My Alert Patient at the End of His Life

*Writer’s note: Because of privacy laws, the subject of the following story is not an actual patient, but a story that includes a combination of many many patients and scenarios over the years.

More often than not, when someone is actively dying, it appears that they are not aware many hours before they die. Their eyes are closed and they are not responding to voice or touch. Other patients are aware and responsive until their last few moments. I had the honor of being with my patient *Paul, who was aware until the last moment of death. His son and I were able to support him as he was dying.

I visited Paul two to three times a week for several months. He had lung disease so we were constantly managing his shortness of breath. Oftentimes, patients with respiratory issues are a little grumpy from the constant struggle with air hunger, but this man was consistently kind, gentle, and sweet. 

And let me tell you, this gentleman could talk.

Each visit, in spite of his difficulty breathing, he would tell me long stories about the business that he owned, or he would show me his paintings and marvel at how this hobby began at the age of 70 after his wife had died. He always had a new story to tell about his wife with tears in his eyes: “I don't know why she said yes.” They married when he was 18 and she was 16. 

One Monday, our hospice got a call from the son who said his dad’s breathing was a bit labored and requested a nurse visit. I arrived and the son was in the kitchen eating a sandwich. For as many words as his father had, the son was a man of few. He nodded and motioned me to his dad's room.

I walked into Paul’s bedroom and found him very pale and quiet with rapid and labored respirations. His legs and arms were a little cool, and I noticed some slight mottling on his knees. I sat next to him and held his hand. He looked in my direction but did not really look at me. Instead, he kind of looked through me. I have seen this look before — a moment where the patient seems to be part on earth and part stepping into the next mystery. He tried to utter some words but simply could not. 

I asked him if he was in any pain; he slightly shook his head no. I told him that we were going to keep him comfortable and give him some medications for his labored breathing. I noticed a subtle nod yes. His oxygen was on, but the tubing was coming out of his nose. I readjusted and opened up a window for some fresh air. His medications were at the bedside table. I gave him 15 milligrams of liquid morphine for his labored breathing because that was the dose that had been effective for him and 0.5 milligrams of Ativan for the concerned look on his face. 

Morphine and Ativan are a power couple at the end of life. Morphine is an opioid that alleviates pain and any respiratory distress. When someone is actively dying, you have to look for nonverbal indicators of discomfort such as a furrowed brow, grimacing, tension in the body, guarding certain body parts with their hands, rigidity, clenched fist, knees moving up, moaning, groaning, and labored breathing. I usually say if you think they look like they are in pain or appear distressed, they probably are and would benefit from some medication. We usually start with the smallest dose — five milligrams — and increase if needed. 

Ativan is an anti-anxiety medication. My guess is many patients have some anxiety about dying, and if they look like they are tense or in any kind of distress, they would probably benefit from some Ativan. We always start with the smallest dose — 0.5 milligrams. The two medications work nicely together to soften the dying process.

I told Paul I would be right back when I went to get his son. He again gave a very slight nod of the head. I walked into the kitchen and gently told his son that it looked like his dad was close to dying: “Your dad has changed a lot since I was last here. He may not have that long. Would you like to sit in there with me?” His son was surprised and stopped chewing his sandwich. He nodded, put the sandwich down, washed his hands, and followed me into the bedroom. Together we gently moved Paul more upright in bed and placed some pillows underneath his arms so his lungs could expand with ease. The son texted his sister who replied she was on her way.

Paul’s respirations shifted again; they were more shallow this time. His bedroom was small, and he had all of his supplies easily accessible: an oxygen concentrator, extra tanks, and tubing. After we shifted his supplies around, we were able to squeeze in two dining room chairs at either side of the bed. His son sat on his dad’s right side; I sat on his left. Paul was aware but did not talk to either of us. I held onto one hand and his son followed my lead. Paul looked towards his son, who had tears streaming down his face as he whispered, “Mom is waiting for you.” Paul focused on his breath and let us hold his hands.

Your presence is a miracle

Thich Nhat Hanh

I had given him his medications about 30 minutes before, and they were starting to work. Paul's respirations were less labored, and his body was more relaxed. I said, “Paul, we are going to stay with you. Your daughter is on her way.” And I asked his son if there was anything that is important to his dad right now: anything religious or spiritual or if there was anybody else that we should call. His son shook his head while he turned on his dad’s music. Dolly Parton crooned in the background. “He loves country music.” 

I was surprised and not surprised when Dolly Parton's voice felt like a very appropriate and spiritual way to exit this earth.

We went silent again and just sat with him. Paul’s breaths got further and further apart. His son said that he felt that his dad did not want us to touch him anymore, so we pulled back our hands and just sat at the bedside. The need for touch is different for each patient. I take my cues from the patient and their family. 

Paul’s breathing began to slow with pauses up to 30 seconds long. These pauses in breath are called apnea. His son said instinctively, “It's ok dad, we are here.” It is comforting to reassure the patient you are there with them. 

Then Paul gave one final breath. We waited. About a minute later he let out a small gasp and died. 

His son had tears streaming down his cheeks. I turned off the oxygen, and we sat in the silence with our hands resting on Paul's arms. 

The reality is that you will grieve forever. You will not "get over" the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to.

Elisabeth Kubler-Ross

The daughter slid in quietly about five minutes after her dad had died. I got up and let her sit in my chair as she sobbed. I set a box of tissues nearby and stepped out of the room to give the family space. 

Many people miss the moment of death, and although it is incredibly painful for the family or friend that missed it, it happens all the time. It is almost impossible to accurately predict when someone's death will occur. There are signs, and we try our best to get family and friends there, but sometimes, oftentimes, it just does not happen. There is still so much beauty to behold after someone has died. I like to imagine that the patient is still in the room with us. You can still bask in their presence although they are no longer physically alive.

Paul died alert and aware until the last few moments of his life. The son and I spoke directly to Paul, told him what we were doing, and gave him silence when that felt appropriate. We offered constant reassurance, physical support, and medications to soften this process. And Paul died to the holy music of Dolly Parton in the background as his wife welcomed him at his next destination.

Blessings.