“Patient’s Playbook” third part – What to do when serious illness strikes (book reviewe)

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 third (and final) part of the book called “What to do when serious illness strikes.”

The third part focuses on the four steps of intensive care management:

* Immersion:  learn all you can about the illness
* Diagnosis:  reaching an accurate diagnosis
* Treatment:  determine the right treatment
* Coordination:  coordinate care between primary care physician and specialists

“The goal is to get to the ’no mistake zone’ where you’ve done all the research, found the best specialist, and chosen the right treatment.  There’s nothing more you can do to get the best outcome.”

Some attention in the third part of the book is paid to hospitalizations.  Suggestions are given for information to take to the hospital and things to do to prevent problems in the hospital.

Keep reading for more details….


The Patient’s Playbook
by Leslie Michelson
Notes on part III – What to Do When Serious Illness Strikes
by Brain Support Network Volunteer Denise Dagan

In part III of the Patient’s Playbook, What to Do When Serious Illness Strikes, Leslie Michelson introduces us to the four steps of intensive case management.  They are Immersion (learn all you can about your illness), Diagnosis (reaching an accurate diagnosis), Treatment (determine what is the right one for you), and Coordination (of your care between your primary care physician, specialists, and/or surgeons).  The goal is to get to the ’no mistake zone’ where you’ve done all the research, found the best specialist, and chosen the right treatment.  There’s nothing more you can do to get the best outcome.

To immerse yourself in the medical issue that concerns you, some major medical institutions with savvy web presences provide video interviews with experts and patient-friendly summaries of research.  If you’re not very computer savvy, clinics and hospitals have health libraries that can get you started, and don’t forget your local library’s reference desk.  Once you have a basic understanding of what you’re dealing with and the vocabulary under your belt, branch out to PubMed, Expertscape, and websites of reputable institutions.
Use this information to have intelligent conversations with specialists in the right field of medicine about the right treatment options for you.  In most areas of expertise, to get the best practitioner you would have to pay a premium.  The best lawyer, for example, may be prohibitively expensive.  In medicine, insurers usually cover 80%, even if the specialist is out of network.  Your health is the one area where you should go for the best if you have a complicated medical issue and insurance, especially if you can travel.

Two specialists may disagree on which treatment option is ideal for your condition.  When that happens you have to ask a lot of questions to compare risk/benefit, recovery times, possible outcomes, the number of times the specialist has performed the procedure, etc. and weigh that information against your values, and practical matters like travel distance, non-medical expenses, etc.

One resource to review whether you are being offered all possible treatment options is the US Dept. of Health and Human Services, National Guideline Clearinghouse at www.guideline.gov   It is a slog, because it is written by and for specialists, but it is medically based and I’ll bet most people aren’t even aware of it.

[Robin’s note:  www.guideline.gov contains no specific guidelines for DLB, PSP, CBD, or MSA]

All of this and the subsequent coordination of care as the treatment plan is put into place, is an overwhelming task. A patient, alone, should not attempt it – regardless of the amount of time available.  They need a quarterback to share the workload and emotional stress of the process.  More importantly, your quarterback needs to be present during treatment to advocate with medical staff, keep track of appointments, medications, records, and communicate among the entire health care team.

“Patients and their families need to be aware that hospitals are dangerous places.  They really shouldn’t be there any longer than they need to be,” says Dr. George Wilding, an oncologist from Wisconsin.  “The biggest problem…is communication.  And it’s well documented that the points of concentration where you look for potential communication problems are the handoffs…between one human and another.  Patients and their family members need to have a sense of awareness of what’s happening.  Talk to people.  If things don’t jibe, raise questions.”  If you still aren’t getting the information you need, ask for a meeting with the doctor(s) through the head nurse or social worker.

The author suggests you bring three types of information with you if you are hospitalized:

1- Medical Information.  Tape a list next to your bed that spells out in large type: your diagnosis, your medications, any allergies, and major medical issues of importance, like secondary diagnoses, diabetes, a stent, hip replacement, etc.

2- Organizational Information.  Post a phone and email contact list of your physicians and family members, photocopy of your insurance card, the place you were born, and religious affiliation.

3- Personal Information.  You want to be thought of as a human being.  Posting your place of birth and religious affiliation will help, but bring family photos for your bedside table or tape them on the wall.  Bring in your favorite books, music, and sitting activities like knitting or cards.

He also recommends taking these actions to prevent hospital-acquired conditions like drug interactions, falls, infections, pressure ulcers, pneumonia, and more:

1- Drug information.  Before you accept any new medications ask what the drug is and what it’s for.  If you have a complicated regimen, create a daily schedule for an entire week and tape it to the wall.  Any changes to the schedule must be properly authorized by your doctor.

2- Treatment information.  Be alert to, and ask questions about, seemingly unnecessary tests or treatments.

3- Symptom information.  It’s easier to treat infections if they are caught early.  So be aware of your body.  Tell your nurse promptly, and be persistent, if necessary.

4- Clean hands.  Don’t be afraid to remind medical staff about washing their hands before working with you.

5- Medical Information.  Make sure new caregivers who come to treat you are aware of your condition, your medications, and your allergies.

6- Your chart.  Don’t hesitate to ask to see your chart.  Check it for accuracy, completeness, and correct any mistakes.

Finally, the author presents a list of discharge items you should have perfect clarity about before you leave the hospital including: understanding your diagnosis and ultimate treatment, recovery expectations, special equipment, activity limitations, dietary restrictions, wound care, whom to contact if complications occur after discharge, follow up appointments, and medication schedule.

I checked out the Patient’s Playbook from the public library.  I don’t think I’ll buy it, but, I’m going to remember all the good advice it contains and seek it out if I find myself overwhelmed with the prospect of getting an accurate diagnosis, confused by conflicting treatment recommendations, or juggling multiple diagnoses as I age.  I hope you will too.

– Denise