Over the past few weeks, I have been working with a patient who has been in the ICU on a ventilator due to respiratory failure for over 30 days. I was asked to get involved as the family was getting frustrated as they did not know what was happening despite the mother practically living in the hospital. She told me when I met her, I felt like they didn’t see us anymore.
The daughter, who was charged with posting updates to family members and friends, was going to be at the hospital the next day. I told her I would come to the hospital to meet her, the patient, and the mother and talk to the case manager and Intensivist to help them understand what was happening. She said she would speak to the case manager and the doctor to see if they were open to meeting me. The daughter called me back and gave me a time that the doctor and case manager were available (keep in mind this was a Saturday). I said I would be there at the appointed time. I encouraged them to write down questions they had for the team so that they would be organized.
When I got there, the sister met me in the lobby, and we talked as we walked to the ICU. She gave me some insights into her sister and how she was doing. When we got to the ICU, I met her mother and the patient, who was awake but could not speak as she was on the ventilator. I told her who I was and that I was there to help her, her mother, and her sister to understand what was happening. She shook her head in agreement.
I went to find the case manager and the Intensivist but was told by the nurse who cared for the patient that both were at meetings and did not know when they would return. She said she was asked to give me the medical update, and if I had any other questions, we could talk later. I was disappointed as I specifically wanted a family conference to address the families’ concerns. I went ahead and asked the mother to sign my consent form and asked the nurse to put it in the chart so I could get updates as the patient progressed. We reviewed the questions with the nurse, but as she was on day one of her three days, she did not know much about the patient. She said she would pass the questions on to the case manager and the doctor when they returned.
I learned from the nurse that the goal was to wean the patient off the ventilator. She was making progress, but it was slow. The plan after that was not clear as she would still have significant issues and would need a high level of care.
In talking to the mother and sister, I learned they wanted to take the patient back to Orlando, where the family lived. We talked about possible scenarios, and I said I would contact the case manager about the transition of care and ask them to try to be patient. They said they are trying to be patient, but it is hard as they feel no one talks to them. I told them they could call me anytime they had questions, and I would try to get them answers.
On Monday, I contacted the case manager and asked how things were going and what the plan was. He told me he was working with a Long-Term Acute Care Program (LTACH) in Orlando, and he was waiting to see how she did and would keep me posted. I asked him to let the family know so they could see some hope. He said he would.
As we talked, I tried to gently tell the case manager that the family felt they were not being included and to keep them up to date. I know this is a tough case, but it is essential to talk to them between rounds and see how they are doing. He got a little defensive, and I asked him to see their side of the situation….they are lay people and don’t understand the complexities of what was happening. He calmed down and said he would try to include them more so they felt like they were part of the team.
Over the new week, the patient progressed and could come off the vent. Little things kept popping up that pushed back the discharge date. I kept communication open with the family and the case manager and gave them tips on questions to ask. I told them not to feel intimidated but to ask questions as they were advocating for their loved one as she could not talk. Finally, after 45 days, the patient could be discharged to the LTACH in Orlando!
Setting realistic expectations, showing empathy, and keeping all lines of communication open are critical to the care of the patient and the family. The nurse case manager can remind the treatment team of this.
I hope this post helps patients, their families, and the healthcare team better understand that the family is an important part of the healthcare team and needs to be included throughout the process of caring for the patient.
Thanks for reading this post. If you have had an experience like this, let me know how you handled it.
Have a good week.
