What does expensive care look like and who are the 1% of patients who use over 22% of health care expenditures?
At the opening speech of the American College of Physicians annual meeting a few weeks ago Ezekial Emmanuel, an adviser to the US Office of Management and Budget and head of the department of Medical Ethics and Health Policy at the University of Pennsylvania gave some interesting statistics. In the United States, 1% of patients at the highest level of medical spending are responsible for 22% of healthcare costs and the bottom 50% of healthcare utilizers use a little over 3%. I looked at the article, from the Agency for Healthcare Research and Quality, and found that this percentage is relatively stable over many years, and, in fact, the costs are slightly less concentrated in the upper 1% than they were in 1996. Also, and maybe more dramatically, the top 5% of patients consume about half of healthcare costs.
So, after hearing these figures, I paid really good attention to the patients I saw in the hospital, trying to see who was most likely in that top 1%. Patients in the hospital are probably going to be the people who consume the greatest amount of resources, since hospital costs are by far the largest share of US medical expenditures. In 2011, hospital costs were over $850 billion, topping doctor and clinical services at $541 billion and prescription costs at $263 billion. The breakdown of total healthcare costs is pretty interesting and can be found here, at the Center for Medicare Services (CMS.)
The patients at the hospital who use the most resources are people with chronic diseases, the old and sometimes the very old, often poor people on public insurance, either Medicare or Medicaid, and occasionally the outlier who has been extremely unfortunate or spectacularly unwise. They are often obese and many smoke cigarettes, drink excessive alcohol or use damaging illicit drugs. Frequently they have chronic pain and are on regular doses of opiates and other sedating drugs. Many are depressed. These are patients who have been in the hospital for a very long time, usually in and out of the intensive care unit, often with multiple surgical procedures or specialist driven interventions. They have long lists of medications and are likely to have experienced some sort of medical complication due to the complexity of their care.
It is very hard to care for the 1%. They have had so many tests that it takes extremely keen data management skills to make sure that all of the incidental abnormalities are followed up and that procedures that have already been done are not repeated. Their medication lists are hard to follow, and rationale for care is difficult to tease out from medical records. They are often frustrated and jaded with caregivers because they have seen so many mistakes and heard so many contradictory explanations and plans from their many specialists and rotating hospitalists. Some of them will never be well, but nobody will take the time to explain this, and even if a doctor did take the time, the patient finds it difficult to trust that they know what's going on.
The 1% have had just about everything done to them. In some cases this means that they no longer want anything medical for the rest of their lives. More often, though, they have been through hell and it doesn't seem so bad, and so they would do it again. I see this pretty often with patients on renal dialysis. Out of a total Medicare budget of over $522.8 billion dollars in 2010, $32.9 billion was spent on patients with endstage renal disease (ESRD), who made up a little over 1% of the Medicare insured population. Patients with ESRD do not have enough kidney function to survive without regular dialysis, usually 3 times weekly. For most of these patients this means several hours at a dialysis center where their blood is circulated through a series of filters which act as an artificial kidney. Fluid is removed, electrolytes are adjusted and toxins are filtered out. Sometimes medications such as antibiotics or blood cell stimulants are administered. Patients on dialysis are dependent on machines for life support, though they can walk around between sessions and do regular person things. Usually, to be on dialysis, a person has been sick a long time, and the kidneys are not the only organs that have suffered, so most patients with ESRD are at least a little bit sick all the time. Most are disabled from work, and the majority are not able to pursue an active life.
Other patients in the 1% are the old and very old, people over the age of 80, often with multiple chronic medical problems, at least one of which decompensates and lands them in the hospital. As a hospitalist, I often have the opportunity to talk to these patients or their family members about goals of care. Sometimes I find that they want a reasonable attempt to cure the problem at hand with the expectation of being able to return to home or nursing home with about the same level of function as before they got sick, and that they understand that it is also possible that an illness that is so bad that it lands them in the hospital might also be fatal or lead to an unacceptable level of disability. We then address the question of "code status", whether they would want to have chest compressions and be on a ventilator should vital functions cease, and I explain that, in a person such as they, none of this is likely to be effective in bringing them back to life. The actual percentage of success for CPR in this population is about 5%. The downside of CPR, I will explain, is that it means that they will not have a peaceful death, and often it will be painful and traumatic. It is hard to have this talk, because it makes the poor patient imagine their death, hardly the comfort I would prefer to be offering. Some patients have already thought it through, and even before the discussion is under way they tell me that they have had a good life and when their time comes they would like to be allowed to depart in peace. Some will hear the whole discussion and say "I think I'd like you to just give it a try and if it doesn't work, don't have me live forever on machines like a vegetable." This is then translated into a very simple medical order, "full code", and the patient will then get just about every medical procedure available that might even remotely lengthen their life until such time that any observer would consider that they are just being kept alive on machines like a vegetable, at which time life support is gently discontinued. The process of getting to comfort care from cardiac resuscitation can be quick, but more often involves an agonizing period in which a loved one is festooned with tubes and wires, pale, miserable, helpless and confused. "Full code" for the patient with multiple medical problems is a terrible thing.
Another 1% patient is the drug abuser or alcoholic, usually also a smoker. Some of these patients have pretty amazing stories. They have lived on the edge of the world for so long that being in the hospital is not necessarily any more dramatic than the rest of their lives. They develop blood stream infections, skin and muscle abscesses, AIDS and its complications, hepatitis C and its complications, cirrhosis of the liver with massive bellies and stick-like arms and legs. They come in to the hospital on multiple occasions, so sick we think they must die, and then recover, only to go out and do it all again. They want everything done, have no money or insurance to pay for it, and often leave against medical advice before we are even done treating them. Wow.
A smaller proportion of super healthcare utilizers have cancer, despite the fact that they lived well and are still young. They have genetic diseases such as cystic fibrosis, have organ transplants or bone marrow transplants or are babies born too early. Or they were hit by a car and developed multi-organ failure. Or they were bitten by a rodent with the plague and developed shock and had their limbs amputated. Or something else horrible happened that we could all stay up nights worrying about.
So what does it all mean and what should we do about it? Clearly a healthcare dollar buys much more happiness in the bottom 50% of Americans who make up only 3% of all healthcare spending. For these folks, their pneumonia is cured by an oral antibiotic or their broken arm is set and splinted or their head laceration is sewn up or they receive effective contraception or other preventive services which keep them on their feet, happy and functional. For the very sickest, a healthcare dollar buys close to nothing, no joy, no productivity, maybe one saline flush after the dose of antibiotic goes in.
I truly don't know what to do about it. It is not right that folks who persist in self abuse use resources over and over while the working poor can't even afford basic healthcare. But it is also not up to me to police the choices that people make about how to live their lives. It is not right that huge amounts of money are spent to minimally lengthen the lives of the very old. Most of the very old with whom I have had this conversation agree heartily on that point. It is not right that physicians continue to advise very expensive technological care for patients near the end of life, especially since research shows (at least with lung cancer) that a palliative care approach both lengthens life for those patients and improves its quality. I think that "full code" should not be the default assumption in patients for whom the likelihood of it being effective is very low. I think that it is up to us, as physicians, to figure out some way to educate our patients about this. Perhaps we need an advertising campaign to "Live well, die in peace," complete with a very accurate depiction of resuscitation versus a comfort care approach at the end of life. We need to change our payment structures so that it doesn't benefit us, as doctors or hospitals, to make patients dependent upon us. We need to have an accurate idea of costs and feel comfortable bringing them into discussions with our patients. Primary care doctors need to have the time and expertise to discuss resuscitation with patients (who know and trust them) as they age and develop chronic medical problems. We all need to take more time to think about the what these many tests and treatments we prescribe are really good for and be a little more focused about applying them. If we reduce the complexity of the care we provide, we will free up time and energy to actually sit and listen to our patients, a much neglected but often magically effective treatment strategy.
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