One month ago, Thursday, December 31, which is usually during non-pandemic times a festive party time, instead, I arrived at the hospital at 7am to be with my husband. He had been hospitalized since the Sunday before with a nasty internal bacterial infection. I finally broke through the “Covid no visitor” policy since my husband was close to death.
I found him in really bad shape, even worse than when I left him the night before. He was having a lot of trouble breathing and he had a nasogastric (NG) tube in his nose, down his throat.
Where did that come from? Why was that there? Thus began a terribly difficult and fateful day of decision-making.
When I determined that my husband needed some assistance from a nurse, to relieve the troubled breathing / gasping / pain and discomfort, I pressed the call button at his bed.
I pressed it twice. Eventually someone said, “what do you need?” with an exasperated tone. I politely requested, “will you ask a nurse to come to room xxx? My husband is in distress.”
That request fell on deaf ears. 90 minutes later, a nurse came in.
I got my husband treated with some drugs that cleared the congestion and seemed to alleviate his suffering for the moment.
My husband kept reaching for the NG tube. It must have been irritating him a lot. I asked the nurse why it was there, and she said, “you have to talk to the doctor about that.”
The nurse suggested perhaps restraining his arms to prevent him from pulling out the NG tube, to which I replied, “absolutely not! You will NOT restrain him!” And that was that!
I asked the nurse if she had read his Advanced Directive that specifically said, “no NG tube.” The nurse scoffed and said, “we don’t have time to read those things.” Man, did I get hot.
I asked the nurse to find out when the Hospitalist (in-house doctor) will be coming. Again, she didn’t know. “On rounds now, I assume.” Then she stripped off her PPE, dropped it in a trash can by the door, and left.
By the time the nurse left, it was 9:30am. I held my husband’s hand and continued to speak to him, hoping what I say will register. I kept saying, “I’m going to get you out of here,” to which he slightly responded with a few vocalizations that sounded like a cry, “home.” It was so pitiful. I cried so hard.
When the Hospitalist showed up at 10:30am, I listened to her medical opinion about my husband’s condition. It was very complicated.
She explained that the NG tube was required to give him antibiotics that could only be administered orally. Since he had been declared “NPO” (“nil per os” or “nothing by mouth”) because he was unable to swallow, without speaking with me or getting my permission, they forced an NG tube into him in order to give him oral antibiotics for the infection.
I pulled out my copy of the Advanced Directive and asked the doctor, “did you see this, especially the part about ‘no NG tube’?”
The doctor said, “Advanced Directives only give instructions about NG tubes for feeding. This wasn’t for feeding; it was for treatment with antibiotics. That’s different. We haven’t given him nutrition through the tube.”
So technically, she was correct and they had complied with the orders in my husband’s Advanced Directive.
But she admitted like the nurse did, that she did not have time to read Advanced Directives and “depended on family” to advise what to do in order to comply with a patient’s wishes when they cannot speak for themselves.
Then more doctors arrived. Hepatologist (liver specialist); two Nephrologists (kidney specialists); Hematologist (blood specialist); and Oncologist (cancer specialist)… along with two others who introduced themselves, but it didn’t register with me who they were.
Because I could see that my husband was getting agitated with so many people in the room, I asked if we could speak elsewhere, outside of earshot. We moved out to the hall.
Discussions with all these doctors was confusing and a little overwhelming. All of them had different opinions. “Well, you can ‘try’ dialysis. It ‘may or may not’ alleviate the delirium. We can continue to give him antibiotics, but they don’t seem to be working. In order to give him dialysis, he will have to stay another five days and have a new line inserted through his neck.”
My husband already had four lines into his veins (mediport + 3 IV lines.) And you’re suggesting an additional major intrusion with a venous line that ‘may or may not’ help?
I relied on every scrap of medical knowledge I had ever learned. I asked all of these doctors tons of questions. They debated with each other in front of me. For a while, I was observing this medical debate surround me, overwhelm me, and be not helpful at all. These doctors had different and sometimes conflicting opinions on what to do, and whether my husband had a chance to recover from the infection that damaged his kidneys so badly.
As I was processing what I was hearing from these doctors, I could still hear my beloved husband inside the room — vocalizing. Those yelps were hard for me to hear. I could tell — I knew — he did not want to live like this.
I recovered from my dazed confusion and said, “doctors, thanks for your debate and suggestions. I am invoking my rights as given to me as my husband’s health proxy in his Advanced Directive. I want only two of you to remain and come with me into my husband’s room — Dr. (Hospitalist) and Dr. (Nephrologist). The rest of you — thanks for coming, now please just go.”
I did not wait for an answer. I put my PPE/gown back on and pointed to the Hospitalist and Nephrologist with a “finger pull” gesture, asking them to follow me back into my husband’s room. They did.
I turned to my husband who was awake and yelping incoherently to say, “There are two options. You can stay here for another five days, have a line inserted through your neck for dialysis and see if that may help, OR, I can end this and take you home for hospice. What do you want to do?”
I repeated this question three times with these doctors as witnesses so there would be no mistake.
My husband could not speak coherently, but I distinctly heard three words, “home, away, out.” Concurring with what I knew his wishes would be. Get out of the hospital, even if that means death soon to follow.
So by noon, I had made the hardest decision of my life. I instructed the doctor to have the NG tube removed, stop further treatment, and help me get him admitted to hospice asap.
I explained all of these decisions to my husband as if he were his usual self and could understand. I think he did, one way or another.
But what I was doing was preparing him to die. I made THAT decision. Toughest.decision.ever. Ever.
I credit the Advanced Directive for making it clear that I had the authority to act. No one questioned that and everyone complied once I made it known what I was doing and why.
I also credit my husband for talking with me several times about “what to do if I have to be your healthcare proxy.” We talked about it a lot, and I felt that I understood what his wishes were. (I tell you, though, it’s one thing to talk theoretically, and quite another in reality.)
The afternoon was more quiet. They removed the NG tube and were giving him medications only for pain. They stopped all other medical treatment. Hospice arrangements were made. Transportation to the hospice center was also arranged.
I had a moment of self-doubt. I remember that I called my sister and questioned, “did I do the right thing? Is there any chance of recovery? Did I just decide to let my husband die?”
While my sister could only console me, she affirmed that I was thinking and acting rationally and that I made decisions informed by knowing my husband’s wishes for having discussed this before with him. She’s always had my back; she relieved my mental anguish.
One month ago, New Year’s Eve, was no party. No fun. Hard, hard work. Toughest decision I have ever made in my entire life. And having to make that decision all alone while listening to my husband yelping / vocalizing but not communicating … was exceptionally difficult.
If you are reading this — make sure YOU and your spouse/loved ones have an Advanced Directive. While emotionally difficult, having such a legal document as well as talking about it, makes decision-making “when the time comes” easier. At least legally and administratively. Nothing about emotionally….
Life is short: have courage to make the hardest decision ever. Doing so is the strongest demonstration of love you can ever do.