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Guest editorial: Why you should make end-of-life care decisions now

Modern medicine has developed the God-like power to stabilize the vital signs that spiral out of control as a person approaches death, and to then keep that person alive despite their inability to breathe, eat or drink. It wields this power liberally.

But the American healthcare system never taught the public that preventing a natural death often results in a wholly unnatural life.

As an ICU nurse, I am haunted by memories of patients who were stabilized in intensive care so that their catastrophic injuries or diseases did not kill them, but who were left unable to communicate or do anything but receive medical care.

I think of a young woman whose family was so torn apart over whether to take her off life support after a hemorrhagic stroke left her comatose that by the time she died of a complication, weeks later, nobody came to be by her side.

When she was first admitted to the hospital, her family crowded her room. But when she didn’t get better, they drifted away. She stayed, her flesh peachy after weeks of tube feeding, though speckled with the tiny bruises of blood-thinning heparin shots.

She died of a perforated bowel leaking fecal matter into her abdomen and causing sepsis. Her family had declined emergency surgery over the telephone, giving permission for her to die. At the very end, there was only a nurse, dialing up morphine as the patient’s organs failed.

I can only imagine the immense suffering her family endured, and I know that every time they were asked for a decision regarding her care, they tried to make the right one.

But I wonder: If what was left of the girl in the hospital wasn’t enough to come say goodbye to, if she was too far gone to hold hands with as she drew her last breaths, why was she still there?

I also think of an elderly patient with a history of strokes and dementia who was brought to the emergency department after another large stroke. He was already completely immobile, dependent on care and unable to communicate. His breathing was inadequate and his heart went into a dangerous rhythm — dangerous if the goal is to stay alive. He was intubated and taken to the ICU.

The poor man was awake. He would occasionally squeeze a hand when asked to, but he never responded to questions. Because there was no fear of him pulling out his breathing tube, he was on minimal sedation, getting drugs only when he breathed rapidly or started “bugging out his eyes,” as one nurse put it. Aside from a list of diagnoses and meds, there was little information in his history, and no family contacts.

When asked directly by the ICU, the patient’s case manager and his general physician both refused to serve as his proxy and would not participate in a conversation about whether the patient would rather switch from life-sustaining measures to “comfort care,” which would have meant removing the plastic tube from his trachea and allowing him to die naturally, with supportive care and medicine to make him comfortable. So we kept him alive.

When I am face to face with a patient like this — someone who will never again be able to communicate, and who has been placed on the treadmill of continuous medical care — I feel the same type of shame as when I walk by a cold, crippled homeless person on the sidewalk. The wrongness is just as obvious.

When I stick a needle into his arm, or a catheter into his urethra, it feels as though I am kicking a homeless person.

The incapacitated ill are profoundly disenfranchised, and the manipulation of their bodies is extraordinarily invasive and consequential.

It’s a moral crisis hiding in plain sight, yet the people involved claim to be mere cogs in the machine. When I asked an ICU attending physician why families aren’t given data and clear explanations of probable outcomes rather than best-case scenarios and “only time will tell” conversations, he said, “palliative care people can do that. In the ICU, we don’t really have time.” Another physician mentioned the “inertia of the system.”

It falls to the general public — the patients — to take the initiative in reforming the excesses of modern medical care.

You can determine your fate by completing an advance directive. This is a legal document in which you can explain what measures should be undertaken if you are unable to communicate; name a healthcare proxy who can communicate your wishes to medical providers; and lay out how you envision the end of your life.

Medicare began reimbursing physicians for advanced care planning in 2016. And many states have adopted POLST programs — Physician Orders for Life Sustaining Treatment — in which medical orders can be written in advance. Still, two-thirds of Americans do not have any type of advance directive in place.

These documents are critically important.

If you don’t want to be kept alive on life support, you can indicate as much in your advance directive. If you want the longest life possible no matter what, you can affirm this wish. Either way, families and care providers should know. It will help move our medical system toward a more humane approach to end-of-life care.

Guest editorial: The Russia story so far

Stephen Bannon nailed it. The Beelzebub-like Breitbart head and former presidential adviser declared that President Trump’s May 9 dismissal of FBI Director James Comey was the biggest mistake in modern political history. That act, the 2017 equivalent of the Watergate burglary, led directly to a criminal investigation by special counsel Robert S. Mueller III that imperils the presidency and may yet force Trump from office.

As an extraordinary political year draws to a close, several highlights of the Mueller probe stand out.

The case that Trump obstructed justice when he pushed Comey to shut down the investigation of his former national security adviser, Michael Flynn, has gone from strong to overwhelming. In the last two weeks, two critical pieces of evidence have emerged: 1) the testimony of FBI Deputy Director Andrew McCabe substantiating Comey’s version of his interactions with Trump; and 2) the news that White House Counsel Donald McGahn told the president of Flynn’s likely criminal behavior just days into the administration.

We also know that multiple figures in the Trump circle consorted with Russia and lied about it, several under oath. The Washington Post has calculated that members of the Trump campaign interacted with Russians at least 31 times throughout the campaign.

And we know that Mueller has begun to focus on the money trail, crossing Trump’s “red line.” Both Trump and his son-in-law, Jared Kushner, seem to have relied on Russian financial entities to shore up their troubled empires — and Mueller is looking into those ties. Of near equal significance, a separate federal prosecutor’s office, in the Eastern District of New York, has also entered the fray.

Trump has set the stage for his downfall with his paranoid contempt. He has debased the political dialogue so enormously we sometimes don’t even notice it; we have gotten used to his meeting every kind of charge with porcine squealing or outlandish lies — and essentially getting away with it. But now comes Mueller, patient and opaque, closing in on him little by little and forcing an eventual reckoning with, of all things, the truth.

What does all this portend for 2018?

First, Mueller’s investigation of pre-campaign financial shenanigans, as well as the anticipated trials of former Trump campaign manager Paul Manafort and his deputy Richard Gates, mean the probe is likely to last into 2019.

Second, absent a successful effort to remove or emasculate Mueller (about that, see below), more criminal charges are on the horizon. Kushner may be the most immediately vulnerable, and Donald Trump, Jr. is surely in Mueller’s sights. Mueller could also move against some lesser-known but important figures in Trump’s orbit, including Trump attorney Michael Cohen and former foreign-policy advisor Carter Page.

Third, as Mueller edges toward a possible referral for impeachment, the focus on Congress will increase. All indications are that Republicans will not even try to make a robust defense of the president on the merits. Instead, they will focus on trashing Mueller and working out an end-game solution short of impeachment, such as censure.

Meanwhile, the risk grows that Trump will exercise some sort of nuclear option to rid himself of the whole business. Laying out Trump’s avenues of counterattack would require another column, but the president has multiple levers beyond the most incendiary tack of ordering his deputy attorney general, Rod Rosenstein, to fire Mueller. He can try to replace Rosenstein with a pliable stand-in who will ride herd on Mueller; he can rescind the special counsel regulations that protect Mueller; or he can simply attempt to fire the whole team and lock the doors as an exercise of raw executive power. Any one of these would result in bedlam and court battles that would likely tie up the probe for months.

There is a sort of jubilation on the left these days watching Trump get knocked all over the ring. But we should keep in mind that these are troubled times for the Constitution, with the president of the United States, who still has the support of at least one-third of the electorate, debasing his office daily and telling repeated lies to the American people.

Indeed, given Trump’s Orwellian approach to truth, vilification of the free press, savage attacks on his underlings and enforced cult of personality, the country arguably has taken a quarter turn toward the sort of authoritarian regime we rightly deprecate elsewhere.

While the odds that Mueller will recommend impeachment charges have greatly increased, removal by the Senate remains a long shot. That means that for Trump, but also for the rule of law, we’re not even at the midpoint of a very long winter.

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