Confessions of a Healthcare Super User

Confessions of a Healthcare Super User

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On July 17 of this year, I journeyed from Charlottesville Virginia, where I live, to Seattle to have my cervical spine rebuilt at Virginia Mason Medical Center, whose Neuroscience Institute has a national reputation for telling patients they don’t need surgery. It was my fifth complex surgical episode in 29 months, after more than fifty years of great health.  My patient experience has been wrenching, and it made me question yet again the conventional wisdom about doctors and patients that dominates much of our current health policy debate.

None of these interventions was remotely elective: head and neck cancer, nerve grafting surgery to restore use of my right hand and a musculoskeletal trifecta- two hip replacements and cervical spine surgery.   All five surgeries were successful, and I have fully recovered and returned to my busy life. The technical quality of the surgical care was flawless. Only three of the people who touched me were over forty, and three of the procedures were performed by women.   It was stirring to watch and be helped by the remarkable teams and the teamwork they displayed.

In retrospect, it was dizzying how fast the acute phase of these interventions was over. I walked on my new hips an hour after waking up, and spent only three nights in the hospital after my spine was rebuilt! Most of the actual recovery, and large amount of the clinical risk, actually took place out of the hospital, placing a premium on preparing me and my family for the transition.

No analysis of my prior health history or my genome would have predicted or helped prevent the past 29 months (sorry, Watson!). Absent these procedures, I would either be dead or confined to my back porch in a wheelchair.    I shudder to think what would have happened to me if I was seven years younger and, like millions of older Americans pre-Medicare, lacked health insurance

My experience brought me face to face with the uselessness of the twin narratives that have seized control of our national dialog on healthcare. Most health policy in the US over the past forty years has been driven by two warring economic theories that blame our health cost problem on moral failure by patients or by physicians and the care system.

Conservatives blame patients both for their own poor health and a lack of thoughtfulness of healthcare use, resulting in higher costs. Much of the recent failed Republican ObamaCare Repeal and Replace legislation was aimed, rhetorically at least, at “empowering” patients to be more “responsible consumers”. Progressives blame physicians and a mercantile care system for driving up costs by doing things to patients that aren’t needed to drive up their incomes. This led to an explosion of arcane new payment schemes and an avalanche of new physician and hospital reporting requirements during the Obama years.

As a patient, I found both of the conservative and progressive narratives not only not descriptive of what I experienced, but also demeaning to me and to my care teams. On my part, I did everything conservative policy analysts would have insisted that I do. I am a gym rat who works out five days a week and am in better physical condition than most people twenty years my junior. I also exhausted the complementary medicine and pain control alternatives to surgery and only turned to acute intervention when the pain or threat to my life or functionality became untenable.

Neither did I evade economic responsibility for the cost of my care.   When I turned 65, I opted out of the antiquated regular Medicare program and enrolled in an HMO-style Medicare Advantage Plan. I had a whole hide worth of “skin in the game”: a $6700 front end out of pocket liability. I also tried to find information on provider, government and consumer websites that would have enabled me to “shop” for care. I knew where to look, and found nothing online or anywhere else that made my decisions easier or more rational. I had to rely on my personal relationships from forty years of working in the health field to find the right people to help me.

As far as the progressive narrative about income maximizing clinicians and hospitals, as far as I could tell, the people I trusted to take care of me did not spend thirty seconds thinking about their incomes or how to pad them. They were focused with laser intensity on helping me, and redeeming my trust in them. It is tragic how much of their time has been diverted from direct care into sitting in front of a computer elaborately documenting what they did to me. Less than half of the time of my nursing staffs was devoted to direct patient care; you could feel the computer beckoning to them virtually non-stop during their shifts and even after.

It is time for policymakers to treat us patients with more respect and our caregivers with greater thoughtfulness. Most public health experts believe that the contribution that patient and physician behavior make to health costs is dwarfed by the health effects of “social determinants” like poverty, homelessness, poor nutrition, food insecurity, broken homes, and crime, and the onslaught of chronic illnesses like arthritis and degenerative diseases of the nervous system which are inevitable correlates of aging.

By failing to confront and effectively manage the declining functionality of our own bodies as we age, we deny the inevitable and unavoidable. And by blaming doctors and patients for our health cost problems, we evade responsibility for the crumbling society that damages our citizens and drives many needlessly into an expensive care system.

This does not mean that there are not mercantile corners of our health system where money matters, and influences care decisions.  We can minimize the damage they do with better fraud and abuse enforcement and by repricing (e.g. reducing the fees for) grossly overpriced services to eliminate perverse incentives. It also doesn’t mean that people cannot take better care of themselves.

But to pretend that we can fix what ails our health system by finding the perfect economic incentives to animate doctors and patients is not only a waste of scarce policy and political bandwidth. It is fundamentally insulting to those who use the health system and those who help us. We patients are not greedy “consumers” trying to maximize our health benefit; rather we are frightened people seeking to regain control over our lives. Our caregivers are there because they want to help us do that.

Jeff Goldsmith is President of Health Futures, a strategy consultancy and Associate Professor, Public Health Sciences, University of Virginia.

 

 

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41 Comments on "Confessions of a Healthcare Super User"


Member

This was a Great Article. I believe that the correct use of Food Items, which he used for Treatment, could make a lot of Difference.
Keep sharing such useful content.

Member
Aug 29, 2017

Good article. A few comments:

> No analysis of my prior health history or my genome would have predicted or helped prevent the past 29 months (sorry, Watson!).

Genomic approaches to predicting and treating cancer are a very active field of research, which is beginning to show promising results. But it’s in its infancy, and in your case science wasn’t yet able to help. (BTW, it’s great that you are recovering so well.)

> chronic illnesses like arthritis and degenerative diseases of the nervous system which are inevitable correlates of aging

Other countries have more successfully controlled healthcare costs, while facing exactly the same diseases of old age, and having equal or better outcomes for life expectancy.

> Progressives blame physicians and a mercantile care system for driving up costs

AIUI, alleged price-gouging by physicians is a minor part of progressive critiques of US healthcare. More serious issues are the number of uninsured or under-insured people, and the excessive bureaucracy involved in accessing healthcare.

Member
Sep 28, 2017

Human genomics is in its infancy, the ability to manage the data is lacking. EMR’s are template driven and today cannot handle the volume of genomic data. Until this changes, change and development is going to be a rough rode.

The US Healthcare system has excessive administration costs claims processing needs to be streamlined and payors need to assist with this effort. Prescription drug costs are a large part of the annual rate of increase and the recent explosion of generic prices is not helping matters.

Physician price gouging is minimal if, at all, most MD’s operate with payments schedules from payors and the government.

Member
JGRussell
Aug 28, 2017

Excellent article. Your statement “No analysis of my prior health history or my genome would have predicted or helped prevent the past 29 months” —- I handle Medigap enrollments (rarely a Medicare Advantage plan) and it’s amazing how many folks turn 65 and think their good health will continue through age 100 with a hiccup. Choosing their healthcare product when they are Medicare eligible is critical. Glad you mentioned your advantage plan as your skin in the game.

Member

I thought Medicare Advantage had very narrow networks, but in Jeff’s case it sounds like he could go anywhere he wanted, whether the provider had a contract with Humana or didn’t. JGRussell, what do you know about that?

Member
Barry Carol
Aug 24, 2017

When people say that America has the best healthcare system in the world, I think Jeff’s experience is what they are referring to – top notch, cutting edge care resulting in the best possible outcomes. Don Berwick calls this rescue care and many wealthy people from around the world travel to the U.S. to access it albeit at high cost.

At the same time, experts tell us that 75%-80% of U.S. healthcare costs are accounted for by the management of chronic diseases and conditions including CHF, CAD, COPD, and ESRD, diabetes, asthma, hypertension and depression. At least some of these can be mitigated, postponed or even prevented by good lifestyle choices. Some have a genetic component. A recent study published in Health Affairs magazine concludes that people who were never overweight, never smoked and didn’t drink or drank only in moderation lived about seven years longer on average than those who smoked, drank too much or were overweight at some point. The onset of disability also came six years later for the healthy group. Unfortunately, if we live to a normal lifespan and beyond, we have a much higher chance of being afflicted with Alzheimer’s or dementia both of which kill slowly and can require many years of very expensive custodial care. So, it’s less than clear whether or not people who do everything right in terms of lifestyle choices incur lower healthcare costs over a lifetime than people who make poorer choices and die sooner as a result.

Regarding shopping for care, even with complete price transparency, it’s arguable how much care can really be shopped even if it can be scheduled well in advance. Drug alternatives can be discussed in terms of efficacy, convenience, possible side effects and cost. Imaging prices can be compared though there could well be some variance from one center to another with respect to the quality of the equipment, the techs or both. Quality is not so easy to define precisely partly because some patients are higher risk than others. If a heart surgeon two years out of fellowship training offers to do a CABG for half the price of other more senior doctors, including those in his own group practice, is that really a good deal? I don’t think so.

What I wonder about is how much care that gets delivered is not only unnecessary but could be identified as unnecessary in real time and, if it can be so identified, why is it delivered in the first place? Is it because the patient wants it because he sees it as being thorough and it’s not invasive or painful? Is it money driven like a lot of PT delivered in nursing homes probably is? Is it defensive medicine passing as the standard of care in our overly litigious society? Inquiring minds want to know.

Member
Peter
Aug 23, 2017

“As a patient, I found both of the conservative and progressive narratives not only not descriptive of what I experienced, but also demeaning to me and to my care teams.”

Thinking about fixing a broken system when you’re in need of life saving treatment is not the right time. Especially when you have “personal relationships from forty years of working in the health field to find the right people to help me.” Lucky you. The thirsty do not care where the water comes from.

“the people I trusted to take care of me did not spend thirty seconds thinking about their incomes or how to pad them.”

They don’t need to, the “system” provides nicely. When I needed a carotid ultrasound and the ophthalmologist was going to book me into his associate hospital’s radiology, I protested that I could get it done cheaper with a private clinic. When I said it would also save me, and the “system”, he was dumbfounded at the need to consider the “system”. Never crossed his mind.

Maybe when people are trying to cut poor peoples access to Medicaid does the “system” need consideration.

Member
Jeff Goldsmith
Aug 24, 2017

Peter, I agree with you that the system is, in fact, broken, and way too expensive, and there is no good time in the patient/citizen experience to address the manifest flaws. My point about the narratives is that they are burnt out and we need new ones. And the “cures” justified by these narratives have ADDED to the expense, particularly the progressive cure of “value based payment”, which has sucked millions of person hours of clinician time out of the exam room, OR and patient room, and directed it into documentation and the most baroque and costly revenue cycle ever invented.

To be fair, the conservative narrative has justified shifting literally billions of dollars in risk for health expense onto working class and middle class households with no savings and no realistic prospect of paying the huge patient portion of their medical bills. And the narrowly averted Republican “reforms’ that would have added hundreds of billions more cost risk to families with no money.

Enough. We need new narratives. And buried in the tail end of my essay was some guidance about where I would look: better care models and underlying philosophy about chronic disease, including mental health/substance abuse, where we are ABJECTLY failing, and what to do about the damage done by a crumbling society- where is the leverage to address the social determinants of health, which generate so much avoidable suffering and expense.

Am working on a book with my friend, Tim Jost, in which you can expect a thorough examination of both issues.

Member
Peter
Aug 24, 2017

“and what to do about the damage done by a crumbling society”

The income gap would be a good place to start.
http://money.cnn.com/2016/12/22/news/economy/us-inequality-worse/index.html

Trump is pitting us against one another and finding false enemies to divert our attention.

Member

Peter, you and I have our differences re how the medical system needs to change, but your perspective and mine do align in several areas. Yes, the System provides nicely, and yes, often medical providers are surprised when we ask about cost or even necessity/alternatives to suggested procedures (several reasons for this, not the least of which they don’t have the time and are tethered to their computer screen these days and the darn screen has a short leash).
Of course if you are in Jeff’s situation and dealing with a condition or crisis that may end your life or leave you debilitated, questions about cost are not on your mind…..but in elective surgery and routine care “value” questions are good ones (to determine the best combo of cost and quality)…..but I am pretty sure Jeff asked lots of questions about quality.

Member
Steve2
Aug 24, 2017

My experience, our experience in our network, is that patients don’t ask much about costs for elective surgery either. They trust their PCP or family on guidance for a good surgeon and/or good facility. I get tons of calls asking about who people should see (wife runs our pastoral care group, I have been around a long time), but it is rare that people ask about costs, and there are very large cost differences in our area.

Steve

Member
Peter
Aug 24, 2017

I fully agree Steve. People (all people) want to “trust” their caregiver and family and feel uncomfortable asking probing questions which might be interpreted wrongly. Getting too low a price also causes doubt about quality and outcome. There is no good way to get unbiased facts and the medical understanding necessary make the right pick. This is also true for single-pay systems.

When I needed hip surgery I was uninsured, and so price was my first concern. I knew of the tremendous cost padding in the U.S. system. But I did not jump blindly at price. Luckily I found a web based support group on a non-traditional method of hip joint repair. Not until I had asked a lot of questions about the surgeon and the hospital, and seen how many people were helped with great success by a British trained physician in India did I elect to have him do the surgery. But many people passed before me who took a leap of faith with much less experience than I had access to.

By the way, the procedure was invented in Britain by an english doc, rightly or wrongly, that in itself, gave me added confidence.

Member
William Palmer MD
Aug 23, 2017

Jeff, A blith sunny article that gives us hope. Good work.

So you are saying that you do not intuit that moral hazard and provider-induced demand are powerful causes of our cost problems?

I guess that only leaves ‘third-party payer’ as a classic economic explanation: everyone charges what they think a rich Wall Street insurance firm will pay. No one cares about prices….the docs, the patient, the payer especially– who wants to increase market share. How important do you feel that is?

But we have to hang our hopes on finding something in this health care sector that we can correct. Could it be that demand is near-infinite? Could it be that we have articicially limited supply too much? Could it be that we do not have enough oligopsony (large purchasing)? Could it be multifactorial? Maybe we should try to simplify our understanding by first analysing, say, drug prices?

There could also now be what I like to call the Coloma effect. This is the place in California where gold was discovered by James Marshall. It drew hundred of thousands of fortune hunters from the east coast and, as we know, prices went zooming beyond belief.

There is such wealth in this health sector, that maybe this attractant is serving as an alluring pot of gold….and hence the prices. Demand for everthing in the sector is increasing: providers, nurses, administrators, consultants, capital investors, building construction, drug design, research…on and on. It is hard to imagine that we are 1/7 the GDP. This has got to be telling smart young people to go into health care as a career.

Alas, there may be no accurate diagnosis of the illness in health care. Maybe it really is a natural monopoly? Maybe a part of us has to fail first–say patients stop coming to see us because they can’t afford anything–before we can arrive at an accurate ex post facto finding as to our defects.

Member
William Palmer MD
Aug 23, 2017

blithe

Member
lindad222
Aug 23, 2017

Do you know how much your services cost? Just wondering.

Member
Jeff Goldsmith
Aug 23, 2017

I know what the hospitals and physicians CHARGED and what Humana PAID.
(There was a predictable very large gap.)
I do not know how much the services COST.

Member
Perry
Aug 28, 2017

This is the problem. My wife was in the ER a month ago for a kidney stone which she stoically tried to pass at home. After 3-4 hours of no sleep and then vomiting we went to a local freestanding ER affiliated with a large hospital system. The final bill was just shy of $8500. We knew the CT to confirm her stone (which was entirely appropriate given her history of a gynecological cancer) would be about $3-4000, so that was no surprise, but $2500 for IV hydration and about $2000 just for stepping into the ER seemed astronomical. I can guarantee you a bag of IV fluid and the tubing costs no where near $2000. Most ironically, the insurance company took about 2/3 of that total off, which they paid about 1/3 of the original cost, leaving us with a very reasonable $650 bill.
This outlines a huge problem. The physician’s reimbursement is one of the smallest pieces of the medical care pie, and yet we seem to be the ones targeted by all the schemes to limit costs. Yes, we can affect spending by encouraging the patients to avoid costly procedures or tests they don’t need (assuming they listen to us), but IF the patients really need those tests or procedures, we cannot control what the hospital or treating facility will charge.

Member
Millenson
Aug 23, 2017

Jeff, many thanks for writing this and all my best wishes on your continued recovery.

In a very brief commentary I wrote for the Journal of General Internal Medicine in 2014, “New roles and rules for patient-centered care,” I directly addressed the fact that patient-centeredness has 3 elements — ethical, clinical and economic — that may be synergistic but could also conflict. This is typically ignored in rhetoric. (No longer behind a firewall, it’s here: https://link.springer.com/article/10.1007/s11606-014-2788-y)

All the data suggest that the “consumer” principle is not applicable to the large expenditures, as you found. More to the point, expecting those who are sick, vulnerable and scared (often a lot older and/or less educated than someone like yourself), is absurd. I’ve compared the idea that high deductibles will solve health care cost issues as the equivalent of the beer commercials that tell you the right beverage will score you the blond. (See “Not in My Name” in the Health Affairs blog.)

I’d also agree that unnecessary procedures are not as important as some suggest. And, by the way, neither are “just get rid of fraud and abuse” or “just get rid of nuisance malpractice suits.”

One question you did not address was whether your MedicareAdvantage plan let you go out of network for care and still paid for some/all of it, how significant your payments were and whether you left MA.

Oh, one last thing: of course, I’m very glad you survived. But in this current environment, do you think hospitals will survive? I’ve heard some pretty dire predictions in the past. 🙂

Michael

Member
Jeff Goldsmith
Aug 23, 2017

My MA plan, Humana, did not impede my care for five minutes, and rapidly approved my traveling to regional referral centers for my care. They were really responsive, and actually sent me frozen, high protein meals to help me regain weight after my cancer surgery. Five stars on their STAR rating for this one Medicare patient.

I was out of network for Virginia for three of the five surgeries, but Humana had contracts with every place I went. Won’t get into the financial details except to say that I did not meet my $6700 deductible in any of the three years (15,16,17), though we still have, gulp, four months left in 17.

Hospitals are under a lot of stress right now, but stress is good for organizations. It keeps them from falling asleep. We need them to survive. . .

Member
Aug 23, 2017

Nice blog. Got the details information about health care. your account addressed the issue which our doc and system face and why should we thankful to them. A detailed and well informative blog

Member

A very good account of what is so wonderful about our health care system….something easily forgotten as all of us try to focus on making it less wasteful/costly and evolve to better deliver value to society.
….however, I think your critique of both progressive and conservative criticisms is a tad too simple and defaults to broad prescriptions for social change/improvement. Few dispute that much of the health care consumed is wasteful, even harmful (Rand 30%….Hadler as much as 50%). You even make an allusion to that by noting “whose Neuroscience Institute has a national reputation for telling patients they don’t need surgery”. It is a deep system problem (Hadler’s Citizen Patient takes on all the system elements that lead to the problem…a sobering read)….beyond simple blame of thoughtless patients and greedy docs…..
But your account reminds us we should remain thankful and in awe of what our doctors can do and acknowledge that with all the system problems, the profession remains an exalted one and has attracted the brightest and most altruistic amongst us.

Member
Jeff Goldsmith
Aug 23, 2017

But remember Rand’s famous and largely ignored coda- that patients aren’t able meaningfully to discriminate between necessary and unnecessary care. We are right back to the trust question- do we trust the professionals we work with to tell us the truth, and to care for us responsibly? I think the economists have so thoroughly dominated this discussion- from “moral hazard” onward- that we never develop the nuanced view of this complex exchange that we really need to make sensible policy. How do we evaluate and nurture the trust, and the professionalism that sustains it?

As I said in the piece, I wasn’t a fricking consumer; I was drowning in pain and risk, and paddling hard for some clear air. . .

Member
Steve2
Aug 23, 2017

You make a good point about the economists dominating too much of this discussion. While they add an important element, it is pretty clear to me as a practicing physician, that when it comes to major medical decisions (and often minor ones too) people just don’t behave like homo economicus. We should look more at how people really behave than assume they will follow some economic model. Set lower prices for a new car and a lot of people will drive an extra 15-20 minutes to take advantage of that. Drive that extra for cheaper health care? Not so much.

Steve

Member
Jeff Goldsmith
Aug 23, 2017

Or that I would have gone to a place I didn’t know or completely trust for my spine surgery if it saved me $1000 on copays. . .

Our conservative friends carry around this mystical faith in the Lasik model of cost reduction- if we just had “transparency” and everyone had “skin in the game”. They need to go use some serious medical care and see how their experience squares with their tin pot theory.

Member
Brad F
Aug 22, 2017

You wrote a beautiful piece, Jeff. Please submit this to the NYT or WaPo. It needs and deserves a wider audience.
Brad

Member
Jeff Goldsmith
Aug 22, 2017

Times wasn’t interested . . .Really appreciate the kind words!

Member
pjnelson
Aug 22, 2017

Shame on the NYT.

Member
Brad F
Aug 22, 2017

Heathens

Member
Aug 22, 2017

Agree.

Member
pjnelson
Aug 22, 2017

I share the chorus for your story. Our nation’s scientific mandate for the healthcare of Complex Healthcare Needs can be spectacular. You no doubt survived based on your life-long commitment to healthy living. While acknowledging this as spectacular, it also is affirmed by the presence of so many people who come from foreign lands to our university based healthcare systems. Concurrently, we have largely ignored the humanitarian mandate for the health care of the Basic Healthcare Needs of each citizen, community by community.
.
Ultimately, the over-all cost and quality problems of our nation’s healthcare will not be solved without FIRST a, locally initiated and driven, community by community strategy to assure that enhanced Primary Healthcare is equitably available for each citizen. SECOND, a concurrent strategy will be required to support a community by community managed process *) to mitigate the locally occurring social adversities that drive Unstable HEALTH and *) to augment the locally prevalent level of Social Capital as a basis to improve each citizen’s ability to solve the social dilemmas that regularly occur within the civil life of each community. We can not expect our nation’s healthcare industry to successfully shoulder this burden alone.

Member
Aug 22, 2017

That is simply excellent.