My Brother’s Keeper – the Beginning of the End

(The author is a member of FEN and an ordained minister who was a hospital and hospice chaplain specializing in mental health and post-traumatic stress disorder. This is the first of a two-part personal account that vividly demonstrates the need for end-of-life planning and advance directives. – Jay Niver, editor)

As a FEN speaker, and before that as a hospital and hospice chaplain, I have repeatedly stressed the importance of having an advance healthcare directive and medical power of attorney (POA). I didn’t realize my brother didn’t have either of those documents until it was too late.

Wayne and I got COVID around the same time. He was 10 years older and had multiple underlying health issues, so it wasn’t a surprise that he was affected much more than I. The coroner’s certificate says the primary cause of death was pneumonia due to COVID, but it also lists coronary artery disease, hypertension (high blood pressure), hyperlipidemia (high cholesterol), and gout.

The biggest surprise was that his claustrophobia, which I was not aware of, ended up being more significant than I could have imagined.

Wayne’s first symptoms appeared Tuesday, Nov. 30. He initially thought he had a sinus infection. The next day, he was coughing and thought he might have bronchitis. A week later, he was admitted to the hospital with COVID pneumonia. He transferred to the ICU two days later, reportedly just to “keep a closer watch” on his blood oxygen level.

That’s when I learned that he did not have a healthcare directive or medical POA. The fact that he was in the ICU was an indication to me that his condition might be worse than he was admitting (or maybe than the hospital staff were telling him).

I offered to create a POA for his fiancé (Jean) to take to the hospital for Wayne to sign. Without it, she wouldn’t have any legal say in his treatment, and I knew Wayne didn’t want that. I created the medical POA over the weekend and emailed it to Jean Monday afternoon for her to review. We were still expecting Wayne to be sent home with arrangements to have oxygen there. The POA was “just in case.”

On Monday night, because Wayne didn’t seem to know much about his diagnosis or treatment plan, I filled out a request form to get access to his “medical portal” to see his medical charts and clinical notes. I planned to bring the form to Wayne the next day to get his signature on both documents.

On Tuesday morning, Jean spoke with Wayne on the phone. He thought he was in a grocery store. The nurse called it “COVID delirium” and we assumed it was temporary. My wife (Melanie) and I drove to the hospital to meet up with Jean. The hospital is an hour’s drive from our home.

Since we thought it would be just a brief visit, Melanie waited in the car while Jean and I went to get his signature on each form, only to learn that he had been fully sedated. The delirium had apparently gotten worse and amplified his claustrophobia, resulting in a belligerent refusal to wear the CPAP (continuous positive air pressure) mask necessary to keep him alive. In his delirium, Wayne didn’t understand the importance of it. He just knew he wanted it off. The only way to keep it on him was to render him unconscious.

We were too late to get his signature.

Jean and I were allowed to see Wayne from the other side of a glass door. He made no indication that he knew we were there. We were informed that a new, mechanized CPAP had been set to full flow, but his blood oxygen level was still dropping. The attending physician wanted to intubate Wayne and transfer him to a larger hospital with more on-site specialists, but no ICU beds were available in any other hospital in the state, so Wayne was first on the waiting list.

I knew that many intubated COVID patients did not survive, but I was unable to think clearly enough to argue with any conviction. We were sent home to wait for a call to notify us which hospital he would be going to.

The next morning, an intensivist (specialist in intensive care) from one of those larger hospitals called to say he had seen Wayne’s medical chart and disagreed with the intubation and transfer plan. According to the intensivist, even if Wayne recovered from both COVID and intubation (a 10 percent chance at best), he would need a permanent tracheotomy due to the irreparable damage already done.

Blood tests indicated he had also suffered an acute kidney injury, so there was a good chance he would soon be on dialysis. The delirium-fueled belligerence indicated some cognitive decline, which had most likely continued since his blood oxygen levels were still dropping. He most likely would need continual nursing care.

We were shocked by this news and how fast Wayne’s health had gone downhill.

The intensivist advised going back to the hospital to say our final goodbyes and offered to arrange for a “compassionate visit.” When we arrived at the hospital, however, the receptionist and nursing staff knew nothing about the compassionate visit. After telling the receptionist about our conversation with the intensivist, we were allowed to meet with the attending physician in an ICU waiting area. We were not yet allowed to be with Wayne. We were kept waiting for about an hour before the physician came to speak with us.

Jean and I had agreed that Wayne would not want to be kept alive with machines. She specifically recalled a recent conversation with him about possible nursing care in the years ahead, and he said, “I don’t want to watch the world pass me by.”

The attending physician arrived and insisted that Wayne had told him to do “everything possible,” which to the physician meant intubate. I was stunned.

After several minutes of heated discussion, the physician informed us that he had already contacted the hospital’s legal department, which arranged for the ethics committee to meet, although no one could tell us when that would be. Wayne’s care had been completely removed from our hands. We felt powerless. By then, it was late afternoon, so the three of us briefly saw Wayne again from the other side of the glass door and went to Jean’s house to wait.

After another two hours of waiting and hearing nothing, we learned that a weather advisory with possible tornado activity had been issued. Since we didn’t know when we would hear back from the ethics committee, Melanie and I decided to go home before the storm hit. We arrived just as the wind suddenly grew stronger and torrential rainfall began.

The garage door was still opening when the attending physician called to say the ethics committee had agreed to defer to the family. He also said that Wayne’s blood oxygen level and blood pressure were suddenly dropping, so we should get there as soon as possible.

I called Jean to share what I had just learned, and she immediately went back to the hospital. Melanie and I were forced to wait about 45 minutes for the worst of the storm to pass, then we drove the hour back to the hospital for the third time in two days. It was well into the evening when Melanie and I arrived, so a different receptionist was on duty than either of our earlier visits. She said hospital policy allowed only two visitors in the building, and since Jean was already there, only one of us would be allowed in and the other had to wait in the car.

This was the first we’d heard of that policy, and we were surprised since all three of us were allowed to “visit” Wayne earlier that day. I was not about to leave Melanie sitting alone in the car for who knew how long during a severe storm, and yet I had to get to Wayne. In my urgency, I ignored the receptionist and went upstairs to the ICU, taking Melanie with me.

The receptionist called a nurse supervisor, who arrived at the ICU prepared to have security escort us off the premises. As I forged ahead to get to Wayne, Melanie told the nurse supervisor that all three of us had been in the ICU just a few hours earlier after being promised a compassionate visit that didn’t happen, and that the ethics committee overruled the attending physician, who then urged us to come back to the hospital right away. The nurse supervisor eventually agreed to let Melanie stay in the ICU waiting room while Jean and I were at Wayne’s bedside.

We had only been in Wayne’s room a short time when yet another physician arrived and wanted to speak with us in the ICU waiting room (there had been a shift change for the doctors as well). This was our third physician of the day.

Bracing myself for yet another confrontational discussion, I was greatly relieved when he said he agreed with the intensivist. His reassurance that we were making the right decisions for Wayne gave us tremendous peace of mind.

Jean and I went to be with Wayne for the last time. After two wildly stressful days, we were thankful he didn’t have to die alone, and we were able to tell him we loved him and that it was okay to go.

At 10:56 PM, the CPAP mask was removed and all medications discontinued except for pain. Wayne’s face immediately relaxed and he moved his jaw around in grateful relief. His hands lightly squeezed ours, with Jean holding his right hand and me holding his left. He was no longer receiving any sedatives, so whether any of those movements were conscious remains a mystery, but we both felt he was saying goodbye.

A tear formed in the outside corner of each eye, but his eyes did not open. His heart stopped at 11:35, Dec. 15.

What I’ve written above only scratches the surface. With a few notable exceptions, dealing with the hospital staff during Wayne’s last days was a nightmare, even for me as an experienced hospital and hospice chaplain. Much of the drama could have been avoided if Wayne had an advance healthcare directive and medical POA. I’m not sure the end result would have been different, but I believe those documents would have made the entire experience much less stressful for all of us, including Wayne, as I would have been able to help him understand what was happening.

If you want to minimize the emotional stress for your family, make sure you have a current advance healthcare directive and medical POA. The sooner you do it, the better, preferably when you’re relatively healthy and can think clearly. You may change your mind about certain details when faced with a life-threatening illness or injury, but having already had the necessary conversations with family members will make things go much smoother.