We don’t always get it right. When we don’t, it can feel like failure.
I think that often our patients and other teams rely on us to predict when someone will die, and to have a plan in place. Doing this, however, is often incredibly difficult.
It’s not necessarily science. We’ve all had patients who defied the ‘norm’. Those who lived much longer than we expected. Those who died unexpectedly, when we thought they had plenty of time. We’ve looked at the studies, the treatments offered, and talked about prognosis – often based on clinical trials, the ‘median’ length of survival. Most times it’s a ‘best guess’. I often joke that wish I had a crystal ball. It would make my job so much easier.
When I first met him, he had already defied the odds. Two years ago they told him he had months to live. A year ago my colleague thought he was imminently dying. And yet here we were, another year later, and I was meeting him after a hospital visit where his doctors had gently told him that the best place for him was not in the hospital. He was still living.
We talked for a long time about the things that mattered most, and the things that were distressing him. Ultimately, it was not pain or other symptoms causing angst. The things that mattered most to him were updating his will and making his own funeral arrangements, so that he ‘wouldn’t be a bother to the children’.
He wanted to die in the hospice, rather than in the aged care home. His young grandson had died there just over a year ago, and he felt a connection with the staff. He liked the views of the lake and the peaceful location. He said he was ready for death, yet I could see the fear in his eyes. Not fear of the symptoms he might experience. Not fear of his life coming to an end. Not fear of what might come after death. The thing he feared most was not being in control.
He had insight into his hepatic encepalopathy, and the confusion terrified him. He wanted to continue to administer his own medications. He had a list of people he wanted to see, and another of those he that he didn’t. He wanted to be able to walk to the bathroom, to use his laptop, pay his bills, to write.
I saw him again on a Thursday, two weeks later. I could see his deterioration – yellow eyes, orange skin, fluid-filled abdomen, increasing shortness of breath. I suggested it might be time to come to the hospice now. He stalled – he wanted just one more blood test, one more telehealth appointment with his specialist, one more weekend in his room with his belongings.
“Next week”, I suggested gently. “Let us help you with getting your affairs in order, and manage your symptoms”. I thought we were running out of time.
On Monday morning I called to let the nurses know we had a bed available. Over the weekend his pain had increased but he had refused to allow them to give the medications I had already prescribed to keep him comfortable. We booked the ambulance transport, and agreed he would arrive before 2pm. We confirmed the nurse would send the medication chart, a copy of his advance care plan, his laptop and important papers.
She called me when the transport arrived to let me know he was on his way. “Tell him I’m here waiting for him to arrive,” I said.
Ten minutes later, my phone rang. The nurse was so upset she could barely speak. He had died as they had transferred him on to the ambulance gurney.
I was so devastated.
The tears flowed freely.
I felt that I had failed him.
He did not get to die in his preferred place.
He had died in pain.
Yet ultimately he had been in control. He had specified the timing. He had refused the medications that would dull his senses.
In the end, he had died knowing he was on his way to the hospice, where he wanted to be. It may not have been as I had planned, but I had respected his independence, and tried to honour his wishes.
“The only time we fail is when we stop trying”, according to Chuck Norris.
Maybe I didn’t fail after all.