One moment you are the physician, moving calmly and confidently from case to case. The next second you are the family of a patient, feeling lost and worried. Let us never waste these precious lessons from the other side of the curtain.
You’re driving to work for the first shift in a four-day string congratulating yourself on getting a perfect emergency medicine job. You chose this job for a lot of reasons. It’s at a university teaching hospital with an EM residency. They have a mentoring program for residents and new attendings. Your partners are friends with each other, having worked here a long time but welcoming of new staff. The nurses are excellent, and schedules are reasonable—four on and three off with the ability to request certain important days off. Most of the hospital attending staff are topnotch, willing to call with feedback on your patients and don’t give you a lot of pushback when you need to admit a patient. You have a network of doctors you can trust. It’s the perfect job, and you were lucky enough to get it. You’ve been here five years, know the system, and have gotten confidence in your performance of procedures and decision making.
Best of all, you have been successful. You have made a couple of really spectacular saves, and your mentor told the department chair who congratulated you and told you how lucky the department is to have you. The residents gave you the departmental award for Best Teacher of the Year, and so many residents chose you as their advisor that the Chair made it a lottery for all advisors. Your family has settled in and is happy. Life can’t get better.
Then one day you enter the department, pick up the first patient’s chart, and your phone rings. You introduce yourself as Dr. Taylor, and within 60 seconds your life turns upside down and inside out.
The voice on the phone is crisp, professional, and distant. Dr. Harrington, working at a hospital a thousand miles away, introduces himself, and tells you he is calling because your father has had a hemorrhagic stroke, is in surgery, and is in critical condition. You hear a stat page over the phone, Dr. Harrington apologizes, saying he has to go and your mother wants to talk to you. She is in tears, barely able to speak but says she thinks your father is going to die. “Mom, I’m going to come out there to be with you. I just need to make some arrangements and get a ticket.”
“Are you sure you can?” What about your job?” “I’ll handle it,’ you reply with a confidence you don’t feel. “I‘m coming. I need to be there with you and dad.”
The next two hours are a blur of activity including a meeting with your Chair who gives you sympathy and starts arranging for coverage. You call home, and your spouse starts to pack your clothes but asks how long you’ll be gone. You don’t know, so the two of you decide on a week. The airlines have a flight that will arrive at 8 PM that night. You book it and call your mom’s cell phone. No answer. You immediately fear your father has died. You try calling again. Once again, the phone goes to voice mail. You leave a message and try to call Harrington, leaving a message but doubting you will get a return call. You are sure your father has died.
The Chair shows up in scrubs and white coat. “Get out of here. I’ll take over. I’ll handle it. You go get on that plane. Take as much time as you need. We have coverage. Call and let us know how things are when you know something.” Then he says quietly, “All of us will pray for you and your father.”
You tell him about the two patients you have seen amid all the calls. Your partner showed up early and has taken most of the load after a call from the Chair and now wishes you good luck and safe travels.
You sit in the car in the parking lot trying to prevent yourself from breaking down from the fear, uncertainty, and grief for your father and worry about your mother who has coronary artery disease with a past heart attack to prove it. You can’t remember the drive home.
The flight is a nightmare with the plane taking off two hours late, making arrival late night instead of early evening. All you can think of is your father dying before you can say goodbye and your mother having to bear this all alone. The scenario keeps replaying in your mind. You can’t concentrate on anything. Finally, exhausted, you fall asleep.
To your disgust, you are famished, not having eaten all day. Grabbing two sandwiches at the airport for you and your mother, you hurry to baggage and eat while you wait.
The hospital is locked for the night and appears deserted, so you need to go to the emergency entrance and get lost trying to find the ICU. Thirty minutes later, a lone janitor gives you directions. You find the room, and your mother rushes into your arms. “Thank God you’re here, I can’t understand anything they’re saying. “
“Let me look at Dad so I can figure some stuff out,” you respond. He is pale, and his head is swathed in bandages. There are so many IV lines you wonder how the nurses keep them straight. Machines surround him, so you can barely reach his hand to hold it, but the monitors tell a story of vital signs that appear stable. You wonder why he has hematuria. You go to the nursing desk, introduce yourself, and ask to speak to the doctor in charge. He is seeing patients, but the nurse agrees to page him and is sure he will see you as soon as possible. An hour later when you inquire, you are told he is still busy. Two hours later, a tired looking man in scrubs and white coat comes in, stating his name.
“Your father had a severe stroke and is critical. He could die if he rebleeds,” he says. He then tells you the vital signs that you already know: it is too soon to tell how well he will do. It depends on if he rebleeds, as he was on one of the new anticoagulants that can’t be reversed. You ask why he has hematuria, and the doctor seems to notice it for the first time, saying the nurses had a hard time catheterizing him. His phone rings, and he says he needs to go. Another doctor, a younger one, comes in and states she is the neurosurgeon who put in the drain. When asked, she admits she is the fellow.
“I would like my father transferred to the “University Center Hospital,” you tell her.
“He doesn’t need to be transferred. We can do everything they can do. “
“I still want him transferred,” you say keeping your voice under control.
“That isn’t necessary,” she insists.
“Are you telling me I can’t have him transferred?” you demand. “You’ll have to try and arrange that in the morning,” she says coldly and walks away.
A woman enters, introduces herself as the night neurosurgical PA, Mary Beth, and gives you a full account of your father’s condition on arrival and his treatment. She sounds knowledgeable and competent. She tells you Dr. Donaldson, the neurosurgeon, will be making rounds at 7 a.m.
Your mother falls asleep on the couch, and you sleep in the chair.
A nurse comes in every hour to check your father.
Dr. Donaldson comes in with his team, introduces himself, examines your father, and then talks to you and your mother. He appears competent, and you calm down a little.
Two ICU nurses are assigned to your father, and they never leave his side. As you watch, you realize they are some of the best nurses you have ever seen. They tell you and your mother what they are doing so your mom will feel more comfortable. They offer coffee and suggest you and your mother might want to eat while they change your father.
Later that day, an older physician, the urologist, comes to see your father. You ask why he has the hematuria, and he says there was trouble inserting the catheter so he was consulted. He tells you he used a coudae catheter and had no problem. You continue your questioning, saying you don’t understand.
He also admits the family can ask to see the medical record. As you read it, you realize the attempt at the foley was done before intubation and medication for blood pressure control and no doctor was present. You write a letter of complaint to the CEO of the hospital who later meets with you and is very pleasant. She will have the incident investigated.
Much later, you find out that your efforts resulted in a policy change to have someone from urology insert catheters in patients’ critically ill, elderly, or with a history of problems.
Over the next week the routine is the same, the two nurses always there, the intensivist making rounds with his team. When he learns you are a doctor, you are invited to join rounds on your father. Soon you are reporting your observations of your father’s condition. The big worries are possible: re-bleed, continuing leakage around the intracranial drain, and the continuing possibility of infection. You call home and ask the Chair for a leave of absence.
The drain continues to leak, and you tell Dr. Donaldson you want him to do the procedure to change the drain. He agrees and says he is calling in their neurointensive specialist, Dr. Ho to examine and consult on your father, as there is a salmonella outbreak at the university hospital, so they are afraid to transfer your father.
Dr. Ho comes very early or late after he has finished his other work at the university hospital, but he always makes sure you know in advance when he will be coming. You begin to trust the doctors and nurses and calm down a little.
Over the next month, your father stabilizes. You and your mother are asked to give permission for a tracheostomy and feeding tube. Dr. Ho explains that many patients with severe strokes have these procedures, and they are reversed when the patient improves. You realize that you are good at diagnosis and treatment of critical patients in the ED but how little you know about the continuing care given a hospitalized critically ill patient. You are forced to rely on Dr. Ho’s expertise. You find it humbling and vow to learn more.
Over the course of a month your father has two intracranial drains inserted, a Greenfield filter, a tracheostomy, and a feeding tube.
Twenty-six days after the stroke your father is transferred to a hospital that specializes in caring for stroke patients.
You fly home. On the flight you have time to reflect on how you have changed. You were a doctor and then a family member. You will never forget the upside down and inside out that can happen in an instant. You will never again be satisfied with taking care of only the patients—families need care, and having been through the nightmare of your father’s illness, you vow to help other families. You write a list of what you will do.
- Talk to the social workers and care managers at your hospital to get their perspective and learn from them.
- Periodically attend morning report of other specialties to learn about the care provided in hospitals.
- Call your mom and dad to say hello and hear how they sound.
- Make visits home to parents more often before the next upside down inside out event. It comes to each of us at some time. You want as much good time as possible with your parents and family before it hits.
You fall into a restful sleep.
Epilogue
Your father is in a series of sub-acute rehab centers, some good and some that should be closed because of poor nursing care. Four months after the stroke he comes home, able to talk, eat, and use a walker with help.
Author’s note: The events described here are real. Dr. Taylor is based on an EP whose relative suffered a severe hemorrhagic stroke. Once you have experienced being a family member, you will, hopefully, never view other family members the same.
1 Comment
Been there, identify with “Dr. Taylor”, and agree. In my case my mother was hospitalized at a hospital her own father co-founded. She was NOT treated like a VIP. Yet she received exemplary care (this was an extremely well run hospital). The outcome was not as happy, as the stroke was extensive, she did not respond to every appropriate measure that was taken and died just before being transferred to hospice. And though she was in isolation because of zoster that hit her on the same day as the stroke (actually a real risk factor), the family felt fully supported, and we were at peace with the outcome. I especially appreciated that the nurses allowed me to show and explain to family the studies that proved the outcome was inevitable; that while providing care for her they also made sure we were fed and watered; and that the hospital provided internet so we could stream classical music to her during her last days. We should all be so lucky.