Everything Changes

In my Johnstown days I was introduced to a wide array of music by my roommates, one of those bands would be Staind. While I was enorlled there, their Chapter V would be released. My roommate and I made the two-bus trip across the Greater Johnstown Area to Circuit City to supply our music. Anyway, there is a song on that album that stuck with me for several years after “Everything Changes.”

Those two words are now a common metefore. This months for one reason or another have become a wide array of series of changes that have occured beyond my control. In two weeks time my demeanor has changed about the events immensely. I have also had an epiphany of sorts seeing why I act differently to those close to me, so in a way that has helped too.

Several things have happened within the last two days. Yesterday, I go to the local hospital to get weighed and to workout. Because of the cold weather and Daylight Standard Time, I have been having someone transporting me as I have to be there before sunrise. Another change was that I had my workout clothes on as it was my day off. Nonetheless, my mother dropped me off and I entered the building. As I went to the chapel as I do on a weekly basis to have daily devotion and prayer, of which my cell phone is an important tool in this, I could not locate it. I searched twice and I did not panic, I took a deep breath and proceeded to head to my destination where I know a “house” phone is available to make local calls. I having my prodigy of a memory, call my mother on her cell phone who verifies that she has it and will return it to me after work. I said I would be fine until the lunch meeting with my father in a little over five hours as their was a world before cell phones. (Really?) She said she would let my dad know and we hang up.

If this happened to me five years ago, this could have been a totally different situation. One instance I remember that we were out together, and I lived with them then. When I realized my phone was missing when I was getting out with her at the grocery store, she called my phone for the slight chance that it might be in the car. When the voicemail came on, I screamed “Whoever has this phone, I hope you do the right (Expletive) thing.” I said this not realizing that message could only be heard by me as I was the only one who could (at the time) have access to to the voice mail. What I didn’t also realize was that the one who cared the most was right beside me. Reality sunk in when my we returned home and my mother made me play that message to see how idiotic it made me sound and how I acted. It makes me embarassed for me to hear myself.

Fast forward to the present time, I got weighed, worked out and had breakfast at the hospital. Following that I ran errands then stopped by the library to use texting app on the cell phone carrier website to make sure anything wasn’t wrong, then my weekly appointment, of which I resumed my normal routine with my father until I saw my phone again, yes some friends were checking on me, but I let them know I was fine.

Today, I was notified that there would be slight change in my transportation from work when I return. At first brewed upon it for some time (another blog post for another time) then realized that it hardly didn’t affect me other than one small thing.

In a world where “stuff happens” Autists must accept change and garner the skills necessary to regulate their emotions gracefully. It has been a great process since first diagnosed when change has occurred in my life, however with the proper skills and technique, you can control these symptoms.

Unemployable Part 1: An Autistic Woman Ends Her Time with Career Counseling » The Aspergian

The reality of what it is like to be masked autistic seeking help: gaslighting, dead ends, and dismissive, vague suggestions are the pinnacle of “support” available.Read More →

Source: Unemployable Part 1: An Autistic Woman Ends Her Time with Career Counseling » The Aspergian

The Next Decade in Autism — The Life Autistic

I came across a ranking of someone’s best albums of the decade and realized “Wow, decades are long, and there’s no way I remember all of this.” It’s the frame with which I’m going into these new Roaring Twenties: If I can barely recall the events of the last ten years, I’m probably not going to predict the […]

The Next Decade in Autism — The Life Autistic

This Christmas has been very hard on my kids and me, but we’re survivors — The Autism Dad

It’s been a particularly difficult Christmas this year. The kids have been having a rough time, and if I’m completely honest, I’m running low on patience. It’s not their fault, and at the same time, it’s not my fault I’m struggling as well. The boys are sad, angry, and have been sick for a month.…

This Christmas has been very hard on my kids and me, but we’re survivors — The Autism Dad

Paying It Forward: ‘Bill Of The Month’ Series, A Vital Toolkit For Patients, Wraps Year 2

Hannah Norman

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In 2018, KHN and NPR launched “Bill of the Month,” a crowdsourced investigation in which we dissect, investigate and explain medical bills you send us. In telling the story behind one patient’s bill each month, our goal is to understand the genesis of the often exorbitant and baffling charges that pervade the American medical system.

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This year, we’ve delved into patients’ predicaments from pricey treatments for cat bites and snakebites, to the crippling costs of medical gear ($882 for a knee brace) and high-priced high tech (a $540,842 bill for dialysis, $4,836 for laughing gas during childbirth).

The lessons learned each month help “pay it forward” ― arming future health system pilgrims with the tools they need to avoid surprises or fight back against unfair charges. KHN assembled a user-friendly toolkit to help patients understand some of the ins and outs of medical billing, what to do if you receive a surprise medical bill and things to keep in mind before getting medical care.

Choosing from thousands of reader submissions, we examine each case at khn.org, in print and on NPR’s “Morning Edition” or “All Things Considered,” where you can hear the voices of the patients affected. You can also catch segments on “CBS This Morning.”

Take a spin through our coverage and consider sharing your own medical-billing horror stories. Here’s to a wiser, healthier and wealthier – with more money staying in patients’ pockets ⁠— new year for all our readers.

Texas Law Highlights Dilemma Over Care For Patients With No Hope Of Survival

Charlotte Huff

FORT WORTH, Texas ― Critically ill Tinslee Lewis ― a Fort Worth baby embroiled in a dispute between her family and a hospital over whether to continue life-sustaining treatment ― is the most recent public face of the heartbreaking and intractable dilemmas often confronted quietly in intensive care units. But her circumstances are complicated by a rare law that Texas enacted two decades ago, which critics say gives hospitals the upper hand on whether to stop treatment.

Just 15 to 20 years ago, disputes between doctors and families over the futility of further medical care flared once or twice each year, said Dr. Robert Truog, a pediatric intensive care physician at Boston Children’s Hospital. But these conflicts have become increasingly common to the point that “it’s actually rare for us not to have a patient or two in this situation in the ICU,” he said.

“Many ICUs are paralyzed by dilemmas where families are demanding continued intensive care for patients with no hope of survival beyond the intensive care unit or with a quality of life that is not acceptable even to the patient,” said Truog, who also directs Harvard Medical School’s Center for Bioethics. “And we lack a pathway for being able to refuse these demands from families without prolonged court battles that have an uncertain outcome.”

While some physician groups prefer to talk about “potentially inappropriate” rather than futile care, the underlying quandary remains. What’s the definition of “inappropriate,” who can make that determination and how best to strike a balance between family members — if the patient is typically too ill or injured to weigh in — and the doctors and nurses who can become distressed providing care indefinitely without seeing any benefit?

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The physicians treating Tinslee at Cook Children’s Medical Center in Fort Worth describe her condition as fatal without life-sustaining treatment and say that even routine care, like bathing and feeding, “can cause her little body to experience a medical crisis, which causes even more intervention and pain for her,” according to a hospital statement. The 10-month-old girl was born prematurely with a rare heart defect and other complications. In July, she was put on an extracorporeal membrane oxygenation (ECMO) machine to function in the place of her heart and lungs.

Under the Texas Advance Directives Act, when hospitals like Cook Children’s decide treatment is futile, they must see if another hospital will accept the patient. If none does, they can stop treatment after 10 days. As of Dec. 4, the hospital reported that they had unsuccessfully approached more than 20 hospitals and children’s heart specialists.

Tinslee’s mother, with financial legal support from the Texas Right to Life organization, has been seeking delays under the Texas law, as well as more broadly getting the law declared unconstitutional on due process grounds. The judge said that she would extend the temporary restraining order against the hospital until Jan. 2, according to a Texas Right to Life spokeswoman.

In the meantime, 16 state lawmakers sent a letter to Gov. Greg Abbott on Thursday urging him to call an emergency session of the legislature to consider changing the law. That prompted a letter from the Texas Hospital Association and the Catholic Health Association of Texas, which represents Catholic hospitals in the state, to the governor detailing some of the steps taken in Tinslee’s case and supporting the law. “We stand by the medical team’s efforts to lessen her pain and the ultimate recommendation to end her ongoing suffering,” wrote Stephen Wohleb, senior vice president and general counsel for the hospital association.

Contacted this month, a family member described the baby as conscious and responding to lullabies and television. The 10-day transfer deadline “literally puts an expiration date on human life,” said Tye Brown, who was referred by Texas Right to Life and identified herself as a cousin of the baby’s mother, Trinity.

Texas is one of several states, including California and Virginia, that have enacted laws enabling doctors to withdraw life-sustaining treatment even if family members disagree, said Thaddeus Pope, who directs the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn. These laws don’t have a reporting requirement, so it’s unknown how often the legal process is pursued, he said.

The Texas law, which passed in 1999, initially was a compromise brokered between medical professionals and pro-life groups to establish a process through which a patient could be transferred elsewhere if the treating physician refused to provide further life-sustaining treatment. But in recent years the law has become more controversial, with Texas Right to Life pushing for its repeal, saying it violates due process.

While Pope supports a legal mechanism to resolve these conflicts over when care becomes futile, he argues that the Texas law should be amended because it concedes too much power to hospitals and clinicians. One problem is that the hospital serves as the judge in these disputes, and yet they are also one of the key players, he said.

Texas Attorney General Ken Paxton made a similar argument in an amicus brief in Tinslee’s case.

Among Pope’s other critiques: The act states that an ethics or medical committee shall review the medical inappropriateness decision but does little to specify the composition of the members. Also under the law, an outside judge can’t do more than extend the 10-day window for the family to find another hospital.

The law’s structure “is the worst that you can possibly design it from a fairness or due process perspective,” Pope said. “You are giving the hospital absolute, complete discretion to do whatever they want.”

Defining ‘Futility’

Researchers have attempted to capture how often clinicians perceive medical care as futile. In one California study, doctors described the treatment they provided for 11% of their ICU patients as futile, and probably futile for an additional 8.6%. Among the reasons they gave: the burdens of the treatment grossly outweighed the benefits or the patient was unable to live outside the ICU, according to the findings, published in 2013 in JAMA Internal Medicine.

Generally, physicians concur when life-sustaining treatment shouldn’t be continued, said Dr. Neil Wenger, an author of the 2013 study who also chairs the ethics committee at the UCLA Medical Center in Los Angeles. “What they disagree on is how much effort should be placed in overriding a family,” he said.

Doctors don’t want to be thrust into an adversarial role with patients and family members whom they’re striving to help, Wenger said. Plus, negotiating the ethics committee and other processes can be difficult, he said. “It’s an enormous effort.”

At the same time, these heart-wrenching cases can cause doctors, nurses and other clinicians significant distress to provide care they feel is not only inappropriate, but also may cause patient suffering, said Mary Faith Marshall, who directs the Center for Health Humanities and Ethics at the University of Virginia School of Medicine. “Health care clinicians are not robots and they’re not automatons,” she said. “And they have professional ethics requirements not to harm their patients.”

The cost of critical care treatment plays little role in these conflicts, said Marshall, a former critical care nurse. Clinicians “at the bedside generally don’t know and they don’t care what the patient’s payer source is,” she said. When asked if Tinslee has insurance coverage, a Cook Children’s spokeswoman said that she didn’t know and such information wouldn’t be publicly released.

In 2018, the Virginia legislature passed some changes to its existing statute, allowing life-sustaining care to be withdrawn if determined to be “medically or ethically inappropriate” and the patient couldn’t be transferred to another hospital within 14 days. (The Virginia law, unlike in Texas, does allow an outside judge to weigh in on the hospital’s determination, Pope noted.)

Resolving Intractable Conflicts

More such end-of-life conflicts will likely occur, said Pope, citing in part a shift in end-of-life views. In 1990, 15% of Americans agreed that doctors should do everything possible in all circumstances to save a patient’s life, according to Pew Research Center data. By 2013, the most recent data available, 31% of Americans expressed that desire.

Meanwhile, medicine has advanced to the point “that we can keep almost anybody alive in the ICU at this point,” Truog said. “And I mean that quite literally because we can take over heart and lung function, kidney function, everything. It’s very difficult to die in the ICU if we don’t let you.”

Still, better protections for the family should be part of any legal mechanism, including the option for a review by an outside judge, Truog said. A hospital ethics committee also is not the appropriate decision-maker, he added. Not only are the members typically employed by or aligned with the hospital, but they also may not have the same educational, socioeconomic or racial/ethnic background as those impacted.

To better level the playing field, a regional committee of independent experts could instead play that decision-making role, Truog suggested.

As technology advances, there needs to be some type of mechanism so physicians don’t flinch from starting treatments in high-risk cases, Wenger said. Take the patient who has suffered a massive heart attack and it’s unknown when he arrives in the emergency room how long his brain has been deprived of oxygen, he said.

With an ECMO machine, a physician can support the patient’s heart and lungs until brain activity is assessed. If the results are dismal, Wenger said, continuing the ECMO would be medically inappropriate. “You need the ability then to stop that ECMO, so you are not perpetuating the dying process.”