Lack of Care Coordination Leads to Patient Frustration and Poor Care

This is the third post in a series on care coordination and the importance of the electronic medical record to effect that coordination.

Medical images such as CT scans, MRI and pathology specimens are largely all digitized today so they can be transmitted to any location in an instant. This means that the most experienced physician at a distant institution can be called upon to review, say, a mammogram that has raised questions for the initial local reviewers or for a pathology specimen which is of an unusual type. It also means that when a patient goes for a specialty visit, his records could go simply and instantly and be available for the specialist(s.) This obviously will save time and improve patient care at limited increased cost. But it is largely not what happens today. Here is an example of what actually happens now.

A gentleman, I will call him Otto, who lives in a remote area in northern Pennsylvania developed a chronic cough. He went to his primary care physician, who diagnosed bronchitis and gave him a prescription for an antibiotic. But the doctor was clearly concerned and told Otto to “come back in two weeks if the cough is not gone.” Two weeks later, the patient returned unchanged. He was sent to the closest hospital, about an hour away, for a CT scan of his lungs. The result was not good; it looked like lung cancer. To definitively confirm the diagnosis he was told to come back in four weeks [!] for a biopsy to be done by inserting a needle into his chest. Why four weeks? Because the specialist at that rural hospital only did these biopsies every other Friday and he was booked up until a month later. So Otto had to be “patient” and came back as scheduled. The biopsy, sent to another hospital a hundred miles away for review, confirmed lung cancer. Now he was referred to a surgical specialist in yet another distant city, an academic medical center. That took a few weeks to arrange and, when he met the doctor, he was told that to make a good plan for treatment it would be necessary to get a PET scan. “OK,” he said, and it was arranged for two weeks later – the PET center just down the hall being booked up until then. So he drove home and then back two weeks later. Once the scan was done, a call came from the surgeon’s office that his return appointment had to be postponed for a month since the surgeon would be out of town. His wife, protesting that that was too long to wait, arranged for a visit to be “fit in” in two weeks rather than four.

By chance we happened to visit them that day and heard his story. I called my former University of Maryland Greenebaum Cancer Center colleagues and was told that he could be seen concurrently by a team of surgeon, radiation oncologist, medical oncologist and nurse practioneer in just three days time. But he would need to bring his medical record, his CT scan, the PET scan and the pathology report. So he had to call and then drive to each of the hospitals and pick up the materials. What he picked up were not pictures or films but CDs of his CT and PET scans and his pathology report; in other words they were already in digital format. Too bad these hospitals were not yet capable of just sending them via the Internet to the cancer center in the third city. This is supposed to be a story about the problems of getting information from one physician or hospital to another, but you will have also realized that it was about remarkably less than good care for him – waiting weeks to get the biopsy, more weeks to get the PET scan and then the absurdity of being told he could not be seen by the surgeon for another four weeks. What Otto needed was a well-coordinated, team-based approach to care, which he eventually got – but which he certainly should have gotten long before. This happens all too often in American medicine today.

This is the typical way most patients get treated for cancer (and most other chronic illnesses.) Go to one doctor and then once he or she is done with his/her recommendation, get shunted off to the next physician, and then the next, etc. The patient may be sent to another physician for a “second opinion” but never do the doctors actually sit down together and talk through the issues. When a team jointly discusses the patient’s situation, jointly listens to the patient’s (and family’s) needs and then jointly offers a plan, you can bet that the plan will be far superior – and there is not second guessing later. And as treatment progresses, the team can monitor progress and make course corrections as necessary. The multidisciplinary care coordination approach is not just better, it is far superior. If you develop a chronic illness and your doctor wants to refer you to a specialist, insist on a team-based approach.

Sharing information is a critical element of this approach. Today hospitals (and doctors) do not share medical information among themselves readily, such as when a patient is discharged from one hospital but then ends up in the emergency room of another hospital days or weeks later. Similarly, if a patient has a test at one hospital but then is referred to another for a procedure, it is nearly impossible, as we have seen in the story above, to electronically send that data from hospital to hospital. Instead, the patient usually has to act like “Federal Express” and pick up the information and hand deliver it to the other location, just like Otto. Not a good arrangement – it takes time and it only adds to the patent’s sense of anxiety when the systems should be working to reduce patient angst. Once the electronic medical record is available on a universal basis this difficulty should be abated. Meanwhile hospitals that determine how to share information now will find that they are benefiting patients and in the end benefiting their institution. They will be recognized as providing better care and be rewarded with patient referrals.
But this story raises the question as to why with the information in digital format and the Internet ubiquitous that records like Otto’s cannot readily be transmitted today?

Mesothelioma – A Poorly Understood Cancer

Today is national mesothelioma awareness day which is fitting because so few know what mesothelioma is or its impact on its victims. Mesotheliomas are rare tumors caused predominantly by exposure to asbestos. This cancer is hard to diagnose early and harder still to treat effectively but there are advances coming and multi-disciplinary care along with good palliative care can markedly improve overall treatment.

They mostly occur on the lung lining (pleura) but can occasionally develop on the heart lining (pericardium) or elsewhere. Although the latency period from exposure to diagnosis is usually very long, often 50 years or more, once symptoms occur, the disease is often aggressive and rapidly fatal. Many people were exposed to asbestos either at work or from home exposure to a worker, but only a small minority develops the disease. The type and quantity of exposure along with some genetic predisposing factors and possibly a co-carcinogen in the form of the simian virus 40 (SV 40 was found in polio vaccines in the 1950s and 1960s because the vaccines were manufactured in monkey cells that harbored the virus) are important. Once inhaled, asbestos fibers are not removed by the lung clearance mechanisms and some may make their way to the pleura where they can slowly lead to cancer development. (It should be noted that asbestos also predisposes to lung cancer and in combination with smoking the incidence of lung cancer rises substantially.)

Mesothelioma lies dormant for years and symptoms begin only when the disease has progressed substantially. Most early symptoms are very nonspecific such as chest pain or shortness of breath. The symptoms are often related to the development of a pleural effusion (fluid between the chest wall and the pleural lining of the lung), itself a sign that the disease has progressed. There are no good early diagnostic tests. Chest X-rays and CT scans are used but by the time the cancer is visible, it is often far progressed.

Unfortunately, treatment of mesothelioma is at best disappointing. Most individuals die within a short time after diagnosis. Surgery alone has a limited role because the disease has too often progressed for surgery to be useful but as noted below it is important to “debulk” the tumor before beginning drug therapy. Radiation therapy alone as well has limited value because of the spread of disease but has a role in local control. A more systemic approach is generally needed with chemotherapy but no drug or drug combination has been found to have truly major effects. That said, the combination of cisplatin and pemetrexed has been found to give an objective response in nearly 50% of patients, a doubling of the best response rates seen previously with a single drug. Responding patients live longer and have an improved quality of life despite the temporary side effects of the drugs. Other combinations are being tested continuously and there is reason to hope for further improvements. The use of genomic analyses and from that a more targeted drug approach may well be developed in the coming years. Since it has been shown that reducing the bulk of the tumor improves survival, most treatment today combines surgery to remove as much tumor as possible followed by radiation to further eradicate the tumor locally and chemotherapy for the disease beyond their reach.

An important element in care is to be treated by a multi-disciplinary team. Look for it and accept no substitutes. For example, at the University of Maryland Greenebaum Cancer Center, a patient with suspected or known mesothelioma is seen concurrently by a thoracic surgeon, a radiation oncologist, a medical oncologist and a nurse practioneer. After examining the patient and reviewing all of the laboratory and radiographic tests, the team presents their combined recommended plan of care, taking into account the patient’s preferences and family situation. It is definitely better care and I recommend that anyone with a chronic illness, not just cancer, seek out care in a team based environment, in concert with your primary care physician as the quarterback.

All patients can benefit from a good program of supportive or palliative care, begun at the time of diagnosis. Support groups, attention to pain management, assistance in finding financial and insurance assistance and psychosocial assistance to both patient and family can markedly improve the quality of life. Complementary medicine approaches can be very helpful as well such as acupuncture or relaxation exercises to help reduce the sense of breathlessness that can accompany mesothelioma progression.

In sum, mesothelioma is a disease that is difficult to diagnose early and once symptoms occur is difficult to treat effectively. Nevertheless, there is a lot of research underway looking at prevention, early diagnosis and improved methods of treatment along with maximizing supportive care. So there is real reason to be upbeat about the future. In the meantime, there are groups that offer education and support including Mesothelioma Resource Online (sponsored by a law firm) and sites such as that of the Mayo Clinic that have good overviews. And treatment centers that use the multi-disciplinary team approach can offer superior care.

Taking 23 Drugs From 4 Different Doctors – Lousy But Expensive Care

Lack of Care Coordination of Chronic Illnesses Leads to Excess Prescriptions, Suboptimal Care and High Expenses

Henry is a 69-year-old living alone in a small town about 60 miles from the nearest metropolitan area. He has healthcare coverage via Medicare, Medigap, and Medicare Part D. He had recently been discharged from the hospital after an ICU stay for a urinary tract infection and called to ask for some advice. He was taking twenty-three -- yes, 23 -- different prescription drugs; some once, some twice and some three times per day along with one by shot monthly. He was not certain why many of them had been prescribed and stated that despite them he did not feel well. Here is a partial list: two for heart failure (he did not know that he had heart failure!,) two for diabetes, three for high blood pressure, one to lower his cholesterol, a monthly shot of testosterone for impotence, one to shrink his prostate and one for depression.

I asked him who his primary care physician was and learned that he did not have one but rather went to four different doctors, each of whom treated different issues and none of whom shared all of his information and none of whom used electronic medial records. Whenever one of them checked his blood pressure, it would be elevated, so that doctor would either add a drug or increase the dosage. He told me that when he went to the local drug store and checked his blood pressure, it was always normal.

Henry’s story represents much of what is not working in the delivery of medical care today. He has four complex, chronic illnesses – heart failure, diabetes, hypertension and depression. These all require careful attention and care coordination, preferably by a single primary care physician who knows the patient’s home and social setting as well as his direct medical issues. The blood pressure medication story is representative. He was getting many too many drugs that he did not need and had become impotent as a result. Rather than looking for the cause, one of the doctors had given another drug [testosterone] that probably had no value but was likely enlarging his prostate. As a result he had developed an infection that had almost killed him. And all these drugs were expensive, both to him and to his Medicare Part D insurance plan.

Heart failure and diabetes together consume more than 50% of our healthcare dollars and here is a person whose care is not being adequately monitored; rather he is getting one drug after another without attention to what else is going on. This lack of care coordination is a prime reason why the costs are so high yet quality so low.

My first suggestion was that Henry needed a primary care physician, one to call his own. He found one who had just started his practice, had the time and inclination to coordinate his care and had installed an electronic medical record system. A few months later Henry called and told me that he was now taking just seven medicines and felt much better!

Henry still has four serious chronic conditions. But with a single physician serving as orchestrator rather than just intervener, one who uses an electronic medical record and who actually pays attention to Henry’s medical plus social and home life, Henry has better quality medical care, he has a much higher quality of life, he is spending less of his money and much less of Medicare, Medigap and Medicare Part D’s money. In short good care coordination is a win-win for all concerned.

And yet, care coordination is not appreciated for its importance by most physicians, insurers nor patients. Why is that?

Complex, Chronic Illnesses Last a Lifetime and Consume 70% of the Healthcare Dollar

Medical care is organized to treat acute conditions but the need today is to prevent, diagnose and treat chronic illnesses. Unfortunately, we are sorely lacking in a good chronic care management system. this will be the first in a series of six posts on this issue.

Our medical care system has developed over decades and even centuries around diagnosing and treating acute illnesses such as pneumonia, a gall bladder attack or appendicitis. The internist gives an antibiotic for the pneumonia and the patient gets better. The surgeon cuts out the gall bladder or the appendix and the patient is cured. One patient; one doctor. But as the population ages, more and more individuals are developing what I will call complex, chronic diseases like heart failure, diabetes, chronic lung disease or cancer. These are diseases that once developed usually remain with the individual for life. These patients with chronic illnesses need a different approach to care. They need long term care, not episodic care. They need a multi-disciplinary, team-based approach where one physician serves as the orchestrater or quarterback and manages the myriad physician specialists and the other caregivers along with all of the tests and procedures to allow for a unified, coordinated care management approach. Not only are these diseases likely to last a lifetime, they are difficult to manage, have an adverse impact of both quality of life and mortality, and they are usually quite expensive to treat. Today 70% of our medical care expenditures go toward their treatment. As I will describe in detail later, it will take a new approach to organizing the care of these patients to both improve care and reduce the costs and this will require high quality health information technology.

However, it is valuable to first understand the implications of chronic disease. Most of us are just not aware that their incidence is rising - and rapidly. The Milken Institute (http://bit.ly/lGHFqP ) quantified some of these issues in a research report a few years ago. They evaluated cancer, diabetes [presumably type 2], hypertension, stroke, heart disease, pulmonary conditions and mental disorders. Here are some of the key findings:

• “More than 109 million Americans report having at least one of the seven diseases, for a total of 162 million cases.

• The total impact of these diseases on the economy is $1.3 trillion annually.

• Of this amount, lost productivity totals $1.1 trillion per year, while another $277 billion is spent annually on treatment.

• On our current path, in 2023 we project a 42 percent increase in cases of the seven chronic diseases.

• $4.2 trillion in treatment costs and lost economic output.

• Under a more optimistic scenario, assuming modest improvements in preventing and treating disease, we find that in 2023 we could avoid 40 million cases of chronic disease.

• We could reduce the economic impact of disease by 27 percent, or $1.1 trillion annually; we could increase the nation's GDP by $905 billion linked to productivity gains; we could also decrease treatment costs by $218 billion per year.

• Lower obesity rates alone could produce productivity gains of $254 billion and avoid $60 billion in treatment expenditures per year.”

To me the most telling and important finding is that “each has been linked to behavioral and/or environmental risk factors that broad-based prevention programs could address.” Restated, we as individuals need to take responsibility for our own health. Not every chronic illness is preventable, but most are. It is up to us to eat a nutritious diet in moderation, exercise our bodies, seek ways to reduce chronic stress and avoid tobacco. These four steps will make a huge difference in our health and our lives. Adding in dental hygiene, avoiding sexually transmitted diseases, using seat belts and not drinking and driving will further prevent many illnesses. Many do not appreciate either that following a more appropriate lifestyle will actually slow the normal aging process that ultimately leads to many of these chronic illnesses.

Meanwhile, when chronic illness does strike, it is imperative to have a single care provider take responsibility for care coordination. Someone to not only recommend tests, procedures, images and specialist visits but who will actively ensure that each provider is properly attuned to the patient’s needs and that all of the information is collected and aggregated in a meaningful manner. When this is done the quality of care rises markedly, many fewer adverse events occur, the patient is more satisfied and the costs of care are dramatically reduced. In most cases, a primary care physician is the appropriate one to coordinate care although sometimes a specialist is better equipped for this role (e.g., a very complex cancer treatment plan). To be effective, the PCP or specialist needs to have not only the willingness and interest but also the time available to actually do the care coordination – time that is not available for most PCPs today. This coupled with limited digitized health information leads to today’s inadequate care of many individuals with chronic illnesses. In future posts I will describe today’s problems with lack of care coordination and how it can be corrected.

I wonder what others think abut why the problem of chronic illnesses and the need for care coordination is just not well recognized?