Many years ago, I had a memorable encounter with the medical chief of staff of my new hospital employer. I had been invited (summoned) to attend an early morning, medical staff meeting so they could “meet” the organization’s new finance person. I had been forewarned that the Chief of Staff was old school and did not have much appreciation for “the suits from corporate.”
The meeting was largely uneventful with me being asked only a few simple questions. Before adjourning, the chief of medical staff leaned over and asked me, “Jay, do you know what they call a medical student that graduates last in their class?”
Thinking this was some important test question, I paused before answering and finally couldn’t think of an answer, so replied, “No, I don’t think I know that one.”The Chief of Staff got this sly look on his face and quietly said, “Doctor.”
He smiled and told me I had a standing invitation to attend this meeting anytime I wanted. While today’s meeting was uneventful, I was informed normally physician disciplinary matters were a regular part of the agenda.
I use this introduction for our next topic about the importance of choosing the right doctor and reaching what’s called the “No-Mistake Zone” defined by Leslie D. Michelson in his book, The Patient’s Playbook, How to Save Your Life and the Lives of Those You Love. Up until the aforementioned encounter with the medical chief of staff, I’d never given much thought to physician qualifications, hospital quality or the extent variation exists in the provision of healthcare services in the United States. In Michelson’s “playbook,” he provides an A to Z outline of how to be prepared for encountering the United States’ healthcare system. The book is just over 10 years old and is as relevant today as when it was first published. In our opinion and because of changes having occurred and continuing to occur in delivering healthcare services, the concepts and approaches are even more important today.
Changes having impacted how the consumer/patient must directly or indirectly navigate the healthcare marketplace include, replacement of indemnity health insurance with healthcare managed care plans; conversion of the independent physician owned practice to physician employment by hospitals, health systems and insurers; expansion of the influence, control and power of the pharmaceutical industry; growth of the number of publicly traded health insurance companies; expansion from traditional Medicare to Advantage Medicare Plans; and the passage of the Affordable Care Act in 2010 (Obamacare) to name just a few.
These changes have caused what was once considered a “cottage industry” into a massively sophisticated, financially-driven, industrialized business chasing enormous amounts of corporate and government money. Unfortunately, the consumer/patient has not always received positive benefits from all this change. How much or little you utilize healthcare services will determine how much support you should incorporate into developing your “playbook.” For example, if you suffer from a chronic condition, have a family medical history requiring monitoring or treatment, or other circumstances requiring medical attention will determine the sophistication of your “playbook” development is necessary.
Our intention is not to duplicate Michelson’s book. We strongly recommend, if you or a family member are battling a medical challenge, reading the book and incorporating the many suggestions will go a long way in putting the odds in your favor. There are no guarantees of success in a medical challenge but reading and incorporating the suggestions will definitely provide assistance one may not think of on your own.
What we are going to provide is an abbreviated, excerpted outline of the four steps Michelson characterizes as “Getting to the No-Mistake Zone.” These are steps he defines as “Intensive Case Management.” They are relevant in the case of a serious medical condition or challenge. They are must-haves in the toolkit of a medical advocate or coach.
The following sections have been excerpted from Leslie D. Michelson’s book The Patient’s Playbook, How to Save Your Life and the Lives of Those You Love; Alfred A. Knopf, New York 2015. PPs: 195, 211-212, 242-243,266-277.
STEP 1-Immersion
-Learn all you can about your illness and the physicians specializing in the treatment. The immersion process first involves selecting a healthcare advocate and coach that you trust and know will be committed to you for as long as necessary. Next your advocate/coach and you will go online and find as much relevant research material as possible on your condition. It’s imperative to find the best physicians to consult and determine which one(s) will be on your treatment team.
-Gather all your medical records in an easy-to-share format.
-Select the physician(s) you wish to meet and the hospital(s) you want to use. At first, using more than one physician to consult with may prove useful. Eventually, this will require being narrowed down to a single person and facility.
-The aforementioned step might require an element of finesse. Physicians are connected to hospitals. If in the previous step you’ve selected a physician and hospital that are incompatible, decisions may need to be revisited. In addition, depending upon the urgency of your condition, availability of either a physician or facility may require flexibility.
-For chronic illness, three areas needing continual monitoring are 1)changes in your symptoms; 2)changes in your health; and changes in the science.
-Depending on your diagnosis, keeping tabs on the scientific progress may be critical.
-When selecting hospitals seek out those with entire departments devoted to your illness. If surgery is deemed necessary, ask how many times this surgery has been done at the facility and how many patients with this diagnosis have been seen.
STEP 2-Diagnosis
-Get the right diagnosis before agreeing to surgery or other invasive procedures.
-Know the three most common diagnostic errors are: a failure to diagnosis, a delay in diagnosis, and a wrong diagnosis.
-Diagnostic errors are often caused by: doctors getting fragmented patient’s medical history; patients failing to disclose symptoms; misinterpreted, mishandled, or never reported to the patient or physician radiology images or pathology slides; physicians sticking to an incorrect diagnosis.
–You don’t necessarily need a second opinion-you need the right opinion! Be sure your physician is an expert with in depth experience in your illness.
-Check the websites of the better known hospitals across the country, many have second-opinion forms online.
-Physicians can be subject to confirmation bias when they don’t have time to sort through complicated cases. Seeking expert opinions from practitioners who operate outside your first doctor’s orbit may help avoid this.
-When a diagnosis remains uncertain, continue to seek expert opinions until you are satisfied that you have the best answer. Your advocate/coach is critical in finding the right experts.
STEP 3-Treatment
-Try to refrain rushing toward the very first treatment proposal you hear.
-Focus on two questions: 1) What is the best course of treatment for my specific disease? and 2) Who is/are the best doctor(s) to administer that treatment/performmy surgery/oversee my therapy?
-You will know you are in the NO Mistake Zone when (1) your diagnosis is specific and confirmed; (2) you’re convinced about when and why you need to be treated; (3) you’ve explored the most promising treatment options; (4) you’ve met with experienced physicians who practice at institutions appropriate for the care you need; (5) you can visualize the steps of your treatment plan; (6) your gut is telling you “This is the treatment for me, and this is the physician I want carrying it out.”
-Separate the data collection from the decision making. You don’t have to make a decision yet. Remain neutral until all the data are in.
-Don’t obsess over the things you would need a medical degree to understand. Instead , get a sense of the physician, the institution, and the very important measurable factors like volume and complication rates.
-Lean on your advocate/coach and family for help with research and to accompany you on doctor visits to ask questions you may not be thinking of.
-Seek out treatment guidelines from reputable organizations.
-For patients with cancer, getting your tumor tissue molecularly profiled may provide useful information.
-Be honest about your readiness for a therapy. Factor you mental, physical, and emotional limitations into your treatment decisions-especially if you intend to travel for care.
-Ensure that your advocate/coach and family are clear about your health goals and values. If appropriate, complete a health care advance directive or Physician Orders for Life-Sustaining Treatment form.
-The decision of how and when (or If) to treat is yours alone. Have a conversation about your choices with your advocate/coach, family and caregivers so they will have clarity about what’s best for you.
STEP 4-Coordination
-Coordination begins long before you go to the hospital , and it doesn’t end until after you have returned home and recovered to the point that you can manage on your own again.
-At the beginning of your hospital admission, (1) introduce yourself, your advocate/ coach, and family members to your caregivers and provide their cell phone numbers to the caregivers. Also provide to the caregivers any forms that grant your coach and family members legal rights over your care; bring medical, organizational, and personal information with you that will make you stand out as a patient and help prevent medical errors.
-Ask your advocate/coach to help you with appointments, with record distribution in advance of consults; and with note taking during meetings.
-Be mindful of the times when coordination is crucial to your safety: (1) during the course of treatment, and (2) at the “intersections” of care, including during and after a hospital stay.
-Update your Medical History and distribute it to your doctors. Communicating with your physicians about your health history, medications, and any changes will give them the opportunity to better care for you.
-If your care starts to feel conductor-less during your hospital stay, ask your advocate/coach to coordinate a family meeting with the attending physician.
-In a hospital, you are most vulnerable to harm at medical intersections, i.e., when you are being transferred from an emergency room to surgery on a different floor with a new team; during the hand-off from the night shift to the morning staff, or when you’re being sent home to recuperate. Effective communications at these junctures can help keep you safe.
–Work to proactively prevent hospital-acquired conditions and medical errors by (1) inquiring about any new drugs you are given; (2) being alert to seemingly unnecessary tests or treatments; (3) communicating any new symptoms or signs of an infection quickly to your caregivers; (4) reminding doctors and nurses to wash their hands or are wearing gloves before working with you, if you think they haven’t; (5) making sure caregivers know you health status, including allergies; and (6) checking your chart to be sure your information is accurate.
The ten things you need to ask before you leave the hospital are:
1) Has my diagnosis changed?
2) What was the ultimate treatment?
3) What should I expect during my recovery?
4) What sort of equipment will I need?
5) What activities should I avoid and what do I need to do?
6) Are there any dietary restrictions I need to follow?
7) How do I properly care for wounds and incision sites?
8) How do I reach medical personnel?
9) When’s my next appointment?
10) What’s my medication schedule?
The aforementioned compilation of “how to’s” is intended to provide a checklist of the most important steps for healthcare advocate, coach and family members to utilize in caring for patients. We have experienced our own family members going through many of the challenges outlined above prior to the publication of Michelson’s “Playbook.” In hindsight, we support the premise this book might “save your life and the lives of those you love.” We have experienced many of the challenges encountered within the medical community and see how the proper completion of the steps outlined above can prevent these challenges from occurring. In the event you think these thoughts are over-stated or hyperbole, know that one of our parents died in a hospital from complications related to hospital acquired infections.
If you are currently a healthcare advocate, coach or caregiver with responsibility for a patient undergoing care in a medical facility, this outline will get you quickly up to speed. If you have elderly parents and anticipate their future use of the healthcare system, preplanning will prove useful.
Trust us when we say dealing with healthcare providers is extremely challenging even for those of us with life-long careers working within providers. We are exceedingly empathetic for those without insider knowledge and/or connections. Hopefully, this article will help you through these challenging circumstances.
Unfortunately, we are no longer surprised by the numerous healthcare horror stories shared with us by friends, neighbors and sometimes complete strangers. Knowledge is the best way to survive these challenges.
There are some changes to the healthcare environment since Michelson’s book was published that are important to know about. These include but are not limited to the following:
1. The invention of artificial intelligence, like ChatGPT. We suggest trying it out by asking a couple of simple questions like, “How do I find the best doctor for ____________?;” or “How do I find the best hospital for __________?”
2. The development of the Medicare Compare website-Medicare.gov to find & compare different provider types.
3. Consumer oriented healthcare websites like: FAIR Health-https://www.fair healthconsumer.org; Healthgrades- https://www.healthgrades.com; Healthcare Consumer Navigator Center-https://healthcareconsumernavigatorcenter.com