Monthly Archives: December 2016

“Patient’s Playbook” second part – Experts and Emergencies (book review)

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“Patient’s Playbook” second part – Experts and Emergencies (book review)

We recently came across “The Patient’s Playbook” by Leslie Michelson.  The book’s focus is how to get the best medical care, especially if you have a complicated medical situation.

Brain Support Network super-volunteer Denise Dagan read the book and passed along some notes on the second part of the book called “Experts and Emergencies.”  See below.

One highlight from her notes is this list of “tools” for getting a proper diagnosis and treatment plan from the best practitioner possible:

#1 – choosingwisely.org – Choosing Wisely includes lists of questions patients should ask about tests, medications, and procedures.

#2 – dartmouthatlas.org – Dartmouth Atlas provides the rates of use of different medical procedures and compares those rates from city to city.

#3 – use websites such as the National Institutes of Health (NIH), the Mayo Clinic, and WebMD to learn more about your diagnosis.  Then, turn to PubMed (pubmed.gov), a database of medical articles maintained by the US National Library of Medicine at the NIH, to narrow the field to the top specialists.

Robin

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Part II of the Patient’s Playbook, Experts and Emergencies, focuses on getting a proper diagnosis and treatment plan from the best practitioner possible.

Over-treatment can be as dangerous as under-treatment.  There are human reasons (remember, doctors are human, too) why both happen and Michelson gives us a couple tools to help determine whether we are suffering from either, and how to avoid both.

Tool #1: www.choosingwisely.org  The Choosing Wisely lists were created by the American Board of Internal Medicine in collaboration with a half million physicians from the major specialty societies (pediatrics, oncology, etc) to create questions patients should ask about certain types of tests, medicines, and procedures.  These lists cover wide-ranging topics, but focus on the most egregiously overused interventions.

Tool #2: www.dartmouthatlas.org  The Dartmouth Atlas of Health Care was created by the Dartmouth Institute for Health Policy and Clinical Practice.  It captures the rates of use of different medical procedures and compares those rates from city to city.  For example, in the 2012 report elective surgical procedures among Medicare recipients found patients in Casper, WY were seven times more likely to undergo back surgery than those in Honolulu, HI.  [The numbers do need to be taken in context, however, as Hawaii has a shortage of orthopedic surgeons.]

Unless you are in a life-threatening, emergency situation, do not start invasive treatment until you reach an evidence-based diagnosis.  First, partner with your primary care physician to get to the right realm of medicine.  Then, see specialists who can confirm or rule out the disease in question.  After reaching a diagnosis you feel confident about, insist on having informed discussions with experts in your illness (even 2nd and 3rd opinions) about pros and cons of different treatment approaches.

Chapter 6, “How to Find and Interview the Medical Experts You Need,” explains you can’t just Google, “Best ‘insert specialist here’ bay area.”  You get 858,000 results, all vying for your business.  Instead, search websites like the National Institutes of Health (NIH), the Mayo Clinic, and WebMD to learn more about your diagnosis.  Then, turn to PubMed (www.pubmed.gov), a database of medical articles maintained by the US National Library of Medicine at the NIH, to narrow the field to the top specialists.  The same names will keep popping up in the article bylines.  Click on the first name (usually the principal researcher) to see every article written by that person.  Once you have a few names at this level of specialty, you are in the no-mistake zone.  Any of them will do a fine job.  When you have a complicated illness, it’s worthwhile to consult with a major institution, at least for an expert opinion.  Michelson even includes some opening comments to use when contacting the specialists you’d like to consult with, and some questions to ask when deciding which is the right one to carry out your treatment plan.

In actuality, with the expansion of internet resources by organizations dedicated to research and education for a specific disorder, you can Google, “best movement disorder specialist parkinson’s disease,” and find search software by zip code from both the National Parkinson’s Foundation Centers of Excellence, and Partners in Parkinson’s Movement Disorder Specialist Finder.  Continuing with Mr. Michelson’s method will further narrow the field of researchers and practitioners to cutting edge surgeons in deep brain stimulation, for example.

Lastly, in Chapter 7, Emergency Room 101, Michelson gives us some guidelines for deciding between an urgent care and the ER.  He explains when it is better to drive yourself to the ER or call 911, and which ER to go to (some specialize in trauma, some aren’t equipped to deal with infants, for example).  He recommends knowing the emergency rooms in your area so you can ask to be taken to the one that seems most appropriate because transferring hospitals is incredibly difficult and can result in your insurance not covering either your hospitalization(s) or treatment.  If you find yourself in the wrong hospital, the author gives tips for motivating the first hospital to a) be cooperative in making records available for you to get a second opinion, and b) transfer you to another hospital for treatment, if that is your preference.

He also has some advice for minimizing mistakes due to communication breakdowns, starting with having your basic medical information on your person at all times (as mentioned early on in the book), and reminding us that we are in charge during a hospitalization.  We should ensure staff explain their actions before proceeding and complain to the head nurse when something is done improperly.  If you’re at a teaching hospital you will probably have students coming to your bedside, and that’s fine, but if you’re dealing with anything more complex than the flu or a sprain, be sure to ask to be examined by the attending physician.  There’s no need to be rude about it.  You’re the consumer.  They’re probably going to give you a customer satisfaction survey upon discharge and, at the end of the day, the hospital needs to be profitable.

Coming soon: Part III, What to Do When Serious Illness Strikes.

– Denise

MSA Overview from UK Medical Professional Reference Website

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Yesterday, I stumbled across a medical professional reference website for UK doctors, called Patient (patient.info).  The overview of MSA is pretty good.  These topics are addressed — diagnosis, etiology, epidemiology, presentation, diagnosis, differential diagnosis, investigations, management, prognosis, and references.  Though the language is technical, many within Brain Support Network will have no difficulty understanding the text.

I’ve copied a short excerpt below.

Robin

patient.info/doctor/multiple-system-atrophy
Multiple System Atrophy

Multiple system atrophy (MSA) is a rare neurodegenerative disorder, caused by cell loss in certain areas of the brain and the spinal cord, leading to a variety of symptoms affecting especially the functions of the autonomic nervous system and the motor system. These are characterised by Parkinsonian features of varying severity, cerebellar ataxia and autonomic (particularly urogenital) dysfunction. There may also be some corticospinal features.

 

PSP Overview from UK Medical Professional Reference Website

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PSP Overview from UK Medical Professional Reference Website

Today, I stumbled across a medical professional reference website for UK doctors, called Patient (patient.info).  The overview of PSP seems rather up-to-date even though it was last checked in January 2014.  (There was some out-dated info on davunetide.)  These topics are addressed — diagnosis, epidemiology, differential diagnosis, presentations, management, complications, prognosis, and references.  Though the language is technical, many within Brain Support Network will have no difficulty understanding the text.

Coincidentally at Sunday’s local support group meeting, we discussed the two clinical subtypes of PSP.  For more info on these two subtypes (and several less common ones), see the Brain Support Network website, brainsupportnetwork.org.

Copied below are a few excerpts.

Robin

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Progressive Supranuclear Palsy
Synonym: Steele-Richardson-Olszewski syndrome

Progressive supranuclear palsy is a neurodegenerative syndrome which was first described in 1964. It affects cognition, eye movements and posture. Characteristics include supranuclear, primarily vertical, gaze dysfunction accompanied by extrapyramidal symptoms and cognitive dysfunction. The cause is unknown.

Progressive supranuclear palsy is the most common atypical Parkinsonian syndrome. There are two main clinical subtypes:

* Richardson’s syndrome: prominent postural instability, supranuclear vertical gaze palsy and frontal dysfunction.

* PSP-Parkinsonism (PSP-P): asymmetrical onset, tremor and moderate initial therapeutic response to levodopa.

“The Patient’s Playbook” first part – How to be Prepared (book review)

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“The Patient’s Playbook” first part – How to be Prepared (book review)

We recently came across “The Patient’s Playbook” by Leslie Michelson.  The book’s focus is how to get the best medical care, especially if you have a complicated medical situation.  Mr. Michelson encourages us all to have a personal relationship with our primary care physician.  When you are looking for a new PCP, focus on the PCP’s willingness to invest in a personal relationship and to coordinate with specialists to manage care.

Brain Support Network super-volunteer Denise Dagan  read over the book and passed along some notes on the first part of the book called “How to be Prepared.”  See below.
One highlight from her notes is this — In order to avoid misdiagnoses, delayed diagnosis, or medical mistakes, the book’s author recommends:
* Create a family health history to share with your doctors.
* Collect your medical records and continue to maintain and update a personal copy.
* Keep in your wallet/purse a list of your diagnoses, major surgeries, allergies, medications (including supplements), physicians, emergency contacts, and medical insurance information.
Robin
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Recently, I read The Patient’s Playbook, by Leslie Michelson.  It doesn’t discuss any disorder specifically, but how to get the best medical care, especially if you have complicated medical circumstances.  Here are some highlights from Part I.

According to the inside cover, Mr. Michelson is the founder, chairman, and CEO of Private Health Maintenance, a patient-focused company dedicated to helping people “obtain exceptional medical care.  He has spent the last 30 years guiding thousands through our complex health care system.  Prior to founding Private Health Management in 2007, he was CEO of the Prostate Cancer Foundation.  He received a BA from John’s Hopkins University and a JD from Yale Law School.”

Not surprisingly, Michelson cites that the root of the healthcare problem, from a consumer standpoint, is insurance companies pay per office visit and procedure.  Bean counters tell doctors they must see x-number of patients per day to cover the costs of running a clinical operation, resulting in a single doctor following the health of 2,000-4,000 patients at once.  How could a single physician possibly keep in mind each individual even if very few of them have complex health concerns.

Of course, this is Michelson’s point.  Most of us don’t have a primary care physician (PCP) who is familiar with the details of our health, but we should have, especially as we age and if we do have complex health issues.  Michelson explains that NOT having a personal relationship with our PCP often results in two common difficulties.

1.  Misdiagnosis, either because the doctor is not able or willing (time-wise?) to delve into the patients history and connect the dots.  He or she hears a complaint, treats the symptom, and never follows up – or – makes a note about a possible follow up, which never happens, resulting in the patient returning repeatedly, taking years (if ever) to find the underlying cause.

2. “The Specialist Shuffle in which every new doctor performs diagnostics to determine whether the patient has a condition that is within his realm of expertise, and if he can’t diagnose her, he’d prescribe medication to try to relieve symptoms, and if that doesn’t work, he’d pass her on to the next specialist, who’d go through the same process.  This exposes patients to unnecessary tests and treatments that cost a lot of money, time, needless anxiety and stress.  For patients with nonspecific symptoms, the shuffle can go on for years with no resolution.”

The answer?  Ask for referrals for a good PCP, and the reasons why they come recommended (so they don’t just share a love of golf with the person you’re asking), interview candidates, even pay a premium to retain your choice.  Michelson doesn’t believe credentials, research and publishing are the mark of a good PCP (that’s a good specialist).  What you want are organization, hospital privileges, willingness to invest in a personal relationship with you and to coordinate with specialists to manage your healthcare.  Chapter 2 goes into some detail about how to find the right PCP for you.

Other recommendations to avoid misdiagnoses, delayed diagnosis, or medical mistakes are:

1. Create a family health history to share with your doctors.  Because of genetics, include immediate family members ailments, even if they never received a diagnosis.  Seemingly unrelated symptoms, undiagnosable in past decades, can lead to a quick diagnosis for you today.

2. Collect your medical records and continue to maintain and update a personal copy.  The HIPAA law protects your right to your own medical records.  Guidelines for what information is important, depending on various different medical circumstances, is specified in Chapter 3, as well as how to organize records for easy review by physicians.

3. Take inventory (make a list) of your: diagnoses and major surgeries, allergies, drugs/medications your taking (including supplements), a roster of your physicians, emergency contacts, and insurance information.  Keep this in your wallet or purse.

The last bit of advice in part I, How to Be Prepared, is to develop a support team.  It’s up to you to coordinate your care, even though most of us are ill equipped, especially through overwhelming emotions when you suddenly learn you have a serious problem.  It is unlikely one person has the skills, time, and energy, so carefully select a team.  Chapter 4 goes into some depth as to what skills are needed and how to go about bringing it up with family and/or friends.

Coming soon: Part II, Experts and Emergencies.

– Denise

“Caring For A Loved One At Home Can Have A Steep Learning Curve”

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“Caring For A Loved One At Home Can Have A Steep Learning Curve”

This is a good article from Kaiser Health News (khn.org) this Monday.  The story is part of a partnership that includes WHYY (a public station in Philadelphia), NPR and Kaiser Health News.  You can also listen to the 4.5-minute radio story on the KHN website.

The focus is on family caregivers who don’t have training in nursing skills and home care skills.  Examples include caring for a bed sore, changing sheets while the family member is still in the bed, taking blood pressure, monitoring breathing, and providing a bed bath.

The transition from hospital to home (or rehab center to home) is especially a problem.  Solutions to this challenge discussed in the story include in-hospital or in-rehab center training for family caregivers and bringing home health assistance into the home.

According to the article:  “Thirty-three states have adopted legislation requiring medical centers to give caregivers basic training or instructions when a patient heads home from the hospital, though how this is carried out is largely up to the hospital.”

Though California is one of those 33 states, I’ve never heard of any of our group members receiving training at a hospital or rehab facility.

Here’s a link to the article:

khn.org/news/caring-for-a-loved-one-at-home-can-have-a-steep-learning-curve/

Caring For A Loved One At Home Can Have A Steep Learning Curve
By Taunya English, WHYY
Kaiser Health News
December 12, 2016

The full article is copied below.

Robin

Caring For A Loved One At Home Can Have A Steep Learning Curve
By Taunya English, WHYY
Kaiser Health News
December 12, 2016

Dementia has been slowly stealing Ruth Perez’s memory and thinking ability for 20 years. Her daughter, Angela Bobo, recalled when it was clear that her mother was never going to be the same.

“She would put food together that didn’t belong together — hamburger and fish in a pot. Mom never cooked like that,” she said.

The mother and daughter live together in Yeadon, Pa., just outside of Philadelphia.

Perez is literally in the center of the family. She spends much of her day tucked under a fleece blanket on a recliner in the middle of the living room. The 87-year-old doesn’t seem to notice as her daughter and grown grandchildren come and go, but they keep up a steady one-sided conversation with her anyway.

“If I kiss her, she might lean towards me, and sometimes she’ll nod,” said Bobo. “What she can do, at times, is smile at you and say a word like, ‘uh huh.’”

Perez can’t lift her arms or move her legs.

A rotating crew of family members takes turns caring for her. They are experienced and they have routines and schedules, but a few months ago, the pressure of lying in one place created a small blister on Perez’s hip. The blister burst and that became a bedsore and wouldn’t heal.

“I couldn’t get it to go away,” Bobo said. “When I say we were at our wits’ end to fix this, we were beyond there.”

About 44 million Americans are unpaid family caregivers like Bobo — sometimes for a child with special needs, more often for a frail older adult, according to a 2015 estimate from the National Alliance for Caregiving. They are often women with a full-time job and children, though now 40 percent of caregivers are men, and millennials are becoming more involved in caring for someone at home, says John Schall, CEO of the Caregiver Action Network.

“In too many cases, people just learn this stuff by themselves and that’s really kind of dangerous,” Schall said.

That’s because many people don’t have the necessary skills. Thirty-three states have adopted legislation requiring medical centers to give caregivers basic training or instructions when a patient heads home from the hospital, though how this is carried out is largely up to the hospital.

Ken Everhart, a retired tech guy from North Carolina, became a caregiver for his wife, Genie, for just a few months 10 years ago, when the two were in their mid-50s.

“What we needed was for someone to sit me down in a class and say, ‘Here’s how you change the sheets while she’s still in the bed. Here’s how you take her blood pressure. Here’s how you monitor her breathing,’” Everhart said.

He worried he’d drop her as they struggled to get to the bathroom. He wasn’t sure when to call 911. That uncertainty weighed on Ken — especially when Genie was rushed back to the hospital three times.

“I had given her a straw to drink out of, and a sippy cup, and I went to make a phone call. I wasn’t gone five minutes and I came back in and she was choking,” he said. “I should have sat her up, and I should not have allowed her to have anything to drink while I wasn’t in there to watch. But I didn’t know that.”

Many families can’t afford to use trained caregivers. Hiring help at home for just a few hours a week can cost $10,000 to $15,000 a year.

“When patients leave the hospital, they generally leave quick and sick,” said Susan McAllister, medical director of quality in the Division of Hospital Medicine at Cooper University Health Care in Camden, N.J. Her team includes the social workers, home health nurses and others who help plan a patient’s discharge from the hospital.

McAllister said these days it’s common to come in with a heart attack, get medicine to open a blocked artery, and leave just 48 hours later. The short hospital stay isn’t a problem, she said, but the transition home has to be done right.

In October, Minnesota became the latest state to pass laws to prepare potential caregivers to know what the sick person may need. California, New Jersey, Oklahoma and New York also have versions of a Caregiver Advise, Record, Enable (CARE) Act. Across the country, AARP has lobbied strongly for the proposals.

These laws generally require hospitals and rehabilitation facilities to record the name of the caregiver in the patient’s medical chart. Medical centers and rehab centers must offer caregivers basic training or instructions, and the caregiver is supposed to be notified if a patient is discharged to another family member or back home.

McAllister said years ago, Cooper realized it needed to do a lot more to make sure people were healing safely at home. From day one, caregivers are part of discharge planning, she said. On day two, a social worker might help the family shop for help at home.

“On day three, we may start teaching inside the hospital,” McAllister said.

Hospitals don’t get paid more for those extra steps. But now Medicare hits medical centers with a financial penalty if too many patients bounce back to the hospital and have to be readmitted. The federal government’s Hospital Readmissions Reduction Program was created under the Affordable Care Act.

Many at-home caregivers say the responsibility weighs heavily.

“It scares you,” said Angela Bobo. “When I’m in pain, I can tell you. She can’t tell me that’s she’s in pain.” So when her mother’s bedsore wouldn’t heal after so many days, Bobo said, “That’s when I said: ‘I’m going to take her to the doctor’s, because I don’t know what’s going on with this.’ ”

Bobo took her mother to the doctor, and he basically wrote a prescription saying her mom needed more help. That way, Medicare paid for skilled nursing care at home, and Angela Bobo got lessons in cleaning and dressing her mother’s wound. Now she knows what to expect.

“I told her it’s going to get worse before it gets better,” said David Wilson, a registered nurse from Crozer-Keystone Home Health Services who went to Bobo’s house. He’s a wound-care specialist whose job is house calls.

“To get a wound better, you have to remove the dead tissue and start from the ground up,” Wilson said.

Some nurses come to the house, do their job and leave, but Wilson said teaching is part of his work. Lots of times he’s the one nudging reluctant family caregivers who worry they’re going to do the wrong thing.

“I will tell you in home care, the biggest thing is fear,” Wilson said.

Wilson made several visits. He recommended a new wound-care regimen for Ruth Perez’ bedsore, and Perez got an airflow mattress that relieved the pressure on her skin. Medicare paid for that, too. The nurse returned several times to check on the family, and Bobo said that gave her more confidence that she was doing the right things to care for her mother.

This story is part of a partnership that includes WHYY’s health show The Pulse, NPR and Kaiser Health News.