A Home for Toby
by Marylou Cunningham

Toby is a 47-year-old male, paraplegic at T-4 level due to an embolization and infarct during a cardiac catheterization at a tertiary hospital. His long history of chronic illness includes low back pain, which qualified him for SSDI. He lived in a non-insulated, three-room cabin that was not handicap accessible. Underlying psychiatric illnesses of depression and character disorder added to the complexity of the case.

Toby was one of seven children and only had one sister in the area that continued to maintain a relationship with him. He received health insurance through Medicare and Medicaid.

Earlier in his adult life, he worked in computer hardware. He is very intelligent and independent minded.

History

After the initial event causing his paraplegia, he spent several months at acute rehab level. He remained wheel-chair bound; continued to have pain control issues requiring heavy doses of narcotics and expressed his anger in very anti-social behaviors that alienated staff, prohibiting him from continuing to progress in important matters such as bowel and urine elimination training.

He was transferred from the acute rehab to a skilled nursing facility close by our 200-bed community hospital for long term care. When he signed out of AMA within 24 hours, he was brought by his sister to our Emergency Department. For the next two years, he had multiple medical admissions for ischeal decubiti, pulmonary emboli and frequent urinary tract infections.

He returned home for two short stays with VNA services until finally his home was condemned by the board of health and a one month stay at a skilled nursing facility, which resulted in an illegal discharge back to our hospital.

On-going and frequent contact with housing authorities and the state Medicaid “special populations” office were sympathetic, however, basically non-productive. In an urban setting, the hospital would have had more resources, such as specialized acute rehabilitation facilities and medical shelters for the homeless. But a client safe in a suburban setting was not a priority for agencies clearly overwhelmed by more serious at risk cases.

He had applied for and received twenty-eight hours a week of Personal Care Attendants from Medicaid. He was given resources on how to hire and manage a staff of PCAs.

The goal

The goal was to provide Toby with the necessary medical and recuperative care as well as a safe discharge plan. There was also the on-going need to support staff who were providing the care and dealing with the patient’s challenging behaviors.

The plan

There were regularly scheduled team meetings to include the patient and all staff involved in Toby’s care. This included nursing, care coordination, social work, physical therapy, dietary, the hospitalist service and hospital administration. The meetings included assessment of the patient’s current condition and strategies to support and empower the patient and staff to continue to move forward toward achieving the goal.

Through networking opportunities that the social worker developed, Toby was put in touch with county legal services and a lawyer who specializes in assisting the homeless population in navigating through the process of applying for handicapped accessible, subsidized housing.

A suitable apartment in a Boston neighborhood became available. The hospitalist found new primary care physicians willing to accept Toby, who was then able to choose a new doctor and make a follow-up appointment. There was going to be a transition period before Andy would be able to research and hire his PCAs, so the hospital paid for two weeks of private help. A referral was made to a local VNA to provide on-going skilled services and a hospital bed with special mattress was ordered for his new apartment.

The hospital also purchased two weeks of medication for Toby until he could establish his relationship with his new primary care doctor.

Lessons learned

Complex and challenging cases like this require the expertise of all disciplines. Senior administration support during this long and frustrating process was also extremely important and the willingness to spend resources to make the final plan successful was a key component.

The satisfaction in achieving a successful plan may require several trial and errors. Keeping the central focus of the patient’s needs and providing safe discharge utilizing the coordination of effort is essential not only to achieve ultimate goals, but for the support to staff so that no one individual becomes overwhelmed.