Patient experience vs. patient care: Healthcare isn't Disney World

Early one morning I woke to another wonderfularticle shared by Doug Della Pietra on LinkedIn: 5 Ways to Measure Patient Experience and Patient Happiness.

The article by Jacqueline DiChiara was excellent in and of itself, but also highlighted a number of connections for me.

1.) Yes, it is essential to achieve optimal care to measure what can be measured. It is likewise essential to understand what cannot be measured. And thus it is also important to consciously manage each accordingly.

2.) In the article, Ried B. Blackwelder, president-elect of the American Academy of Family Physicians, shared a point that resonated greatly and that I wanted to expand upon. Dr. Blackwelder said, “Patients shouldn’t have an experience; [patients] have problems that need to be solved. This is not like Disney World. This is about safety and outcomes. The phrase is too slick and avoids what it’s all about, which is we take care of [patients] and minimize the risks.”


Yes! Healthcare is not Disney World (and for that matter healthcare services are not French fries and patients are not customers). And yes, our major focus must be on the care, the healthcare, the healthCARING.

The care can get lost when the experience becomes the lone focus. And the care must never get lost.

3.) And this last point connects with an example of an incongruence that can occur when a patient experience focus overshadows a patient care focus...

While at the amazing Patient and Family Centered Care Conference and Summit this past October, I met a brilliant speaker who cares deeply about how best to engage both patients and families in the healing (and dying) process.

It just so happened that after her presentation I saw Roberta Mori, Director at Sutter Health Sacramento, in the hallway on the way to lunch. And it was during this conversation (as we both fought hunger pains) that I first learned about “ICU delirium” as well as receiving a prompt to also research E. Wesley Ely, M.D., M.P.H. and his work at Vanderbilt University Medical Center to learn more.

And I am so glad I did.

In the piece “Undone in the ICU” by Kathy Whitney, Dr. Ely highlights a specific disconnect between patient experience and care in a very vivid and profound way.

“If a patient comes into the ICU and is dramatically sick, he is put on a ventilator. The old way of thinking was ‘You are so sick, we don’t want you to remember any of this. We are going to sedate you with drugs, tie you down, protect you from yourself; and when we think you’re better, we’ll wake you up, in six or seven days.’

In the meantime the patient has now acquired brain disease and body disease; his muscles, brain and nerves are all screwed up, and it’s not just because of the disease he came in with. We created more of a disease for him by immobilizing him with both chemical and physical restraints. We actually poured kerosene on the fire and made things worse.”
This is an example of a good intention and yet both poor execution and bad outcome:

  • The good intention is the goal of “we don’t want you to remember any of this” (patient experience).
  • The poor execution includes the lack of engaging the patient and family to ensure their preferences were made known and honored.
  • And the bad outcome is the ICU delirium experienced by the patients, the harm to families watching their family member restrained, and the damage to the muscles and nerves all due to the sedation and physical restraints.
    Improved patient experience? That was a goal. And if the patient was truly sedated and unaware perhaps even achieved ... but only in the short-term.

And yet the care was not optimal and true harm was done.
Improved patient experience must not be the end goal*
Improved health CARE (healthCARING) must be.

And to achieve that:

  • We must develop authentic relationships and trust with patients and families.
  • We must engage with them.
  • We must hear their whole stories.
  • We must understand their preferences.
  • We must develop, implement and measure the impact of evidence-based protocols (such as the delirium protocol referenced below) that serve to achieve optimal CARE outcomes.
  • And we must not lose focus on care as we seek to improve experience.

Thank you, Doug, for sharing (as always) such engaging and informative information.

Thank you, Dr. Blackwelder, for sharing such great wisdom.

Thank you, Roberta, for educating me on ICU delirium and directing me to the work of Dr. Ely.

And thank you, Dr. Ely, and your team at Vanderbilt for all your efforts to improve the care for ICU patients. There are brilliant flames within the broken healthcare system that we need to fan so that they do not go out. And this is a wonderful example.

Now let’s all set our aim on healthCARING and ensure we support one another to stay the course.
We owe it to our patients, families and communities.

[To learn more about ICU delirium and the wonderful protocol Dr. Ely is spearheading in this space please go to: Delirium Prevention and Safety: Starting with the ABCDEF’s.]

*NOTE: Measuring experience post discharge is essential to assess impact of inpatient interventions (including unintended consequences) as we seek to continuously improve care, safety and outcomes.

Thomas H. Dahlborg, M.S.M., is an industry voice for relationship-centered and compassionate care, keynote speaker, author, consultant and adviser.