For Better or For Worse

Traditionally, wedding vows are along the lines of “I take you to be…blah…blah…for better or for worse, in sickness and in health, until death do us part.”

Having been through the “or worse” and “in sickness” bits more than once, I can tell you that most people, when they get married, don’t want to deal with that part and don’t expect to deal with that part.

In the hospital.

By that I mean, neither partner envisions themselves to be the “or worse” and deep down does not really want their spouse to go through the pain of having to suffer though the worst part of themselves.

I bring this up now because my wife is in the hospital, and has been for over a month, due to brain hemorrhage related to her chronic health condition. It is an exercise in patience and endurance for both of us. The relief provided by medication and proper health care (her) and an understanding employer (me) is appreciated, but it does little to alter the fundamental terribleness of our situation. 

Of course, people claim to want a spouse who will stick with them through thick and thin. But it’s like insurance. We are in favor of the idea of having it, as long as we never actually need to use it.

In reality, people don’t want that. They don’t want to face the ugliness of it, or the grim reality of it.

Because the spouse who is “in sickness” is not sexy. And the grieving spouse who is trying desperately to hold it together is not sexy. The sights, the smells, the broken body, the seemingly endless bedside vigils.

Absolutely none of it is sexy, believe me (unless you’re into that kind of thing).

Of course, popular culture would have us believe otherwise. We have movies such as Dying Young and Now is Good and While You Were Sleeping, none of which I have seen, but I’m pretty sure they gloss over the reality of what they think they are depicting.

A more realistic take on such things is a book titled Alice & Oliver, by Charles Bock. Read it – I highly recommend it.

So if ever you are tempted to think that a dying lover is somehow more attractive, or the long-suffering spouse or family member is somehow attractive, stop right there. They aren’t, and never can be.

Trust me.

Health Care and Patient Dignity

So let’s say you are having a medical crisis. Maybe you were hit by a car, or one of your organs are failing, or you suffered a ruptured cranial aneurysm.

The last thing you will be thinking is “how are these doctors and nurses getting paid?”

Trust me.

Of course doctors and nurses must be compensated for their time and expertise. I can’t imagine anyone thinking otherwise.

The issue is that the dying (or potentially dying) patient is not the person who is in the right frame of mind to consider the welfare of the on-duty medical staff.

As I have mentioned previously, Americans are deeply conflicted over who pays for health care. Why this is, is a tangled mess of politics, ideology, and the degree to which one believes in capitalism.

In today’s Washington Post, the art and architecture critic Philip Kennicott has a piece that asks legitimate questions about form, function, and the element of human dignity in health care.

And to that end, he says that certain aspects of our health care system are rendered more daunting than they ought to be by the “inequities in health care, the industrialization of the process and the capitalist mentality that has made what should be a human right merely a consumer service.”

It’s that last bit that gets me.

Free market capitalism relies on people being in the right frame of mind to make choices between competing options. When you are potentially dying, your “right frame of mind” goes out the window.

So how it is that capitalists want us to rely on market economics for health care is, for me, unexplained.

Removing the market from the equation seems like the better option. If you disagree, I’m open to comments.

My Experience with Applying for Medicaid Was Awful

Medicaid was created in 1965 by an act of Congress to create a health care insurance system for those who do not have sufficient means to pay for medical care themselves.

The law says that Medicaid is to furnish medical assistance on behalf of various individuals, including families with dependent children and elderly people, whose income and resources are insufficient to meet the costs of necessary medical services.

Instead what we have today is a mind-numbingly complex state-run bureaucratic system that creates barriers to fulfilling its own mission, as I learned first hand over the past year and a half.

Full disclosure: I was applying to Medicaid on behalf of, not myself, but my mother. In November 2017, my mother became disabled by a stroke. At the time she was living in a retirement community in California and had care available to her. She also is enrolled in Medicare, the federal health insurance program for all people over 65 years old.

But Medicare has limits to what it will pay for. Specifically, if someone needs medical care for a condition that lasts more than 100 days, Medicare won’t pay for it.

The stroke my mother had left her dependent on a wheelchair, unable to get into and out of the wheelchair without assistance due to a paralyzed left arm and leg, and with aphasia (or maybe dys­phasia) that disrupts her verbal speech. She now lives in the nursing home section of the retirement community. The cost of her care ate through her remaining assets in a short amount of time, leaving her bankrupt.

Medi-Cal’s cheery promotional material hides the grim reality.

At that time, the family was advised the apply for Medicaid. (The California version of Medicaid is called Medi-Cal, but I will use the term “Medicaid” throughout this piece unless the context warrants otherwise.)

Here is what we learned:

Applying for Medicaid is not easy. The State of California gives the impression that applying for Medicaid is not complicated. Perhaps it’s a bit like enrolling in school: there are some forms to fill out but it’s mostly a matter of getting the right information together. “There is no wrong door when applying for health coverage in California,” the state tells you.

In reality, applying for Medicaid is time consuming, opaque, and frustrating. So much so that there are people/organizations that serve as an advocate on one’s behalf to ensure that you get the benefits you are entitled to receive. In California, Medi-Cal’s website includes information about Enrollment Centers and Certified Enrollers that, presumably, help individuals through the process. I applied online–an option that the state implies is no better or no worse than the other options. However, the director of accounting at my mother’s nursing home said at the time that “most don’t apply that way.”

That should have been a red flag. One elder law firm says that for someone living in a nursing home who needs to apply for Medicaid, “submitting an application for nursing home benefits without an attorney’s help is not a good idea.”

Health care in retirement is expensive and insurance coverage is not guaranteed. According to at least one source, “Seven out of ten couples reaching 65 can expect at least one partner to use a nursing home. The average cost of a nursing home can range from $8,800 to $25,000 [per month] without Medi-Cal Benefits.” As noted above, Medicare does not cover care that lasts longer than 100 days (long-term care). With my mother, her health care costs have averaged about $12,500 per month. She’s at reasonably decent but not overly luxurious nursing home. In California, the statewide average cost is about $9,000 per month, or about $110,000 per year if you are paying out of pocket, which is twice the cost of paying full price to attend Harvard. And this is the average cost that would pay for average care.

Medicaid does not have an incentive to act quickly. According to the state of California, the time between a completed Medicaid application and the beginning of benefits is “normally” 45 days. However, I applied on Mom’s behalf in March 2020. It was not until August of 2021 that she was approved. Way beyond 45 days. Thankfully my mother is somewhere where her care continued while the application was pending and after nearly a year of waiting, the nursing home hired lawyers to help. I feel sorry for people who are in urgent need to receive Medicaid benefits, as the waiting must create an extreme hardship for them, and they’re unlikely to be able to afford lawyers.

Remember, Medicaid programs exist for the precise purpose of providing a way for people of low or no income to pay for necessary health care. To not deliver that looks to me like a failure to achieve the mission.

Applying for Medicaid is a Byzantine process: As I discuss further below, Medicaid has many barriers built in because the lawmakers who created or amend the laws and the bureaucrats who implement the Medicaid programs are very suspicious. Granted there is a significant amount of waste and fraud in Medicaid, but it seems that the systems put in place to try to address that only end up hurting the people who legitimately need the resources.

In my mother’s case, her paralysis and her inability to verbally communicate meant that she could not apply for Medicaid herself and I, holding power of attorney for her, was the one who did it for her. I live in Maryland and submitted the application online (no wrong door, remember?). I was subsequently told that one gets better results if one engages directly with the county human services agency, as in making an appointment and showing up in person. Of course, that is prohibitively difficult for someone like me who does not live in the county. Not to mention that there is a global infectious disease pandemic going on this whole time.

I received some items in the mail acknowledging the application and saying it would be referred to the county human services agency — a bad sign I now realize. One of the documents said this: “The Medi-Cal office in your county will contact you if they need more information.” Again, according to California, a county social services office may be in contact by mail or by phone to request paper verification if income, citizenship, and other criteria cannot be verified electronically. If that contact happened, it wasn’t with me. Frankly, I’m baffled about who they contacted, if anyone.

Shortly after that, I have received a “notice of action” letter from Medi-Cal, and it was to deny benefits because I failed to submit additional documentation that was never requested by them. It feels like I was set up to fail because they counted on the fact that I was out-of-state and therefore could not deal with the situation in person. The application I submitted was under suspicion from the beginning, and it took lawyers to break the logjam.

The bottom line for me is this: Americans are deeply conflicted over who pays for health care. While some modern democracies have implemented (successfully) a national health care system, America continues to have a slap-dash, jury-rigged system, filled with suspicion and political maneuvering.

This is at least in part because a significant number of Americans feel that one must earn or be deserving of health insurance, rather than it being a right that all citizens and noncitizen residents should have. Hence, people receiving Medicaid are receiving “entitlements” and “handouts* rather than simply receiving health care. This ambivalence, along with much hand-wringing over controlling costs, creates a system filled with empty promises.

As the elder care law firm says, “Congress does not want you to move into a nursing home on Monday, give all your money to your children (or whomever) on Tuesday, and qualify for Medicaid on Wednesday.” But what is so wrong with that? Where is the harm in that? I think this setup has little to do with any material reasons and everything to do with philosophical and political belief.

*Quotes from the report linked to: “However, the real problem in welfare is neither an accounting issue (how poverty is measured) nor bureaucratic inefficiency but the moral hazard of existing welfare programs’ tendency to discourage self-support through work and marriage.” And Medicaid and other assistance to low-income individuals are “a massive system of ever-increasing welfare handouts distributed to an ever-enlarging population of beneficiaries.”