Changing Hospital Visiting Policies: From Families as “Visitors” to Families as Partners

Behind a Locked Door

This is our story as I remember it.

One day I came home from work, and my husband was confused. In all the years we’d been married, I’d never known him to be confused. He was sitting in the family room, and he looked frightened.

I said, “Bill, what’s going on?” He said, “Well, I was just going to get up and go look outside for Joey.” I said, “Bill, Joey’s not here.” He insisted, “Oh yes, we just came back from vacation. Joey just went outside, and I was going to check on him.”

I was alarmed and said, “Bill, I think you’re a little confused. I’m concerned because this morning you told me you had a headache. Maybe we should go to the hospital.” He resisted, but I simply told him, “Bill, if something was to happen to you, I might be held responsible because I didn’t do what was in your best interest. We can come home if everything is okay.”

And so we went to the emergency room, where we learned that my husband had a small bleed in his brain. We were told that we needed to go to another hospital that had a neurosurgeon on staff. My husband was transported by ambulance to a hospital about a mile away, and I followed him there in our car.

I want to stop here and tell you a bit about my husband and about myself. My name is Jackie Gruzenski, and I am a nurse involved in the field of psychiatric nursing. My husband’s name was Dr. William Gruzenski. He was a psychiatrist for forty years, and he was a chief medical officer for the last twelve years of his career.

Bill was a very good doctor and a very good husband. And toward the end of his life, he realized that all of his degrees, along with money and material possessions, didn’t matter. They were nothing. He just wanted to have me with him. We loved each other very deeply, and we wanted to share our last days and moments together, but I’m getting ahead of myself.

When we got to the second hospital, my husband was in the emergency room from about 7:00 p.m. until about 6:00 a.m. the next morning. At some point, he started to develop a hypertensive crisis, and the staff could not bring his blood pressure down. They started an IV medication, which required that he be monitored closely in the intensive care unit (ICU).

Of course, I went with him as he was transferred from emergency to ICU. When we got to the ICU door, I was told, “Now, just go into the waiting room. We’re going to settle your husband, and then we’ll come and get you.”

I was a nervous wreck while I waited. I knew my husband had been pretty sick while in emergency. What if he got more confused? What if he lost even this current level of functioning and wouldn’t
remember me? The longer I waited, the more my anxiety grew.

The waiting room was a small area, with chairs around the perimeter, except by the locked door. After an hour with no news, I saw a phone on the wall and called. I said to the voice on the other end, “My name is Mrs. Gruzenski. I was informed that my husband was going to be settled and that someone would come and get me.”

The next thing I knew a young, perky nurse came out, greeted me, and then directed me totally away from my husband, away from the door to the ICU, to a little room. She proceeded to give me the strict policies and procedures for the ICU, including that visitation was allowed only four times a day for thirty minutes each time.

Not believing what I was hearing, I said, “But my husband is going to be worried that I am not with him. We are the center of each other’s lives—we are only apart when we are at work!” Her response was, “Well, you can’t be with him. Those are the rules.”

I lived ten miles away. What was I supposed to do between these widely spaced thirty-minute visits? I felt I had to play by the rules. I was afraid that if I questioned too much or was abrupt with someone, they would treat my husband meanly. And because he was behind a locked door, I would never know.

I didn’t know what else to do and so, shortly before 8:00 a.m., I went home to get some rest. Ironically, just after I got home and started to settle after our long night in the ER, I got a flurry of calls from different residents who wanted information about my husband. They never said, “Come over and visit. He’s missing you.” They called because they needed the information I could give them, but they kept me locked out.

When I was able to have my first visit the next day, my husband asked where I had been. I explained that there were very limited visiting hours. This prompted my husband to speak to his nurse and say, “You know, she’s not a visitor. She’s my wife!” But he was informed that didn’t matter, that there were rules, and that I was a visitor and had to be treated as a visitor.

The rule trumped both of us and what we wanted. The rule meant he had to suffer alone. This was an accredited hospital, but in my view it was archaic. Staff hid behind the rules rather than using their heads and their hearts.

Over the next few days, I saw that my not being there with my husband was leading to more and more distress for him. As he became more ill, he would not allow the nurses to wash him, and he would not eat their food. He was doing everything he could do to get the staff’s attention to revisit the visiting restrictions. If I’d been allowed to stay, I’m sure I could have helped with feeding, with bathing, and with toileting. I’m certain I could have calmed him and helped lower his blood pressure.

I was treated as though I was an enemy, but all I wanted was to be with him, to share the last days of his life. I had always been his anchor. I was the person who navigated the everyday waters of his life. The hospital’s rules meant that he was adrift, and I was lost.

During his hospitalization, he was not afforded the respect he had given to all his patients and the nurses and doctors he had worked with each day. For example, the ICU staff never asked him how he would like to be addressed. They called him “Bill” when he should have been addressed as “Doctor Gruzenski.” He wouldn’t have thought of calling a resident by his first name, and there were only a few people in his life, his inner circle of family and friends, who called him “Bill.”

One day, I actually witnessed one doctor refer to my husband not even as “Bill” but as “Billy.”
I followed this doctor out of the ICU and challenged him saying “Would you think you were valued as a medical professional, and that your life had meant something if, in forty years’ time, someone called you ‘Billy’? ‘Billy’ is what you call some young boy you like, not someone who is sixty-eight years old and is a dignified gentleman and physician.”

My husband earned the title of “Doctor.” He attended four years of medical school, one year of internship, four years as a resident psychiatrist, and he was board certified in psychiatry. He had earned respect by exceeding all the societal standards for being addressed as “Doctor.” These achievements should not be washed away once you are hospitalized. In fact, I believe my husband might have felt a little safer if he had been addressed as “Doctor.”

My husband was in the ICU for eight of the last sixteen days of his life, and there were lots of missed opportunities for us. He wanted me there more than I was allowed. We missed time together we could have had. I feel it was a very cruel thing that was done to us.

We both knew the gravity of his condition, and my husband wanted quality of life, not quantity. I was a large part of the quality he wanted, but I was locked out for the greater part of his last days.

After my husband died, I felt I had to do something so that what happened to us wouldn’t happen to anyone else. I wrote letters to the chief executive officer of the hospital. I wrote to the chief of the medical staff. I wrote to the chief of nursing. And I wrote to the chaplain. The only person I ever heard from was the chaplain. No one apologized or said they would change the rules.

I believe more harm comes when family are not actively involved, and research is proving my belief is sound. And so I will continue to tell my story. I hope that if I tell it enough times, maybe people who write the rules in hospitals will realize that loved ones are advocates, not visitors.

I will never stop advocating for the elimination of visiting hours.

Reprinted from Crocker L, Johnson B. Privileged presence. Personal stories of connections in health care. 2nd ed. Boulder, CO: Bull Publishing; 2014.