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.

Medicare and Medicaid at 50: Time to include “US” all

On Thursday, July 30, Medicare and Medicaid turned 50 years old. The anniversary was marked by an event held at the Truman Library in Independence, MO, which I attended. Why there? In 1965, President Lyndon Johnson signed those bills (officially Titles XVIII and XIX of the Social Security Act) there, in the presence of former President Truman and his wife Bess, who received cards #1 and #2. The location was chosen for its symbolism even in 1965, because Truman had fought for a national health insurance system and lost. Nearly 20 years later, Johnson honored his legacy by signing these two major bills (also opposed by the AMA) in his library. Both presidents thought that this was a down-payment on the national health insurance system that was sure to come soon. But it took another 45 years to pass the Affordable Care Act (ACA), and we still don’t have universal health insurance, and ACA and even Medicare are under constant attack. At least now it is not the AMA that is the active opposition.

This event was not the first held at the Truman Library to remember that day. Seven years ago, a group of single-payer activists organized a 43^rd anniversary celebration there, both to commemorate the signing and to call for a universal health insurance system. That event was less “official” but more passionate, with talks by both local KC Congressman Emanuel Cleaver II and Rep. John Conyers of Michigan. Rep. Conyers’ first year in Congress was 1965, the year Medicare and Medicaid passed, and all those years later he was still vital and still in Congress and was the sponsor of HR 676, the national single payer bill. This year’s event had more of the feel of an administration press conference with several federal and Missouri bureaucrats speaking. Some of talks, including those by Truman’s grandson Clifton Truman Daniel and former Missouri state rep and insurance commissioner Scott Lakin, were good, but only one had any real passion. That was given by Bridget McCandless, MD, the CEO of the Health Care Foundation of Greater Kansas City (HCFGKC), which sponsored the event.

There is a reason for that. Before taking the reins of HCF, a “conversion” foundation established with the money that came from the sale of a group of not-for-profit hospitals to for-profit HCA, Dr. McCandless, a self-described “Independence girl”, was the medical director of the Jackson County Free Health Clinic in Independence, caring for the many people in that area who could not otherwise access excellent health service. She cared for people who had little, whose lives, in Dr. Camara Jones’ metaphor (most recently discussed in Racism and the Social Determinants of Equity: Camara Jones at Beyond Flexner 2015, April 19, 2015), were lived on the edge of the cliff before they even got sick. Dr. McCandless’ clinic provided a safety net that prevented many people from falling to the ground below. The “lucky” ones were those who were old enough (or disabled enough) to qualify for Medicare, and poor-plus-something enough to qualify for Medicaid. For those people, these federal programs, which now cover about 30% of Americans were indeed life savers.

Dr. McCandless, whose foundation is committed to funding programs that help the underserved and uninsured (the exceptional founding CEO, Steve Roling, was in the audience), talked, as did other speakers, about the difference that Medicare had made in the lives of seniors; before it they (and their families) lived their retirement years in financial fear of sickness. But her passion really showed when talking about Medicaid, originally seen as a means of providing access to health care for the poor. You certainly have to be poor to receive Medicaid, very poor in many states including Missouri, but that is not sufficient. She told us that you have to be “poor and”. Poor and pregnant, poor and the mother of small children, poor and disabled, poor and in a nursing home, poor and – and the tears rolled down her cheeks – a child. ACA was intended to expand this federal-state collaboration to encompass all the “just” poor (with the exception of those who are undocumented), but Missouri, and Kansas, the other state in the Kansas City metropolitan area, are among the states that have not done so.  Dr. McCandless eloquently expressed her hope that our states would rise to the need, that our legislators and leaders would rise to the decency, to remove the “and” by expanding Medicaid.

While it is possible that Missouri, and Kansas, and the other states that have taken advantage of the 2012 Supreme Court decision (National Federation of Independent Business v. Sebelius), that otherwise upheld the ACA, to not expand Medicaid will still do so, it is unconscionable that they have not yet, that they have left so many people who could now be accessing health care uncovered. It is a land-office business for the safety net clinics in the area, like Dr. McCandless’ former practice, but it is a volume that they can barely care for. When people get very sick, and show up in the Emergency Department and get admitted to the hospital, those hospitals bear the brunt of care without payment, but even their usually powerful lobbies have so far not been successful.

The opposition to this expansion, the opposition to ACA, and even threats to Medicare are often said to be politically driven, but they are ideologically driven. They are driven by the agendas of billionaire elitists, most of whom have never known any hardship. They have been able to further expand their already-considerable influence as a result of the Supreme Court’s Citizens United decision, and blithely fund the election of their minions to state houses and legislatures.  The New York Times on Aug 2, 2015 documents that fewer than 400 families have contributed the almost half the money in this election cycle. Former Oklahoma football coach Barry Switzer once said that many of the privileged were “born on third base and think they’ve hit a triple” (although most of these billionaires were actually born within arm’s length of home plate!). Indeed, they have no empathy; they are selfish and mean. Their minions, who enjoy the power their sponsors’ money provides for them, must be (if they are not truly stupid) also mean, but actually are not fiscally prudent; not funding health care for our people costs us a lot. Medicare already covers our most costly ill (they are old; this is why raising the age for Medicare eligibility to 67 or 68 will save little money). It is way past time for it to cover the rest of us.

Rep Jim McDermott of Washington, a physician and long-time single-payer advocate, has introduced the American Health Security Act of 2015, which will authorize and provide federal funds to support single-payer programs developed by states. It should be passed, but it probably won’t be while we have a Congress bought and paid for by the rich mean selfish people. We have had single-payer bills in Congress before, Rep. Conyers’ and before that Rep. Ron Dellums’. It is time to pass them. We need to go beyond the ACA, we need to make sure states expand Medicaid and take the “and” out of the “poor and” for eligibility. But we need to go farther.

For 50 years Medicare has been literally a life-saver for our seniors. Now we need to expand it to include everyone. Everybody in, nobody out!