A Cautionary Tale and Call to Raise Our Voices

A CAUTIONARY TALE AND CALL TO RAISE OUR
VOICES: Denying family the right to visit sick or dying loved ones is cruel and unjust.

By Kathy M.
September 2020

Dying is a natural part of life. It is not possible to know the exact time or hour when an individual will leave this world and enter the next. For some, signs that they are approaching the “end” are more obvious than for others. Such was the case for Kathy McInnis’s husband. Diagnosed with stage 4 pancreatic cancer, Jay knew his days were numbered. Kathy understood that a person’s dignity stays intact until the very last breath. She desperately wanted to be with her husband during the final chapter of his life; however, the hospital that “cared” for Jay denied them access to each other, citing COVID 19 as the reason. The following story, told in Kathy’s own words, is a cautionary tale that illustrates how extremely important it is to use your voice to care for and protect your medically vulnerable loved ones in every precious moment of their lives.

On April 24, 2020, my husband, Jay, went to Fairview Ridges emergency room with persistent stomach pain. I was not allowed to accompany him. Six hours later, a doctor called on a speaker phone. With Jay in the room, the doctor informed me that my husband of 25 years had been diagnosed with stage 4 pancreatic cancer which had spread to his liver and nearby lymph nodes. He also had four blood clots – one in his stomach, two in his lungs, and one in his leg. He was being admitted to the hospital.

After hearing this devastating news, I begged them to let me be with him. Because of COVID, they said, “No,” even though my husband had been tested for COVID and was negative. I asked them to test me and told them I would wear all protective gear, yet they still refused. Jay was in the hospital for five days without me by his side. After he came home, we met with an oncologist who told us my husband’s condition was incurable. Nevertheless, we decided to try chemo to buy some time. Jay had a port put in on May 8th and his first chemo that day. I was not allowed to be with him for either procedure.

On Sunday, May 10th, he was walking, talking, and able to care for his personal needs but complained of a pain in his stomach. Because of the blood clots, the cancer nurse on call recommended he be readmitted to the hospital. They again tested him for COVID, and he was negative. He was in the hospital until May 15th. During that time, he was declining at a rapid pace. I begged to be with him, but they refused to allow it. They told me he had contracted sepsis. I knew he was dying. In fact, he called me two days after being readmitted, begging me to come to him because he could feel he was dying. He was very distraught. I hung up on him, called the nurses’ station on his floor, and asked them to go to him immediately. I was told that his nurse was busy and would get to him when she could!

I was extremely upset. The only way I could be with my husband was if he would agree to enter home hospice. He made that choice. I don’t think he wanted to give up, but he wanted to be with me. He was scheduled to come home May 15th. Hospice set up equipment in my home, including a walker, wheelchair, and bedside urinal. When he came home, I was shocked at his condition. Jay was nearly comatose, unable to communicate, and unable to control his bodily functions, yet they sent him home without a urinary catheter. When he wet the bed, I had to call 911 to come and assist getting him up to change him and the bedding. The paramedics asked me why they did not put in a catheter before sending him home. I had no answer. He was dirty, and I could tell that he had not been washed. His breathing was rattled. He had blood coming out of his mouth and sores in the back of his throat because he had not been properly treated for thrush.

My brothers came to assist me. They had been with Jay prior to his readmission to the hospital and were also shocked at his rapid decline. The neglect was so obvious it made me sick. The hospital staff had neglected to explain to me the dreadful state my husband was in before sending him home. He died on May 17th at 12 noon. It had been impossible to communicate with him during the day and a half he was home. A couple days after he died, I received a call from the hospital chaplain. I told him how devastated I was that I was not allowed to comfort and care for my husband while he lay dying in the hospital. According to the chaplain, if my husband had been a child and I was his parent, I would have been allowed to be with him. This made no sense to me. I had been my husband’s constant companion for 25 years. What was the difference?

After Jay died, I called the adult abuse hotline at the Minnesota Health Department and filed a formal complaint about the neglect and the hospital’s refusal to let me be by my husband’s side to comfort and advocate for him when he was desperately ill. I was told that, by law, they had to respond formally to my complaint within two weeks. They did not respond. I called a month after filing the complaint to ask about its status The Health Department eventually sent me a letter stating they would not investigate my complaint and advising me to contact patient relations at Fairview Ridges Hospital. I then contacted the hospital and stated my complaint. They told me it would be investigated. The hospital sent me a letter disputing my complaint, claiming my husband was not actively dying when he was released; that he was able to use the restroom on his own. I was stunned by the hospital’s response. My husband was totally unable to do anything when he arrived home. I had to call for assistance just to get him out of the bed.

Reading through Jay’s medical records, I found an entry by the doctor who did his exit evaluation right before he came home. The doctor stated he did not believe my husband would live more than a day or two. So, yes, he was actively dying while in the hospital. I am angry that I could not be with my husband, and I feel guilty about it, even though I was denied access to him.

By telling what happened to my husband and me, I hope to help prevent this happening to others. There must be allowances for family members to be with their vulnerable loved ones in healthcare facilities, even during a pandemic. I hope others who have experienced this same scenario will step forward and join me in declaring, “Enough is enough!” No one should have the authority to take away anyone’s right to be with their loved one when they are dying!