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).