Your health choked by the invisible hand of the market

Sometimes the invisible hand of the markets is all too apparent as it clutches us by the neck and strangles us slowly and painfully. If you are a typical adult American, you are likely to have at least one prescription for a drug indefinitely, either until you die or another drug is developed to replace it.

In the world of libertarian fantasy, pharmaceutical companies would compete to develop drugs we need to cure diseases that plague us. Hoping to sell us their products, they would race to develop effective and inexpensive drugs that consumers would rush to purchase. Unfortunately, those profits would be short-lived. People would buy the drugs, get well, and go about their business drug-free and non-contagious. Companies can make some money that way for sure, but it is much more lucrative to develop drugs that do not cure anyone but simply maintain their health.

This is why we have so many drugs for cholesterol, blood pressure, acid reflux, and other chronic conditions with fewer drugs aimed at eliminating disease, and even fewer aimed at curing (or even treating) diseases that affect those too poor to pay for expensive remedies. The fact that there is any treatment, even in early experimental drug trials, for Ebola is thanks to government funding of research. Left to markets alone, the diseases that kill the most people in the world would be completely ignored by drug companies.

Some diseases, such as Type II Diabetes, affect poor people, but drug companies spend quite a bit of time developing treatments for them. This, of course, is because enough people receive insurance payments from private insurance or Medicare and Medicaid to make treating them worthwhile. Almost 27 percent of Medicare beneficiaries 65 or older have diabetes, accounting for 32 percent of Medicare spending.  in 2002, Medicaid expenditures for people 20 and over with diabetes were estimated at more than $18 billion.

Of course, diabetes also affects people who are relatively affluent by global standards. In fact, it is considered a disease of babymotherdeathoverconsumption notwithstanding the fact that many who suffer from diabetes in the US are less affluent. Thus, it is extremely profitable for companies to develop products and services for diabetics in the US where their profits are underwritten by taxpayers. Diseases that primarily affect impoverished people in poor countries get much less attention.

It would seem likely that donations from individuals could fund research and development into alleviating disease. Indeed, the ALS ice bucket challenge raised more than $100 million as of this writing for research and treatment of ALS. But this again, leaves the allocation of resources to the mercy of marketing campaigns. ALS is a cruel disease, and it will only be a blessing if a cure can be found, but diseases that affect primarily impoverished individuals (e.g., malaria, antimicrobial resistance, trachoma) in the world are still waiting for a viral marketing campaign to draw attention to the millions that die from them. Market-based approaches drive money to those with the most influence.

In order to reduce the burden of diseases that affect the most people, we must provide research funds that are distributed where they will be most effective, rather than where the market funnels them. We need research centers funded by money offered with no conditions with the charge only to reduce mortality and relieve suffering. Such centers could be funded by government money or by individual contributions, but funding must come with no strings attached other than a demand for transparency from researchers as to how the money is used and what diseases are being treated. Some have offered solutions that would rely on industry to conduct research and develop products to alleviate suffering, but industry cannot be trusted with this task. Industry will always develop products to maximize profits, not minimize suffering.

The so-called “rugged individualists” in our society would argue that each person should have the healthcare he or she can afford, as income is a reliable measure of a person’s worth. Unfortunately, disease doesn’t attack people on the basis of merit. Honest and hard-working individuals can and do fall ill or become injured. Some are surprised by their turn of fortune. It is easier for a wealthy person to become poor than it is for a poor person to become wealthy, and disease and injury are great conveyors to the lower classes. Some, of course, are rich enough to be indifferent to the cost of healthcare or even long-term care. Even without working at all, these individuals will be housed, fed and treated.

People who work for their income, though, even in highly paid professions, are vulnerable to losing everything to healthcare costs. The “excellent” health insurance many people rely on is tied to employment and employment is tied to health. The unlucky ones who become ill lose both in a heartbeat. Bad luck isn’t a matter of bad choices or immorality; it is only a matter of chance. Libertarians argue, basically, that people should be responsible for the choices they’ve made in life, but libertarians also feel the government should protect people from events and circumstances out of their control. Thus, libertarians support the use of government funds to provide courts, police, and standing armies to protect the security of citizens.

The risk of disease and injury threatens us all. The question is whether we, as a society, should take responsibility for protecting all our citizens from this threat. If we don’t do this through government action, we must do it through collective action. Single-payer healthcare, such as all other developed nations have, is the most obvious solution to making citizens secure. Other solutions exist, and can be considered, but no one can prepare for catastrophe alone—collaboration is required.

We must provide funding for both medical research and healthcare. I am not asking you to provide healthcare for someone else. I am asking you to share the burden of providing healthcare for yourself. Sure, there is the chance you will never need it, but your chances are no better than anyone else’s. If we are not all secure, we are all insecure, we are at risk of being choked by the invisible hand. If we are insecure, we are not free.

 

 

 

 

 

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Ebola and the ethics of international drug testing

Ebola has been around for nearly 40 years now, and until recently the public was unaware of any available treatments or treatments in development for the disease. In fact, there is no market incentive for pharmaceutical companies to develop treatments as most of its victims are too poor to buy medicines. If and when Ebola spreads to more affluent parts of the world, of course, pharmaceutical companies will adjust their research and development strategies.

As market incentives for development of treatments do not exist, it falls to governments to fund research into possible treatments and vaccines. As Marie-Paule Kieny, assistant director-general of the World Health Organization (WHO), pointed out, “If it hadn’t been for the investment of a few governments in the development of these drugs, we would be nowhere.” Much of the funding for research has come from the United States, not from humanitarian concerns for Africans, but for domestic concerns. According to a Globe and Mail article by Geoffrey York, “most of the research on Ebola treatments has been financed by the U.S. government, often because of fears that the Ebola virus could be used aesculab-stabas a form of bioterrorism.” Be that as it may, it is a relief to know that someone is working on treatment and prevention.

As the disease has occurred in Africa, you might expect that research on it should also occur in Africa with robust drug trials being conducted in an ongoing basis, Bioethicist Arthur Caplan  says it is unreasonable to expect the research to happen in Africa. He wrote, “Privileged humans were always going to be the first ones to try it. ZMapp requires a lot of refrigeration and careful handling, plus close monitoring by experienced doctors and scientists—better to try it at a big urban hospital than in rural West Africa, where no such infrastructure exists.” ZMapp is the drug given to the Americans who contracted Ebola in Africa before being flown back to the US for treatment.

It might be possible for pharmaceutical companies to build such infrastructure, but Caplan encapsulates the real reason research does not happen in Africa nicely: “Drugs based on monoclonal antibodies usually cost a lot—at least tens of thousands of dollars. This is obviously far more than poor people in poor nations can afford to pay; and a tiny company won’t enthusiastically give away its small supply of drug for free.” Enthusiastically give away? No, they won’t even develop the drug in the first place.

Now that an experimental treatment (ZMapp) does exist, should it be tested on Africans? Bioethicist George Annas says, “If the drugs we are currently working on have been shown to be reasonably safe, and if there is realistic and robust African review and individual informed, voluntary consent, use of American-developed drugs in Africa could be justified.” Annas is here emphasizing the protection of possible African research participants rather than explaining why only the privileged should receive the drug, and he has good reason.

It isn’t as though the lack of infrastructure in Africa has prevented drug trials from taking place there in the past as you might imagine from the debate over Ebola drugs. In fact, testing has raised serious issues of exploitation in the past as drugs were tested on vulnerable populations with no intention of ever providing those same populations with any treatments that might be developed. In 1994, the HIV drug, AZT (zidovudine) was found (in a study known as AIDS Clinical Trials Group 076)  to prevent transmission from HIV-positive mothers to their infants. The study was considered important in the development of drugs to treat AIDS, but there were no plans to provide AZT to the communities where it was tested once the clinical trials concluded. Research subjects in Africa bore the risks associated with taking experimental medications but would not see the benefits of the medications developed.

As there is no market incentive for pharmaceutical companies to develop treatments while protecting research subjects in vulnerable populations, it is up to governments to help promote treatments for unprofitable diseases. This has obviously happened to an extent., but we could, and should, do more. Philosopher Thomas Pogge has initiated a plan to help improve the situation. He has proposed a Health Impact Fund  that would provide a sort of artificial market incentive for companies to develop otherwise unprofitable treatments. Under the plan, governments would contribute to a fund that would then be distributed to pharmaceutical companies based on their ability to develop drugs that would have the greatest health impact. In order to receive payments from the HIF, companies would agree to provide treatments at cost anywhere in the world. I don’t know whether the Health Impact Fund will provide a solution to treating diseases that primarily affect the poor, but it certainly represents the kind of thinking required to address these serious issues.

If we are not motivated by the suffering of others in the world, and it appears many in affluent countries are not, we may do well to recognize that diseases do spread beyond all borders. Diseases that do not affect us today may well affect us tomorrow. The so-called “free” market is obviously not the solution, so we will do well to consider other options.

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Grief Story: Daughter recalls her father’s death in the UK

The following is the recollection of a woman in middle age reflecting on her father’s illness and death some years earlier. I’ve heard many people from the UK who express similar gratitude for the NHS.

Memory is not my strong point. I say that because, when someone is dying, memory can get fuzzy anyway and I will remember some things about my Dad’s dying and death clearly and some things less so.

I guess Dad’s illness became most obvious about a year before he died. I can’t remember whether I knew it was Myelodysplasia – MDS (a form of leukemia in which the bone marrow does not function normally and produces insufficient number of normal blood cells ). What I do remember is that he started to feel tired and listless and started to have regular blood transfusions, at first once a month, then once every two weeks and finally weekly (and it could have even been more often). This trek to the hospital for the transfusions was quite a burden for him and for Mum. I was living 200 miles away at the time so heard about it in our weekly phone calls. Mum would tell me how he was doing. It seemed at first that everything was under control and there was nothing really to worry about. Life went on.

I think the first time I began to realize that something was really wrong was when I went home for a visit and saw the weight Dad was losing and how his mood was really affected by the illness. He was irritable, not his usual cheerful self. Someone had come to visit, a neighbor who, if I remember right, was also going through some illness himself. I Despairremember Dad only being able to tolerate a very few minutes of the social interaction before he had to give his apologies and go back to bed because he was so tired. I think this was a shock to me. This had to be about 6 months in.

I tried to visit more often of course, but a life in another city and a busy job kept me from doing so. I would hear in more regular phone calls with Mum about Dad’s slow deterioration. I marvel at the fact that the intense regime of transfusions and the treatments associated with them were free to Dad – a function of the British National Health Service (NHS). Over their years of working Mum and Dad had contributed their National Insurance contributions and now the NHS was doing what is was supposed to do – support them in their hour of need. Unlike here in the US, my parents never had a moment of worry about having to pay for the treatment – a true blessing at a time when any extra worry would have been overwhelming.

I learned later that Mum really knew what was happening, despite downplaying the seriousness to us (adult) children. I also learned later from her that she had tried to talk to Dad about the inevitable end point that she knew was coming – his imminent death, but, either because of his fear or discomfort for both of them in talking about such a taboo subject, she couldn’t get him to talk to her until a few days before his death and then only briefly.   My heart aches for the lack of this conversation, and I tear up now imagining what more discussions could have meant to them both.

Over the months, I think I had been hearing the stress in Mum’s voice and came to see them more often. However, she never asked for help – a Northern British trait if ever there was one. The first time she did tell me she needed me to come was on the day of the General Election in May of 1997. I will never forget that day. I was volunteering for the Labour Party that day, taking numbers at the polling station. Mum and I talked and she finally told me that she feared the worst – would I come? I, of course, said yes. I stayed up to watch Michael Portillo lose his seat  and got on the earliest train home the next morning.

When I arrived at home, I remember the stress, grief and fear that I encountered in Mum. I also remember seeing Dad, in bed, so tired, exhausted and drained. And thin, stick thin. A shock to me after not seeing him for a few weeks. That afternoon, the doctor came (yes, a home visit – a rarity these days). Dad had also been tended to by the District Nurse (as a side note, my recollection was that he had been looked after by Macmillan Nurses – an amazing free service via the Macmillan Cancer Support charity in the UK. In later conversations with Mum for this article, she reminded me that although they had applied for this help, everything happened so fast in those last days that Dad died before she got their help).   All of us, the doctor, the nurse, myself and Mum sat outside in the garden on the afternoon of 2nd May. I remember that scene so very clearly. I remember the doctor telling us about Dad’s condition and how he had deteriorated. I remember asking the doctor directly “How long does he have? Days? Weeks? Months?” I remember the doctor telling us that we should prepare for Dad’s death in the next hours and days.   It’s hard to convey to those who haven’t experienced this kind of interaction what a profoundly awful, sad and gut-wrenching feeling is engendered by this information. I think that’s why I remember it so vividly still today, 17 years later. There is something good about knowing this though, of course. It gave us just a little time to prepare.

So, with that time, Mum and I contacted my brother and sister who made plans to come straight away. That night I told Mum I would spend the night with Dad to give her some rest. In hindsight I don’t really know whether I regret that decision or not. It was probably one of the most traumatic and harrowing times of my life. I won’t go into details here but suffice to say that Dad was hallucinating on morphine and coming in and out of rational thought. It was a powerful and devastating experience, for both of us.

On Saturday my sister made it in the morning. She spent some time with Dad and then Mum and us girls made it through the day. Dad was in bed, still gravely ill but hanging on. What I now believe is that he hung on determinedly and staved off death until my brother made it home in the late afternoon. What an amazing gift he gave us for us all to be together at this profound moment. All of us were downstairs a couple of hours after he arrived and I heard a noise upstairs. Mum and I went to check on Dad and sat with him a while. Then he died.   Once more, it’s hard to convey the gravity of this experience. I was so glad we were with him to hold his hand and let him know that he was loved as he journeyed out of this world.   Once his spirit was gone and his body remained, we all as a family spent time with him, in his own bed, sitting with him, drinking whiskey and sharing tears and memories. The doctor and funeral directors came later that night and he was truly gone, spiritually and physically. To be honest much of these activities are a blur to me now.

I suppose the reason for putting all of this down on paper is partly to remember that time and have a record so that it’s noted in this span of life when I can still recall some details. Another reason is to remark on my experience of how terminally ill people are supported and cared for in England. Mum will have her own experiences of the National Health Service treatment leading up to this final time. From what I remember it was supportive. My sister reminded me that it wasn’t all great and that sometimes Dad would be waiting on a trolley until he could get a place in a ward and that this experience made him determined to die at home. However, what I do clearly remember is the warmth, care, attention and dedication of the healthcare providers I encountered. And, what I also remember is that all of this amazing care was free at the point it was needed. No-one in this story had to have the additional stress of worrying about which treatments were covered by health insurance. No-one had to worry about co-pays or debt because of the treatment my Dad had to have. No-one had to have the additional stress of worrying about bankruptcy if things weren’t covered. I know the NHS has it’s problems – it did back then and it does now. But, even though problems exist, the fundamental principles of the NHS: that it meet the needs of everyone; that it be free at the point of delivery; that it be based on clinical need, not ability to pay substantially helped my family to experience leukemia diagnosis, treatment and ultimately death in the best and least stressful way possible. I hope you’re listening America.

 

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When the hospital refuses to provide treatment

Few things are as horrifying as the idea that a hospital might refuse to treat you or a loved one at a time of crisis. This is so frightening, that many used the specter of “death panels” to terrify Americans from supporting the Affordable Care Act, which had no provision for such panels. All the same, we don’t get to go into hospitals demanding whatever treatments we think are appropriate. Doctors, other medical caregivers, and insurance companies all have a say over what treatments are acceptable for various conditions.

One of the most common issues before Hospital Ethics Committees is futility. In all the cases I experienced personally, a family member demanded treatment for loved ones that threedoctorsdoctors deemed inappropriate as they felt it offered no benefit to the patient. In most of these cases, the patient was either dying or already pronounced brain dead when the conflict arose, but other types of conflict over futility arise from time to time.

For a less grave example, consider people who get a cold or cough and go into the doctor demanding antibiotics to treat what is generally a viral infection. Some doctors might prescribe antibiotics just to appease their patients, but others will refuse on the grounds that the treatment offers no benefit to the patient while carrying both costs and some risks. (If you prefer an even more absurd example just to illustrate the point, imagine someone demanding cholesterol medicine to treat a broken arm.) This type treatment is futile because it will have no effect on the condition being treated.

Another kind of futility is both more common and more serious in its consequences. These cases often, though not always, involve infants on ventilators or elderly patients receiving artificial nutrition (feeding tubes) and hydration. In these cases, doctors and the family or other surrogates agree that the feeding tubes or ventilators are keeping the patient alive, but disagree on the value of doing so. In some cases, the patient may be suffering and medical providers feel the patient’s suffering makes it unconscionable to continue treatment. In other cases, the patient may be in a permanent state of unconsciousness or even be brain dead, and the healthcare providers feel the patient no longer exists as a person in any real sense. All the qualities associated with life (consciousness, will, pleasure) are already gone, so treatment has no use.

Few forces in the world are as powerful as the duty we feel to protect our children or to care for our parents or other loved ones. The one comfort we take in the face of such a devastating loss is that we “did everything we could.” When doctors tell us that doing “everything” is costly, painful, and of no value, it can be more than painful to accept. Complicating matters is that most of us have heard of miracle cases where people recovered despite dire prognoses. When told that no more than one in a million patients survive such a condition, family members often only hear that there is some chance of survival. It is a point of honor that they will “never give up” on their child or parent.

I’ve seen doctors handle futility with great skill and also with awkwardness. In one case, a man was convinced the hospital was abandoning his wife at the time she most needed care. The man felt the doctor was expressing the needs of the hospital rather than the needs of his wife. Once he was reassured that she would be cared for even in the absence of treatment, he felt much better about discontinuing treatment. In another case, the doctor made every effort to assure the parents of an infant that she and the entire staff would stay with them throughout the ordeal and do everything possible to reduce both the suffering of the child and the pain of the parents.

It is impossible, of course, to eliminate all disagreements and conflict, but I think doctors who are able to effectively communicate empathy and concern for the patient and the people who love the patient have greater success at avoiding battles with patients. We all want to know our experiences are recognized and validated. We all want to be heard. We also want the dignity of our loved ones to be promoted and protected, especially as they face death, which strips them of autonomy and self-respect. We want healthcare providers to recognize that we hold our dying loved ones in the highest regard even if they can no longer speak for themselves and show why they are worthy of such respect. When we fight for their lives, I think we are really fighting for their dignity and worth as a person. Doctors will do well to keep that in mind.

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Doctor, how much will this cost?

When I was young, newly married, and in graduate school, I needed to have some wisdom teeth extracted. I went to a dentist near my home, and he took x-rays and explained what all needed to be done for the extraction. I had little money at the time and I asked, necessarily, how much it would all cost. He gave an exasperated sigh and told me we’d talk about that later. We wouldn’t, because I asked for my x-rays and left without scheduling the extraction.

Through family, I managed to find a dentist who was willing to do the extraction for a set Stethoscopeprice with the caveat that one always runs the risk of unexpected and unavoidable complications running up the costs. In the latter event, this dentist, knowing my family, agreed to work on a reasonable repayment plan. The extraction went well, I was able to pay for it, and we all went on about our business.

The remarkable part of this story is that I never again had a frank discussion with any healthcare provider regarding the cost of treatment, though I have often been shocked by the prices of tests, prescriptions, and other services.

Ideally, I think when doctors (or other providers) tell patients about a treatment’s risks, side effects, and benefits they should also talk about the treatment’s cost and whether there are cheaper alternatives. Sometimes, a cheaper alternative is just as efficacious as the expensive choice the doctor is prescribing. In this way, discussions of cost can be woven seamlessly into the informed consent process.

Of course, adding a discussion of price to the informed consent process will add another burden for doctors, who are already feeling pressured for time. In a column in the New York Times, cardiologist Sandeep Jauhar points out that reduced payments to doctors have forced doctors to take on more patients to maintain their income. As a result, doctors spend even less time talking to patients and feel even more rushed to move on to the next patient. Adding a discussion of cost to informed consent will only create more pressure for the doctor to hurry through each patient encounter.

Further, it is difficult for doctors to inform patients of something they don’t know themselves, and doctors are frequently unaware of the cost of medications and other services they prescribe or order. A 2007 paper by G. Michael Allan, Joel Lexchin, and Natasha Wiebe found that “Physicians’ awareness of the cost of therapeutics is poor. With only 31% of estimates within 20% or 25% of the true drug cost and the median estimate 243% away from the true cost, many of the estimates appear to be wild guesses.” If physicians knew the cost of their prescriptions, they might prescribe differently in many cases, so it would be a huge step forward if both physicians and patients could be better informed about healthcare prices.

Physician Peter Ubel wrote a blog post about his experience with getting a prescription from his own doctor that was $200, much more than he had anticipated. When Ubel spoke with his doctor, the prescribing physician admitted he had no idea the prescription would cost so much. Ubel asks whether we should expect doctors to research costs before prescribing. It may be too much of a burden to ask doctors to do more research, but this may be a case where the move to electronic health records (EHRs) may benefit patients directly.

If an EHR retains patient insurance information, then it should be able to calculate the cost of any treatment stored in database and automatically display it to the doctor when the prescription is entered. With a really expansive system, it might even show the cost of alternative treatments. The doctor could then easily present the patient with each treatment and its cost.

I have serious reservations about the growth of EHRs and massive databases of personal information that is not easily controlled or limited; however, if we have EHRs anyway, we might as well use them to save money for patients. In the meantime, I think we will all do well to bring up the issue of cost with healthcare providers at every available opportunity. By doing so, we will make our providers aware that cost is an important consideration in prescribing, and we may also slowly work our way toward much greater transparency.

 

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On the 49th anniversary of Medicare, let’s work to expand it

Medicare was born on July 30, 1965 primarily to help provide medical insurance for Americans over 65. As of 2012, Medicare covered more than 50 million people and it has succeeded in preventing many people from falling into extreme poverty in their old age. And of the 50 million covered, about 8.5 million are people with disabilities, who would not be insurable through private insurance plans.

Despite a few arguments, from the for-profit insurance industry, Medicare is financially more efficient that public plans (see a discussion here ). Even pro-industry arguments tend to highlight some of the advantages of Medicare. In this defense by Merrill Matthews for The Council for Affordable Health Insurance  of private sector insurance, for example, the author says, “Executives and boards of directors consider, debate and decide company policy; in Medicare that function is often handled by Congress and itmedicare for alls legislative staff. “ The authors point out that the time of Congress is also of some value, but the cost is borne by taxpayers. Of course, the time spent by private-sector administrator is also borne by those who enroll in their plans, but private-sector administrators are not accountable to taxpayers in the same way members of Congress are expected to be. The CAHI defense also points out that private insurance companies must raise money and include the cost of raising capital in their administrative costs estimates while Medicare does not include the cost of raising capital as that is done through Congress.

The real difference, according to Matthews’ argument, though, is in the amount of money spent on patients. Matthews points out that private insurance companies spend more money on administration because “they scrutinize individual provider claims much more closely, challenge questionable procedures and determine whether, in the company’s opinion, a claim is valid or needs to be reconsidered.” In other words, private insurers spend a lot more money denying claims. If you’ve ever experienced a major illness or injury, you have been bombarded with paperwork explaining why you will have to pay your own way with no reimbursement from your insurance company.

Matthews said that in 2003, Medicare spent $6,600 per patient paying claims, while private insurance paid only $2,700 per patient. This hits consumers in two ways. First, if you’ve already received treatment and the bill is denied, you are on the hook for payment. Second, the price of your premium includes the salaries of the administrators who are committed to denying your claims, so you are paying them to refuse payment for your treatment. If you think it is good that your claim was denied, leaving you with enormous medical bills after a serious illness, private insurance is the way to go. If you want to have some peace of mind that your bills will be covered, expansion of Medicare is certainly the best choice.

Nonetheless, it is true that Medicare payments need to be lowered. The costs of Medicare payments reflect the costs of for-profit healthcare. The costs can be lowered by enabling Medicare to negotiate the costs of medicine (drugs, hospital equipment, and other medical technology). The costs of common medical procedures vary wildly from city to city in the United States (to see a comparison of four services, look here). By bringing more transparency to healthcare costs, Medicare can pay providers what is reasonable, rather than what is currently possible. While many say that markets create competition that will lower prices, this is simply not the case. The reason it isn’t the case should be obvious to anyone: patients who need healthcare are in no position to shop around. After I had knee surgery in 2001, I had complications that some blamed on my choice of doctor. When asked why I chose this particular surgeon, I said, honestly, that I lay in bed with a shattered tibia, calling doctors for appointments. The doctor I “chose” was the seventeenth doctor I called. No, I did not carefully research his credentials, prices, or hospital admitting privileges. Even at that, I had to wait two days with a shattered tibia to get an appointment. This is the reality of for-profit healthcare and for-profit insurance. It is a nightmare. While Medicare may not be a blissful dream, it leaves fewer patients with healthcare induced night terrors.

Many people seem to have a false sense of security with their employer-sponsored health insurance. In the first place, they overestimate how much of their care will be paid for by the insurance. Then they seem to forget that any serious illness or accident that makes them unable to work will also make them unable to maintain their insurance coverage. The fact that your employer provides insurance today is no guarantee that it will be there when you need it. Further, under the Affordable Care Act (ACA), employers may reduce employees or hours to avoid providing healthcare, as discussed in this article in the Wall Street Journal. And finally, under the ACA may further restrict patient choices of providers, as noted in this piece in the New York Times.

Should anyone be at the mercy of employers for healthcare? Should small-business owners and the self-employed have to shoulder a disproportionate burden for healthcare? Medicare for All is an equitable solution that is fair to everyone and enables us all to pursue our vocations according to our dreams and talents rather than our fear of medical bankruptcy. The time to expand Medicare was 49 years ago, but let’s do it now. Support H.R. 676.

Additional Reading: For more resources on this topic, see the Public Health and Social Justice website.

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Patient Story: University Student Faces Surgery in Wuhan, China

I am hoping that Ethics Beyond Compliance can become a place for patients and caregivers to share their stories of medicine, medical research, illness, and loss. The following post is by a university student in Wuhan, China who had to undergo surgery and spend 12 days in the hospital (for less than $1,000). Here is her story.

Wuhan, China

In the end of May 2014, after few really spicy meals, I had dysentery. A few days later, things became worse, so I went to the eighth hospital of Wuhan, which specializes in anorectal diseases.

Knowing that I needed surgery, I felt very nervous and insecure. Then my dad asked one of our relatives, who is also a proctologist, about this hospital and the doctors here. My relative recommended a doctor for me. I went to see the doctor, and he agreed with the former doctor. At first he said he would perform surgery the day after but later told me he had some other business for the day after, so we had to do the operation that day, which was children’s day, 1st of June.

They gave me an enema first, and then had me do a lot of tests such as blood test, allergy test and so on. Later, a nurse came in and gave me a tranquilizer to prepare for the operation. Then another nurse came in to lead me to the operation room. I signed some paper for anesthesia. After a while, there was an angry nurse for the operation who, I guess, frowned on my skirt. I said “sorry,” but she kept frowning on me, which made me very upset and a little bit angry. During the preparation, I asked the angry nurse why she seemed so unhappy, and she said it was just work, nothing else. Then she tried to give me injection. But somehow she had no luck. She gave me three injections in the wrong place, which hurt me a lot. I tried to calm her and said, “It’s okay, don’t be nervous,” but the truth is deep down I felt I could not bear one more try. My hands were very swollen. Finally, the fourth went okay. During the injection a man gave me anesthesia. I could not feel my legs, and then the doctor came and asked me to kneel on my front.

I could not tell what was going on there, but I could hear what they said. The angry nurse checked my wound and said, “Ew, that’s big wound.” Then the doctor said he didn’t expect such a big one either. And he said he would show me my files later, but I said “No, thank you.” Somehow another nurse came in, made some comments and flirted with the doctor. Then another doctor in, also judged my wound, and said something that was not very nice. I swallowed it all in. I felt so assaulted and humiliated, but I could not do anything. Finally, it was over. They used the bed to send me back to my room.

I guess it’s because of the anesthesia that I still could not feel much. Only tired, exhausted. After having some fluid, I fell asleep. I remember around 3 o’clock, I was awoken by severe pain. I could not even cry loud, but somehow my aunt heard me. She woke up the caregiver, whom we hired that day. The caregiver came and helped me to pee; I felt like peeing but owing to the anesthesia and the pain, I found it difficult. After three painful hours, I finally did it. With the help of two painkillers the caregiver gave me, I fell asleep again.

Every time I woke up, I was in great pain. Still I had four more days of injections. The younger nurse tried to give me an injection but she failed and asked an elder nurse; however, the elder nurse gave me even more pain. Then there came a middle-aged nurse who smiled a lot at me even though she felt nervous while giving me the injection. I think she is the first nurse I met in the hospital who made me feel comfortable.

My dad checked on me from time to time, told me the doctor asked for more money for this operation because of my large wound. I checked the bills and found mistakes. I told one nurse, and she said she would check on it but later, and then I got no response.

I spent 12 days in the hospital, and the whole operation cost me 5,618 RMB ($905.00) not including the caregiver.

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