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During the recent NEHI 2013 Innovation Conference: Patient Engagement 360, two questions kept coming to mind:
How can the healthcare system be patient-centered and engage patients without truly knowing the patient? How can we provide the care the patient desires without understanding who they are, how they live, their culture, fears, hopes, goals, and so much more?
My friend's 87-year-old mother was recently diagnosed with dementia. After much prayer and reflection, she met with her children to finalize her funeral arrangements and confirm her DNR ("do not resuscitate") code.
Soon thereafter she ended up in the local emergency room where she was diagnosed with heart failure. The doctor remained detached and spoke clinically to this scared elderly woman, never once providing comfort or even touching the patient.
"It's heart failure. We can't address it here. Would you like an intervention?"
"Intervention?" she asked in her confusion.
"Yes. We can transport you immediately to another hospital for surgery. It's a critical situation."
"Intervention?" It wasn't a word she knew. DNR she knew. This physician did not take the time to connect with this patient, to touch this patient, to hear her story--to truly understand her wishes, to discuss her DNR, to talk to her daughter, to empathize and to show compassion.
He could have said, "Without a medical intervention your heart will slowly stop beating and you will die. It will be peaceful. There is time to call your children. There shouldn't be any pain but we can give you medication if there is. You have a DNR. You have some time to think about this decision, consult with your daughter and your family, and let us know how you'd like to proceed."
This scared, frail, elderly patient made the trip to the second hospital. She was told a Catholic priest would be there to provide last rites and a surgeon was waiting and would do the procedure immediately. Neither was there for her. Another lost opportunity to connect, to honor a commitment, to develop trust, to care--which caused both mother and daughter much anxiety, confusion and fear.
Exactly the opposite of patient-centered care.
She was admitted, and a long night passed without explanation as to what was happening. On the second day a doctor did arrive in her room and explained the technical procedure with no empathy, no connection, no caring (in the words of the family), and not once asked the patient a question. Shortly thereafter the surgery took place.
Post-surgery the nurses provided comfort and the patient's children rotated visits to keep her safe and loved.
"They did an intervention," this woman told her children, her anxiety increasing daily.
On the fourth day, the hospital discharged the woman. "Do I have heart disease now? What does this mean?" she asked during the discharge process. "No," was the short answer. "The doctors will explain it all to you in six weeks when you come back for your check up."
Her children ached with frustration for their 87-year-old, confused, weary mother. Six weeks before an answer?
Did the nurse and physician know this woman lost both her husband and brothers to heart disease? Did they take the time to find out? Do they understand how anxious, confused and scared she is and how what she is enduring is 180 degrees from what she wanted? Do they know the impact to the patient's family? Do they care?
Rather than a peaceful passing with her family by her side (as she desired) this elderly woman had a medical intervention and experienced the lack of relationship, empathy and compassion within our broken healthcare system. She has experienced the polar opposite of patient-centered care. The system has made money, the surgery was a success, and the system failed.
It is time to stop just saying the words "patient-centered care" and start implementing models which actually allow for it. Until then we will continue harm to our patients and communities while increasing the cost of care. The triple aim? No ... the triple fail.
Thomas H. Dahlborg, M.S.M., is chief financial officer and vice president of strategy for the National Initiative for Children's Healthcare Quality (NICHQ), where he focuses on improving child health and well-being.
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