I just spent four days with family members in a surgery waiting room and immediate post-op recovery.
They are among my nearest and dearest; they are smart, conscientious and careful people.
Their world turned on a diagnosis just a few weeks ago. They have been consumed, as anyone would, with trying to figure out how to fight the terror of Cancer.
But their questions and self-doubt extend way beyond the uncertainty inherent with the diagnosis- they are also worried about making the right decisions about their care, down to details and particulars that would have been unheard of when I was a nurse long ago.
Watching them go through researching the diagnosis, trying to understand the surgical process, feeling like the outcome of this terrible thing rested largely on their ability to make these decisions left me wondering.
Is patient-centered care, as important as it is, also a comfort?
Forgive me while I get nostalgic for “the good old days” [which weren’t], but the pressure on patients today to get their decisions right left me feeling just that.
Nostalgic.
I was a nurse a long, long time ago [1978 to 1980 at Mass General, 1980 to 1984 at Parkland Hospital]. Watching the nurses this past weekend humbled me with their bedside rounding, patient-specific interventions, and activities that required far more of my family members than the passive patient encounters I remember in my era of nursing.
Don’t get me wrong. We cared deeply for our patients back in my day. There is no difference between the attention and commitment we had 30+ years ago and the human kindness I witnessed this weekend.
But today’s hospital care is more designed to demonstrate that individual concern.
Still…
The other thing our system is designed to do now is to have people feel responsible for the quality of their own care.
I remember putting countless people on stretchers to go to the operating suite as a young nurse. I remember the fear, and hesitation; courage and resolve. But never once did I hear a patient (or loved one) ask “Did we pick the right surgeon?”
Our patients came to us confident that the system would do its best; that their surgeon was part of a team, and that if you were in the right system, you would get the right care.
Decades later we have seen pivotal reports about errors in medical care and frequent public reports about damaging, uncaring, and even criminal physicians and other health care providers. Today the public’s wariness about encounters with health care extends from the exam room to the ICU.
Mostly this is part of a seismic shift in our culture. We don’t trust our teachers, lawyers or clergy as we used to in “the good old days” either. We are wiser; we are more skeptical. We research our own diagnosis on the web and approach our “prescriber” with certainty of what medicine will best cure our ills.
This is our world now.
We also know that great physician/patient relationships exist, and shared-decision making leaves people feeling respected and included, and more likely to be compliant with their own care plan.
But still.
My heart was torn this week watching good smart people wrangle with decisions far beyond their expertise or knowledge.
Forgive me for having a twinge of regret as I watched people I love dealing not only with their fear about cancer, the uncertainty of their future together, the intrinsic dangers of major abdominal surgery but self-doubt if they were doing everything right.
- Had they googled their surgeon enough? Was he the best?
- What about the hospital system? Is their neighbor right that the competitor across town is better than the hospital they chose?
- What is the expectation during physician bedside reporting? Did they ask the right questions? Too many? Will the doctors not like them? Is there something they were supposed to remind the team about?
So yes- I did allow myself to look back at patients who followed every order given without question. Was the care better? Certainly not. But they had trust in their eyes.
Many times this weekend I wished that my own family could be as blissfully innocent as my patients of older days. Patient-Centered care can be a heavy burden.
Want To Know More?
Patient- Centered care is defined as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” IOM, Crossing the Quality Chasm
As a patient you have rights. Here is a guide from the U.S. Department of Health & Human Services (HHS)
Bedside Rounding is a relatively new process where nurses and physicians share information and discuss a patient in the room with the patient and their loved ones present, providing them an opportunity to ask questions and gain more understanding about their care.