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how care goes off the rails without a health care champion

6/25/2024

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by Rose Rohloff

More than ever in today’s healthcare, it is imperative for consumers to champion care themselves or have someone act as their health care champion. People are not experts in disease management and need to know what questions to ask. Individuals will not fully process information while in a compromised emotional state (some refer to only 20% of information being heard and comprehended while under duress) – as the following story demonstrates.
A wonderful, young mother of small children contacted me and relayed her experience. She had gone into remission from a potentially life-threatening condition. After eight years of being asymptomatic while off all drugs, she began to experience the onset of new symptoms. With a recent scan performed, she went to a new doctor in her small town to get the scan results,
I refer to him as Dr. A.​
I went alone, which I know I shouldn’t have, because at the beginning I was comprehending everything, but by the end I did not retain everything he said. When Dr. A told me the condition was back, the tears started to roll down my face."
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Dr. A looked at me and asked, “Why are you crying? You knew that you have Multiple Sclerosis since you were in your 20s.”

"After his statement hit me, 
I was not retaining information as he continued to speak."
Dr. A did not consider that his patient was now a mother of small children, and her primary concern is always how to care for them - the situation was no longer about herself; she was sitting in front of him alone; and, she now lives in a small town without access to an expert in her disease management. The doctor did not recognize that his patient was thrown off balance by his comment, and she was not comprehending what was being said.
  • The doctor never looked at his patient.
  • ​He did not ask her if she would like someone to come in, record the conversation or have someone get on the phone with her.
  • The doctor did not discuss any and all alternatives for her and simply wanted to prescribe the harshest, newest drugs on the market for her - with no informed consent. 
  • The patient assumed - never assume anything, question.

A Healthcare Champion is Always Needed
Consumers Need to be Aware

Whether you, your spouse, family or a friend acts as the care champion, one is always needed. When people cannot have someone championing at their side, a phone/computer can be used to record discussions for future reference, especially in times of stress. Many people cannot retain information while trying to process emotion. Additionally, they will often not think about the questions needing to be asked because they are not medical experts. Get a champion on the phone or with a video meeting on the computer!

In the case of the young mother, I asked her how Dr. A concluded the disease returned when she had not signed a release for her previous tests to be compared to the most recent one. She stated, “I just assumed…” She was not in a state of mind to question tests done in a different state were not released, and the radiologist did not specifically write he did comparisons with previous scans - document variations by reviewing all current to past tests. After we spoke, she knew to request a copy of all tests to be copied on CDs for her to keep, and to specifically ask for a comparison report of past to present scans from the radiologist.

We also discussed the need to track all medications, tests, onset of symptoms relating or correlating to activity and environment, etc. in a journal. Once the journal was created, the question was asked, “The doctor wanted to put you on the latest medication, without you telling him you had an arrhythmia last year, when was the last time you had an EKG? And, all doctors need to be aware of this.” The doctor never did a comprehensive history and physical (H&P) to make an informed decision!

Once the initial shock started to wear off, she took time to make a list of multiple 
questions to ask after receiving resources from an advocacy group, and from experts in the field. “I don’t want to just start taking the latest and greatest drug recently on the market without knowing about the other medications, side effects, and until these other tests are first done, and he has talked with my other doctors.” This statement shows the complete lack of care coordination and planning with informed consent.

Acting as a champion for her, I reached out to specialists of 
her condition at top-rated hospitals, to ask, 1) what are the best resources for this person to use for making important decisions regarding her care, 2) what are the latest research studies she can review, and 3) why are there not publicized research regarding the specific condition she has, what contributed to her remission to assist determining possible new treatments of the condition?
Within 50 minutes of sending the email, I received a response from Dr. Calabresi. It was not the timeliness of his response I was most impressed with, it was the fact that the email began with, “I'm sorry to read about your friend’s health issue. These are all good questions … “Peter A.
Calabresi, MD, Professor of Neurology and Neuroscience at Johns Hopkins University School of
Medicine demonstrates upholding the oath all physicians should hold dear, demonstrating warmth, sympathy and keeping the patient as focus.
A leading expert in the country offered a naturopathic option, knowing the issue is often a need for high Vitamin D and/or Vitamin Bs.
The mother collected information and decided for herself, "I was in remission while I was pregnant taking prenatal vitamins. I am going to take high Vitamin D based on my research." Three years later she remains asymptomatic with no changes and states, "I have never felt better." (As she tries to keep up with her 12 year old son walking and biking.) She made the best decision for herself.
Champions are needed - especially at the onset of news, while people are wrestling with the emotions of denial/fear etc. – to assist with how to proceed through the system, to ask the right questions, to discuss the patient’s role in making decisions regarding a plan of care best for them to champion their own desired outcomes. Consumers also need to be assisted in being their own interoperability, owners of their health information for understanding associations of symptoms, meds, labs, and tests, in partnership with all the physicians.

Champion versus Advocate

I coined the term health care champion instead of advocate because advocacy has morphed to represent gaining access to doctors and payment/reimbursement. Advocacy is steering to a directory. A champion is a person or team beside you to guide, interpret, do leg work for understanding, monitor for quality, and in many cases fight for you!
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​As in the case of Dr. A in the precious story, his reaction to care was to immediately start with one of the latest drugs on the market, to be aggressive; however, he did not first consult her previous physician, a specialist, nor was he aware of the patient’s thorough history, and did not review naturopathic options. Champions of care are needed as physicians are now too often conditioned with:
  • the "shotgun" approach of running pages of tests hoping to hit something;
  • symptom = prescription, take a symptom and throw a drug at it;
  • failing to do comprehensive H&Ps, assessments, and clinical diagnosing.

A Partnership Always Needs to Exist for Quality Care ​​

In 2015, I wrote a very explicit definition for Population Health, because as the story of this young mother exemplifies, all other definitions were generic, an extension of public health, and they all lacked what is needed to achieve the health of the population - ENGAGEMENT:
Population health is an established community of people (consumers), working in partnership with health providers, advocates and educators operating holistically as a team within an integrated health maintenance continuum, to perpetually achieve and enhance quantifiably agreed-upon quality of life outcomes.
Digitalization of records and telemedicine programs have demonstrated that small rural hospitals can access the expertise of specialists in larger, urban facilities, especially if the patient was previously seen by a specialist in another state. The problem is telemedicine is misused, for (mis)diagnosing instead of care coordination, care planning and researching/educating. Reactionary diagnosis using telemedicine, such as antibiotic prescribing without culturing, is not using technology for positive outcomes. While using telemedicine for consults, researching and follow up dialogue with patients and their family/champions has shown to be very successful. Telemedicine also enables pulling in champions/family during office visits! Physicians need to embrace collaboration, remembering technology does not replace clinical intelligence; but used correctly, technology can be leveraged as wonderful tools for true care coordination. Technology tools are not solutions; tools can be used to enhance processes, or be misused to perpetuate bad practices.

A career physician told me years ago, "Being a doctor used to be a calling: Today, many physicians see it as just a job, without a desire to put in the hours and work often needed establishing a rapport with patients."​The previous story I shared, about a young mother addressing the news of the possible relapse of a disease, demonstrated the importance of having a healthcare champion.

I read the June 2017 article in BECKER’S Hospital Review, “Younger physicians may have less faith in the Hippocratic Oath, which has a patient focus, because they feel it no longer holds in today's healthcare environment in which many needs compete for their attention.”

The notion that the oath or code of ethics, being patient focused, does not hold in today’s healthcare is poignant because … “there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.”*
*The modern version of the Hippocratic Oath was written in 1964 by Louis Lasagna, Dean of the School of Medicine at Tufts University. [Similarly, the AMA Medical Code of Ethics.]

Realistically, physicians are pulled in multiple directions, and in many cases overloaded with people requesting to be seen: This does not mean that physicians should lose sight of how to respond with patients, keeping them the focus, nor should reimbursement needs and learning electronic medical records supersede the patient. It does mean with more volume demands, physicians need to rely on a team approach for providing comprehensive communication, alignment with patient’s understanding of things and their wishes, along with realizing that oaths and the code of ethics hold clinicians to a higher standard. The team approach is necessary for quality care and caring, including the person being cared for and their champions.
Further Reading:
​A new oath for ALL clinicians, the Hippocratic Oath expanded
The result from loss of the Primary Care Physician (PCP)
Push for value-based care - what is quality, what is value?
​Physicians Past and Present
Killing me softly with kindness
Patient Health and Care - there is no 'I' in healthcare
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Great healers understand we always learn more about God's great creation, being in the infancy of comprehending what He has designed. 
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