Navigating the Medical Maze or “ A Week in the Life of a Care Manager”
The other day I received an urgent call from a woman whose husband had just been discharged from a local hospital to a nearby nursing home. She was confronted with a painful dilemma—she needed to go out of town the next day to attend a memorial service for her mother but, she also needed to care for her husband who was in the hospital for severe back pain. I met Ann and Tom several months before to discuss alternative care options for Ann’s mother who lived in New York at the time. But on this day, Ann was reaching out for guidance for herself and her husband.
This call for help is typical of the many calls that geriatric care managers, like me, get every day. Each family, or individual, has their own story, many heart-breaking, but their situations usually have two things in common—each involves intersecting with the medical community and the path to navigate the medical system is always winding and frustrating. Care managers work in the world of hospitals, rehabilitation centers, assisted living communities, nursing homes and work with doctors, nurses and discharge planners. They learn how to navigate the medical system–its rules and regulations and communication channels. Families need care managers because the medical system is a maze. It requires the tools of navigation– knowledge of communication pathways that link doctors, discharge planners, insurers and community resources. The players, or health care providers, operate in their own silos. The medical system pretends to be patient-centered but that is an illusion. The care managers job is to be the chief navigator—bridging the gap between each of the players in the health care system.
To get a better picture of the “medical maze”, let’s continue with the story of Tom and his wife Ann and their care manager. Ann contacted me for help because her husband, Tom, had been in the hospital briefly for severe, shooting pain in his leg and was being released that day to a local nursing home. Tom’s stay in the hospital was short. He was held overnight on what is termed “observation status,” which is different from “admission status.” To evaluate the nature of the pain, an MRI was ordered and it revealed the source of the pain. Tom was given an injection in the suspected area, hoping it would bring relief. It brought some relief—Tom was able to stand the next morning, so, without further evaluation, he was discharged. But, the pain relief was short lived. Further evaluation to determine the cause of the pain and a more intense plan of action was needed immediately because his wife, Ann needed to attend her mother’s memorial service out of town the next day. At this point, Tom was unable to walk or care for himself and admission to a nursing home for care was the only immediate solution. The family was responsible for the financial cost of nursing home care because he did not have a 3-day hospital “admission” stay. which Medicare requires to pay for skilled rehabilitation in a nursing facility.
I agreed to meet with them at the nursing home the next day to outline a plan to get Tom the necessary follow-up with his specialists at the nearby teaching hospital.
The following is an account of actions taken to navigate the system on behalf of one individual over the course of one week:
- Telephone call to the Medical Director of the nursing home to request a doctor-to-doctor call with Tom’s neurologist to give an update on his patient. He objected.
- Telephone call to the Director of Nursing to help coordinate plans for client to be seen by a specialist familiar with his medical history at the local teaching hospital. Appointment was scheduled for the following week, ambulance transport to the hospital arranged.
- Reviewed client’s chart for pain medication orders. Noted that orders were confusing and inaccurate.
- Contacted Director of Nursing to request rewrite of pain med orders.
- Second meeting with client to assess his level of pain, overall medical care, concerns, fears and goals.
- Third meeting with Tom to observe therapy session for progress.
- Call to hospital neurology department to coordinate two appointments for the same day to prevent travel by ambulance twice. This would have been costly to my client (non-emergency ambulance is not covered by insurance) and severe pain prevented traveling sitting up.
- Medical assistant guaranteed an appointment with the physiatrist with only one hour wait between appointments.
- Called ambulance company to request change in plans, coordinate round-trip transfer from nursing home to hospital outpatient department.
- Telephone call from Ann after the first appointment to state that the second consultation cancelled. They would have to wait 3 hours for the next opening. Ambulance could not wait.
- Medical privacy rules prevented me from obtaining the doctor’s evaluation and recommendations. Able to obtain through Director of Nursing who had a release of information on file.
- Reviewed the consult which called for Tom being admitted to the hospital’s acute rehab unit for pain treatment and intense physical and occupation therapy.
- Telephone call to the medical assistant in neurology department to learn the admission process. Informed that the decision process would take time—perhaps a week.
- 4 phone calls one week later to request admission decision–informed that the doctor was too busy, in clinic all day.
- Finally, call from Director of rehab unit to inform me that client did not meet the criteria for admission.
- Argued on behalf of my client to be admitted without success.
- Scheduled meeting with my clients to discuss the decision and establish a new plan of care based on client goals and family needs.
During this week, I made twelve phone calls to either schedule or coordinate appointments, communicated with nursing and therapists on the clients’ behalf, met with Tom and Ann together and separately to understand their needs and goals, and made referrals for needed resources. During that time, Ann also made calls to the doctor’s involved in her husband’s care—but no one returned her calls. There were no doctor-to-doctor conversations to coordinate care for their shared patient.
This is not patient-centered care! The number of people involved in one decision that held hopes for my client plus the amount of time to learn the right communication channel can be likened to working your way through a maze. Not everyone has the time, knowledge or patience to try and figure out the right path; nor do most families have the money to hire a care manager to help them navigate the medical maze for families like Tom and Ann. The solution is easy–put the patient back into “patient-centered care. Better communication is the only answer.!