Having a loved one in the ICU is one of the hardest things someone can experience. Timely and compassionate communication from clinicians to families is invaluable.
Connecting with Patients | December 3, 2020 | 4 min read
By Michelle Sharp, MD, MSH, Johns Hopkins Medicine
A year ago this month I was in an ICU not as a physician, but as a family member sitting at my mother in-law’s bedside anxiously awaiting the arrival of the medical team. It was 4:30 p.m. and the whole family was at the hospital waiting to see someone from the team to tell us the plan. We’d be up since 3 a.m. when my mother-in-law had an emergent procedure to support her heart. We’d made it through an ICU admission two weeks earlier after she had a heart attack. She was discharged home and walking around the ICU before she left. This felt like déjà vu of the worst kind. She had appendicitis that didn’t respond to antibiotics and her heart wasn’t working well.
As the only medical professional in the family, all questions were directed toward me. “What are the options?” “What do we do now?” “Is this the end?”
With my eyes on the sterile white floor of her ICU room, the only response I could muster was, “I don’t know.” On the inside I was screaming to the medical team, “Please come talk to us!”
The attending physician finally came talk to us at 5 p.m.. He sat with us and shared that the surgeon declined to operate and the antibiotics weren’t working. Her kidneys weren’t working and she would need dialysis. He said, “Things don’t look good.”
My heart dropped and my eyes filled with tears.
During both of her ICU stays no one asked my mother-in-law what she wanted in terms of medical interventions or what she wanted out of the remaining time she had with us. No one stopped to ask who she was outside of the medical patient in front of them. They never got to know that she was James’ Granny, Farris’ wife of 50 years, and the person we all went to in times of need or crises. We were just another family and she was just another patient.
After the doctor left, I went to her bedside and held her hand.
She looked me in the eyes and said, “I’m done. I fought as hard as I could and I’m done.”
She met with each of us and said her goodbyes and gave us our marching orders for life without her. Then she asked for the balloon pump to be removed and to be made comfortable. We called her nurse and made the requests.
At 7 p.m., right before shift change, her nurse returned to tell us that the doctors said “no” to taking the balloon pump out. Her last request of us was to make her comfortable and get the “stuff” out of her. “No” wasn’t an option. I realized at that point that no one from the medical team other than her bedside nurse knew her wishes. And it seemed no one from her team was coming to listen.
I had to become that family member who made a scene and demanded to see a doctor. I cringed on the inside knowing what the medical team was going to think of me, but knew it was the right thing to do. We needed someone to come talk to us. We needed someone to hear her. It took making a formal complaint to get the team to honor her wishes. To our surprise my mother-in-law survived the night and asked if she could go home. The palliative care team moved mountains to get her home. She passed away a couple of days later in her home surrounded by family.
I’ve transitioned back to the being on the other side of the glass in the ICU, but will never forget the lessons I learned as a family member:
1. Communicate even when you don’t have all the answers.
Don’t make people wait all day before they’re updated. Our family would have experienced much less anxiety and stress had the team talked to us sooner. The team would have also been able to make decisions more easily if my mother-in-law had been part of the decision-making and plan formation.
2. Know your patient as a person.
Remember that your patient is much more than their medical problems. Find out who they are and what’s important to them. The medical team would have been able to come up with a plan much quicker had they known my mother-in-law’s wishes. She knew what she wanted and what was important to her. She just needed someone to listen.
3. When you think a family member is being “that” person, take a step back and ask why.
I still cringe thinking about that moment. I also can think of several family members during my training who were thought of similarly. Moving forward, I’ll try to understand why. It isn’t because they want to make a scene, but because there’s a failure of communication.
4. Having a loved one in the ICU is one of the hardest things someone can experience.
I’m still recovering from the experience a year later and I’ve worked in ICUs for nine years.
I miss my mother-in-law every day. As I try to honor her memory through the lessons I learned from the other side of the glass, I hope you will too.