Ninety Minutes to Die

I got the call late Friday afternoon.

“Would you come and help with this patient's end-of-life care?” Not an unusual call to start with, but it got more complicated.

Mark was 30—a teacher, married, with two young children. He had been in a car accident four months earlier and sustained severe head injuries. He hadn't woken up since the accident and was now considered to be in a persistent vegetative state, dependent on a tracheostomy for ventilation. The neurosurgical team had spent many hours talking to Mark's wife, sister, and parents about his progress and prognosis for recovery. A decision needed to be made about transferring him to long-term care. The family took some time to think but were unanimous that Mark wouldn't want to live in a nursing home; the family wanted the tracheostomy to be removed and Mark to be allowed to die.

I had never attended a decannulation and I was grateful to my colleague for the invitation to assist. It was planned for 9 a.m. Tuesday morning so the family could gather from around the state and wish Mark goodbye.

“By the way,” my friend added, “the family wants to donate Mark's organs” as a donation after cardiac death (DCD). Now I was really out of my comfort zone. I spent the weekend looking up the literature on stopping ventilation and DCD.

We all gathered on the ward at 8:30—30 minutes before the planned decannulation. The room was full—ward staff, intensive care unit (ICU) staff, the transplant team, support nurses, and myself. Everyone introduced themselves and explained their role. There were three transplant staff, but only one would be in the room. The ward staff had cared for Mark and his family for the whole four months and wanted to be a part of his dying, but were steeling themselves for their grief. The transplant timelines were tight—when he stopped breathing, death would be confirmed and the time would be announced. Two minutes later, death would be confirmed again, then Mark would be rushed to theater, where the multiple transplant teams were already scrubbed and waiting. Everyone seemed clear in their role, so we entered the room.

Mark was surrounded by photos and his children's artwork. His wife was holding his hand, his sister was staring out the window, his parents were perched nervously on chairs, and his aunt was hovering behind.

The ICU physician explained the process of decannulation again to the family, having discussed it on the Friday. He explained what to expect and what he would do for any symptoms. He reminded them that Mark may not die instantly—that it often took minutes or hours to die. He reinforced that donation could only occur if Mark died within 90 minutes of decannulation. He had already given 15 mg morphine and 15 mg midazolam to settle Mark. Tension was high in the room.

A further bolus of medication was given and the dressing prepared to cover the tracheostomy site. The cuff was deflated and Mark coughed; a further bolus was given. He coughed again when the tracheal cannula was removed and was then silent. His family sobbed as the end had come.

We waited for the ICU physician to declare death. But before he could move to the bed we heard a sound—faint, but unmistakable—Mark was snoring. One by one the family looked up as his chest rose and fell to the tune of regular snores. They looked at each other in disbelief, and then his sister looked at their dad—“He always was a loud snorer.” The family didn't know how to react. His snoring was such a normal sound. Yet they knew that he needed to die if he was to fulfill his dream of organ donation. We started to take observations every five minutes according to the donation protocol.

It was surreal. I have watched many patients at the end of their life, but never taken their pulse and blood pressure as they lay dying. The family started to talk quietly, with the snoring in the background.

An hour passed. Mark continued to snore, irregularly now. More morphine and midazolam had been given. The family was exhausted. They had prepared themselves for his death at 9:00 and it was now 10 a.m. There were only 30 minutes left for him to die if he was to donate his organs.

10:15. Mark's breathing was more irregular. We continued to check his blood pressure which remained stubbornly above 100 mm Hg. We also watched his pulse oximetry which had slowly fallen and was now at 50%. His lips and periphery were blue, yet his family said that his hands were still warm.

10:20. Mark started to have periods of apnea. His oxygen saturations had fallen to 30%. Every time we inflated the blood pressure cuff the family stared at the monitor, willing his blood pressure to fall, wanting to see a sign that the end was near.

10:25. Nothing changed with Mark but his family was getting agitated. They kept looking at the doctor from the transplant team, who showed no sign of emotion or clock watching. I left the room to hand over the latest observations and asked the transplant nurses what happens next. “It's too late for the liver, but we might get an extension for the lungs.”

10:30. Was this it? The family had pinned their hopes on the opportunity for organ donation and this was rapidly slipping away. The donation doctor slipped out of the room to discuss with the surgeons and returned quickly. “It's OK,” he reassured the family. “Because Mark is so young and healthy we can have an extra 15 minutes.” As one, the family turned from the doctor to the patient. Willing him to stop breathing. Watching the oximeter reading falling to 30%, then 20%. The pauses between the breaths becoming longer. “I feel so awful,” his mother cried. “I can't believe how much I want him to die.”

I've seen relatives in this conflict before—wanting the suffering to be over but not wanting to let go. Yet never like this. Never with one eye on the patient and one on the clock. Fourteen minutes to go.

We kept taking the blood pressure. Mark's dad just stared at the oximeter. Every time Mark took a breath his mother cried out. Ten minutes to go. Outside in the waiting room one of the nurses updated the large group of extended family and friends. They were all watching the clock also.

Five minutes to go. Three breaths per minute. Oxygen saturations below 10%. Mark was blue, yet his blood pressure remained over 100. His family continued to hope for his death.

No time left. The extra 15 minutes were up, yet Mark continued to breathe. The donation doctor left the room again. It was now 10:45—1 hour and 45 minutes since decannulation. The ICU team had warned the family that death didn't always occur instantly, but noone had really believed them.

The donation doctor walked back again—the instant focus of attention. “We have 15 more minutes.” The surgeons were still downstairs waiting, scrubbed, and ready to operate.

We stood and watched the time on the monitor. We kept taking blood pressure readings, although I no longer believed that the donation would happen. I switched off the oximeter, as it was just a straight line of 0. Every breath was like fingernails across a chalkboard, tearing through his family's hearts. They wanted him to die so much.

11:30. The donation doctor stepped forward. “I'm so sorry,” he said. “It's been too long. We can't make Mark's wish to donate happen.” He was so gracious to the family. “Thank you for giving us the opportunity to try.” His sister wailed, “Maybe there would have been a point to all of this if others could have benefited.”

11:33. We unplug the monitors and wheel them out of the room. We go next door and tell the relatives that the donation isn't happening. Theater is rung and the donation team stood down. The donation nurses who have maintained a vigil outside the room sign off the paperwork and pack up.

And inside the room Mark continues to breathe and his heart continues to beat. His family is exhausted, and one by one we offer them comfort and leave the room. We leave them to each other and the grief that cannot quite begin. We write our notes and go to see other patients.

I check back with the ward later that day, assuming that Mark has died. The nurses tell me that he is still alive. I visit to make sure that he is comfortable and offer support to his family. I can't believe that he looks better—his breathing is deep and regular and he isn't quite as blue. His family looks worse, though—they have spent 12 hours at the bedside, expecting him to die every minute. I have to tell them that he looks better, that he might not die in the next few hours. They are devastated. They are exhausted from their vigil.

The next morning I go back to the ward. Thankfully Mark had died peacefully just after 6 a.m. The nurses are so relieved.

Yet I can't stop thinking of us all watching the clock like hawks—that Mark only had 90 minutes to die.