The wider context of patient engagement

We don't invest as much time in understanding the broader context of the patient in front of us. The before/after factors that we don’t see. But have far reaching impact on care. 

A few days ago, I shadowed a patient through a day procedure. From the time that the nurse checked her weight to the time that she was discharged.

Let's call her Nancy. She was 82 years old and sprightly. Silvery hair curled up all over her head. She smiled easily.

After being diagnosed with lymphoma (blood cancer), her hematologist suggested that she get her gut checked when she complained of rectal discomfort.

“My grandkids once gave me a card that said “You aren’t old until you are 80!” Now that I’ve crossed that…"

She trailed off - lost in thought. In a moment she continued.

“Actually my husband is very sick. He was supposed to drive me today. But he couldn’t. That’s why my friend Betty brought me here."

The nurse responded to her thoughtfully even while busily typing away into the electronic health record.

In order to maintain quality and stay out of legal trouble, medical organizations are required to complete several checklists. Patients sign several consent forms. Some are helpful. And then there are some others.

“Sorry, I'm required to ask you this before we can go further. Are you pregnant?"

Nancy burst out laughing. “No, unless by some miracle.”

An anesthesiologist explained to her that she would be sedated.

The doctor arrived. Provided her information about the procedure and the risks involved.

She nodded while pursing her lips. Perhaps she was putting away questions that would’ve been pointless to ask.

“You can put your dentures in this box. Leave your hearing aid on. You need to be able to hear us.”

As she was wheeled away into the procedure room, she talked about her husband again.

Under sedation, she nodded and responded to questions that confirmed that she was indeed the correct patient.

In the room, Nancy lay sideways. Semi-conscious. Surrendering herself completely to other people. To take care of her. 

I observed with mixed emotions.

With scientific curiosity. The fantastical, delicate, intricate messy insides of the human body.

With guilt. I was a fly on the wall contributing nothing to Nancy. Yet, she was okay with me sticking around. “You need to learn somewhere, right?”, she had said.

Looking in my direction, the doctor joked. “We can fix you up too. I’m sure we have a spare procedure room today.”

“Are you at the cecum now?” I intercepted smilingly. Trying to sound knowledgeable about what they were dealing with.

Blood trickled gently inside of her gut. As he nipped and extracted polyps (small growths that form inside the digestive tract). Polyps can sometimes become cancerous.

Then he finished up. Turned around to the computer and completed his notes.

Nancy was wheeled out.

Her friend Betty now joined her in the recovery room. 

“I’ve been married 60 years!” First words Nancy said after her procedure.

“I hope he’s okay at home!”

The recovery nurse was chatting them up even while providing discharge instructions.

Betty reacted. “Oh, I’ve been married 52! Yesterday was our marriage anniversary. But he just slept through it. You know we came here two months ago to have his appendix removed.” 

“Do you know who did the procedure?” The recovery nurse asked.

“It was Dr. T. You know her? She’s really petite. Smart.”

“Yeah, I know her. I went to high school with her.”

Then Nancy was left to herself to dress up. 

Then I saw both of them leave past the doors. Into their world.

The next patient was already waiting. 

The wider context of patient engagement

Medical rooms across the world engage with patients in just the same way. Everyday. Hundreds of thousands of conversations. Some with empathy. Some with disdain. Some with urgency. It's a delicate and difficult balance.

Each of those conversations reveal a broader context. On what’s important to each patient as a person. What’s worrying them. We hardly ever capture them because it’s not pertinent to the clinical procedure. 

Traditional EHRs bog doctors down. Make technology a tedium to deal with. Leave alone, capture the wider context to patient care.

Nancy was clearly worried about her husband. Even more so than her condition or procedure. She had left him alone at home. Their son lived 50 miles away. Had to go to work and couldn’t be there.

Given where we are in the healthcare industry, it feels out of place to even suggest that we could do things differently by expanding the scope of our responsibility. How could we? We are already so busy.

Recently, I read somewhere about the difference between a customer and a client. 

Our relationship with a customer ends after the purchase. But a client is different. We take care of clients. Own their problems. We protect them.

Even as the industry obsesses with engaging patients like the retail industry, our thinking can evolve on how we engage. Rather than thinking of patients as customers (which is an evolving trend) - may be we can think of them as clients. Expanding the scope and duration of our responsibility. 

Protect them. By understanding the broader context.

Then…

• Health systems would worry about what happens after patients leave their door
• Hospitals would integrate palliative care (relieving pain, not fixing it) into every specialty that deals with the old or the very ill
• The legal framework would allow doctors to help patients make wiser decisions
• Financial incentives would align with the wellbeing of those the industry ultimately serves - patients
• Technology would go beyond the point of care and help clinicians understand patients better

It’s only a matter of time. Inevitable really. When we become patients ourselves. As patients, it becomes very clear what we need from the industry.

We desperately wish for the industry to understand us. What we say and what we don’t. To talk to us clearly and transparently. To provide guidance, not just information. 

To truly take care of us.