Essay: A Non-Capitalist Approach to Biomedical Consent

Ask anybody about bioethics in the old days, like forty years ago, and they’ll talk all about autonomy and consent. It was all about how people didn’t have to do what you thought was good for them and how you couldn’t touch patients, even to help them, without it being some kind of battery or something. Everybody talked about all these famous examples where people were treated without wanting to, but most people only go to the doctor when they want and need to get treated. Most people these days only refuse treatment because they can’t afford it.

I’m sure a lot of them can’t afford the treatment but also don’t need it. It’s hard to argue with a doctor about that, though. If you want to feel better, stay healthy, live longer, or whatever; you’re going to listen to the doctor. You are paying the doctor to know more about it than you do. And the doctor may or may not be making money off every service you buy. It’d be good to know who makes money off what, wouldn’t it? It would also be good to know in advance exactly what everything would cost. It would be even better to be able to prepare costs.

In the early days of bioethics, it wasn’t all about costs, because most people could afford their healthcare bills. Money was a concern, of course, but people didn’t panic from fear that their life savings would be wiped out anytime they got sick. It wasn’t at the front of everyone’s mind, so when someone refused treatment, it was because they didn’t want to live longer, didn’t think the treatment worked, or something like that.

But now it’s all about costs. Can a doctor ethically prescribe you treatment knowing you can’t afford it? Can a doctor ethically not tell you about treatments you can’t afford? Should doctors help patients set up Go Fund Me accounts? How can anyone just stand by and let people die because they can’t afford insulin?

In the past, we didn’t notice how much autonomy and consent were tangled up in financial concerns. Most patients didn’t know doctors received so much money from industry. Most patients trusted their doctors, hospitals, and so on to have their best interests in mind, not to be focused on profit front and center. But things have changed, and bioethics can’t afford to have many debates that don’t deal with patients’ ability to access needed care.

So, if you are dealing with public health ethics and planning for pandemics, you might want to consider how many patients will walk around shedding viruses simply because they can’t pay for a visit to the hospital. And if people are forced into quarantine at hospitals, you might want to consider who will get the bill for that. It’s the same with vaccines. At least some people are opposed to vaccines because they think, right or wrong, that they are just being made to create more profit for pharmacy companies, clinics, and doctors. It’s just another way, they think, to get in people’s pockets.

I’m not saying that no one writing in bioethics is dealing with these topics. Great work is being done. What I’m saying is that all work in bioethics must include a discussion of economics and an expressed concern for how access to medicine can be guaranteed for everyone who needs it. You can have lots of detailed and technical disagreements over how much medicine is actually needed and what are the best ways to deliver needed medicine without bankrupting an entire country, but the focus should be on creating a society of healthy, financially secure people. That’s all anyone wants, I think, and anyone who doesn’t want it isn’t really worth my trouble.

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In US, Illness is Financial Anxiety

In August 2016, I moved from Texas to the northwest of England. Last summer, I while walking in the local park I slipped on a stepping stone and sprained my ankle. As the pain pulsed through my body and my ankle began to swell, I began to wonder whether I needed an ambulance, an x-ray, or possibly even surgery.

I did not think about the cost of an ambulance or whether my insurance might refuse to pay for it, the cost of an x-ray if needed, the price of surgery, or even co-pays for medication or any possible treatments. I was worried only about my condition and getting better.

I enjoy hiking, cycling, dirt bike riding and other sports with risk of injury, so I’m not unaccustomed to dealing with the occasional injury. With similar injuries in the United States, though, I always thought immediately of the cost. Mind you, I was never uninsured, but even with insurance proved by the college where I taught, a shattered tibial plateau in 2001 that required two surgeries and months of physical therapy left me with surmountable but daunting bills long after I had recovered. Since 2001, prices have risen dramatically along with higher deductibles, narrower networks, and higher copays for treatment.

In the United States, illness or injury means an immediate calculation of costs and threats to financial security even for working people securely in the middle class. For others, the situation is much worse. Of course, long-term illness or injury can throw middle-class workers out of work, which means they will lose their insurance, unless they can afford COBRA payments to maintain their insurance for a limited time after employment. In my experience, COBRA payments are much higher than people expect or are able to pay.

As a student in medical humanities, I read many narratives of illness. They all focused on suffering from the condition, facing mortality, finding or making meaning in the face of prolonged pain, but not so much about what truly horrifies Americans when they fall ill. Illness or injury should be a time to focus on healing, if possible, or confronting or preparing for prolonged pain in the case of a chronic condition, or to prepare for death in the case of terminal illnesses. It should not be a time to worry about financial ruin for oneself and one’s family.

The study of medical ethics offers many opportunities to contemplate challenging philosophical problems with rich and varied intellectual interest. However, access to healthcare is by far the most pressing problem in the United States. Anyone concerned about illness, suffering, and medicine must assume the obligation to relieve the suffering created by unaffordable healthcare.

 

 

Medicare at 50: Our Moral Imperative

Last year, on the 49th anniversary of Medicare, I wrote a post advocating the expansion of Medicare to ensure that everyone in the United States can have access to basic healthcare. In the past year, I have read and heard many arguments against the expansion of Medicare and, in fact, single-payer systems in general. As I read the arguments, I realize that in a sense “Medicare for All” and “single-payer” have become a shorthand way of saying we need to guarantee “universal access to healthcare,” but I still think Medicare for All is the way to go in the United States.

I happily admit, though, that my commitment is to universal access to healthcare, not Medicare. The first step, in my opinion, is to declare that we will provide access to medicare for allhealthcare to all United States citizens. Take this simple idea, and make it law: We will provide healthcare to every citizen of the United States. Once that law is passed, we can have extended debates about whether Medicare can fulfill the purpose of guaranteeing that all citizens will have access to healthcare (my repetition is intentional).

Here are some of the objections I’ve heard and read to expanding Medicare along with my replies:

I don’t want to pay for healthcare for people who are too lazy to work.

Many people I talk to are extremely optimistic about their ability to pay for their healthcare in the case of extreme illness or injury. The fact that you’ve made it so far only means you’ve been lucky, not self-sufficient. Mary Brown, who sued the government over the Affordable Care Act because she didn’t want to purchase insurance, went bankrupt and was unable to pay her bills. In response to her own bankruptcy, Brown reportedly said, “”I believe that anyone has unforeseen things that happen to them that are beyond their control.”  Yes, and the Affordable Care Act was designed to reduce the impact of unforeseen illness and injury. Unlike Mary Brown, many people who become medically bankrupt had insurance but weren’t able to cover their medical bills, anyway. A study in 2007 found that three-fourths of people who were medially bankrupt had insurance.  A study by NerdWallet Health found in 2013 that “Despite having year-round insurance coverage, 10 million insured Americans ages 19-64 will face bills they are unable to pay.”

For people who do have insurance, most get it through their employers. Too many people seem to forget that when they face unforeseen illness or injury, they will also be unable to work and are likely to lose their employer-provided insurance. If not immediately, it will happen sometime further down the road. Whether the road is long or short, it leads to bankruptcy. While some are rich enough to be impervious to mounting medical debt, most of us are not. A few hundred thousand dollars may sound like a safe cushion against medical disaster, but many life-saving treatments exceed that amount quickly. Selling your house and other assets to pay your medical bills may not be a solution. In fact it probably is not a solution.

The fact is that supporting a national program to guarantee access to healthcare free from the risk of burdensome medical debt is not something you should do only for other people. It is something you should do for yourself. And it is something we should do for our country.

As a nation, we share many burdens: national defense, national safety, public health, personal security. Like infrastructure and security, we are not talking about items we can choose to forgo in leaner times. These are basic human needs. Any society that does not meet the basic needs of its citizens will falter. If we can share the cost of providing a strong military, food inspectors, fire fighters, and police, we can share the cost of providing health services. The financial life you save may be your own.

Most countries don’t have a true single-payer system.

The argument here is that many countries that do guarantee universal access to healthcare do not use a “true” single-payer system. I am willing to concede that even Medicare for All might technically require the use of more than one payer. What is important, really, is that the payers are not invested in fleecing their clients, which often seems to be the case with for-profit insurance companies. In fact, if we had a single for-profit insurance monopoly, we might find our processes somewhat more efficient but not beneficial for consumers, so it matters who the single payer is as well. Just to repeat: we must have a system that guarantees access to healthcare without the risk of bankruptcy.

Medicare is fraught with fraud and abuse.

No one can deny that fraud and abuse exist within the current Medicare system. We need greater transparency, oversight, and regulation of the system and of the providers. Also, Medicare must have the ability to negotiate prices, unlike the disastrous Medicare Part D that currently exists for prescription drugs.

Corporations will game the system.

It is true that for-profit providers, whether they are pharmaceutical companies, for-profit hospitals, biotechnology companies, medical equipment suppliers or food vendors, will strive to earn as much profit as is humanly possible. This is why we need a system that empowers taxpayers to hold bad actors accountable and demand transparency regarding pricing and profit. Corporations will serve the common good only when common people demand that they do. Fatalism is an excuse to avoid the hard work of diligence.

We need price controls.

Again, simply removing all but one payer will not, on its own, lower prices. If Medicare simply sent checks to providers for whatever charges they submitted, the United States would continue to have the costliest healthcare system in the world. Medicare must have the ability to negotiate prices and set limits on unchecked profits.

We must limit unnecessary tests and treatments.

In a pay-for-service system, hospitals, labs, equipment manufacturers, and others make money every time someone is tested or treated for anything at all. More and more studies are finding that many tests lead to unnecessary treatment, waste money, and (even worse) cause more injury and death than they prevent. Unfortunately, limiting the number of tests and treatments available to patients is likely to be perceived as (shriek) rationing.

With our current system, we trust insurance companies to refuse payments for useless or harmful tests and treatments, but we know this does not always happen. When it does, clients fear they are being denied necessary tests and treatments. They fear this largely because it is sometimes true. Whether Medicare is expanded or not, we need better ways to evaluate what tests and treatments are beneficial, and we need better ways of educating patients on what is and is not beneficial.

Movements toward paying providers for results, not services, may reduce unnecessary and harmful services greatly. It may also force patients to become more responsible for their own health.

Finally

The only real imperative here is that we, as a nation, must decide whether we will provide access to healthcare for all our citizens. Once we agree that we will, we can begin to work out the most efficient and cost-effective means for achieving our goals. Almost no one in the United States is immune from the possibility of medical disaster and bankruptcy. This is a matter of caring for our fellow citizens, but it is also a matter of caring for ourselves.

On the 50th anniversary of Medicare, take a stand for healthcare justice.