This Isn’t Us
The real talk - I started this blog post about 1.5 weeks ago. In the last few weeks, in addition to my usual constant single mother working an emotionally draining job life (hats off to the women who do this with more than one kid, although the puppy feels more like 2 kids right now because he’s 75Lbs of puppy), I’ve learned one of the few patients I am close to is dying of lung cancer, someone close to me (and mother to 2 young boys) has stage IV colon cancer and a few other things I just can’t write. Between the endless BS at work (by BS I don’t mean actual human/patient issues, I mean the inane paperwork and regulations that take me away from actual doctoring but are demanded by medicare and insurance and all the government), the charting that is meaningless, trying to be present to my son, trying to get better at “self care”, and managing without any other adult to consistently pick up some slack, I’m just barely able to manage myself at the end of the day, much less write a blog post. I dropped my son off at 2 weeks of sleep away camp in the mountains today. Instead of coming home ready to be productive, I’m an emotional train wreck about it. So the following is a mix of a prior thought out unfinished draft, and then a free for all. I’m doing my best. And that’s that.
Before you read on you should know this post has spoiler alerts about the amazing show “This Is Us” that ran on NBC and just wrapped up with it's series finale in spring of 2022. Ok, you’ve been warned. Also of note, I loved the show. Admittedly I cried in every single episode of it ever. Still, it was an amazing show. The title seems so inviting, like when they mean “This Is Our Family” it feels like maybe it could be any family in America (once you get far enough in). It really felt like “This IS Us”. They tackle big issues, including parenthood, marriage, divorce, death of a spouse, racism, homophobia, disabilities, sexism, substance abuse, veterans’ trauma, child rearing, and towards the end they make a solid attempt at Alzheimer’s, and caring for a loved one with Alzheimers Dementia. I commend the writers and actors for the parts they solidly portrayed as universal experiences.
In reality, the vast majority of American families do not have the resources or ability to build a mountain house specifically for their ailing mother and then hire 24/7 skilled nursing care to assist in care taking. In reality, it is beyond challenging, emotionally, physically, and financially to care for an aging parent or loved one with any form of Dementia, and typically requires eventual placement in a facility such as a nursing home or Assisted Living Memory Care. Our insurance system, including Medicare, does not help the situation. Most Americans lack a basic understanding of how both medical care (like physician and provider services) and basic care giving are funded in this country. So I’m going to unpack some of it for you.
While it’s nice that we have at least a social health system for the aging and disabled (wtf we should have a proper Universal Healthcare system, so when I say “nice” I’m being sarcastic AF), Medicare is unfortunately a very dangerous system for the population it serves. Other than to cut payments to physicians, it has not revamped it’s structure almost since it’s inception. Medicare, which most insurances base their practices after, is a Fee-For-Service system. This means they think a service is worth X amount from a doctor, and Medicare will pay that doctor no more than X amount for the service. Also if the doctor tries to charge more than what medicare says they’re worth and they participate in Medicare, they commit fraud and get in trouble. The other catch is that medicare doesn’t really think a physician’s time is valuable just for their expertise, brain power, etc (like 4 years of medical school, 3 or more years of residency and fellowship working 80 - 100 hr weeks at < 50K per year with student dent accruing apparently isn’t worth much unless you do something surgical). It doesn’t pay for time, not meaningfully anyway. Fundamentally it is structured to pay for procedures and high volume patient turnover in face-to-face visits. So if you’re wondering now why your doctors never seem to be willing to refill a prescription without seeing you, or seemingly doesn’t have the time to listen meaningfully, it’s because if they did that consistently they would literally never get paid. The best and most irreverent example I can give you is the only time I ever was caught on film doing standup comedy. Click here if you want my real comparison for what it’s like being the kind of doctor I am. Also if you’re wondering why it’s so hard to find an actual MD or DO as your PCP or even specialist these days, one should note Medicare is actually working very hard to ensure you won’t. Nurse Practitioners and Physician Assistants are much cheaper labor (for a reason, the training is WAY less). But Medicare is stingy as wow. They’d prefer to pay less in the short term, even when it costs the system more in the long run.
Then there’s nursing homes. Thanks to Medicare, you are required to theoretically have a physician overseeing your care in the nursing home setting (not in Assisted Living or Memory Care Assisted Living of note). Their regulations are strict, PC, and sometimes useless other than giving the bottom feeding civil lawyers reasons to encourage grieving families file lawsuits. Still, another reason Medicare wants to push home based care is that there are no regulations requiring Physician time, the cheaper the better. I’m 99% certain the nursing home industry is more highly regulated than the nuclear industry. However, from the physician perspective, it’s one of the lower paying fields with the highest amount of drama and nonsense. So, like, no one wants to do it. In CO, our governor is on a huge push to eliminate nursing homes all together (something about him having a personal vendetta after an experience with his own mother in a nursing home despite him being of the economic class where he could have paid to give her 24/7 in-home care). The problem is, there isn’t a realistic alternative to the aging crisis. In-home care costs more than the average American can pay. And even for some that could, the emotional tole can wreak havoc on one’s personal and professional life. Of course this is America, so this means that toll largely falls on women, who are the default caregivers.
In American, if you don’t have an amazing Long-Term Care insurance plan (they stopped even selling/giving those about 15 years ago when they realized how many Americans would need to utilize them), you have to spend down your assets until you qualify for Medicaid, and only then will Medicaid then pay for your room and board in a nursing home. Medicaid (state-based) covers room and board. Medicare (federal) covers medical care in those settings. Unfortunately there are very few Medicaid covered Assisted Living Centers (nursing homes have a nurse on 24/7 and a required nursing to resident ratio, whereas Assisted Livings do not have a nurse on site 24/7). So for anyone who is not the very top maybe 5% of the population who either saved enough in retirement or just has enough money to pay for in-home or Assisted Living level of care, you need to just hope you don’t live long enough to need a nursing home that eventually medicaid will cover in your later years. Sadly though, because Medicare really only pays to do things to people despite the actual cost rather than paying meaningfully to have physicians take the time help you understand the choices, chances are, you will live long enough to need a nursing home.
Shoot, I haven’t figured out how to word count yet on squarespace, and this seems long. So I’m just gonna post this thing. Because if I try to be too perfectionistic it won’t happen. Also, I wrote this other thing in 2015 that I think is even longer, but gives a lot of context and holds true. Just in case you’re bored.
If you read this far, you are a rock star. And if you didn’t, you might also still be a rock star and this blog of truth was just too much or wordy for you at this point in your journey.
