at all, they are usually filtered through doctors and nurses, who write their own impressions of what the patients are feeling… doctors and nurses “systematically downgrade the severity of patients’ symptoms” and sometimes miss side effects altogether. One result is “preventable adverse events” — for instance, suicidal thoughts in young people taking antidepressants, or severe constipation in people taking a drug for irritable bowel syndrome, both of which might have been detected earlier if symptoms had been systematically tracked.

Dr. Basch first became interested in under-reported adverse effects when he attended a presentation on a new cancer drug. Fatigue was not found to be much of a problem, but other doctors in the audience said their patients had suffered terribly from it while on the drug, so much so that some had quit taking it. Somehow, the study had completely missed that finding. Intrigued, he began to study people receiving chemotherapy, and to compare symptom reports by patients with those from doctors and nurses. The differences were striking. For every problem — fatigue, nausea, appetite loss, vomiting, diarrhea, constipation — patients reported it earlier and more often than did doctors and nurses.

The tendency to downgrade symptoms reflects a number of medical prejudices and practices fraught with faulty judgment. They included unscientific comparisons of patients at different stages of the same disease, or wishful thinking by doctors, who may think that a certain drug will help patients and don’t want to take them off it. Or fear of malpractice litigation if one too carefully charts a patient’s adverse reactions to a drug the doctor has prescribed. Sometimes such information is lost when doctors and patients get distracted by test results and treatment plans and forget to discuss symptoms.

Not to mention the obvious - mistakes and distortions in reporting symptoms which are compounded when one researcher collects the information, another retrieves it from the chart and enters it into the study record, and still others evaluate it. From the Times:

Patients may also tell doctors one thing and then write another in their own reports,” Dr. Basch said; most say their written accounts are closer to reality.

Medwatch, is a web-based system devised by the FDA that lets doctors and patients report problems they think are adverse reactions from drugs already on the market. From the Times:

But it’s a passive system that waits for reports instead of actively surveying patients. Many people don’t know about it, and it has failed to catch some important adverse events”, Dr. Basch said.

A better approach, he says, “would be to have large numbers of patients filling out questionnaires before and after drugs are marketed ...

If patients had been asked to report their symptoms while the drug was still being tested,” he added, problems might have been detected before it was even approved.

Gathering the patients’ information would require some additional cost during clinical trials, but not much compared with the overall cost of drug development and probably save money by heading off potentially expensive problems.

Dr. Basch reported he was surprised to find drug companies enthusiastic about his research.

From the NEJM paper:

In fact, patient self reporting as a data-collection method was recently embraced by the FDA in its “Guidance for Industry: Patient-Reported Outcome Measures Use in Medical Product Development to Support Labeling Claims,” in which “patient-reported outcomes” — a term that broadly refers to any data directly reported by patients without interpretation by someone else — are characterized as the standard method for assessing subjective phenomena that are best described by the patient, such as symptoms.

However, the scope of the FDA guidance is limited to the collection of data to support labeling “claims” (e.g., claims of efficacy or safety benefit based on comparative data); it does not address the use of patient-reported outcomes for adverse-event screening.

Not satisfied with these guidelines, Dr. Basch and his colleagues have developed an initiative to introduce patient-reported outcomes as part of a National Cancer Institute “standard component of adverse event monitoring” in NCI-sponsored trials. He strongly believes that patients are more than willing to share their experiences with adverse drug reactions, and that modern, web-based sampling technology could make that very easy to accomplish. It is what many companies and organizations already do via email surveys to clients, customers and members.

I know from personal experience about severe drug “side effects.” My biological family often reacts negatively and swiftly to prescription medications. As a dialyzor for 6+ years and now a post-kidney transplantee, I react negatively to about 30% of the drugs doctor’s prescribe for me, often within minutes. My computer-generated printout of drugs and supplements, which I present to every new doctor I visit, has a rather long list of commonly prescribed drugs to which I am allergic, like penicillin and its derivatives, and many common blood pressure meds and immunosuppressants. It often surprises them, and they invariably say in a dismissive tone, “Oh, I’ve never had a patient complain about severe reactions with this drug. After all, it’s widely used and very effective.”

Then I tell them the story of my 49-year-old brother’s Prozac-induced suicide in 1990 after being on the drug less than a week and of the large legal settlement Eli Lilly paid my sister-in-law for the wrongful-death suit she brought against them. It has a rather dramatic and sobering impact on their initial thought that I must be exaggerating about severe drug reactions. After that, they become very attentive to what I have to say.

It’s a tragic outcome of a manufacture under-reporting adverse effects in clinical trials. Prozac was the first of the modern psychotropic, wonder drugs. In most cases, it has helped people. But with a small percentage, they become suicidal, even if they have never exhibited such behavior before. My brother was such as case. Eli Lilly has since automatically informed doctor’s prescribing Prozac of the need to closely monitor patients for signs of suicidal depression in the first week to ten days of taking the drug.

Perhaps if we adopt Dr. Basch’s recommendations and really start listening to patients - accurately recording their drug reactions during those trails - everyone will benefit, and I won’t have to be on “high alert” every time I take a new drug.

Our new man in Washington, Berwick nominated to head CMS

By David L. Rosenbloom

RenalWEB and NephOnline link to news that President Obama will soon name Dr. Donald M. Berwick to head the Centers of Medicare and Medicaid Services (CMS). Dr. Berwick is a brilliant, innovative and iconoclastic scholar and medical practitioner who has challenged doctors and hospitals for years to change their old, ineffective and costly ways and provide better care at lower costs.

On word of the announcement of Dr. Berwick’s appointment, Steven D. Findlay, a health policy analyst at Consumers Union, said:

This would be a spectacular appointment. Don has been an intellectual force in health care for decades. He helped forge many ideas incorporated in the new health care law. As examples, Mr. Findlay cited provisions of the law intended to reduce readmissions to hospitals, prevent hospital-acquired infections and hold doctors and hospitals more accountable”

CMS is no stranger to dialyzors. Their cryptic, nearly unintelligible payment advisories, are near constant reminders of how poorly the system serves the patient. Yet CMS policies affect nearly a third of all Americans and the agency “spends $800 billion a year, making it the largest purchaser of health care in the country. As administrator, Dr. Berwick would spend much of his time defending the health care overhaul, writing regulations to carry it out and fielding calls from members of Congress,” says the N.Y.Times article.

The article continues:

“Dr. Berwick has denounced ‘the insanity of health care that costs too much and achieves too little.’ But at the same time, he celebrates the work of hospitals that have reduced medical errors and deaths by the systematic application of proven techniques. And he wants to disseminate the secrets of communities that provide high-quality care at low cost.

Dr. Berwick could help shield the White House from Republican charges that Mr. Obama’s policies would lead to the rationing of care or even a government takeover.

At his institute’s annual conference in December, Dr. Berwick issued this challenge to health care providers: ‘Over the next three years, reduce the total resource consumption of your health care system, no matter where you start, by 10 percent. Do that without a single instance of harm, without rationing effective care, without excluding needed services for any population you serve.’

He said he had learned from his own medical problems, which include osteoarthritis in his right knee. ‘It comes from medical error, botched surgery when I was a medical student, aggravated by years of jogging,’ he said. Doctors urged him to have a knee replacement operation several years ago, but he decided instead to have just a “steroid injection,” and the outcome has been fine, he said”.

In an interview with Pauline W. Chen, MD Dr. Berwick spoke bluntly about the need for patient-centered healthcare. He insists that shared decision making should be mandatory, with the patient and family participating daily in the design and delivery of treatment, even occasionally allowing patient preference to override evidence-based care.

“If you are interested in quality, you have to be interested in patient-centeredness. Good doctors and nurses do try mostly to focus on every patient as an individual. But we have built a system around clinicians that makes it impossible to customize care the way it needs to be. We don’t have a standard of services or processes that are comfortable for patients. We have built a technocratic castle, and when people come into it, they are intimidated.

Patients keep having to repeat their name because the system has no memory. We dress them in silly-looking gowns. We give them the food we make instead of the food they want. We don’t let them look into their medical records unless they have permission. Health care keeps telling patients the rules instead of asking patients about their individual needs. What is said is, “This is how we do things here,” not “How would you like things done?”

People get accustomed to this. They are trained to be passive, and passivity is not a good idea. Studies have shown that people who are trained to be proactive do better and feel stronger. They have more pride and trust in their own capabilities. When you make someone helpless, in a funny way you make them sicker, even if all you cared about was just the body”.

On the question of patient noncompliance nonaccommodation, Dr. Berwick’s position should be music to our ears:

“I think “noncompliance” is a control word, a power word, and we need a slightly different one. “Compliance” means I order and you either do it or not; you obey. Patients live in their bodies and may know more than the person who prescribes or does their procedure. They may know better about what is going on in their body and about the optimization of their own life. I think people who aren’t taking their own medicine are telling us valuable information about their medications and their life, and we need to listen to them.

When you are in a position of having to deny and exclude patients, it is draining on the spirit. I actually think the mode I am counseling would be more satisfying or joyous for caregivers. Not all of the time or always, but it would be a better place to be. You would be putting yourself at more of a level with the patient, as more of a peer. And you wouldn’t have to carry on as if you were mythical.

Medicine is imperfect and doctors know that. … It stuns me that people don’t know what medicine they are taking. Know the name of your medicine and what it does to you. If you are getting a procedure done, know the procedure. Medicine is not nuclear physics. Most adults and kids can basically understand. There can be uncertainty in medicine, but if there’s mystery, something is wrong. … From research we know that patients who write down questions do better. Bring your digital recorder into the meeting so you can listen to the conversation several times after. Bring a companion along to be your sentinel, your advisor.

In the end, if you are being cared for by a doctor or nurse who doesn’t give you what you feel is choice or control, find someone else”.

How refreshing and hopeful it is to hear a medical professional talk like an intelligent, caring human instead of an automaton. Like us, Dr. Berwick has been there and understands what if feels like to be a patient with little or no control over treatment decisions. You can image the influence he will have on CMS policies and regulations, which too often reinforce outmoded, bad practices in the name of cost control and protecting the status quo. His appointment to the CMS would give us a true champion for home dialysis preference and its financial support.

But first he must be confirmed by the U.S. Senate, a body not known for speed, objectivity or fairness. I urge everyone to contact their Senators today and voice unqualified support for his confirmation to head the CMS. It could be a game changer.

Note: Biography of Dr. Berwick on the IHI web site

Why patients can’t seem to follow doctor’s instructions

By David L. Rosenbloom

Patient compliance with medically prescribed drug regimens is, and always has been, a major factor in how effective physicians are in treating disease. Compliance has been monitored as far back as the time of Hippocrates. When the effect and dosages of various potions were recorded, so were notations of when and if the patients had taken them or not. Yet over two millennium of recorded medical history, compliance has continued to be low.

What the studies and anecdotal evidence show
According to a 2003 report from the World Health Organization, “Adherence to long-term therapy for chronic illness in developed countries averages 50%. In developing countries, the rates are even lower.”

A 2005 report in the New England Journal of Medicine (NEJM) Adherence to Medication states that physicians have difficulty recognizing patient non-compliance and when they take measures to improve patient behavior, the results have been mixed. “Simple dosing (one pill, once daily) helps to maximize adherence, particularly when combined with frequent reinforcing visits, despite the fact that 10 - 40% of patients taking these simple regimens continue to have imperfect dosing.

The same NEJM article points out that only about 1/3 of patients come close to perfect adherence. Even in controlled clinical drug trials, average adherence rates of 43-78% are reported. Poor adherence accounts for worsening of disease, death and increased healthcare costs. “Of all the medication-related hospital admissions in the United States, 33-69% are due to poor medication adherence, with a resultant cost of approximately $100 billion a year.”

Why are these compliance numbers so low, even in today’s environment of highly effective drugs with proven success records? Patient attitude is to blame. Most patients are passive when it comes to their own healthcare treatment. They generally want to please their doctors, who are normally viewed as experts and authority figures. So they tell the doctors what they believe their doctors want to hear, i.e. “Yes. I’ve taken my medicines as directed.”

When patients are questioned about why they aren’t compliant, the NEJM article lists the following excuses: “forgetfulness (30%), other priorities (16%), decision to omit doses (11%), lack of information (9%), and emotional factors (7%); 27% of the respondents did not provide a reason…”

What’s the answer?
I think is has largely to do with a failure to include the patient in the treatment process. I know this from 8+ years of my own dealing with kidney disease. The more I’m involved, the better my doctors educate me, the healthier I am. This is not pie-in-the-sky philosophy. Anecdotal evidence other than mine shows this to be correct. Patient passivity leads to non-compliance, non-adherence, or what many of us on the patient side prefer to call non-accommodation.

In the kidney dialysis world, we call it “learned helplessness.” If you are unfortunate to have kidney failure, in most cases, your doctor or nephrologist will automatically place you in a clinic where you will receive inadequate treatment – three, 3-4 hour treatments of dialysis a week. Your only responsibility is to show up, take your meds and follow an impossibly restrictive diet. The medical staff will do the rest per the doctor’s instructions. Unfortunately, many people who are placed on this in-clinic regimen, will not improve nor survive very long.

Perception and education
Those of us who have taken back control of our disease treatment, have escaped from this outmoded dialysis regimen and switched to more frequent modalities, most of which we do at home in familiar surroundings with the aid of loved ones as caregivers. Many of us have done it alone. The technology is available. The problem is that most kidney patients are not educated about the choices available to them.

Both articles I have quoted above note this phenomenon. The WHO reports states that “practitioners must have access to specific training in adherence management, and the systems in which they work must design and support delivery systems that respect this objective. … For the effective provision of care for chronic conditions, it is necessary that the patient, the family and the community who supports him or her all play an active role.”

So where do we start to correct this imbalance. I think it’s with the perception of the roles that patient and healthcare professional play in the treatment. We can start by eliminating the medical terms “compliance” and “adherence.”

“Both terms are imperfect and uninformative,“ states the NEJM article. I wholeheartedly agree. Compliance and adherence are so one-sided, i.e. “you will do as I wish - no questions, no contradictions. Just be a good, little patient and do as Doctor says.” This leads to patients being passive, uninformed and intimidated. It places the entire blame for not understanding or not following orders on the patient, who is most likely lost in a maze of high technology and arcane medical terminology.

Accommodation
Accommodation on the other hand implies an action I do willingly, on my own initiative. I've always felt that with kidney failure, our brain has to take over the management functions our kidneys did naturally. I realize this is a very intellectual view of a life and death matter, but it is what must happen if you want to survive and regain control of your life. You must “think” about things that your kidneys no longer do, like regulating and eliminating excess fluids, taking supplements to replace natural hormones produced in working kidneys, and avoiding certain “bad” foods which will significantly worsen your health. You must learn what dialysis can and cannot do for you, and then begin to accommodate your lifestyle to those needs.

It’s not rocket science, it’s common sense that’s been honed by education. And this is where the physician and the medical staff must play a larger role. The kidney patient, or for that matter any patient with a chronic condition, must be told the basic facts up front, at the very beginning of treatment. If the patient is incapable or too ill to understand, then the spouse, family or caregiver must become the patient’s surrogate. And at each important juncture in the process of treatment – from diagnosis to dialysis and hopefully transplant, the patient and the caregiver must be a critical part of the team. They must understanding the procedures used, the drugs proscribed, and results of tests. It will take more time and more effort than we have been willing to employ. But it will result in better outcomes, a goal we all seek.

New studies show less blood pressure medication safer than more

By David L. Rosenbloom

There is an old adage that goes: "If something is good, than a whole lot more of it is better." An article in today's New York Times once again proves the adage false (Diabetes Heart Treatments May Cause Harm By Gina Kolata, March 14, 2010).

Aggressive treatment strategies by doctors attempting to help people with Type 2 diabetes don't necessarily work. In fact they can endanger them further. Studies, released yesterday at the American College of Cardiology meeting and being published online by the New England Journal of Medicine, indicate that taking additional drugs to lower blood pressure below 130 systolic actually raised the risk of stroke, heart attacks and death by 50%. Patients taking an average of 3.4 BP drugs were likely to suffer severe side effects like high potassium and dangerously lower BP when compared to those taking an average of 2 BP drugs.

This brings into question national blood pressure guidelines which recommend a systolic pressure of 130 or lower. The studies found that those with lower BP were worse off than people whose BP was in the 130-140 range.

People with diabetes also tend to have low levels of good cholesterol (HDLs) and high levels of triglycerides, giving them a higher risk of heart disease. The studies found that taking a class of drugs called fibrates, in addition to statins to improve cholesterol levels, did not help.

High BP appears to be the cause of my kidney loss in 2002. I am not diabetic. Yet in my experience in order to control my BP more effectively I needed fewer rather than more BP medications. In over a year of experimenting with many BP drugs (some of which had very adverse side effects), my former nephrologist could not control my BP levels. I finally took matters into my own hands and saw a blood pressure specialist who correctly prescribed two medications and proper doses to quickly bring my BP into the 140-145 range. Since my kidney transplant in 2008, I have been on low doses of 2 BP drugs and my BP at rest averages 135-125 systolic / 75-65 diastolic.

As I have found, drugs by themselves are only part of the answer. Good diet, regular exercise and a positive mental attitude that helps reduce stress, are major components toward better health.