It’s Case Management Week, and I want to share a story about my first encounter with a patient, which led me to a career in case management.

I first learned about case management in 1984 when I worked in Philadelphia in the Respiratory ICU. I was caring for a young woman who was diagnosed with advanced ALS. She was sent to the Respiratory ICU to have a planned tracheostomy so she could be put on a vent because her lungs were failing her. The night before she went to the OR for surgery, he husband brought her two sons in to talk to their mother for the last time, as once the trach was placed and she was put on the vent, she would not be able to speak to them in a meaningful way again.It was a tough night for the patient, her husband, and the staff.

After the trach was placed, discharge planning started, as there was nothing more the hospital team could do for her. Initially, she was supposed to go to a rehab program, but Kathy wanted to go home and be with her family. She would be going home on a ventilator, tube feeding, and many medications. Her husband was anxious to get her home as he had to drive 2 hours to get to the hospital from their home in New Jersey. Their two little boys wanted their mom home.

Kathy was scared. She was so used to being in the hospital, and if her vent tubing came undone, someone was right there to reconnect her to the ven. She was worried about how she would do at home and how her declining condition was going to impact her husband and their two young children.

She would have 24-hour home care with Registered Nurses (yes, this was a LONG TIME AGO). Respiratory therapy would come into the home daily, and she would have PT/OT to exercise three times a week. A hospital bed, suction machine, and other needed supplies were ordered and ready for when she arrived home.

I remember talking to the Social Worker and asking her who would pay for all of this care. The Social Worker explained that she and her husband had very good insurance policies with a million-dollar limit each, and the two companies were working together to coordinate benefits (I told you this was a long time ago).

The Social Worker said the policies should carry her for several months, and she was unlikely to outlive them. She might need to go into a nursing home if she did not do well at home or outlived both policies. She said we would have to wait and see. In the background, the hospital staff did not think she would live long.. She would probably get an infection and end up coming back to the hospital, but that never happened. She had a good home care team that cared for her, led by her primary care physician, nurses, therapist and a strong family support team that cared for her and gave her and the family the strength to carry on.

She went home with tears from the staff as we all got to know and love Kath, her husband Franny, and their two little boys. I was worried about how she was going to do without the safety of the hospital, but I knew this was what she wanted. The home care company ensured the home was safe and ready for her. All the equipment was ordered, the electrical system had to be upgraded, and a generator had to be installed in case the electricity went out.

Many of us visited her over the months she was at home. She did remarkably well, but the situation took its toll on the family.

At one point, she decided she did not want to live any longer on the vent as she saw her family was starting to be impacted. Her kids were not doing well in school, her husband was struggling, and they were all tired of having a hospital in their home.

The primary care doctor, who was part of the team, investigated how she could come off the vent. She and her husband were aware of the repercussions of taking her off and were prepared. The case went to court with attorneys to represent the child, Kathy, and her husband because each had a separate role to be protected. There was no history for this case. Kathy was awake and alert. She was competent and knew what she wanted and the ethical issues of her decision. The case went to the State Court in New Jersey.

Kathy died before the decision was made, but a decision was granted to allow a woman who was of sound mind to come off the ventilator voluntarily. She was fully aware that death would follow. This landmark case in New Jersey set the president for future instances of people with progressive conditions that impacted their quality of life choosing to stop treatment on their terms. Here is a link to the case. It is interesting to read the process the patient/family underwent: https://law.justia.com/cases/new-jersey/supreme-court/1987/108-n-j-335-0.html.

The experience showed me how complex a patient like this was cared for and how many decisions she, her husband, and the medical team had to make as her condition progressed. I realized we were all advocating for Kathy and helping her to meet her and her husband’s wishes despite the progression of the debilitating condition. This was the first time I realized what it was to advocate for someone.

Today, looking back on this case, I realize it was my first experience in the world of case management. Although I did not enter the field for a few more years, the journey opened the door to the practice I knew I wanted to do.

To me, case management closed the circle of nursing. It helped me see what happens outside of the hospital setting when people with complex conditions leave the hospital setting and have to live with multiple issues and make decisions that change their lives.

Kathy beat the odds and outlived her insurance policies. I don’t remember the circumstances, but looking back, I think she and her husband’s employers worked together to coordinate the benefits of both policies instead of staying in the hospital. It is not something that would happen today.

Kathy passed away at home, as were her final wishes.

Thank you for reading this story. What was your first experience with case management? If you are so inclined, please put a note in the chat box so we can all share our experiences.

Happy Case Management Week! Thank you to my family, friends, and colleagues who have supported me throughout my career. It has been an incredible journey, and I am grateful for it.

Have a good week

 

 

 

 

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