Category Archives: Living with a Neurological Condition

Nursing home residents gain more power (Washington Post)

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Nursing home residents gain more power (Washington Post)

There’s an article in today’s Washington Post about new Medicare rules that give nursing home residents more power.

The article’s author shares these highlights of the new rules:

* Making the nursing home feel more like home: The regulations say that residents are entitled to “alternative meals and snacks . . . at non-traditional times or outside of scheduled meal times.” Residents can also choose their roommates, which may lead to siblings or same-sex couples being together. And a resident also has “a right to receive visitors of his or her choosing at the time of his or her choosing,” as long as it doesn’t impose on another resident’s rights.

* Bolstering grievance procedures.

* Challenging discharges: Residents can no longer be discharged while appealing the discharge. They cannot be discharged for nonpayment if they have applied for Medicaid or other insurance, are waiting for a payment decision or are appealing a claim denial.

If a nursing home refuses to accept a resident who wants to return from a hospital stay, the resident can appeal the decision. Also, residents who enter the hospital have a right to return to their same room, if it is available.

A state’s long-term-care ombudsman must now get copies of any involuntary discharges so the situation can be reviewed as soon as possible.

* Expanding protection from abuse.

* Ensuring a qualified staff.

Here’s a link to the article:

www.washingtonpost.com/national/health-science/new-rules-give-nursing-home-residents-more-power/2016/12/27/c0959f74-c894-11e6-bf4b-2c064d32a4bf_story.html

Health & Science
New rules give nursing home residents more power
By Susan Jaffe 
Kaiser Health News 
Washington Post
December 27, 206  at 10:44 AM

Robin

 

 

New York – State law makes brain donation difficult

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Generally speaking, brain donation is allowed in all states. However, New York makes brain donation difficult because state law requires that the brain be procured at a hospital. No New York hospitals are willing to plan in advance for brain donation. Most New York hospitals are reluctant to cooperate, even on a last-minute basis. If you live in the state of New York, the best option is to have your loved one transported across state lines for the brain procurement. Ask your funeral home or cremation organization if this is a viable option.

“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

“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

“Communicating and Advocating with Medical Professionals” (workshop notes)

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“Communicating and Advocating with Medical Professionals” (workshop notes)

Brain Support Network super-volunteer Denise Dagan recently attended a Family Caregiver Alliance workshop on “Communicating and Advocating with Medical Professionals.”  The workshop leader, Christina Irving, LCSW, is a longtime friend of BSN, having spoken at our symposia and attended our local support group meetings.

I encourage the caregivers in our network to know about Family Caregiver Alliance (caregiver.org), which supports caregivers in six Bay Area counties, or the affiliated California Caregiver Resource Centers.  You can find a list of them here:
www.caregiver.org/californias-caregiver-resource-centers

Here are Denise’s notes from the workshop.

Robin

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Recently, I attended a workshop hosted by the Family Caregiver Alliance on “Communicating and Advocating with Medical Professionals.”

Christina Irving, LCSW, directed us to a 44-page online booklet that discusses this topic in depth.  Talking With Your Doctor, A Guide for Older People is available to read or print at:

Talking With Your Doctor: A Guide for Older People
www.nia.nih.gov/health/publication/talking-your-doctor/opening-thoughts-why-does-it-matter

There are a number of challenges to effective communication with medical professionals.  Hopefully, having some idea of your rights, and knowing you’re not asking for more than you deserve, will put you in a position of confidence.

Here are some things we discussed in the workshop.

You can communicate with your doctor better by taking an active role in your health care. In the past, the doctor typically took the lead and the patient followed.

Christina made sure we were aware of a fairly recent change in Medicare.  “In January of 2014, Medicare officials updated the agency’s policy manual — the rule book for everything Medicare does — to erase any notion that improvement is necessary to receive coverage for skilled care. That means Medicare now will pay for physical therapy, nursing care and other services for beneficiaries with chronic diseases like multiple sclerosis, Parkinson’s or Alzheimer’s disease in order to maintain their condition and prevent deterioration.”

You may not have heard about this before because Medicare was not required to inform beneficiaries, although Robin got the word out to this list at the time.  See:

Medicare Policy Change – No Improvement Requirement
www.brainsupportnetwork.org/medicare-no-improvement-requirement/

Then, we had a discussion that began with finding a qualified doctor with whom you feel comfortable speaking about everything.  Expect that doctor to work with you as a team, communicate with specialists to ensure you get the right diagnosis and confer with you on treatment options.  Know that you have a right to an interpreter, if you need one.

But, its not just a one-way street.  When you go in for an appointment be prepared.  Keep track of the symptoms you came to discuss: when do they occur? what makes them better or worse?  Make a prioritized list of what you want to discuss.  Share all your symptoms, medications you are taking, your habits, stressors, etc., and ask questions.  Bring someone with you to help report symptoms, take notes, and remember what the doctor says.

Doctors often place responsibility on you to do or acquire something related to your treatment.  For example: they may recommend dietary changes, or medical equipment.  If you find you don’t know exactly how to carry out the instructions, even if you’ve already left the office, call and say, “I don’t know how to implement this.  I need someone to educate me.”  The doctor should write a prescription for physical or occupational therapy consult, nutritionist or dietician consult, or someone in the office should explain exactly what to do.

Before you leave an appointment be sure you understand why tests have been ordered, how to prepare for them, dangers or side effects, how you will find out the results and when, what will you know after the test, and how to proceed.  You should understand the implications of your diagnosis and what you can expect.  And ask about medications, how you are to take them, side effects and alternatives.

Make sure you understand what your treatment involves, what it will or will not do, and if the doctor suggests a treatment that makes you uncomfortable ask if there are alternatives.  Discuss cost, risks and benefits, and consider your values and circumstances with respect to each treatment option.  Specialists can be hyper-focused on their area of expertise and recommend therapies in conflict with the patient’s unrelated diagnoses, especially as we age.  Point out these conflicts and don’t leave the appointment without a treatment plan that works for you.

You have the right to a second opinion and should always ask for one when surgery, radiation, or chemo are recommended.  Second opinion referrals are also reasonable when you want confirmation of a diagnosis or recommended treatment, or when you aren’t comfortable with your current care.  Take advantage of our marvelous local research and teaching hospitals.  If you’re with Kaiser it may mean traveling to a Kaiser location that specializes in not just neurology, but movement disorders, for example.

If you are hospitalized most of this advice applies with the added element of discharge planning.  Under the new CARE Act, hospitals are required to provide each admitted patient the chance to identify a family caregiver, to notify the family caregiver by the time a discharge order is written of possible discharge or transfer, and provide education to the family caregiver in a culturally competent manner and in the caregiver’s language of fluency.

Communicate your needs and limitations to the discharge planner assigned to your case.  Discuss whether it is best to discharge to home or a facility, and what insurance and/or Medicare covers.  If everyone agrees it is best to discharge to a facility the hospital should find an available spot for you.  If it is not up to your standards, you may be able to make them find you another by checking that the first is equipped to perform all discharge orders safely.  If they are and you still don’t like the place, you must do the legwork to find an alternative acceptable bed on your own.  California Advocates for Nursing Home Reform (canhr.org) can help.

Next Step in Care (nextstepincare.org) “provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions (hospital discharge, or from home to a care facility) for chronically or seriously ill patients” with checklists and videos in four languages.

If you feel a hospital discharge is not safe, or premature, you can appeal by calling Livanta, the Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO) for Medicare in our area, at 1-866-615-5440.  Information about appealing a Medicare hospital discharge is available at:

Medicare Claims and Appeals
www.medicare.gov/claims-and-appeals/index.html

Usually, just letting the hospital know you are aware of your rights to appeal a discharge, is enough to slow the process until all your concerns are addressed.

If you’re having difficulty communicating with medical professionals or coordinating care in a clinic or hospital, seek out their Social Work Staff, Care Coordinators, or Case Management Team.  These offices are there for just this purpose.  Failing that, consider hiring a Geriatric Care Manager.  They charge by the hour, but their certification trains them to facilitate communication and coordinate care among medical professionals.

– Denise