By Bill Peckham
How should healthcare providers refer to the people in their care? What does our choice of a label say about our expectations? Our doctor's expectations? If the underlying condition is chronic how should that change the language that we use?
Kevin MD has a post up trying to work through what is implied by calling his patients, customers. In Should patients be treated as customers, and if so, are they always right? he rightly points out that in medicine the patient's judgment cannot trump the doctor's judgment; calling patients customers doesn't change that reality. Dr. Kevin links to posts on the diabetes portal Diabetes Daily, by Manny Hernandez who writes Call Me Patient, Not Consumer and one on Diabetes Mine by Amy Tenderich who writes “Patients” versus “Health Care Consumers”? Both, If You Ask Me.
Amy sees herself filling different roles at different times. To the degree the term patient is a bad fit she would redefine patient to sound more like someone with a chronic disease. Manny prefers patient and hears only dollar signs when referred to by one of the Cs - client, consumer, customer. Dr. Kevin is happy enough with patient, the important thing is to be well informed throughout the journey. I wonder though if Dr. Kevin sees a category difference between an acute patient and a chronic patient? Without the acute or chronic modifier does the word patient stand up?
I was happy to see this discussion. I've written that I think language is important. The problem I see with the discussion here is that every one of these terms highlights the business transaction aspect of the relationship. The Cs: client, consumer, customer, are taken from the business world - all referring to those that will be billed. And the word patient is no better. Patient describes a business relationship too: I am only a patient when someone is getting paid. Aside from the Cs the word patient comes with too much baggage from acute medicine. Patient carries acute baggage that is inappropriate when referring to someone dealing with a chronic condition. We can do better than modeling ourselves after the players in a business transaction or the passive language of acute medicine. Living with a chronic disease takes far more effort than establishing a handful of business arrangements or just being informed of what the doctor thinks is best.
A chronic disease is a different animal. I'm not sure I really understood this until I was thrust into the role of caregiver
last August. I know kidney disease; I was completely overwhelmed trying
to get my head around the medical details of stroke and heart valves.
My Mom was definitely a patient. The doctors told us what they were
doing, what they were looking for, we were informed but ours was a
This passive nature of patients in an acute setting is why there is a sense that calling people with chronic conditions 'patients' doesn't feel quite right. Acute or chronic, we are all patients of doctors but I think doctors and healthcare providers realize that these two type of patients are very different. It comes from the nature of the conditions. As someone with a chronic disease I am responsible for my healthcare 99% of the time. An acute patient is rarely responsible for their healthcare. An acute patient has a binary choice - accept or decline treatment. Someone with a chronic disease lives on a continuum of healthcare, full of moment to moment choices - do I eat the banana or do I have some grapes? Do I dialyze for three hours, dialyze over night or not dialyze at all? I have guidelines that I have established in consultation with my healthcare team but what actually gets done is my decision and requires my action.
'Patient' doesn't work for me but we still need a word. Rather than looking to the language of the business transaction, we should look to the language of the business partnership. Rather then describing ourselves in terms of the customer we should use terms that suggests we are in business together. As someone with a chronic disease I create and maintain affiliations. I am an affiliate of the Northwest Kidney Centers. I am an affiliate of my doctor. We three entities form a partnership. We partner together to advance my well being and independence. I don't think CKD5 patient captures my reality; CKD5 affiliate comes closer.