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Tag: Patients

HealthcareDIY: An Old Idea Made New

My wisest and longest-time friend in health care, Jane Sarasohn-Kahn has a new project, new research and a new website called HealthcareDIY out today. I encourage all of you to look around her new site and consider the stories she is telling, as they matter to all of us.–Matthew Holt

We’re DIY’ing home renovations, photo development, music playlists, personal financial management, and travel reservations. Increasingly, we’re also DIY’ing health. Think: Maker Faire-Meets-Health.

My thinking about HealthcareDIY was first inspired by my mother Polly, who died 34 years ago this month. She was my first role model for an engaged patient. When she was diagnosed with Hodgkins lymphoma in 1971, there was no internet for her to tap into for a patient network, a clinical trial, or a directory of oncologists or centers of excellence that were Top Doctors for treating the condition.

Polly did, however, absorb the books of Adelle Davis and her Let’s Get Well series on nutrition and health. Polly’s good friend, a librarian with whom she worked, tapped into the Index Medicus on her behalf and retrieved abstracts of articles on blood cancers that he printed out from the microfiche. Polly partnered with her doctor, an internist with a keen interest in hematology, for her care. She also had a huge and diverse social network (offline, of course) that surrounded her with a whole lot of love. Her M.O. was informed by Dr. Bernie Siegel, who started Exceptional Cancer Patients in 1978 and evangelized about patient engagement, living fully with cancer, and dying in peace, which she did, in October 1979.

Among many legacies Polly left me was her can-do attitude when faced with a six-month-prognosis upon diagnosis with Hodgkin’s. Mom worked full-time until the last two years of her life, wore beautifully tailored clothes and put on lipstick every day, and project-managed her health through eight years of treatment: primarily, radiation and blood transfusions. Polly figured out how to take control where she could, and she did it with grace, humor and sheer human will.

She DIY’d her health given the resources she had at-hand between 1971 and 1979: books, cassette tapes, in-person support groups, medical journals in print, a specialist and internist, and lots of love.

In the three decades since Polly’s death, two seismic forces have structurally changed consumers in America: the Great Recession beginning in December 2007, and the near-universal use of the internet in health. Ogilvy’s report, Eyes Wide Open, Wallet Half Shut, found two countervailing forces re-shaping U.S. consumers: re-trenching and re-imagining. On the retrenching side of behavior, people began to do more binging: in media consumption, drinking, and eating.

On the re-imagining front, some people looked to re-invent themselves, reconnect with others, and re-train to re-tool careers. This group of people has sought to be more active and more deliberate, and accept more complexity in daily living. These people are more mindful, more frugal, and open to trading down. 9 in 10 use coupons, shop at discount stores, and buy more store brands and generics.

For this latter group, Ogilvy said, “Self Reliance is the new insurance policy,” with a group ethos believing that, “Americans need to be strong, get their house in order, and protect themselves,” per the report.

That’s where HealthcareDIY comes into play.Continue reading…

The Next Great Cure? A Cancer Doctor Explains Why He Supports the Affordable Care Act

What do Louis Pasteur, Jonas Salk, Sigmund Freud and Barack Obama have in common?  They all championed controversial medical revolutions and if not for their bravery in the face of conflict, billions would have died.

Sterilize instruments to kill invisible bugs? Inject disease particles to build immunity?  Look into our subconscious to explain everyday behavior?  Give basic healthcare to everyone?  Ludicrous.  That is why we named these advances after these men.

As an oncologist who has seen the fatal cost of our patchy, imbalanced and unfair healthcare system, I have to be at very least hopeful about ObamaCare; AKA the Affordable Care Act (ACA).  The list of benefits is so vast that whatever glitches happen along the way, I know that cancer patients will be helped:

-No pre-existing condition exclusion: So the 31-year-old programmer with Stage 1 breast cancer can change jobs without losing insurance.

-Healthcare coverage by parents until their child is 26: So families will not lose their homes paying for Hodgkin’ s disease in a 22-year-old.

-Guaranteed payment by insurers for patients entering experimental trials: So patients with any insurance can be involved in research, and everyone benefits from the latest advances.

-Free healthcare screening: So that my 58-year-old neighbor with a family history of colon cancer gets routine exams and life saving colonoscopies.

-Uniform healthcare insurance standards: So that the 45-year-old man with stomach lymphoma I saw last week, does not have to suffer and die because his employer brought a health policy, which excluded chemotherapy.

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When Your Doctor Dies

Several studies have explored the experience of grief that physicians feel when they lose a patient.

But what about when the patient loses a physician—when the doctor dies?

Dr. K was a well-known child psychiatrist, a loving husband, a father of two, and an irreplaceable support and friend for a number of children suffering from trauma, schizophrenia, bipolar disorder, autism and other challenging psychiatric conditions. Earlier this year, Dr. K passed away in a tragic accident while vacationing with his family. His loss was nearly unbearable for most of us.

Days after the funeral, a colleague of Dr. K inquired into whose care his patients would be transferred. She was shocked to hear that one of his patients, a young teenager suffering from Asperger’s syndrome, anxiety, and depression, had overdosed on his medication and committed suicide the day he heard of Dr. K’s death. It was no coincidence.

Behind the family members, close friends, colleagues, and acquaintances are the physician’s patients. They are part of a separate, almost secret life that the physician leads. And yet, the patient is whom the physician spends more time with than anyone else—they are in some ways the truest reflection of the doctor. While family and others grieve together in collective remembrance, patients often do so isolated, alone, confidential.

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Death of a Porn Star

 

Porn stars all across San Fernando were told to put their clothes back on and go home a couple of weeks ago on the news that a 29 year-old adult actress named Cameron Bay tested positive for HIV.

Shortly thereafter, the Internet lit up. News, judgments, and jokes shot left and right in newsrooms as freely as bodily fluids fly on set. Countless reporters and pundits surely worked overtime to do the deep background: who were Ms. Bay’s co-actors, who did what to whom, and inquiring minds want to know: were condoms used? Imagine the frenzied speculation, all those sticky keystrokes.

Don’t get me wrong: the details of the whodunit have medical import. Public health workers need to find who is at risk. Those who are at risk need testing and education including reminders that early tests can be falsely negative and must be repeated. Since this isn’t the first case of HIV among the scantily clad actors of San Fernando, CA, Ms. Bay’s diagnosis demands we try again to get porn stars to practice safer sex. My guess is legal maneuvers will never do much to affect the sex lives of the nude and infamous, but if porn viewers could learn to have fun even with a condom on set there might be a hope.

Twitter captured all this and more. It showed the diversity of our reactions to Ms. Bay and people like her. Some tweets expressed a sense of inevitability:

Some were judgmental:


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A New Way to Sue Health Care Professionals Using HIPAA?

Walgreens has been ordered to pay $1.44 million in a lawsuit brought against it for a violation of the Health Insurance Portability and Accountability Act (HIPAA) by one of its pharmacist employees.  While this may not sound like a big deal, this case represents only the second time HIPAA has been successfully used this way in court and it could have serious repercussions on the health care system.

The story begins when a Walgreens pharmacist looked up the medical records of her husband’s ex-girlfriend, whom she suspected gave her husband an STD. Apparently she found what she was looking for and told her husband about it, who then sent a text message to his ex and informed her that he knew all about her results.

The ex did not appreciate this, and told the Walgreens pharmacy about what happened.  At some point after that, the pharmacist accessed the ex’s medical records again, and eventually the ex filed a lawsuit against Walgreens, claiming it was responsible for the HIPAA violation because it failed to properly educate and supervise its employee.

Walgreens argued what the pharmacist did fell outside of her job duties and therefore it was not responsible for the breach.  The judge and jury disagreed, and the jury decided Walgreens was responsible for 80% of the damages owed the plaintiff (so I guess that means the total judgement for the plaintiff was $1.8 million). Walgreens has already said it will appeal.

As I said above, it may not sound like a big deal, but it potentially is.

Although HIPAA has a mechanism by which health care providers can be subject to federal civil and criminal penalties for violations, conventional legal wisdom says HIPAA does not allow for a “private cause of action”, meaning a private individual cannot sue a health care provider for breaching their medical privacy.

Or at least that’s how HIPAA used to be interpreted, before Neal Eggeson, the enterprising young attorney who successfully argued the only two cases in which HIPAA has been used in this fashion, came along.

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When Opting Out Is Not an Option

Henrietta Lacks did not give researchers permission to take her cancer cells and study them. After she died in 1951, her family was not asked permission as her immortalized cells were used in countless laboratories. This month, the National Institutes of Health finally took a step in righting that wrong, announcing that the Lacks family would help decide who can access Henrietta’s DNA.

Today, getting a patient’s permission, often in writing, is standard in experimental medical research. Well, not always. Currently, there are at least nine ongoing studies involving 62 U.S. cities and towns with a combined population of more than 45 million that do not involve getting permission. They take place during emergencies, such as when ambulances arrive at an accident where patients are too injured to give permission.

For example, imagine this scenario based on a recent study sponsored by the University of Washington. You are involved in a car accident. Paramedics find you bleeding severely. They give you fluids to keep your blood pressure up, but they intentionally give you a bag of fluid that is smaller than the standard. Then they monitor your medical outcome and compare it with patients who received the larger amount of fluids. During the emergency, neither you nor your family know about the study.

Vital research

Research on medical emergencies is vital in determining how to care for people with life-threatening injuries because we often do not have proof that standard methods are the best. People involved should be told that is how their records are being used.

In 1996, the Department of Health and Human Services and the Food and Drug Administration passed regulations allowing research about emergency treatment to occur without permission. For a study to qualify, patients need to have a life-threatening conditioncurrent standards of care must be unproven or performing poorly, and obtaining permission must not be feasible (such as an unconscious patient or a patient whose condition does not allow time for informed consent).

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Adventures in Medicine

While hard at work at building a new practice and (in the eyes of some) on my insanely misguided effort to build a medical record, I’ve been thinking.  Dangerous thing to do, you know.  It can lead to scary things like ideas, creativity, and change.  I know, I should be satisfied with the usual mental vacuum state, but I’ve found it a very hard habit to kick.  Perhaps there’s a 12-step group for folks with ideas they can’t suppress.

Anyway, my thoughts have centered around explaining what I am doing with all of the my time and energy, and, more importantly, why I am doing all that stuff that keeps me from writing about important things like body odor, accordions, and toddlers with flame-throwers.  I’ve really strayed from the good ol’ days, haven’t I?  The problem is, I’ve grown so accustomed to my nerd persona that I end up giving explanations that are harder to understand.  To combat this, I’ve decided to employ a technique I learned from my formative years: stories with pictures.  My hope is that, through the use of my incredible drawing talent I will not only explain things faster (saving 1000 words per picture), but prevent my readers from falling, as they often do, into a confused slumber.

So, here goes.

Adventures in Health Care: Part 1 – The Participants

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This is a patient.  Let’s call him “Chuck.”  Chuck is not really a “patient,” he’s a person.  Many doctors believe that people like Chuck don’t exist outside of their role as “patients,” but this has been proven false (thanks to the tireless work of Oprah and ePatient Dave). But since this story is about Chuck’s wacky adventures in health care, we will mainly think of Chuck in his role of “patient.”

Why are people like Chuck called “patients?”  Some people think it’s to put them in their necessary subservient place in the system.  I think it’s just to be ironic.

Chuck is a generally healthy guy, but occasionally he does get sick.  He also worries about getting sick in the future, and want’s to keep himself as healthy as possible.  This is when he uses the health care system, and when he is forced to be “patient.”
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Informed Refusal

Before undergoing many health care interventions, patients are asked to give their informed consent.  In most cases, it represents a mere formality.  The patient has come to the healthcare facility for the express purpose of undergoing the test or treatment, and after a quick explanation, the patient signs the consent form.  But not always – sometimes patients elect not to go through with it.

I know a woman in her late 70s, a highly accomplished health professional with a long and remarkably distinguished record of career achievement, who was recently diagnosed with cancer.  Her physician advised a complete diagnostic workup to determine how far the disease has spread, to be followed by courses of radiation and chemotherapy.  A vast and sophisticated medical armamentarium, unprecedented in the history of medicine, stands at the ready to take the full measure of her disease and then beat it back.

Yet after her oncologist carefully explained the benefits, risks, and alternatives to the recommended course, she declined to proceed further.  Instead of launching into an arduous medical regimen, she has chosen to focus the remainder of her time and attention elsewhere, on matters outside of medicine.  Why?

On hearing such a story, some of my medical colleagues question the patient’s soundness of mind.  Could she be depressed?  Might she be in the early stages of dementia?  Could she have simply failed to grasp the full gravity of her situation?  To them, the failure to take advantage of the wonders of modern medicine smacks of irrationality.  The solution?  Her physicians need to sit her down again and explain the situation more clearly.  Should this fail to elicit her consent, perhaps a psychiatry consult would be in order.

Yet to those who know her, these explanations are unsatisfactory.  We cannot attribute her decision to a lack of intelligence or sophistication about healthcare.  She has spent her entire career in the field, and helped to care for countless patients with life-threatening conditions, many of whom eventually died.  She knows what the care of such patients looks and feels like from firsthand experience.  She understands the risks of declining further treatment at least as well as many of the health professionals caring for her.

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#MomInHospital

A few weeks ago, a middle-aged man decided to tweet about his mother’s illness from her bedside. The tweets went viral and became the subject of a national conversation. The man, of course, was NPR anchorman Scott Simon, and his reflections about his mother’s illness and ultimate death are poignant, insightful, and well worth your time.

Those same days, and unaware of Simon’s real-time reports, I also found myself caring for my hospitalized mother, and I made the same decision – to tweet from the bedside. (As with Simon’s mom, mine didn’t quite understand what Twitter is, but trusted her son that this was a good thing to do.) Being with my mother during a four-day inpatient stay offered a window into how things actually work at my own hospital, where I’ve practiced for three decades, and into the worlds of hospital care and patient safety, my professional passions. In this blog, I’ll take advantage of the absence of a 140-character limit to explore some of the lessons I learned.

First a little background. My mother is a delightful 77-year-old woman who lives with my 83-year-old father in Boca Raton, Florida. She has been generally healthy through her life. Two years ago, a lung nodule being followed on serial CT scans was diagnosed as cancer, and she underwent a right lower lobectomy, which left her mildly short of breath but with a reasonably good prognosis. In her left lower lung is another small nodule; it too is now is being followed with serial scans. While that remaining nodule may yet prove cancerous, it does not light up on PET scan nor has it grown in a year. So we’re continuing to track it, with crossed fingers.

Unfortunately, after a challenging recovery from her lung surgery, about a year ago Mom developed a small bowel obstruction (SBO). For those of you who aren’t clinical, this is one of life’s most painful events: the bowel, blocked, begins to swell as its contents back up, eventually leading to intractable nausea and vomiting, and excruciating pain. Bowel obstruction is rare in a “virgin” abdomen – the vast majority of cases result from scar tissue (“adhesions”) that formed after prior surgery. In my mother’s case, of course, we worried that the SBO was a result of metastatic lung cancer, but the investigation showed only scar tissue, probably from a hysterectomy done decades earlier.

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Average Care at a Typical Hospital on an Ordinary Sunday in August

The Bike Path:

On a warm and sunny August Sunday, I was rollerblading with my kids on the Shining Sea Bikeway. On mile nine on the trip, I hit a tree root, went flying, and landed on my shoulder.  I could tell immediately that something was wrong — I couldn’t move my arm and was in the worst pain of my life. Feeling for my left shoulder, it was obvious that I had dislocated it. What happened next was that I received some of the best care of my life – unfortunately it was not from our healthcare system.

As I was lying on the bike path, nearly everyone stopped and asked how they could help. A pediatric nephrologist offered to pop my shoulder back into place. I declined. This wonderful couple on a two-person reclining bike stopped and insisted on pedaling me to the hospital. We were far from the road and knew that calling an ambulance was not straightforward. So I sat with my left arm dangling, in excruciating pain, while David rode the bike to Falmouth Hospital. It was a 20 minute ride finishing with a very steep hill. David apologized after each bump on the road as he heard me swear and wince.

The Emergency Room:

We finally made it to the ER, and, ironically, it was then that my care stopped being so wonderful.

It started off well enough – a triage nurse saw me walking in holding my arm, in distress.  She got me a wheelchair and brought me into triage. I explained what happened, gave my name, date of birth and described the pain as the worst of my life.  I was then shuttled to registration, where I was asked to repeat all the same information.  It felt surreal: I had moved all of 10 feet and yet somehow my information hadn’t followed me. The registration person asked me question after question.   Initially, the same ones: name, address, phone #, etc.  Then, my Social Security number (presumably so they could go after me if I didn’t pay my bill), my primary care physician’s name, his address, his phone #, my insurance status, my insurance #, my insurance card, my emergency contact, their address and phone #, etc. etc. etc.

I told her I was in excruciating pain and needed help.  A few more questions, she said.  She needed the complete registration.

I was wheeled to radiology and sat in a hallway for what felt like forever, groaning in pain. I couldn’t find a comfortable position. Six or seven people walked by – and as they heard me groan, they would look down and walk faster.  The x-ray technologist avoided eye contact.  It was hard — I was right outside her room.  Finally, I asked a passerby if she could help.  Caught by surprise (I must have sounded human), she stopped.  She looked at me.  She then went into the x-ray suite.  A few minutes later, a second technologist came out, saw my arm, and was the first to acknowledge that my arm looked painful.  He told me the ER was pretty quiet and he would get me in right away.

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