Missing the Moment of Death

“Grief is the dark color that adds depth to the canvas, providing contrast and texture.”

—-Francis Weller, The Wild Edge of Sorrow

All members of the hospice team vigilantly watch for signs that a patient is imminently dying. Ideally, we want our hospice patients to die surrounded by the love and blessings of their family and friends. I have predicted deaths down to the minute, but I am humbled and surprised every day. After years of working with patients who are dying, watching how they die and when they die, I have learned to trust that dying is one of those divine life events that we cannot often predict, calculate, or time perfectly, no matter one’s experience. I want to share some stories so that family and friends understand that patients die in a wide variety of ways at varying times, and because of the unpredictability of this event, some patients die without family present. 

“Kindness and mercy are soothing medicines in the room of regret. Forgiveness cannot be willed. When our regrets are polished by self-compassion, they soften and release the life trapped inside.”

—-Francis Weller, The Wild Edge of Sorrow.

Terminal Event

Sometimes, hospice patients have a sudden terminal event that leads to their death; a blood clot to the lung or brain, a sudden internal hemorrhage, or the patient may have a cardiac event. It sounds scarier than it is (we cannot confirm with diagnostic tests what is happening, but we do make informed assumptions). Nonetheless, it is surprising for everyone because the patient dies rapidly after this event occurs. 

 I took care of a patient who was sitting up in bed eating grilled cheese and tomato soup while doing a crossword puzzle. He had some shortness of breath, which was not uncommon for him. After I unsuccessfully tried to help him with his crossword puzzle, I humbly left the room to check on another patient. When I returned 30 minutes later, he was actively dying. I was startled. Moments ago, we had a conversation about a flightless bird — an emu — and now his eyes were closed, he was non-responsive, and had moments of apnea. Our best guess is that he had a cardiac event. I ran to call his family. They arrived 15 minutes after the patient took his final breath in the presence of the nurse and CNA. 

“Where there is sorrow, there is holy ground.”

—-Oscar Wilde, De Profundis

Some patients seem to be waiting for a certain family member. Yes this is true, even though patients are in a nonresponsive, “unconscious” state, they seem to be waiting for something or someone. And when Sam from Seattle finally arrives, the patient dies in the next 24 to 48 hours. I have also taken care of patients that seem to have weeks left, and after a family member arrives, the patient begins to actively die. I had one patient who had not seen her imprisoned son for years and after our resourceful social worker tracked him down he arrived with police officers. He lay on top of his mother and sobbed. Even before he left the room the patient began to shift and actively die.

Some Patients Seem to Want to Die Alone

Some patients take a long time to die. It takes nine months to create a little human in the body, and it can take months for this physical body that has only known living to decline and die. When a patient begins to experience the final stage of dying, death will likely occur in hours to days. But sometimes, the patient lingers in this active state of dying for days to weeks, leaving the family and staff scratching their heads. They will eventually die and everyone will be surprised when they finally do, and it will likely be when you step out to go to the bathroom. 

I have witnessed many families hold vigil for their dying loved one. The patient hovers in this transitional state with a constant familial present nearby stroking their arm or whispering prayers. The patient seems to take an abnormally long time to die and as soon as the family decides to leave for lunch together, the patient dies.

One feisty gentleman had the mouth of a sailor and an abundance of grandchildren who were ever-present. The room would get lively and sound more like a bar with F-bombs flying. We often had to close the door to not disturb the other patients. 

One afternoon after one of these “bar scenes,” the grandkids left the room to have a smoke. Another nurse and I were in the room, and his breathing pattern suddenly shifted. We both looked at him, then at each other. A CNA walked in and confirmed our surprise. This gentleman was suddenly dying, and it would likely be in the next few minutes. The faster nurse ran out to the parking lot to tell the grandchildren that grandpa was dying right now, and they ran in to sit with him as he breathed his last breaths. 

“When we come to our grief with reverence, we find ourselves in right relationship with sorrow, neither too far away nor too close. We have entered into an ongoing relationship with this difficult holy visitor. Learning we can be with our grief, holding it softly and warmly, is the first task in our apprenticeship.”

—-Francis Weller, The Wild Edge of Sorrow.

Some Patients Tell Me, “Please Don’t Call My Family.”

The first time a patient shook his head “No,” when I told him I was going to call his family surprised the heck out of me. He was dying from a terminal event. I knew he had hours to live and he knew he had hours to live, but he did not want his family or friends in the room with him. I had been a hospice nurse for a year and my goal was to have family in the room whenever any of my patients died. I medicated him, stayed with him until he died and I was pissed he would not let me call his family. I sobbed after his death. Tears, snot, the whole shebang.

It has taken me years and many of these moments when a patient tells me clearly “Do not call my family” as they are actively dying to realize it’s not about me. It's not about my goals (to have a “beautiful death” surrounded by family). Some patients truly want to die without family present.

And listen, as a hospice nurse, it is a difficult. We are the ones who have to support the family after they walk into the hospice home and find their loved one has died without a family member present. This grief is unbearable to be around–it is grief that is filled with heavy regret, misery, heartache, what-ifs, and self-flagellation. It is the grief that brings people to their knees right at your feet when you utter the words, “I'm sorry, he just died moneys ago.”

What if I Missed the Death?

If you do miss the moment, you can still make the moment after the death beautiful and loving. You can still talk to your sweetheart, say a prayer, tell stories, and touch their body. I find this time right after death is as holy and sacred as the dying process. 

I was in the hospital about to have a “hospice consultation” with a patient and his wife which involved discussing hospice and discharging him back to his home with hospice support. As soon as I walked in I thought, “oh no, this guy is dying. Now.” He was non-responsive, his skin was mottled, and his respirations were quick and shallow followed by slow and deep labored breaths. The wife had not yet arrived for our meeting.

The patient’s nurse, doctor, and I flew into action. We medicated this gentleman for labored breathing, summoned the music thanatology-harpist lady, and called his wife to gently tell her that her husband was actively dying. When his wife arrived 30 minutes later, he had just died. She was devastated. We pulled up a chair so she could be right next to him, the harpist that was playing continued for the next 30 minutes while the wife sobbed, blew her nose, yelled at her husband for not waiting, laughed at her husband for not waiting, and sobbed again...she was wrung out. The chaplain came to sit with her. Although she missed the moment, she had many profound moments afterward. Moments that will hopefully soften her grief process.

“Grief dares us to love once more”

—-Terry Tempest Williams, Refuge: An Unnatural History of Family and Place

————-

Hospice nurses feel an incredible amount of responsibility when patients die alone. After years of working with patients who are dying and watching how they die and when they die, I have learned to trust this process. One of my nurse mentors Renee said, “it's a blessing if you are there for the death and a blessing if you are not there.” I now feel as though everyone is exactly where they are supposed to be when death happens; it is a beautiful (and sometimes frustrating) part of the mystery.

The hospice team will vigilantly watch for signs that the patient is getting close to the moment of death and alert the family with any changes, but sometimes we cannot accurately predict it. And sometimes the death will take an unexpected twist. And sometimes the patient will decide to die quietly and alone. As much as I want to be in control, I am not. This is part of our work here on earth: to give up our control, to trust that things will work out as they should, and to be present in the moment. Life constantly hands us opportunities to practice these skills, and death will too. Take a breath, and give yourself some grace and space to rest in this part of the human mystery. Dying is an individual sport; your loved one may need to do this work alone.