By Mark Dwyer
This story hits close to home, because it involves my family members. I share it to illuminate where the call center is failing its customers. Today’s call center can offer supportive resources and referrals to patients and their caregivers and ensure that interventions are applied as needed. That is what coordinating care and managing transitions is all about. It is not necessarily about a specific disease, but it’s more about the patient’s and family’s needs.
If you ever had to move a loved one into a long-term care facility, you know how incredibly hard it can be. Especially when all your loved one really wants is to simply stay or go home. I’ve had to deal with this situation now three times in my life. First with my mom as she suffered with Lewy Body Disease, then dad with Alzheimer’s, and last week with my dear little brother as he is in the final stages of Early Onset, Frontal Lobe Dementia.
His is the cruelest of all. Not only was he afflicted with this terrible disease at such a young age, he’s now just fifty-eight years old, but it is a horrifying disease for all whose lives are touched by it. At this point, his disease causes him to rarely sit still. He paces the halls, head bent downward. His navigational skills are amazing. But what is he seeing, what is he processing? His vocalizations fluctuate between quiet utterances to loud vulgarities and heinous, hateful words spewed upon his loving wife. She does her very best to comfort him despite occasional punches, attempts to choke her, and comments more vile than one would say to their worst enemy.
What makes this even worse is that my brother was never an angry, nasty man. Quite the opposite. He was the life of the party, always the kidder, the storyteller, the embellisher. He never met someone he did not greet with a smile.
But that was then, and this is now. This past week, I saw everything from enormous amounts of love and compassion, to raw agony on the face of my sister-in-law. I saw complete confusion and despair on the face of my brother. If I had a mirror, I most certainly would have seen overwhelming sorrow on my own.
Where Was the Call Center?
I could not help but wonder as I was loading my brother into my sister-in-law’s SUV moving him from the psych ward to a supposedly “qualified” dementia nursing care facility 2.5 hours away, where was the call center?
Why had my sister-in-law never spoke with someone in the call center about how best to transfer him? How to get him into the car without a struggle or to distract him along the way? How to help him with the transition into new surroundings? Before we set off on our road trip, why hadn’t someone from the call center reached out to the new care facility and asked the hard questions to determine if they were qualified to accept and care for my brother? Why?
I have not spent over half my life in this industry to have it fail me now. Why had the hospital not taken the initiative to begin using the call center to support transitional care? Who better than skilled nurses trained to ask probative questions and educated to listen between the answers? Why hadn’t experienced call center staff been brought into the fold to offer this much needed service to the community? Surely, my sister-in-law or I would have paid for such a service. We cannot be the only ones who would.
Unfortunately, there was no call center support. My sister-in-law and I loaded my brother into the car and began our 2.5-hour transition to the dementia nursing care facility without educational or emotional support.
Fortunately, after years of caring for my brother, his wife smartly knew to bring a few items to distract him along the way. For the most part, he was content to play with a stuffed animal that reminded him of his cat. The trip progressed uneventfully.
When we arrived at the facility, there was no one to greet us. Instead, a kind young lady led us to an area where patients were eating lunch. Not the best way for my brother to start his new life. Too much confusion, too many people all looking at him. Too many strangers.
Eventually, they showed us his room. My sister-in-law had brought many of his toys, pictures, wall hangings, blankets, etc. As she made up his room, I joined my brother in his thousand-step trek around the facility. Not only does he like to walk, he likes to walk fast, a challenge for an older brother with a bad hip. We walked, and we walked, and we walked, occasionally setting off door alarms if I failed to redirect him in time. Meanwhile, my sister-in-law completed all the needed paperwork. Again, why didn’t the call center complete this prior to our arrival?
After an inordinate amount of walking, all the paperwork was completed (again paperwork that should have been coordinated and completed in advance of our arrival) and we were able to get my brother to settle down in his room.
Or so we thought.
We had been with him for most of the day, so we decided to head home before dark set in. We made one last stop at the nurses’ station to confirm they felt comfortable caring for my brother. That they felt they had adequate staff and resources to provide him with the care we expected.
Leaving Too Soon
With their assurances, we headed home. As we began our 2.5-hour return trip, my sister-in-law and I discussed how we felt my brother would do. As we began to convince ourselves that he’d be fine, the phone rang. It was the dementia care facility. We had travelled for less than thirty minutes and already the nurse was calling us to come back and get my brother. He was scared and agitated in his new surroundings, and when they tried to calm him, he swung at one of the staff. That’s all it took.
We turned around, reloaded his things, and headed back to the psych ward from whence he had come, feeling totally defeated. There had clearly been inadequate transitional care support. Not enough questions had been asked. My brother’s specific needs and issues were either not communicated or were not fully understood by the care facility agreeing to take him.
To add to our frustration, when we arrived back at the hospital, the less than friendly security guard informed us that the hospital could not, and would not, admit my brother unless he was willing to choose to admit himself. Mind you, we are talking about a man who has only fleeting moments of cognitive lucidity, and this guard wanted him to state he desired to be checked back in. Again, a perfect place for someone in the call center to have assisted in his transition back to the psych ward.
My sister-in-law lost it. She returned to the car, violently sobbing, determined to simply take her husband home and care for him herself. As she pulled away from the hospital, I reasoned with her explaining that there was no way we could take care of my brother at home by ourselves, and that with me leaving town the next day, there certainly was no way she could do it herself.
When it finally dawned on her that she had no medicines for my brother, she realized we had to return to the hospital. Fortunately, at her request, this time nurses from the psych department came down to the ED bay and facilitated getting him checked in and back to the same room he had left merely ten hours earlier.
Ten hours I will never forget.
Mark Dwyer is a thirty-three-year veteran of the healthcare call center industry. He currently serves as COO of LVM Systems.
“Transitional care is defined as a set of actions designed to ensure the coordination and continuity of health care as patients transfer between different locations or different levels of care within the same location. Representative locations include (but are not limited to) hospitals, sub-acute and post-acute nursing facilities, the patient’s home, primary and specialty care offices, and long-term care facilities” (Coleman & Boult, 2003, p. 556).
a. Transitional care is based on a comprehensive plan of care and the availability of health care practitioners who are well-trained in chronic care and have current information about the individual’s goals, preferences, and clinical status.
b. It includes logistical arrangements, education of the individual and family, and coordination among the health professionals involved in the transition.
c. Transitional care, which encompasses both the sending and the receiving aspects of the transfer, is essential for persons with complex care needs (Coleman & Boult, 2003).