More than ever in today’s healthcare, it is important for consumers to champion their own care and to have an advocate, someone to help champion their care, because patients are not experts in disease management while needing to know what questions to ask, and individuals will not fully process information while in a compromised emotional state – as demonstrated in the following story.
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 results, (I shall refer to him as Dr. A). She stated,
“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. Dr. A looked at me and asked, “Why are you crying, you knew that you had the disease.” After his statement hit me, I am not sure how much I was retaining of the information.”
Dr. A did not consider that his patient was now a mother of small children, and her primary concern is 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.
A Healthcare Champion is Always Needed – Consumers Need to be Aware
Whether you, your spouse, family or a friend acts as the advocate, one is always needed. For people who 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 they need to ask, because they are not medical experts.
In the case of the young mother, I asked her how Dr. A came to the conclusion of the disease return 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 the fact that tests done in a different State were not released, and the radiologist did not specifically write about any changes from the comparison of previous scans. After we spoke, she knew to request a copy of all tests to be copied on CD 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 in relation 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.” Once the initial shock started to wear off, she took time to make a list of multiple questions to ask after receiving, from an advocacy group, resources 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.”
The term advocacy has been morphed in the industry to often mean access to care, help with payment. Patient 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, and to champion their own desired outcomes. Consumers also need to be assisted for being their own interoperability, owners of their health information for understanding associations of symptoms, meds, labs, and tests, in partnership with all the physicians.
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, or an extension of public health, and they all lacked what is needed to achieve the health of the population, specifically: Population health is an established community of people (consumers/patients), 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.