33. Still, people will make incredibly smart decisions when they understand the true risks and choices.

Dr. Garrison Bliss, Founder of the Direct Primary Care movement

This is part of a series of essays on the Health Rosetta’s Principles.

There has been a debate in medical circles for centuries about the role of the patient in decision making. Doctors are, after all, highly educated, scientifically certified and impeccably ethical humans (at least we start that way). We are professionals who sacrifice ourselves to serve the patients who rely on and entrust their lives to us daily. Who better to make the tough decisions, the life and death calls? I remember myself the heart-wrenching decisions about when to charge ahead and when to declare the situation hopeless. I remember getting out of bed at midnight to admit a sick patient to the hospital, even when I was exhausted and the next workday would be hard to complete – but I would do it and feel great about myself and my profession. All of us who practice medicine can remember these moments of selflessness and sometimes even bravery when our best instincts came to the fore and both we and our patients benefited. However, these moments in our current health care world are few and far between. Doctors are mostly employed, serve in huge call pools and rarely if ever come in to the hospital since hospitalists are doing that work in shifts around the clock. Most of us are what one of my partners used to call “expensive potato pickers” being paid by the piece to do the bidding of an insurance company, not a patient.

Today I am here to make the case for patients as the final arbiters of their care, something I believe to be the last best chance for a healthcare system with a potentially disastrous systemic illness.

Before I talk about why patients should be making the decisions, let me list the forces at play in medical decision making NOW:
1) Doctors are paid to DO something. If you do nothing, then that is what you are paid – nothing. Likewise, if you cure something you are paid nothing. If you reduce the cost of healthcare without any loss of benefit to the patient, you are paid nothing. So when the right choice is to do nothing (which is the case most of the time in my experience), the doctor loses (and the patient wins) when nothing is done.
2) Medical care looks more THOROUGH when something expensive is done. When patients comes home from a visit to the emergency room for chest pain and they say they had a CAT scan and a coronary arteriogram, their friends will be impressed with the rapid delivery of definitive care – even if everything was normal and a clinician who knows how to take a history and do an exam would have known in two minutes that the patient had sore rib joints, not any serious problem requiring any workup.
3) Patients don’t complain about the cost and invasiveness of medical care because it is “covered” and they have paid a lot for their insurance, so they LIKE to use it for expensive things, particularly if they have no real information about the risks they are taking at the same time.
4) If we do a large number of studies, then the probability of a definitive diagnosis goes up, at the same time that the number of false positives and red herrings go up. Every CAT scan includes a very real possibility of turning up a nodule or cyst in the lung, the adrenal gland, the kidney or the liver which includes a tiny possibility of malignancy. To be SURE that this isn’t cancer, one must launch a series of at least 2-3 CAT scans over a 12-18 month period to confirm that the nodule or cystic area is not growing (see UpToDate – Serial CT Frequency). This also means that every patient with such findings – up to 50% of some series of CT scans of the chest - has to live with the possibility of cancer for 18 months before they are released from this concern. They also have to take the radiation risk of CT scanning each time. In a study of smokers at risk for lung cancer only 1% of those with nodules actually had a malignancy. Incremental studies in which the most likely diagnosis is investigated first, then other diagnoses in the order of probability dramatically reduce both cost and patient trauma, but also stretch out the timeline to definitive diagnosis – something that many Americans dislike when they are spending someone else’s money, but would care about if it were theirs.
5) The vast majority of doctors are currently on the payroll of large multispecialty clinics and hospitals, and those institutions need to leverage front line primary and ER care to maximally utilize the inpatient beds, imaging, ICUs, surgery suites, endoscopy services and subspecialty care services they provide. Sending patients home is a costly decision and putting them in the hospital or under the care of an expensive specialist for “observation” is a “prudent” decision. When it turns out that the patient didn’t have any of the afflictions that led to their admission, then they are told with glee by the hospitalist and specialists that “everything is just fine” as if the reason it is fine has something to do with them. Since the patient isn’t paying the bill, the extra $50,000 charge is just an insurance benefit.
6) Insurance companies benefit from the high cost of healthcare. Because of the current regulations surrounding health insurance, your insurance company gets to keep a percentage of the premium. When costs go up and premiums go up, their bottom line goes up. Do not count on your insurance company to help reduce your cost of care or the number of unnecessary tests you receive.
7) Patients do not want to second guess their doctors. Trust is a way of passing responsibility to someone else and feeling secure and safe, whether or not you are actually safe. Trusting your doctor is like trusting your auto mechanic or your broker – all of these people are selling you something you may or may not need – and they are better off when you buy what they are selling, but you may be worse off. This is where Ronald Reagan was right when he quoted a Russian proverb: “Trust but verify” is the only reasonable approach given all of the incentives mentioned above.

So why would it be smart to have patients take a far more active role in medical decision making than they do?

1) The patients are the only ones who can evaluate their unique perspective. This encompasses their hopes, fears, desires, financial status, health concerns, phobias, life experiences and resources. Patients may not have a perfect understanding of these issues, but their decision process will include all of these nonmedical forces and physician decisions will not.
2) Individual consumers have proven that they can understand highly technical purchases by getting good advice that is relevant to them. In real marketplaces, consumers buy automobiles, computers, homes, utility services and an astounding range of goods and services without any personal experience or technical training simply by making use of services like Consumer Reports, Yelp reviews, social media and government sponsored testing (like crash tests). They rely more on social reporting than technical knowhow, thus forcing the providers of these goods and services to improve their price, service and ease of use (all of which are impressively hard to find in healthcare).
3) As patients get more involved in decision making, the kind of information available to them will change from the contracts they sign before their surgery (designed to protect the physicians and institutions, not the patients) to a presentation of pros and cons in a language they understand. For instance, right now when your doctor starts you on a statin drug for your high cholesterol, you will likely be told that this will reduce your chance of dying from a heart attack or a stroke. However, the doctor who tells you that is unlikely to convey that 1 person in 104 will succeed in preventing a heart attack, 1 in 154 will prevent a stroke and none will have their life saved by taking this drug for 5 years. At the same time 1 in 100 will develop diabetes and 1 in 10 will have muscle damage (see www.thennt.com).
4) When patients make truly informed choices, including their real risks and benefits, they are far more accepting of the negative consequences of these decisions. Every doctor who wants to avoid being sued should be delighted that their patient has made an independent decision to proceed based upon their own information sources, personal needs and budget. When patients make decisions, they will make mistakes but these will be their own mistakes. Doctors will always have input and clout, but patients will be happier with their own decisions than with ours if problems, side effects and complications arise.
5) Although putting patients in charge of decision making will be imperfect, it will not involve the kind of systematic, unintentional, expensive, dangerous and unprofessional decisions that are baked in to the current healthcare system by unrelenting and nearly irresistible incentives that currently run our world and have become the “standard of care” (See here)

6) If patients are making the decisions, then doctors will have to satisfy the patients’ needs before they consider the needs of their insurance company, employer or government. This is a discipline we in health care need to perfect, not only because the patients will be better off, but also because we will once again be able to take pride in our work. The level of physician dissatisfaction is at an all-time high despite our enormous incomes. I take that as evidence that we have been drinking the wrong Kool-Aid for a long time. We blame the insurers and government for ruining our profession, but it is we who are to blame for allowing our decisions to be corrupted. We sign the contracts and we live by the rules of our financial entanglements.

So the next time you have a tough decision to make as a patient, I encourage you to make it clear to your physician that no decision will be made until you know what you need to know. Ask the tough questions like: How many of these operations have you done and what are your complication rates? How many people need to take this drug to get a benefit and how many need to take it to get a serious side effect? Are there other less expensive and less dangerous ways to do this testing that might still arrive at the right diagnosis and treatment? What is the actual risk of doing nothing here? How much will this cost me and my insurance company – and why is it that expensive? It also will not be enough to question your physician. You also will need to look for information from those in the healthcare system who don’t benefit from the high cost of care, like your primary care physician if you have the luxury of independent primary care. Unless the consumers of healthcare bring their common sense, curiosity and clout to healthcare, there is no hope for better care and better outcomes in the future – just more of the same.

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