We knew that it would be a short stay at the acute care hospital in Boston, but it still came as a shock after what we had been through in the last six weeks.
Earlier that spring, my father had suffered a traumatic brain injury and severe hemorrhagic stroke while visiting relatives in Lebanon. He would undergo a craniotomy, the use of a ventilator and treatment for multiple infections in a Beirut hospital before getting well enough to make it onto a commercial flight with a medical stretcher service back home. Arriving at the academic medical center in an ambulance straight from the airport, we had felt that my father was finally in the skilled and safe hands of the American medical system.
After only a few days in Boston, my father's medical condition was indeed far better, and yet our case manager was telling us that his time in acute care was up and the next step would be a move to a long-term acute care facility (LTAC) the following day.
"What about inpatient rehab?" I asked. We had been hoping for a transfer to inpatient rehab over the LTAC, which we had heard characterized as a place for patients with little hope of recovery.
"Unfortunately, he's not well enough for that facility. He doesn't meet the admission criteria," she said, fiddling with the gown and gloves she had to put on due to infection precaution protocols in my father's room.
"What are the criteria?"
"You would have to speak with the admitting staff there. They decide whether a patient is eligible. It's not our call."
Our concerns were relayed to the admitting director, who explained that with his brain injury and tracheostomy, my father was deemed unlikely to tolerate the minimum of three hours of therapy a day at the inpatient rehab facility. I hung up the phone disheartened.
This wouldn't be the last time we would feel blindsided and helpless in the coming months. As we passed through multiple levels of inpatient care, we worked hard to generate a dialogue with our case managers and attending clinicians. Everyone was professional and caring, but they were almost always in a rush, would drop by my father's room at odd times and would often forget to introduce themselves. My sisters, mother and I took shifts in the room, ready to buttonhole visitors for insight on what was happening and what to expect next.
We also weren't the typical patient and family. My father is a physician who until his accident had been practicing in the Boston area for over 25 years. And I had worked in operations for a leading health plan for 3 years. Drawing on advice from colleagues and friends in healthcare, we actively sought to understand how decisions about "utilization"—lengths of stay in this case—were being made and to nudge them in our favor. Like many families, we wanted our loved one home, but only after he had had enough time and treatment in inpatient facilities to be able to make that transition safely.
The healthcare club
Looking back, our planning and advocacy did appear to make a difference—we did make it to the inpatient rehab facility several weeks later, for example. But often, it felt like we were not part of a healthcare club: the circle of clinicians at the facility and insurer that interacted with each other far more than they did with any one of their patients or caregivers. The members of this club spoke a specialized language (medical necessity, utilization management), exchanged critical documents we never saw (clinical notes, authorizations) and delegated family communication to relationship managers (case managers, social workers). As much as we sought to ingratiate ourselves with the clinical gatekeepers, we knew we were fleeting guests in their world, out of their hands within weeks if not days.
These feelings of marginalization and transience, however unintended, led to a series of problematic dynamics with facility or health plan staff:
-Under-reporting of inpatient needs by caregivers: my father experienced the occasional setback in his recovery and given our regular presence in his room (my mother was there 12 hours a day), we often observed more than his doctors or nurses did. But his clinicians didn't always hear about these incidents. Because we feared any setback might suggest he was not benefiting enough from intensive therapy to remain an inpatient, we learned to filter what we would report to the facility or insurer about his progress.
-Potential conflicts of interests in admission: as we "stepped down" in levels of care from the peak of an inpatient rehab stay, our focus shifted to finding a skilled nursing facility (SNF) with a rehab unit in our area. One local facility stood out for its national reputation, but it chose not to use bed alarms with patients that were a fall risk. Since my father had needed bed alarms in every facility to that point, my mother offered to hire private aides to watch him at night as we had done in Beirut where nurse staffing was thin. When the SNF's admitting staff suggested their sister agency as a source for the aides, we felt it might be a conflict of interest but quickly agreed. We reasoned that their agency's staff might be more familiar with the unit's nurses and that the additional revenue might help us get a bed in a popular facility and stay there longer.
-Limited caregiver preparation for the transition home: after hearing clinician after clinician predict that my father's recovery would be slow and incomplete, we became fixated on buying ourselves more time for him to improve before he was discharged home. We generally avoided the topic of next steps with the clinical teams at his rehab facilities. At times, we would hope they would forget about us for a few more days if we didn't make a fuss. At others, we worried about a case manager again announcing that we were out the next day with little time to prepare for the transition home.
The price of admission and discharge
Would my father's recovery have been different had this "club" atmosphere been dispelled and the caregiver "guests" been more involved in utilization decisions? After all, it is the role of trained healthcare professionals to understand a patient's needs—with or without a family's support—and to safely and effectively coordinate their care across facilities and back home.
When I put my insurance hat on, I could also appreciate the importance of utilization controls and levels of care for making prudent use of healthcare dollars. My father could not stay in inpatient rehab forever: it cost thousands of dollars a day and we were all ultimately footing the bill in premiums and taxes.
And yet I would argue that there were adverse and costly outcomes associated with the healthcare club. After a couple of weeks of quiet nights at the SNF, my family took the advice of well-meaning nursing staff and discontinued the private aide service. A few days later, my father slipped out of bed early one Saturday morning and fell, bleeding out of a wound around his eye. Luckily, I arrived within a few minutes to alert the staff and the effects of the fall would turn out to be minor. But we immediately reinstated the aides for the duration of his stay, paying several thousand dollars out of pocket across six weeks.
Then, towards the end of his stay at the SNF, my father developed a persistent case of urinary retention, which increased his risk of infection after discharge. Once they were home, my mother obsessively checked his temperature but we quickly became overwhelmed with other aspects of the transition: chasing down medical supplies at specialized pharmacies over a holiday weekend, calling multiple agencies to schedule home aides and making a thousand little changes to make our home safe and comfortable for someone with my father's complex needs. During this hectic time, my mother's polite calls to our new home care agency about a gradual increase in temperature were overlooked, and the effects of a urinary tract infection escalated into an unnerving delirium that required hospitalization a couple of days later.
We would initially blame ourselves or even the home care agency for not reacting faster to signs of an infection. But our move home was weeks in the making, and the root causes of the readmission could as easily be traced back to the lack of open dialogue with clinical teams during his inpatient stays. To be sure, our case managers had advised preparation for the transition through house modifications such as installing bathroom grab bars. What they missed was ensuring that we were gradually putting the right care processes in place at home: building a schedule of home health aides, connecting with a local primary care practice and developing a detailed plan for when things went wrong.
In our final family meeting at the SNF, our mood was dejected and anxious in anticipation of a challenging move back home. After reviewing details about the delivery of a hospital bed, the case manager gave my mother a long and searching look and expressed the clinical team's worry about how she would cope with the transition. Taken aback by the gesture, my mother looked down and thanked her for her concern. Later that day, my family would chuckle together at the irony of the moment. On one hand, there were the genuine and compassionate individuals that had gathered in the room to serve my father, the patient. On the other, there was the broken communication process with the family that would contribute to our return to inpatient care within a few days of discharge.
The healthcare partnership
In a recent article anticipating the future of medicine, economist David Cutler characterized the patient as "the single most underused person in healthcare." This gap in coordination could be extended to include caregivers. Most families want to partner with the clinical team caring for their loved ones. When the system cannot support them as they were hoping, they also want to know why without risking those relationships.
One step towards promoting this level of collaboration with families would be shedding light on how inpatient admission and discharge works. During any inpatient stay, patients and their caregivers should be given plain-language documentation laying out the basis for major utilization decisions and transitions to the next level of care. Any concerns about the content of clinical assessments could be discussed with the inpatient facility and questions about the rationale for utilization criteria themselves could be raised with the health plan. By demystifying their decisions about admission and discharge, facilities and insurers can help build stronger partnerships with caregivers—generating clinical insight, ensuring consumer independence and driving robust planning for bringing family members home.
Izzat Jarudi is a Product Innovation Manager at athenahealth. Prior to athenahealth, Dr. Jarudi was a strategy consultant at Tufts Health Plan and the Boston Consulting Group. He has a PhD in Cognitive and Social Psychology from Yale and a BS in Brain & Cognitive Sciences from MIT.
The views, opinions and positions expressed within these guest posts are those of the author alone and do not represent those of Becker's Hospital Review/Becker's Healthcare. The accuracy, completeness and validity of any statements made within this article are not guaranteed. We accept no liability for any errors, omissions or representations. The copyright of this content belongs to the author and any liability with regards to infringement of intellectual property rights remains with them.