If My Dying Daughter Could Face Her Mortality, Why Couldn’t the Rest of Us?

The New York Times | By Sarah Wildman

 The first week of March 2022, I flew to Miami with my 13-year-old daughter, Orli; her 8-year-old sister, Hana; and my partner, Ian. We were, by all appearances, healthy. Robust, even.

In reality, we were at the end of a reprieve. Orli’s liver cancer had by then been assaulted by two years of treatments — chemotherapy, a liver transplant, more chemotherapy, seven surgeries. Now new metastases lit up a corner of one lung on scans, asymptomatic but foreboding. We asked her medical team if we might show her a bit of the world before more procedures. Our oncologist balked. Hence, this brief weekend away.

When we arrived at the beach Orli ran directly to the water, then came back and stretched out on a lounge chair. She turned to me and asked, “What if this is the best I ever feel again?”

Three hundred and seventy-six days later, she was dead.

In the time since she left us, I have thought often of Orli’s question. All that spring, Orli asked, pointedly, why did we think a cure was still possible, that cancer would not continue to return? Left unspoken: Was she going to die from her disease? It was a conversation she wanted to have. And yet what we found over the wild course of her illness was that such conversations are often discouraged, in the doctor’s office and outside it.

What would it have meant for Orli’s last year if her medical team had encouraged us to meet her where she was? What if we lived in a society that was able to sit with the anguish that arises for very sick children and their families? In other words: What if we were presented with something other than relentless hope? If we had been asked to really consider that Orli’s time on earth was limited, how would we have used that time?

Americans — really, Westerners  are terrified of death. We shy away from it. Death is a problem to solve, not an inevitable part of life. As the grief therapist David Kessler pointed out to me, we once visited the dead in the front parlors of private homes. Now the dead are tucked out of sight, handled by others. A bereaved family is the locus of nightmares rather than the focus of shared support.

Nowhere is this more true than with the prospect of a child’s death. Death from illness is seen as aberrant, unusual, terrifying. Death from war, gun violence, abuse is lamentable, awful — separate. Healthy children and teens are largely shielded from the critically ill. Visiting the sick, let alone the dying, is associated with the aged and infirm; a charitable act, but not integrated into our ethos. Clergy members are overburdened. Death in America is a whisper, a shame, an error. Supporting a family through the end of life is delicate. For a child, it is also obscene…

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A Stroke Changed a Teacher's Life: How a New Electrical Device is Helping Her Move

Miami Herald | By Michelle Marchante

As her students finished their online exam, Arlet Lara got up to make a cafe con leche.

Her 16-year-old son found her on the kitchen floor. First, he called Dad in a panic. Then 911.

"I had a stroke and my life made a 180-degree turn," Lara told the Miami Herald, recalling the medical scare she experienced in May 2020 in the early months of the COVID pandemic.

"The stroke affected my left side of the body," the North Miami woman and former high school math teacher said.

Lara, an avid runner and gym goer, couldn't even walk.

"It was hard," the 50-year-old mom said.

After years of rehabilitation therapy and foot surgery, Lara can walk again. But she still struggles with moving.

This summer, she became the first patient in South Florida to get an implant of a new and only FDA-approved nerve stimulation device designed to help ischemic stroke survivors regain movement in their arms and hands.

This first procedure was at Jackson Memorial Hospital in Miami. Lara's rehab was at the Christine E. Lynn Rehabilitation Center for The Miami Project to Cure Paralysis, part of a partnership between Jackson Health System and UHealth.

Every year, thousands in the United States have a stroke, with one occurring every 40 seconds, according to the U.S. Centers for Disease Control and Prevention. The majority of strokes are ischemic, often caused by blood clots that obstruct blood flow to the brain.

For survivors, most of whom are left with some level of disability, the Vivistim Paired VNS System, the device implanted in Lara's chest, could be a game changer in recovery, said Dr. Robert Starke, a UHealth neurosurgeon and interventional neuroradiologist. He also serves as co-director of endovascular neurosurgery at Jackson Memorial Hospital, part of Miami-Dade's public hospital system…

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Wearable Devices for Parkinson’s Disease: The Future Is Here

Medscape | By Patrice Wendling

Less than a decade ago, the use of wearable devices in Parkinson’s disease (PD) was considered futuristic. Today, there’s an array of innovative tools from commercial activity trackers to tremor suppression gloves and laser-guided walking sticks to help manage the highly variable and fluctuating symptoms of PD.

“Over the past 5 years, the landscape of wearable technology for Parkinson’s monitoring has transformed remarkably,” Roongroj Bhidayasiri, MD, co-chair of the International Parkinson and Movement Disorder Society’s (MDS’s) Technology Study Group, told Medscape Medical News.

Advances in sensor technology, data analytics, and machine learning have significantly enhanced the precision and usability of wearable devices, he noted. They now offer continuous, real-time monitoring of both motor and nonmotor symptoms, which supports personalized treatment plans and more accurate tracking of disease progression.

Additionally, the integration of artificial intelligence analytics facilitates more comprehensive data analysis, whereas integration with mobile applications enhances patient engagement and data sharing with providers, said Bhidayasiri, director, Chulalongkorn Center of Excellence for Parkinson’s Disease & Related Disorders, and professor of neurology, Chulalongkorn University, Bangkok, Thailand.

“These technological advancements have cemented wearables as invaluable tools in the efficient and responsive management of PD within neurology care models,” he added.

Andrea Pilotto, MD, fellow MDS Technology Study Group co-chair and associate professor of neurology, University of Brescia, Brescia, Italy, pointed out that recent advances have improved the ability to capture subtle motor deficits that appear years before a clinical diagnosis of PD and add granularity to office assessments and patient home diaries.

“For sure, patient-reported outcomes are important, but we know that a large percentage of patients, especially with motor fluctuations, are not clearly aware of their symptoms or misjudge their symptoms,” he said in an interview.

The focus of wearable sensors is also shifting from its hallmark motor symptoms to monitoring nonmotor features of PD, which can vary throughout the day and influence motor measurements and therapeutic choices.

“We are now realizing the potential of wearables to begin to address anxiety, sleep, depression, and other nonmotor symptoms,” Michael S. Okun, MD, medical advisor, Parkinson’s Foundation, and director, Norman Fixel Institute for Neurological Diseases, University of Florida Health, Gainesville, Florida, told Medscape Medical News.

“This could be a game changer as nonmotor symptoms in many studies are more important than the motor symptoms in impacting quality of life,” he added…

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Hospice Quality Reporting Program Webinar — December 12

Thursday, December 12, 2024, at 1-2 pm ET

Register for this webinar.

CMS will host a webinar on an Introduction to Hospice Outcomes and Patient Evaluation. Subject matter experts will answer questions as time permits.

Visit Hospice Quality Reporting Program for more information.

 

Trump Picks TV's Dr. Oz to Run Medicare and Medicaid

Reuters / By Ahmed Aboulenein

U.S. President-elect Donald Trump said on Tuesday that he had chosen television personality and surgeon Dr. Mehmet Oz to serve as administrator of the Centers for Medicare and Medicaid Services, a wide-reaching agency with annual spending of $2.6 trillion.

Trump, who endorsed Oz in his unsuccessful run in Pennsylvania for the U.S. Senate in 2022, said he would work closely with Robert F. Kennedy Jr., who was nominated to lead the Department of Health and Human Services.

Oz said in a post on social media website X he was looking forward "to serving my country to Make America Healthy Again under" Kennedy's leadership.

Trump said the pair would take on "the illness industrial complex, and all the horrible chronic diseases left in its wake" as well as cutting what he called waste and fraud.

"Our broken Healthcare System harms everyday Americans, and crushes our Country's budget," Trump said in a statement.

The agency runs Medicare, the federal health insurance program for people aged 65 or older and the disabled. The office also oversees Medicaid, the state-based health insurance program for low-income people, which is jointly funded by states and the federal government. The two programs provide health insurance for over 140 million Americans.

It also handles much of the enrollment in income-based government-subsidized health insurance under the Affordable Care Act, also known as Obamacare. Trump and other Republicans have previously tried to repeal the law but now say they only seek to overhaul it.

His nomination is less likely to cause negative reaction among pharmaceutical companies than Kennedy's, an outspoken critic of drugmakers, said BMO analyst Evan Seigerman.

"While Oz has been controversial and a noted TV personality, his stance on expanded Medicare coverage and tackling ... pricing challenges could be a positive for the industry in the long run," he wrote in a note.

Oz was a regular Fox News commentator during the COVID-19 pandemic and a proponent of unproven treatments for COVID-19 including hydroxychloroquine, an antimalarial drug whose use against the disease was also backed by Trump.

Oz challenged the Biden administration's COVID-19 pandemic policies on social media, including mask policies, saying they ignored the science and were based on missing data.

In 2020, he was a proponent of expanding Medicare Advantage plans in which insurers manage healthcare benefits paid for by the government to all Americans who were not enrolled in Medicaid in a column published in Forbes magazine.

Oz promoted Medicare Advantage on his syndicated daytime television talk show, which aired between 2009 and 2022, in segments sponsored by a website selling the plans.

Shares of all major health insurers in the U.S. were marginally up after the decision with UnitedHealth (UNH.N), opens new tab, Humana (HUM.N), opens new tab and Molina Healthcare (MOH.N), opens new tab moving up between 1% and 2% in after-hours trade.

Trump promised during his campaign not to cut Medicare but is expected to let federal subsidies for Medicaid expire at the end of 2025.

After RFK Jr. was named to the job last week, Oz told Fox News that he knew the HHS secretary nominee personally. The position is subject to Senate confirmation.

 
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