Top 10 Ways to Be Smart When Helping Loved Ones Journey Through the Medical Services Industrial Complex

Monday, September 9, 2013 at 12pm
By John Friedman

One of the central roles of a financial planner is that of being a guide — of helping clients find and then take their own unique, and hopefully best and brightest, path through the external financial world out there. We are, after all, all of us forever in its force field, every moment of every day.

That external financial world is a big mystery to many folks. They understand what it is to make a living and (sometimes) what it is to live within ones’ means, but they do not understand all that much about taxes and estate planning and retirement planning and insurance and investing, etc., etc., etc. That’s because it’s all wicket complicated and, though surely the Internet has helped, even with that fine medium’s able assistance, most folks can use some help putting that fire-hose flow of information together into something that makes sense for them and is a bit more bite-size.

So when it comes to navigating the external financial world out there — the commercial part of which I call the Financial Services Industrial Complex, or FSIC for short (pronounced EFF sick) — it often proves helpful to just have some help.

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As a longtime student of the FSIC, that’s a big part of the service I provide. It’s what I do.

As many of you know, I am also a longtime student of another huge industrial complex — The Medical Services Industrial Complex — though my study of it came about in a very different way. My study of the FSIC came about because . . . well, just because that’s the way I was and still am wired, but my study of the MSIC (pronounced EM sick, and, ahh, t’is a nice abbreviation, t’ain’t it?) came about through necessity, as I helped various loved ones make their way through the MSIC.

The MSIC and the FSIC have much in common. Both are big and complex and scary for many folks. Both, I would argue, have been badly hobbled by greed. Both, I would also argue, hurt more people than they should (with the FSIC hurting a far greater percentage than the MSIC, but that is faint praise indeed!).

And, like the FSIC, you better believe that the MSIC is a big part of people’s financial world. Most people doing retirement planning, for example, have a lot of fear centering on the MSIC in their later years — about whether it’s going to break their financial health (and, though technically speaking “long-term care” is not “medical” care, in this context I include long-term care facilities within the MSIC concept).

And then there’s also the Insurance Industrial Complex (with the also very appropriate abbreviation IIC, pronounced ICK). The IIC is where the MSIC and the FSIC have, with totally unholy results, cross-bred for generation upon generation. It is, as most of us are well aware, an abomination, possibly more responsible for the sorry state of the MSIC than anything else.

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My wife and I have a dear friend who is currently deep inside of a big, gnarly, complicated MSIC journey of the sort you never want to be on (but which most of us will most assuredly be on sooner or later) and, talking to this loved one and the loved one’s spouse over the weekend, it got me a’ hankerin’ to put down a list of suggested MSIC guidances — a list of the things I’ve learned over nearly two decades of heavy-duty MSIC-interacting when a loved one is very sick.

I learned many of those things the hard way, because, as best I can tell,  I was not a particularly good guide through the MSIC when first called upon to act in that role — not a natural at it — but over the years I think I’ve learned quite a bit, and can hopefully save you, dear reader, some time and some heartache and some anguish by maybe, just maybe, helping you bypass a bit of the learning-it-the-hard-way part of your own learning curve.

The list is most useful for people helping very sick loved ones go through their MSIC journey, but it can be of use to all people who . . . know people with physical bodies.

And now it’s on to the show.

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Top 10 Ways to Be Smart When Helping Loved Ones Journey Through the Medical Services Industrial Complex

1. Assume that information will never flow to where it needs to be. The Internet has changed everything, with a couple of exceptions, both, unfortunately, relevant here. First, the MSIC information landscape still consists mostly of islands of data, an ungoshly proportion of which is in paper form and not easily transported hither and yon as electrons. This sad situation is changing, but it will take a long, long time before medical information can be found where it needs to be used. So you need to assume that everyone inside the MSIC will not have access to the information they need. Take it to them. I mean that literally. Do what you can to have your own database, and take it to those who need it physically and/or send it to them by hook or by crook or via email.

Note well: you are not subject to HIPAA, a law that might have many salutary impacts, but which also makes needed information flow more difficult than it otherwise would be. So while the MSIC is hamstrung, partially due to the Health Insurance Portability and Accountability Act , when it comes to getting info where it’s needed, you are not so hamstrung once you get the info (how Congress managed to not have another P in the name of that law — for privacy — is beyond me, because that seems to be the main thing HIPAA is about).

The other exception to the Internet-changes-everything meme, wouldn’t you know it, is the IIC — The Insurance Industrial Complex. You have to be on top of its involvement, e.g. by making sure you are up to speed on what the insurance provider(s) involved in your loved one’s MSIC journey will and will not cover and what they will authorize and will not authorize, so that you avoid finding out the hard way after the fact. For crazy instance, sometimes the same service is covered if it happens in a given way in a given place and would not be covered if it happened in a different way or in a different place. Such is the way of the incredibly inane IIC. The good news is that MSIC folks are often aware of these stupid idiosyncracies, and will often help you avoid the pitfalls, but not always, so you have to make sure you are on top of it all. The bad news, then, is that it, too, is wicket complicated, so that if you’re on top of, say, 80% of the IIC information, you’re doing quite well!

2. Assume that doctors will not have time to speak with you. In all my years of MSIC’ing when someone was very sick, I have never had a conversation with a doctor that did not feel like a rushed conversation. Expect that state of affairs and you will be less bummed. And figure out who knows almost as much as the doctors and look to them as good sources of info within far-less-frantic conversations (nurses and physician’s assistants come to mind).

3. Always use lists. Always walk into a conversation with a doctor with a written list of questions. ‘Nuff said.

4. Always end any list of questions with a blunderbuss question. Here’s one I learned as a young lawyer: always include a blunderbuss question at the end of any list of questions you are going to ask a service provider. A blunderbuss question goes like so: Are there any questions I would have been smart to have asked, but I didn’t? What are they and what are the answers? This is important because, in the MSIC, it’s often a matter of no askee, no gettee. The blunderbuss question, though, through a triple-flip Salchow-Lutz reverse-double-dosie-doe, effects at least a partial shift of the burden of completeness to the MSICees!

5. Expect errors. We all want to see perfection when health is involved. But you’re well-advised to not expect it. Architects use a margin of error concept that states that 2% is within their standard of care, i.e., that they’ve done a good job if, when designing something as complex and as one-off as a building, their errors amount to no more than 2% of the overall cost of the project. I doubt that MSIC folks think along these lines, but, by my experience, in the MSIC world something along the lines of a 10% SNAFU rate seems about normal, though not at all acceptable and not anywhere close to where the standard of care should be. I guess at the 10% SNAFU rate because, in my experience inside the MSIC, it’s rather Keystone-Cop’y fairly often, so that for every, let’s call them MSIC events, one out of ten would be FUBAR. Often those FUBAR goof-ups have to do with information not being in the right place, which usually amounts to inconvenience and delay and confusion and avoidable consternation rather than health risk, but bigger goof-ups happen too, sometimes having life and death ramifications., and always having woe and worry and anger and outrage ramifications

6. Expect ambiguity. The human body is the most complex of all living organisms, which means that it is the most complex thing in the universe we know. Within it you will find processes that encompass everything from quantum mechanics to Newtonian physics, and from digital information processing to analogue. information transmission. And that means that sometimes it does things no one understands. So it’s somewhat rare within the MSIC to have a straight yes/no, black/white sort of situation. Doctors, for example, will often differ from one another on what the best course of action is (that’s why second opinions are common). Medications, for another example, often interact in unexpected ways in given people, meaning that, even though a given person might really benefit from taking ABC drug and also really benefit from taking XYZ drug, s/he cannot take both ABC drug and XYZ drug at the same time, which is a real shame, but also a common occurrence.

7. Be polite and, when necessary, be pushy. Doctors and everyone else within the entire MSIC deserve your respect when they earn it and do not when they do not. When you have someone within the MSIC that earns it, c’est bon. That person is a huge asset to have as you make your way through the MSIC; treat that person with respect and try to always be efficient in using that person’s always-too-short time. But when you’re dealing with a person within the MSIC who does not earn your respect, then be assertive. Insist on that person providing better service. If that person does not get on the ball, fire that person. Go over that person’s head. Push push push. Demand demand demand. The stakes are high. Bring your biggest bulldog to bear.

8. Division of labor. The primary role of the person whose body it is that’s going on the MSIC journey is simple: it is to be the patient and that is all. If the patient wants to do more than lie down and be a patient (as almost all do . . . ) then that is all well and good, but the patient must not tow that line alone, and most patients should not even be the main driving force of large swaths of the MSIC experience. Instead, the patient needs an advocate, a role usually filled by family members or other loved ones; it is the advocate’s role to totally own the upsetting parts of the MSIC, insofar as the un-fun interactions and the being-pushy part are concerned. Many elders, for instance, are often freaked out by a lot of the paperwork load, including insurance and medical releases and such; the advocate can help there by shielding the patient from all the paperwork (note well: advocates need to make sure that they have full access to all information about the patient; there is often some HIPAA paperwork involved in making this so!).

I believe that the ideal team for an MSIC journey consists of three people: (1) the patient (role: being s/he who is poked and prodded and helped along towards improved health), (2) a spouse or parent or best buddy (role: providing love in all its many guises, together with comfort and cheer and tea and sympathy) and (3) advocate (role: interfacing with the MSIC, including being very nice and helpful when doing so helps the patient receive great care, and gladiating when it does not and gladiation is instead what’s required). The first role is always a solo role; the second and third roles can be filled by multiple parties, which, fr the reasons described in the next section, is often a wise way to go.

9. Pace yourself. I am pretty sure that interfacing with the MSIC is fatiguing in a unique, profound, deep way. It can also take a long time. Expect your loved one’s route through the MSIC from start to finish to last longer than you can possibly imagine, and then double the longest period you can possibly imagine it taking, and then double it again, and hope that it doesn’t taken longer than that. So get ready for the long haul. Also, listen to your body and know when you are too tired and need some respite, which in this context is a common term, meaning getting away and taking some time for yourself — a day at the spa or a few days away somewhere at least an hour away. Cut yourself all sorts of slack; there is plenty of time later for you to return to your more righteous, saintly ways! And do consider doing your role as part of a tag-team.

10. Get on with it. Time marches on. Sometimes the right thing to do is nothing, but that is only the case if a doctor (or, preferably, two or three) has told your loved one to chill after poking and prodding and scanning and blood-taking and otherwise thoroughly testing your loved one. Most other times whatever process is making your loved one sick is going to continue and, in that continuing, make them sicker, so when something is wrong on that front, confront it you must. Let it slide do not.

And if surgery is involved, know that the whole goal of surgery is to make your loved one healthier, and you need to help your loved one understand this to be the case, as in, Yes, it’s scary to be worked on like that, but, yes also, you’re getting customized — [choose among the following words whichever are appropriate for the particular type of surgery your loved one is having: better, neater, cooler, spiffier, shinier, newer, longer-lasting, less painful, etc., etc., etc.] — and you’ll end up healthier than you are now. Why, you know what a lot of people who’ve had surgery say to their friends not long afterwards? They say, “Why on earth didn’t I do this sooner? I feel so much better!”

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There is a reason that soap operas often revolve around doctors and hospitals: it’s because few things in life are more dramatic than seeing a loved one take a journey through MSIC-land. High highs and low lows await you. Fights, too, probably, both with the MSIC and, if you’re normal, with your loved one, too.

The term “Kafka-esque” will take on new meaning, and you will have a new sort of patience, and in larger reserve than you ever thought possible, often borne out of simply having to have it for your own damn good. You will often not sleep well, and you will be quicker to anger. You will not look your best. You will feel their pain.

You will make mistakes and have regrets. Things will become obvious to you in hindsight which were not even on your radar when you could’ve done something about them. Keep that 10% SNAFU FUBAR idea in mind.

And know that there is nothing more loving that you can do for your loved one than to be there with — and for — your loved one at that time. And know also that the journey will change not only your loved one, but you as well, and that it’ll be among the most profound — and life-affirming — things you ever do in this ol’ life of yours.

Because even when the end of the road is death, as it always is eventually, a journey through the MSIC is almost always mostly about life. And, to boot, very, very often the MSIC helps make the road, at the end of which is death, considerably longer — putting death off considerably further out into the future, keeping it at bay . . .

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