(Originally published by Hospital Impact)
An incredibly special person recently came into my life. She is kind, heart-centered, smart and caring. For this blog post I will refer to her as Hope.
Over the last number of weeks, Hope and I shared a lot of time together and developed a relationship and trust. In so doing, we shared many stories.
One recent story Hope shared truly caught my attention, as it aligns so well with some of my previous Hospital Impact blog posts. Unfortunately not the recent “Kindness, humanity are best healthcare business solutions” but rather with “More firsthand symptoms of a broken healthcare system.” And yet this story from Hope can serve as a lesson for us all as we seek to truly engage and honor patients and improve the care we provide and the health of our patients, families and communities.
“I don’t remember exactly when I started feeling something was wrong. I know the symptoms [included] worsening headaches, bouts of dizziness, and tingling and numbness in my leg. Each appointment over the course of several weeks (and there were many) my doctor told me it was the flu, migraines, allergies or such. I never felt like she heard me.
I began journaling my symptoms to help process and to document. I shared them with my doctor and asked her for a referral to a neurologist and an MRI. Her response? ‘I’ll approve the MRI but if it comes back normal you need to let this go.’ It wasn’t just that she didn’t hear me. It was the tone of voice, the manner in which she dismissed me.”
Soon Hope had her MRI with the support of her mom holding her foot and providing a lifeline that to date, her caregivers and the system had not.
That evening Hope received a call from a doctor she did not know. This physician shared everything Hope could possibly want to know–if Hope was a medical student. They were cold, calculated, data and facts. Then he said: “You might have an aneurysm.”
He did not ensure Hope understood what he said, he did not empathize, he did not ask, “Are you okay? How can I best be of support to you? What do you need?”
Shortly thereafter Hope met with her neurosurgeon.
“He was world-renowned. He sat us down and explained the technical details of my aneurysm and the treatment options (brain surgery or coiling). He showed me the chance of it rupturing, and he informed me that if it did there was a 50 percent chance that it would kill me and another 50 percent chance if I were to survive that I’d live with some sort of disability.”
Yes, the facts are important and yet again a lost opportunity. Most of our patients are not medical students, nor are they machines. We are all complex, adaptive humans with physical, mental, emotional and spiritual sides. We get scared. We fall in love. We get anxious. We find peace. Data and data collection is important, but it does not replace the need for a shared human connection or compassion.
“He didn’t ask if I was scared. He didn’t ask if I was anxious or depressed about this news or the prospect of brain surgery to fix it. He gave me the facts. I would have appreciated it if he had realized that I was fragile and that I was about to break down.”
Hope had her surgery and by most standards it would be considered a success. Her inpatient post-surgical nursing care was phenomenal. Her nursing care team listened and they demonstrated that they heard. They provided the human connection and support she needed.
And yet, the system was still broken and they were not part of the discharge process.
“After five days in the hospital my wound was healing. My pain was under control. [But] my emotional state was a wreck. I got asked a few questions about anxiety but no one probed deeper. There wasn’t an option to see a therapist or social worker.”
As healthcare leaders we talk consistently about patient-centered care and patient engagement and yet we still have not created the systems to ensure throughout the continuum of care we are ensuring we are honoring our pledge.
In this instance the patient’s needs were lost.
“What I needed was someone to really sit down and ask questions and listen to the answers. I needed discharge [planning] that included mental health care. I needed someone to see that even though they fixed my head. I was very broken.”
Many of us go beyond touting the need for patient centered care. We talk of the need for compassionate care.
The Schwartz Center for Compassionate Health Care states, “When asked whether ‘good communication’ and ’emotional support’ can make a difference in whether a patient lives or dies, 81 percent of patients said: Yes. But what’s really shocking, is that 71 percent of doctors also agreed. That means that the vast majority of patients and doctors believe that compassionate care, defined as an emotionally supportive provider who actually talks and listens to his or her patients, can mean the difference between life and death.”
“It’s not brain surgery, it’s the common, compassionate sense about people and their entire person emotionally and physically. It’s about listening to family and friends and it’s about hearing, actively, what’s said.”
As healthcare leaders it is time to listen to our patients and actually hear them–to truly embrace and honor what they are telling us, and to care compassionately about them.
Today I’ll end this post with a quote from Patch Adams, a movie character played by the recently deceased Robin Williams: “I’ve given love and fun and creativity and passion and hope, and these things ease suffering.”
Let’s do the same. Every day. At every encounter.
Next: “Hope: the Sequel“