Lessons Learned: The Benefits of Planning Ahead

My phone rang at 5:30 am The voice on the other end was frantic and desperate. Groggily, I collected my thoughts and tried to awaken. Do I typically answer client calls at 5:30 am? No, but this client's family member was experiencing a critical part of life and death, and I knew the call was important.

I learned many lessons working with this client, and the result differed from what we wanted.

I received a call from a new client (MH) whose 27-year-old husband (LH) was in the hospital in critical care. MH reported that her whole family suffered from a viral infection, and all improved except for LH; he became short of breath and had no energy. Feeling scared and desperate, MH brought him to the nearest emergency room. He was soon admitted to the hospital intensive care unit (ICU) for pneumonia and placed on a mechanical breathing machine. MH expressed concern regarding the providers and medical staff's communication over the course of a month. She attempted to communicate with the hospital staff, including the case manager, physicians, and many more. She tried to utilize the hospital portal, but it wasn't working correctly.

Orders were written for a transfer to any available hospital. Unfortunately, no local hospitals had bed availability,

Despite several attempts to call the help desk and send emails, weeks passed; MH was not getting answers, and LH's care declined. Finally, her Bishop told her to reach out to a patient advocate. She was eager to transfer her husband to a hospital that could improve her husband's care and receive better communication. That's when she contacted me.

Soon, I discovered that LH was in a dire condition. His kidneys were failing, he was on a breathing tube with mechanical ventilation, and the hospital couldn't provide the medications and continuous renal replacement therapy (CRRT) he needed. I reached out to the case manager and discussed the case. At that time, the hospital was considering a transfer. By the day's end, the doctor's orders were written for a transfer to any available hospital to meet his care needs. Unfortunately, no local hospitals had bed availability, so the family needed to look at outside hospitals. As I diligently worked with the staff to get a transfer for him, LH was declining with each minute.

I received a call stating her husband had died. There was nothing else the staff could do to save his life.

Within the next 24 hours, LH underwent heart failure and respiratory arrest twice. He desperately needed CRRT and life-saving medications which this hospital did not offer. The following day, I received a call from MH stating her husband had died. There was nothing else the staff could do to save his life. MH expressed she felt hopeless. She thought she didn't do enough to save his life. Unfortunately, there weren't enough consoling and empathetic words to tell her then; however, I know she did her best.

This situation greatly saddened me. He was only 27 years old, married with four children, and I also repeated to myself, “if only I could have helped save his life.” I spent the next week researching and learning more about this short-lived case.

Lessons Learned:

1. Involvement was needed much earlier. LH should have been transferred sooner to a hospital that could provide the care he required. MH didn't know about independent patient advocates. She was doing the best she could at the time.

If involved earlier, the medical team may have met the sense of urgency through the collaboration of the medical team. The patient advocate can set up team meetings and be the liaison between the family and medical team to ensure questions are answered and patient needs are met. We can bridge the gap between the busy hospital staff and the worried family to make phone calls and follow up where needed.

2. I learned LH had a history of uncontrolled high blood pressure. He needed more education about high blood pressure warnings that can lead to chronic diseases such as kidney failure. Furthermore, proper education may have improved his compliance to take his blood pressure medications and make appropriate lifestyle changes.

Patient advocates can work with physicians, families, and employers to educate them about chronic disease management.

Finally, I Leave You With Some Helpful Tips:

• Set clear expectations: Family members should discuss expectations and responsibilities with the healthcare team before a hospital stay.

• Establish a primary point of contact: Designate one family member to act as the primary liaison between the family and the healthcare team.

• Keep open lines of communication: Encourage family members to ask questions and share concerns with the healthcare team.

• Use available technology: Many hospitals now have patient portals and other technology to help family members stay informed about their loved one's care.

• Practice active listening: Both family members and healthcare staff should make an effort to actively listen to one another and try to understand each other's perspectives.

• Show empathy and patience: Family members and healthcare staff should be patient and understand one another's emotions and stress during a hospital stay.

• Keep in touch after the stay: Follow up with the healthcare team and patient after the hospital stay to ensure that the issues have been resolved and that the patient is recovering well.

• You can also utilize thecarepartnerproject.org for valuable downloads.

Helpful Communication Tips:

If you feel that the hospital staff and or providers aren't giving you the information you need while your loved one is in the hospital

• Ask for clarification: If you don't understand something the healthcare team has said, don't be afraid to ask for clarification. The staff may have used medical jargon or acronyms that you're not familiar with

• Request regular updates: Ask the healthcare team to provide regular updates on your loved one's condition, treatment plan, and progress.

•Speak up if you have concerns: If you have concerns about your loved one's care, it's essential to speak up and share them with the healthcare team.

• Find out who is in charge of your loved one's care: Ask to speak with the doctor or nurse. They should be able to provide you with more detailed information about your loved one's condition and treatment plan.

•If you aren't satisfied, Get a second opinion. You may consider getting a second opinion from another doctor or healthcare facility.

• Remember that doctors and staff are busy and have limited time during their rounds. As a result, you may not get the updates as frequently as you would like. Be patient, understanding, and persistent in getting the information you need.

• ASK FOR A PATIENT ADVOCATE: Some hospitals have a patient advocate service that can help; however, they are limited with time. Hiring an independent patient advocate can help you navigate the healthcare system, answer your questions and advocate for you and your loved one.