On the day I was supposed to start my intensive care unit rotation as a fourth-year medical student, I walked into an ICU 3,000 miles away as a visitor.
My dad, who has been living with cancer since my first year of medical school, was recovering from emergency surgery for an infection. Awake but unable to speak because of a plastic tube in his airway, he grabbed a piece of paper and scribbled, "Glad you're here." Unable to find my own voice, I nodded in agreement.
In the weeks that followed, I was reintroduced to the health care system I thought I already knew. Despite knowing how much compassionate and endless effort doctors, nurses, and other clinicians put into patient care, I was humbled by seeing my father and family struggle to understand the care he needed, and by how much effort it took on our part to ensure he received it.
More ...
https://www.statnews.com/2020/10/09/it-shouldnt-take-medical-training-ensure-loved-one-gets-great-care/
Friday, October 9, 2020
Monday, September 14, 2020
NYTimes: ‘The Undying,’ an Extraordinary and Furious New Memoir About Cancer
The pink ribbon, that ubiquitous emblem of breast cancer awareness, has long been an object of controversy and derision, but the poet and essayist Anne Boyer doesn't just pull it loose, unfastening its dainty loop; she feeds it through a shredder and lights it on fire, incinerating its remains.
"The world is blood pink with respectability politics," she writes, "as if anyone who dies from breast cancer has died of a bad attitude or eating a sausage or not trusting the word of a junior oncologist."
Boyer's extraordinary and furious new book, "The Undying," is partly a memoir of her illness, diagnosed five years ago; she was 41 years old when she learned that the lump in her breast was triple-negative cancer, one of the deadliest kinds. But her story, told with searing specificity, is just one narrative thread in a book that reflects on the possibility — or necessity — of finding common cause in individual suffering.
More ...
https://www.nytimes.com/2019/09/10/books/review-undying-cancer-anne-boyer.html?
"The world is blood pink with respectability politics," she writes, "as if anyone who dies from breast cancer has died of a bad attitude or eating a sausage or not trusting the word of a junior oncologist."
Boyer's extraordinary and furious new book, "The Undying," is partly a memoir of her illness, diagnosed five years ago; she was 41 years old when she learned that the lump in her breast was triple-negative cancer, one of the deadliest kinds. But her story, told with searing specificity, is just one narrative thread in a book that reflects on the possibility — or necessity — of finding common cause in individual suffering.
More ...
https://www.nytimes.com/2019/09/10/books/review-undying-cancer-anne-boyer.html?
Tuesday, January 14, 2020
Inside Google’s Quest for Millions of Medical Records - WSJ
Roughly a year ago, Google offered health-data company Cerner Corp. an unusually rich proposal.
Cerner was interviewing Silicon Valley giants to pick a storage provider for 250 million health records, one of the largest collections of U.S. patient data. Google dispatched former chief executive Eric Schmidt to personally pitch Cerner over several phone calls and offered around $250 million in discounts and incentives, people familiar with the matter say.
Google had a bigger goal in pushing for the deal than dollars and cents: a way to expand its effort to collect, analyze and aggregate health data on millions of Americans. Google representatives were vague in answering questions about how Cerner's data would be used, making the health-care company's executives wary, the people say. Eventually, Cerner struck a storage deal with Amazon.com Inc. instead.
The failed Cerner deal reveals an emerging challenge to Google's move into health care: gaining the trust of health care partners and the public. So far, that has hardly slowed the search giant.
Google has struck partnerships with some of the country's largest hospital systems and most-renowned health-care providers, many of them vast in scope and few of their details previously reported. In just a few years, the company has achieved the ability to view or analyze tens of millions of patient health records in at least three-quarters of U.S. states, according to a Wall Street Journal analysis of contractual agreements.
In certain instances, the deals allow Google to access personally identifiable health information without the knowledge of patients or doctors. The company can review complete health records, including names, dates of birth, medications and other ailments, according to people familiar with the deals.
The prospect of tech giants' amassing huge troves of health records has raised concerns among lawmakers, patients and doctors, who fear such intimate data could be used without individuals' knowledge or permission, or in ways they might not anticipate.
More ...
https://www.wsj.com/articles/paging-dr-google-how-the-tech-giant-is-laying-claim-to-health-data-11578719700
Cerner was interviewing Silicon Valley giants to pick a storage provider for 250 million health records, one of the largest collections of U.S. patient data. Google dispatched former chief executive Eric Schmidt to personally pitch Cerner over several phone calls and offered around $250 million in discounts and incentives, people familiar with the matter say.
Google had a bigger goal in pushing for the deal than dollars and cents: a way to expand its effort to collect, analyze and aggregate health data on millions of Americans. Google representatives were vague in answering questions about how Cerner's data would be used, making the health-care company's executives wary, the people say. Eventually, Cerner struck a storage deal with Amazon.com Inc. instead.
The failed Cerner deal reveals an emerging challenge to Google's move into health care: gaining the trust of health care partners and the public. So far, that has hardly slowed the search giant.
Google has struck partnerships with some of the country's largest hospital systems and most-renowned health-care providers, many of them vast in scope and few of their details previously reported. In just a few years, the company has achieved the ability to view or analyze tens of millions of patient health records in at least three-quarters of U.S. states, according to a Wall Street Journal analysis of contractual agreements.
In certain instances, the deals allow Google to access personally identifiable health information without the knowledge of patients or doctors. The company can review complete health records, including names, dates of birth, medications and other ailments, according to people familiar with the deals.
The prospect of tech giants' amassing huge troves of health records has raised concerns among lawmakers, patients and doctors, who fear such intimate data could be used without individuals' knowledge or permission, or in ways they might not anticipate.
More ...
https://www.wsj.com/articles/paging-dr-google-how-the-tech-giant-is-laying-claim-to-health-data-11578719700
What to Say to Someone With Cancer - The New York Times
Do you know what to say or what to do when a friend, relative or acquaintance has cancer?
Chances are, like many of the people who interacted with Lynda Wolters, you may not. Ms. Wolters, author of the recently published book "Voices of Cancer," was found in midlife to have a relatively rare and currently incurable cancer called mantle cell lymphoma.
"Because people had no idea what to say to me, for me, or about me, they often avoided me instead," she wrote, prompting her to reach out to strangers in support groups for spiritual strength.
Those who did speak to Ms. Wolters too often said something unhelpful or off-putting like "Call me if you need anything" or "How are you feeling?" In her blog, she sought to reassure hesitant friends: "I would rather see your face and the pain and fear in your eyes than to have you feel too unsure and awkward to see me. I would rather hear about you, your work, your life, your kids and your puppy's antics than I would about my sickness."
More ...
https://www.nytimes.com/2020/01/13/well/live/what-to-say-to-someone-with-cancer.html?
Chances are, like many of the people who interacted with Lynda Wolters, you may not. Ms. Wolters, author of the recently published book "Voices of Cancer," was found in midlife to have a relatively rare and currently incurable cancer called mantle cell lymphoma.
"Because people had no idea what to say to me, for me, or about me, they often avoided me instead," she wrote, prompting her to reach out to strangers in support groups for spiritual strength.
Those who did speak to Ms. Wolters too often said something unhelpful or off-putting like "Call me if you need anything" or "How are you feeling?" In her blog, she sought to reassure hesitant friends: "I would rather see your face and the pain and fear in your eyes than to have you feel too unsure and awkward to see me. I would rather hear about you, your work, your life, your kids and your puppy's antics than I would about my sickness."
More ...
https://www.nytimes.com/2020/01/13/well/live/what-to-say-to-someone-with-cancer.html?
Thursday, January 9, 2020
These Patients Are Hard to Treat - The New York Times
In the quest to reduce health care spending in the United States, the idea held incredible promise: By addressing the medical and social needs of the most expensive patients, you could keep them out of the hospital.
These individuals, frequently struggling with addiction or homelessness, have extremely complicated medical conditions. By finding them and connecting them to the right doctors and social services, dozens of costly hospital stays could be avoided. The idea has been adopted in numerous communities around the country.
Dr. Jeffrey Brenner, a family physician in New Jersey, founded the Camden Coalition of Healthcare Providers in 2002. He created teams of nurses, social workers and others to coordinate the care of people he saw cycle in and out of the hospital. Dr. Brenner, who was profiled in a 2011 New Yorker piece, "The Hot Spotters," and who won a MacArthur Foundation fellowship — known as a "genius" grant — in 2013, became the program's chief evangelist.
But a new study, published Wednesday in the New England Journal of Medicine, showed that the Camden program did not result in fewer hospital readmissions in the six months after a patient left the hospital. While the program appeared to lower readmissions by nearly 40 percent, the same kind of patients who received regular care saw a nearly identical decline in hospital stays.
More ...
https://www.nytimes.com/2020/01/08/health/camden-coalition-chronic-illness.html
These individuals, frequently struggling with addiction or homelessness, have extremely complicated medical conditions. By finding them and connecting them to the right doctors and social services, dozens of costly hospital stays could be avoided. The idea has been adopted in numerous communities around the country.
Dr. Jeffrey Brenner, a family physician in New Jersey, founded the Camden Coalition of Healthcare Providers in 2002. He created teams of nurses, social workers and others to coordinate the care of people he saw cycle in and out of the hospital. Dr. Brenner, who was profiled in a 2011 New Yorker piece, "The Hot Spotters," and who won a MacArthur Foundation fellowship — known as a "genius" grant — in 2013, became the program's chief evangelist.
But a new study, published Wednesday in the New England Journal of Medicine, showed that the Camden program did not result in fewer hospital readmissions in the six months after a patient left the hospital. While the program appeared to lower readmissions by nearly 40 percent, the same kind of patients who received regular care saw a nearly identical decline in hospital stays.
More ...
https://www.nytimes.com/2020/01/08/health/camden-coalition-chronic-illness.html
Sunday, January 5, 2020
How one medical checkup can snowball into a ‘cascade’ of tests, causing more harm than good - The Washington Post
My pager emits the same urgent beep no matter the occasion. That afternoon, it was the local preoperative clinic to say my 80-something patient, Lily, had been given an electrocardiogram (EKG) "just to be safe" before a minor office procedure.
The EKG was a little off, the page went on. Could I take a look? Lily (I'm identifying her by only her first name at her request) felt fine. No chest pain. No trouble breathing. But now that the irregularity was out there, the procedure would be delayed until we had answers.
Flash forward one borderline blood test result, several phone calls between myself, Lily, and the anesthesiologist, 14 emails, an office visit, and a completely normal stress test. Lily (and her heart) were in no better health, yet she was slightly less well off and more than slightly distressed by all the trouble she went through. I was disappointed that I'd failed her.
And this was a relatively good outcome.
"If You Give a Mouse a Cookie," Laura Numeroff's classic children's book, is a cautionary tale about the downstream consequences of a single, seemingly innocuous decision. You gave the mouse the cookie. Naturally, he wanted a glass of milk to go with it. Before long, the mouse was moving in and sharing your Netflix password.
This pattern is familiar to many of us, whether as doctors or as patients: A medical test spurs a "cascade" of phone calls, office visits, tests and treatments, each a logical, even inevitable, progression from the one before.
More ...
https://www.washingtonpost.com/health/how-one-medical-checkup-can-snowball-into-a-cascade-of-tests-causing-more-harm-than-good/2020/01/03/0c8024fc-20eb-11ea-bed5-880264cc91a9_story.html
The EKG was a little off, the page went on. Could I take a look? Lily (I'm identifying her by only her first name at her request) felt fine. No chest pain. No trouble breathing. But now that the irregularity was out there, the procedure would be delayed until we had answers.
Flash forward one borderline blood test result, several phone calls between myself, Lily, and the anesthesiologist, 14 emails, an office visit, and a completely normal stress test. Lily (and her heart) were in no better health, yet she was slightly less well off and more than slightly distressed by all the trouble she went through. I was disappointed that I'd failed her.
And this was a relatively good outcome.
"If You Give a Mouse a Cookie," Laura Numeroff's classic children's book, is a cautionary tale about the downstream consequences of a single, seemingly innocuous decision. You gave the mouse the cookie. Naturally, he wanted a glass of milk to go with it. Before long, the mouse was moving in and sharing your Netflix password.
This pattern is familiar to many of us, whether as doctors or as patients: A medical test spurs a "cascade" of phone calls, office visits, tests and treatments, each a logical, even inevitable, progression from the one before.
More ...
https://www.washingtonpost.com/health/how-one-medical-checkup-can-snowball-into-a-cascade-of-tests-causing-more-harm-than-good/2020/01/03/0c8024fc-20eb-11ea-bed5-880264cc91a9_story.html
Saturday, January 4, 2020
She Is 96 and Does Not Fear Her Death. But Do Her Children? - The New York Times
It was the year of saying goodbye.
In 2015, The Times began following six people age 85 and up, documenting their journeys through a stage of life that is often invisible.
Four were still alive at the start of 2019. Jonas Mekas, 96, began the year at home from the hospital, tired, hoping to finish a film he was making for a performance of Verdi's Requiem. "Another year," he said last New Year's Day. "Hope it will be busy and productive."
On Jan. 23, he asked his son, Sebastian, to sit him upright in a chair — a preparation, Sebastian said, for his spirit to go forward to the next adventure. He died at the small wooden table where he'd sat with so many friends.
Jonas was the last of the three men in the Times series. Of the three women, two also died in 2019. Both were 95.
In late December, Ruth Willig, 96, learned that she was the only one left. "Ohhhh," she said, taking it in. "What happened? Am I the only one? I'm going to cry."
Death had been a regular part of our conversations over the past five years, as it had been with the others. Ruth had been consistent: she did not worry much about death, but she did think about how she would go. Would it be painful or drawn out? Would she become a burden to her children?
"You saw I was almost crying before when you told me about that," she said. "It really hit me. I can't believe…." She stopped.
Finally, she said, "I'm ready, I am. But I worry about my children. They're so devoted to me. It scares me."
More ...
https://www.nytimes.com/2020/01/03/nyregion/ruth-willig-oldest-death.html?
In 2015, The Times began following six people age 85 and up, documenting their journeys through a stage of life that is often invisible.
Four were still alive at the start of 2019. Jonas Mekas, 96, began the year at home from the hospital, tired, hoping to finish a film he was making for a performance of Verdi's Requiem. "Another year," he said last New Year's Day. "Hope it will be busy and productive."
On Jan. 23, he asked his son, Sebastian, to sit him upright in a chair — a preparation, Sebastian said, for his spirit to go forward to the next adventure. He died at the small wooden table where he'd sat with so many friends.
Jonas was the last of the three men in the Times series. Of the three women, two also died in 2019. Both were 95.
In late December, Ruth Willig, 96, learned that she was the only one left. "Ohhhh," she said, taking it in. "What happened? Am I the only one? I'm going to cry."
Death had been a regular part of our conversations over the past five years, as it had been with the others. Ruth had been consistent: she did not worry much about death, but she did think about how she would go. Would it be painful or drawn out? Would she become a burden to her children?
"You saw I was almost crying before when you told me about that," she said. "It really hit me. I can't believe…." She stopped.
Finally, she said, "I'm ready, I am. But I worry about my children. They're so devoted to me. It scares me."
More ...
https://www.nytimes.com/2020/01/03/nyregion/ruth-willig-oldest-death.html?
Older People Need Geriatricians. Where Will They Come From? - The New York Times
Linda Poskanzer was having a tough time in her late 60s.
"I was not doing well emotionally," she recalled. "Physically, I didn't have any stamina. I was sleeping a lot. I wasn't getting to work."
A therapist in Hackensack, N.J., Ms. Poskanzer was severely overweight and grew short of breath after walking even short distances. Her house had become disorganized, buried in unsorted paperwork. The antidepressant she was taking didn't seem to help.
Her son, visiting from Florida, called his sisters and said, "Mommy needs an intervention."
One of her daughters made an appointment with a geriatrician — a physician who specializes in the care of older adults. Dr. Manisha Parulekar, now chief of geriatrics at Hackensack University Medical Center, suggested her new patient take action on several fronts. She arranged for a sleep study, which found that Ms. Poskanzer suffered from apnea. She prescribed a different antidepressant, and physical therapy in a pool to help rebuild her stamina.
And weight loss. Eventually, the geriatrician agreed that bariatric surgery made sense. Over nine months, Ms. Poskanzer lost 75 pounds; she has shed another 15 since.
Now about to turn 80, Ms. Poskanzer is still providing therapy, 30 hours each week, feels "full of spirit" and continues to see her geriatrician every four months. "She sits and talks, which a lot of doctors don't do anymore," Ms. Poskanzer said. "And she knows me. I feel very well taken care of."
Testimonials like this spotlight the rising need for geriatricians. These doctors not only monitor and coordinate treatment for the many ailments, disabilities and medications their patients contend with, but also help them determine what's most important for their well-being and quality of life.
More ...
https://www.nytimes.com/2020/01/03/health/geriatricians-shortage.html?
"I was not doing well emotionally," she recalled. "Physically, I didn't have any stamina. I was sleeping a lot. I wasn't getting to work."
A therapist in Hackensack, N.J., Ms. Poskanzer was severely overweight and grew short of breath after walking even short distances. Her house had become disorganized, buried in unsorted paperwork. The antidepressant she was taking didn't seem to help.
Her son, visiting from Florida, called his sisters and said, "Mommy needs an intervention."
One of her daughters made an appointment with a geriatrician — a physician who specializes in the care of older adults. Dr. Manisha Parulekar, now chief of geriatrics at Hackensack University Medical Center, suggested her new patient take action on several fronts. She arranged for a sleep study, which found that Ms. Poskanzer suffered from apnea. She prescribed a different antidepressant, and physical therapy in a pool to help rebuild her stamina.
And weight loss. Eventually, the geriatrician agreed that bariatric surgery made sense. Over nine months, Ms. Poskanzer lost 75 pounds; she has shed another 15 since.
Now about to turn 80, Ms. Poskanzer is still providing therapy, 30 hours each week, feels "full of spirit" and continues to see her geriatrician every four months. "She sits and talks, which a lot of doctors don't do anymore," Ms. Poskanzer said. "And she knows me. I feel very well taken care of."
Testimonials like this spotlight the rising need for geriatricians. These doctors not only monitor and coordinate treatment for the many ailments, disabilities and medications their patients contend with, but also help them determine what's most important for their well-being and quality of life.
More ...
https://www.nytimes.com/2020/01/03/health/geriatricians-shortage.html?
Friday, January 3, 2020
Opinion | Why Are You Publicly Sharing Your Child’s DNA Information? - The New York Times
A few years ago, Angela Evans decided she wanted to test the DNA of her 10-year-old daughter and 7-year-old son. She was interested in knowing whether they had a mutation of the MTHFR gene, as she does. The mutation is linked to a number of disorders — women with the mutation may have a higher risk of having babies with defects like spina bifida — and Ms. Evans wanted to make life changes for her children based on the results.
When doctors told her they didn't think there was a medical need to test her children, she decided to use 23andMe, the direct-to-customer genetic testing company.
To use 23andMe's services, the user simply sends in a saliva sample. Within five weeks the company returns the results, without the mediation of a doctor or genetic counselor.
Along with finding out that both her children had a mutation of the MTHFR gene, she also received 23andMe's analysis of her children's genetic susceptibility to a number of adult-onset diseases, including Parkinson's. Ms. Evans shared the results with her children, family members and friends.
Then she uploaded their DNA data to MyHeritage and GEDmatch hoping to learn more about the family's genealogy. Sites like GEDmatch and others are "open-source databases" on which people freely share their DNA online, usually in the hopes of finding long-lost relatives.
More …
https://www.nytimes.com/2020/01/02/opinion/dna-test-privacy-children.html?
When doctors told her they didn't think there was a medical need to test her children, she decided to use 23andMe, the direct-to-customer genetic testing company.
To use 23andMe's services, the user simply sends in a saliva sample. Within five weeks the company returns the results, without the mediation of a doctor or genetic counselor.
Along with finding out that both her children had a mutation of the MTHFR gene, she also received 23andMe's analysis of her children's genetic susceptibility to a number of adult-onset diseases, including Parkinson's. Ms. Evans shared the results with her children, family members and friends.
Then she uploaded their DNA data to MyHeritage and GEDmatch hoping to learn more about the family's genealogy. Sites like GEDmatch and others are "open-source databases" on which people freely share their DNA online, usually in the hopes of finding long-lost relatives.
More …
https://www.nytimes.com/2020/01/02/opinion/dna-test-privacy-children.html?
Wednesday, January 1, 2020
NYTimes: Doctors, Nurses and the Paperwork Crisis That Could Unite Them
Broken, wasteful, inhuman, expensive, deadly. The problems with the American health care system, or non-system, are neither subtle nor unrecognized — especially by those of us doctors and nurses who actually provide the care. And yet we all too often feel the most helpless, seeing how much of the problem is driven by drug companies and hospital networks.
Too often, each profession sees the other as fighting separate battles, and sometimes against each other. Doctors blame nurses, and vice versa, for the failings of a system that punishes us all, and our patients.
Instead, the two of us are suggesting that nurses and doctors try something unusual. Let's put our differences aside and work together to achieve real change, starting with a pernicious problem that drives so much of our mutual discontent: electronic health records.
The current system is pushing both doctors and nurses to the breaking point. Enough doctors in the United States commit suicide every year to fill two large medical school classes. A 2019 MedScape report found that 44 percent of physicians feel "burned out," driving many to alcoholism and depression, or to leave the profession entirely.
Nurse suicides are not systematically measured and reported, but a 2017 study in England found a suicide rate among nurses that was 23 percent above the national average. Half of all nurses are considering leaving the profession, according to a 2017 study by RNnetwork.
Clinicians are notoriously overworked, but ask anyone on a hospital staff, and he or she will tell you that workloads have become heavier the last several years thanks almost entirely to the arrival of electronic health records — detailed reports about a patient's medical history and care. Originally intended as a work-saving tool, the records have gone in the opposite direction, taking time away from patient care in the name of electronic box-checking.
More ...
https://www.nytimes.com/2019/12/31/opinion/doctors-nurses-and-the-paperwork-crisis-that-could-unite-them.html?
Too often, each profession sees the other as fighting separate battles, and sometimes against each other. Doctors blame nurses, and vice versa, for the failings of a system that punishes us all, and our patients.
Instead, the two of us are suggesting that nurses and doctors try something unusual. Let's put our differences aside and work together to achieve real change, starting with a pernicious problem that drives so much of our mutual discontent: electronic health records.
The current system is pushing both doctors and nurses to the breaking point. Enough doctors in the United States commit suicide every year to fill two large medical school classes. A 2019 MedScape report found that 44 percent of physicians feel "burned out," driving many to alcoholism and depression, or to leave the profession entirely.
Nurse suicides are not systematically measured and reported, but a 2017 study in England found a suicide rate among nurses that was 23 percent above the national average. Half of all nurses are considering leaving the profession, according to a 2017 study by RNnetwork.
Clinicians are notoriously overworked, but ask anyone on a hospital staff, and he or she will tell you that workloads have become heavier the last several years thanks almost entirely to the arrival of electronic health records — detailed reports about a patient's medical history and care. Originally intended as a work-saving tool, the records have gone in the opposite direction, taking time away from patient care in the name of electronic box-checking.
More ...
https://www.nytimes.com/2019/12/31/opinion/doctors-nurses-and-the-paperwork-crisis-that-could-unite-them.html?
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