The frustration of actually trying to get health care: the other meaning of access

I have written about the quality of care that people in the US receive, and about access to and the cost of care, but another very important issue is the actual process of obtaining appropriate care. This is a major source of frustration for patients and their families, and can drive anger against the system, against doctors, against insurers, against the government. People who experience this frustration and anger want it to change, and sometimes want to lash out, offering an opportunity to be intentionally misled by influential others for their political ends. The demonization of the Affordable Care Act (“Obamacare”) is a good example. Obamacare actually did lots of good things, starting with insuring tens of millions who did not previously have coverage; it also forbid insurers from charging more to those with pre-existing conditions, and allowed children to stay on their parents’ plans until they are 26. Actually, it did little or nothing bad, if the criterion is access to care. A few people saw increased premiums, mainly the healthy young and those who previously had such terrible policies that they were both cheap and essentially worthless. While the Republican congress tried to repeal it, it turned out that, surprise, people would be worse off without it.

On the other hand, frustration with the obstacles to obtaining appropriate care are real, every day, and in-your-face for patients and their families. I have recently been experiencing these from the perspective of the patient (or family) rather than that of the provider, as I work at getting care for my 92-year-old father. My experience with the provider perspective helps me to understand the situation from both sides, and hopefully to try to figure out which obstacles are rational and which are simply unnecessary.

Let me start by largely absolving any of my father’s individual providers; all those involved with him – physicians both general and specialist, physical therapists, and more recently the nurses, social workers, and nurse practitioners through the palliative care agency – are committed, caring and hard-working. They do their best to help him, to be available, to respond when a problem, minor or urgent, arises. However, there are obstacles in the way. Many services require a referral from a physician, from calling in prescriptions, to ordering lab tests or x-rays (and getting the results), to getting physical or occupational therapy, to enrolling in palliative care. While none of these individually may seem to be burdensome for the doctor, there can be many for any individual patient, multiplied by the number of patients a physician sees who need these services. While it is sometimes the specialist who makes such a referral or fills out such a form, it most often “rolls downhill” to the primary care provider. That provider has to have a very large number of patients to get by and make a living, so the phone messages and faxes and lab results pile up while s/he is spending all day actually seeing his/her patients. Rationalizing the delivery of care means trying to get nurses or other staff to deal with as many as possible, but lots of these require a doctor (or other licensed provider, such as a nurse practitioner) to interpret, approve, or sign off on.  And having more staff costs more money, and means (particularly for the primary care provider, whose reimbursement is much lower than for many specialists) having more patients. Thus, a vicious circle, often compared (from the provider’s point of view) to running on a hamster wheel; for patients, this often seems like obstructionism.

Of course, it often is obstructionism, but rarely on the part of the individual provider. The reason is, unsurprisingly, money. For the providers of care, or more usually the companies for which they work (whether for-profit or not), the issue is reimbursement by insurers, including Medicare and Medicaid. There are rules that must be followed, forms that must be filled out, referrals that must be signed, and procedures to go through, or payment will not be forthcoming. And then the provider, whether physician, nurse practitioner, physical therapist, pharmacist, or social worker, whether self-employed or working for a company, doesn’t get paid. And, depending on how often this occurs, will make less, fire staff, or go broke. In addition, insurance companies themselves often create obstacles to payment (such as the time-honored one of just refusing to pay the first time or two, because maybe the provider will give up), but this is more often true for costly surgeries than lower-cost preventive and treatment services. And sometimes the practices seem almost incomprehensible as in insurers requiring patients to use brand-name rather than generic drugs and thus have to pay more out of pocket (“Take the generic, patients are told. Until they are not”, NY Times, August 6, 2017); one word, not used in the article but clearly described: kickback.

To be fair, many of the rules that seem to be obstructions are not only about saving money; they are about both preventing fraud and even patient safety. There absolutely are major fraudsters out there, doctors and home-health companies and nursing homes and every sort of medical support provider (even hospitals), who try to and often succeed in bilking Medicare (and other insurers) out of millions of dollars in inappropriate (“do you want a scooter at no cost to you?” – but someone else is paying!) or truly fraudulent (there is no patient) care. In fact, some care, even if you want it, even if someone is willing to provide it (if they get paid), is not appropriate for you, or your family member. Medicare and other insurers do set criteria, and require that it be documented. This can actually be good, not only for all of us as taxpayers but for our health and safety.

But often it isn’t good. It sometimes makes care that is appropriate, evidence-based, and desired, hard to get. It takes a long time. It takes lots of phone calls, and hours on hold or waiting for calls back. It has messages lost in piles, or over the weekend. It should not happen, but it does. And it is frustrating. The “Triple Aim” guiding progressive health care has received a lot of attention. It is to deliver high-quality care in a cost effective manner that is satisfying to patients. To document the last, many hospitals, provider groups, and companies send out “patient satisfaction” surveys, which are at best cosmetic and at worst destructive. People don’t fill them out “right”; they tend to reflect an overall impression that leads people to mark each of the ostensibly-separate questions “great” or “terrible”. Also, in forming this global impression, folks understandably often overvalue the things that they can assess (like the quality of food or attractiveness of the facility) compared to things that they cannot (such as the actual quality of care). This is, by the way, where providing good customer service makes a big difference, and while some places are getting better, the medical care industry is generally weak in this critical area.

As in almost everything, those with the least get the least. The uninsured, the poorly insured, and the just poor, provide the least incentive to providers (getting paid) to meet their needs. Government regulations that require certain services for Medicare or Medicaid without paying for them result in greater strain on those providers who provide care to people in these groups. Many providers, especially in some fields or medical specialties or geographic areas, try to avoid them. They locate in wealthier neighborhood, don’t take folks who are uninsured (or on Medicaid, and sometimes even Medicare), or offer indulgent, wonderful “concierge” services for those who can pay a significant retainer. Thus works the “market” in health care. A terrible way to go.

A universal health insurance system won’t make all these problems go away; even with it, systems can still be poor, providers can be uncaring. But it will help a lot. Because everyone is covered, there is no “vendor lock”; the market can function well because people choose their providers based on service, not because they are forced to because they are locked in to a limited pool. Information flows between primary care and specialists and therapists and labs and imaging because if it doesn’t folks are free to take their business elsewhere. The way competition should work; competition on providing the best product and service.

And, because we would all be in it together, in the same system, the most empowered will make sure it works for them, and thus, hopefully, for us all.

McConnell, the GOP and Trumpcare: We care about lowering taxes for the rich, not your health care!

“Mr. McConnell has always taken pride in protecting his members.”  -- NY Times, June 23, 2017

First, let’s start with a reminder about how insurance works. Money (“premiums”) is collected from everyone, or as many people as possible, and when the bad thing happens (insurance is almost always about protecting against bad things, like car accidents, or fires, or death, or illness), the victims are compensated. If it pays out more than it collects, then the insurance company goes bankrupt and can no longer pay out. This works for all types of insurance, whether for-profit (as most is in the US), not-for-profit (like many health-insurance companies in other countries), or social insurance where everyone is a client and government is the insurer. Insurance companies, especially for-profit insurance companies, have to build in a profit margin as well. In addition, they prefer insure people who are at low risk of requiring payout, and not to insure or charge higher premiums to those who are at higher risk (e.g., younger drivers, for car insurance). This process is known as “underwriting”.

If an insurance company is forced to insure a lot of high-risk people (as they were under ACA) and can’t charge them really a lot (under ACA they could charge 3 times as much), they need a lot of low-risk people to pay premiums to be able to fund their probable payouts; thus the “individual mandate”. For social insurance, such as government financed health insurance programs (as in many other developed countries, or Medicare and Federal employee and military programs in the US), it is actually not necessary that more money come in from premiums than is paid out, because the government can (if it wishes) subsidize the loss from other funds. This is, of course, a political decision on how to allocate tax dollars and how many tax dollars to collect.

The Senate Republican leadership has made its position on this completely clear with its recently unveiled “health care” bill, the “Better Health Care Act” (BHCA). Crafted by Majority Leader McConnell and a small group of white men from a small group of places (for example, 2 senators each from Utah, Wyoming, and Texas). It will and should be called #Trumpcare; while the President didn’t write it, he has endorsed it and will sign it if it passes the Senate and the House reconciliation. It is clearly a tax-cut-for-the-wealthy bill that derives funding from the reduction (and sometimes elimination) of health care coverage for a very large percent of Americans; this is detailed by the NY Times’ Margot Sanger-Katz in “Shifting Dollars From Poor to Rich Is a Key Part of the Senate Health Bill”, June 22, 2017. The Times also has a piece by Sanger-Katz and Haeyoun Park that contains a clear listing of what will be cut from the ACA in order to fund these tax cuts, “How Senate Republicans plan to dismantle Obamacare”, summarized in the graphic. However, the details are important; even the parts of the ACA that the BHCA “keeps” are largely undercut by other parts of the bill. For example, it keeps the requirement that insurers must issue policies to people with pre-existing conditions (which can range from heart disease and cancer to endometriosis and broken bones and everything else), which is good. But it raises the amount that insurers can charge these people from 3 times as much under ACA to 5 times as much. This is a big deal, and a bad deal, for people with disabilities and for older people who are, (surprise!), much more likely to have pre-existing conditions.

While BHCA (Trumpcare) repeals the individual mandate, which will make some people happy (until they get sick) and the employer mandate (which will make employers happy), it also repeals the subsidies for out-of-pocket costs and decreases funding for subsidies to make policies on the exchanges affordable. The new bill would make either premiums or deductibles (or both) unaffordable for many Americans. It limits and sometimes eliminates the requirement that insurers provide “essential health benefits”, like preventive care and contraception, allows insurers to set annual and lifetime limits on how much they have to pay, and makes major negative changes to Medicaid. Medicaid is currently largely paid for by the federal government, 50%-80+% depending on the average state income, and 90-100% for people covered by Medicaid expansion. The “changes” include (gradually, so the impact won’t be seen for the 2018 election) cutting and capping the amount the federal government pays, shifting costs to the states, which often will not be able (or willing) to cover them.

This will affect a lot of people. Medicaid is now the largest insurer in the US, covering 69 million Americans, even though many states did not expand it under the ACA to cover poor adults. What it does is summarized in “How Medicaid works and who it covers” by Abby Goodnough and Kate Zernike. It covers, as seen in the accompanying chart, 79% of poor children (and more than a third of ALL children), 64% of nursing home patients (many of whom were middle class before the NH wiped out their savings!), 60% of children with disabilities, 49% of births, 30% of adults with disabilities. The people who will suffer from Medicaid cuts are old people in nursing homes, children, and disabled people (many of whom are able to stay in the community and even keep jobs rather than being in nursing homes because of this support). With the caps on lifetime benefits, it means, as Dr. Eve Shapiro points out in an Op-Ed in the Arizona Daily Star, “that a premature baby on private insurance could exceed her lifetime limit on coverage before she even leaves the hospital”! And, with the right convergence of decisions by the state, the same could happen to an infant with Medicaid.

This is a big deal. Ideologues and pundits and politicians like to debate theoretical issue to see who scores the most points. They want to be the “most conservative”, the most “anti-abortion”, the most “pro-industry”, the most “anti-tax”. If they are articulate they may think that making their smarmy points makes them win. And I guess it does. Except the losers are not those on the other side of a debate podium, they are the majority of the American people, the politicians’ constituents, who don’t get treatments, don’t get diagnosed, do get sick and die. Lives, not ideologies, are at stake.

Except, of course, it is about ideology. This is made clear in “A debate that shows what each party cares about” by Neil Irwin the Times. No one, certainly not a senator who has to run for re-election, wants to say that they are about making it harder or impossible for many (often the majority) of their constituents to be able to access health care, or to pay for it, or to get the treatments and therapies they need. But make no mistake: every senator who votes for this bill is saying exactly that, that they value tax cuts for the most privileged above basic health care for the rest of us. “This plan will improve the affordability of health insurance,” lied Sen. McConnell in a recent opinion piece in the Cincinnati paper.

Yes, “Mr. McConnell has always taken pride in protecting his members.” And his donors. It is too bad that he has no interest in protecting the rest of us.