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Advanced Directives and MAID Laws Must Be a Part of Healthcare Reform

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by Kellen Squire

There’s no way to have a discussion about the state of the healthcare crisis in our country without discussing end-of-life care. The Kaiser Family Foundation notes that about 80% of the 2.6 million people who died in the United States in 2014 were people on Medicare, making Medicare the largest insurer of health care provided during the last year of life.

This confirms a trend that has remained steady for decades- roughly one-quarter of traditional Medicare spending for health care is for services provided to Medicare beneficiaries in their last year of life.

But the costs we endure as a society from this state of affairs are much more than just fiscal in nature. And honestly, as a nurse, the cost arguments don’t factor for me- at least, not compared to the human elements we’re not addressing appropriately.

It’s something I see in the emergency department quite frequently, as we’re generally where these “final journeys” begin. For a fair reflection of the above statistics, few of the patients entering their last year of life know it ahead of time. It’s an eighty-four-year-old female who falls at home and breaks her femur, doesn’t rehabilitate well, gets a urinary tract infection, and becomes septic. Or the seventy-five-year-old man who suffers a massive heart attack, is resuscitated in the emergency department, is sent to the cardiac catheterization lab to get stents placed, but then gets sent to another facility for risky cardiac bypass surgery.

But it’s also the ninety-one year old found down at home for an unknown amount of time that EMS and the ER code for an hour or two; who get every bone in their chest broken by chest compressions until pink, bloody foam sprays out of their mouth with every pump. Who get intra-osseous IV devices jammed into the bone marrow of their humerus and tibia. Who’ll get a breathing tube jammed down their trachea. Who we shock multiple times with increasingly aggressive amounts of electricity. And who, if we manage to resuscitate, will spend days, weeks, or even months in our ICU before eventually succumbing to multi-organ dysfunction.

Right here is where you’ll hear hucksters and jerkoffs like Sarah Palin scream “DEATH PANELS!” and “CARE RATIONING!” This was the cry they undertook during the writing of the Affordable Care Act, and, as a result, a proposal to allow Medicare to pay doctors, physicians assistants, and nurse practitioners to counsel their patients on end-of-life was shelved.

This is something I will never, ever forgive Palin and her enablers for. For the price of her fifteen minutes of fame, tens of thousands of people and families suffered horribly. And even though, in a rare display of bipartisanship, Senator Mark Warner and Senator Johnny Isaakson stepped up to help fix this issue, only about half of Americans 65 and older today have any sort of advance directive or living will in place.

We can certainly talk about the fiscal costs of those above situations; those are all real cases I cited, cases I’ve seen personally, that ended up costs hundreds of thousands of dollars each- a cost borne by all of us via Medicare. It’s a conversation that needs to be had.

But I’m more concerned about the holistic costs we endured. The spiritual costs. The cost in human dignity and suffering.

If we don’t know what you want done for you, we have no choice; we have to do everything. We don’t get to make that decision- which is as it should be. Sometimes, we can rely on families to help make those decisions, but if you didn’t express that in an advanced directive, then even that doesn’t work sometimes.

I’ve been asked if families make some of these end-of-life decisions based solely on Medicare, and yes- it’s sad, but it does happen occasionally. Without an advanced directive, families will sometimes simply shrug and say, hey, if Medicare’s paying for it, why not do everything? ICU, surgeries, advanced treatments. But the majority of the time, it’s simply a paralysis of not knowing what their ill family member would have wanted done, and not wanting to make the wrong decision for it.

It’s also not knowing the hell it often means putting patients through in a desperate attempt to save their life. I was mentioning a scenario where we were “coding” a patient to a friend of mine the other day, and he – an incredibly intelligent politician with multiple degrees – stopped me and asked, “What does coding mean?” I think this is an important delineation because I’ve had people scoff at me and suggest it’s only “dumb” or “ignorant” people who can’t make these sorts of decisions. But that’s not true. If you don’t have the medical background or experience to understand what that means, it doesn’t matter how “smart” you may be; you won’t have a frame of reference to understand. And the things I described above are only the tip of the iceberg of what we put patients through in trying to save their lives.

Human beings deserve to be allowed to die with dignity if they so desire; plain and simple. And the Commonwealth of Virginia needs to stand behind enabling every Virginian can have that conversation with their care providers, no matter what it takes.

Starting at age 18, once a year, triggered by a notice on your electronic medical record, or if you see you primary care physician for a yearly physical, or something, a medical provider (MD, PA, NP, DO) should have to simply ask you- “What are your wishes to have done to you in a life-threatening circumstance, like if you go into cardiac arrest or have a stroke?” Maybe I’m not sure yet, and punt the question. Maybe I want everything done. Maybe I don’t even want to have that conversation with my doctor- fine! But then it’s my decision. And all we’ve done as a society is help that conversation be able to happen.

Beyond ensuring this conversation can be had between everyone and their primary healthcare provider, we also need to pass a MAID law here in Virginia- Medical Aid In Dying. Anyone who’s seen the suffering things like terminal cancer wreak on human beings understands the need for it; it’s one reason why I have so much respect for hospice professionals, who do a job I could never, ever do. It only takes seeing a patient who’s lost a hundred pounds in weight from their prime, in a diaper, drooling on themselves, come into the ER with a small bowel obstruction because while we could get them enough narcotics to drug them into a stupor, we couldn’t allow them the personal choice to end things before they get to that level.

It’s certainly not how I intend to go out; I absolutely refuse to put my family through that. But that’s the whole point- I should be allowed to make that decision. My doctor should have to ask me about what my wishes are if I get into a situation like that.

These are tough issues that nobody likes to tackle- I know that better than most- but that’s exactly why it’s so important we do so. Remember, folks, despite all of our medical advances, the death rate is still 100%. It’s never fun to consider one’s mortality, but it’s still imperative that we do so.

Wherever we can, we have an obligation to empower and enable Virginians to pursue the life and make the decisions for themselves that they desire, regardless of how we might personally feel about it. And legislators can never go wrong when they stand up for that principle and do what’s right.

Cover image by Chris Silas Neal