my gaze and I inhaled slowly.
In these moments, when someone directly asks if they are dying, there are choices to make in response. Slip beneath the words, shift my eyes away from the gaze, succumb to the instinct to protect, to avoid the pain, to say something else, anything else. You can beat this cancer. You’re too young to die. Miracles happen, they really do. I know lots of people who’ve defied their prognoses. Michael, the guy you met last time you were here, outlived the doctor’s prediction by two years. You want to echo a family’s plea that death is conquerable, that the sick person just has to find the strength to fight. But in the end, you have to be honest. Death was already present on the couch beside Daniel, coaxing me to speak, and Daniel needed me to respect his capacity to handle the truth. Without respect, there’s no dignity.
I exhaled slowly. ‘No, it’s not looking like you’re going to make it, Daniel.’
Daniel’s voice was urgent. ‘If I’m going to die, then I want it to be as easy as possible for Lin and the kids. They’ve got to be able to manage without me.’ He turned his wedding band around and around on his finger, loose from the weight loss.
‘Daniel, I can help you prepare for your death, without either of us giving up hope that surprising things can happen.’ Daniel’s shoulders dropped an inch or two as he relaxed, and his eyes gave way to tears of relief.
‘Thank God. I knew I couldn’t figure this out by myself. I just know that pretending I’m not going to die isn’t going to help anyone,’ he said.
The dawning reality that death cannot be avoided has its own rhythm, its own season, and fruitful conversations about dying happen in their right time. I used to think it was my duty as a healthcare professional to guide people towards the fact that death was approaching, even without an invitation into the conversation. I’d feel a sudden rush of heat in my body, an upwelling of responsibility. I believed my forthrightness would help the dying person and give them enough time to prepare for what was ahead. I had seen many people run out of time to say goodbye, which often precipitates years of regret for those left behind.
However, over time, I’ve learned that my agenda, my hurry to open up a conversation, can frighten a person who isn’t ready. I’ve had to cultivate patience, quell the impulse to jump in until the truth has caught up and the psyche has assimilated what the body already knows. Sometimes the mind never catches up, and I have had to learn to accept that, too.
I knew Daniel was ready to talk from the urgency in his voice and the way he leaned forward into our conversation.
‘Let’s start with the practical stuff,’ I said, an easier place to start than the emotional preparation. ‘Have you thought about where you might die?’ I asked.
‘I can’t imagine Lin and the kids coping if I die at home, in our bed. She’d be haunted after. What do you think?’ he asked.
‘Memories of death are not always gruesome. They can be gentle and afterwards people usually speak about the comfort of having the person die at home,’ I said.
Daniel’s face was softer. ‘My grandpa died in his own bed, now that I think of it, and Grandma seemed to be okay, but Lin believes death is unlucky so I think it would be easier for her if I died in a hospital, or a hospice,’ Daniel said.
I explained to Daniel the difference between palliative care units, regular medical units and hospices. Palliative care units (PCUs) and hospices tend to be better staffed than medical units, and have team members who are specialised in end-of-life care. They both have less of an institutional atmosphere. People tend to go to a PCU for symptom management, such as pain or nausea, and then, once that’s under control, they can go home again or to a hospice. Most hospices have a policy of only admitting people who have a prognosis of three to six months.
A faint flush of pink had settled in Daniel’s cheeks. The knowledge that help was tangible likely brought him some ease and consolation.
‘There’s a hospice quite near your house. You can bring things from home such as pictures for the walls and your own pillows and bedding. Lin and the kids could be there as much as they want, and they can even sleep over,’ I said. Daniel’s eyes were locked onto mine.
Memories of countless families I had known flooded my mind. Little Sarah, who was four when her mom died in a hospice, brought offerings from home: a flower from the garden, a candy, a storybook. The hurt was evident in her wary glances and the dishevelled state of her mismatched clothes. Matthew, almost sixteen, who slumped in the chair by the window of his dad’s hospital room, baseball cap pulled down low, earbuds always in place. He exuded inaccessibility, but he never missed a day of the fifteen-day after-school vigil before his dad died.
Daniel moved himself from the practical to the emotional. ‘Is it okay for the kids to see me dying? Would it traumatise them?’
‘It depends on whether the process is an easeful one or not. Most times the palliative care team can settle your symptoms, and you’d look to the kids like you were sleeping. It will be very sad for them, but not traumatic.’ I was aware of my change in emphasis, from ‘would’ to ‘will’, ushering Daniel closer to what was inevitable. He leaned forward slowly to pick up the glass of water on the table and took a couple of gulps. I waited while he took a tissue and wiped his mouth, then dropped the tissue into the wastepaper basket. When he lifted his eyes to mine, I continued.
‘In the unusual circumstance there is a symptom that’s difficult to control, or something sudden happens, then it is best for kids not to be there. That would be traumatic,’ I said.
‘Who decides?’ Daniel asked, with surprising stamina for what had become a lengthy conversation. My thoughts briefly turned to Emily in the waiting room. I felt grateful for her self-reliance that allowed me to talk to her dad without interruption.
‘The team at the hospice will guide you, but it would be good to talk with Lin about this too.’
‘What about after I’ve died? Can the kids see me then?’ Daniel asked.
I reassured Daniel that children usually know whether or not they want to see the person who has died, and how long they want to stay in the room. I recommended that his wife Lin or someone close to the kids should be with them. Kids need to say goodbye just as much as adults do.
‘This might sound like a weird question.’ Daniel paused, then looked at me.
‘It’s okay,’ I said.
‘How am I going to know when I’m dying? Are you living one day, and dying the next?’
‘We live right up until the last breath, really, but there is a time when we enter the final phase of dying which usually lasts from a few hours to a few days. The body doesn’t want food or liquids any more, and the organs naturally shut down. You’ll be asleep more than awake, and you will likely know you are dying,’ I said.
Daniel leaned back against the cushions of the couch and glanced behind him, out of the window, taking a break from the conversation.
He turned back and I continued. ‘When Lin entered the last phase of childbirth, the pushing part, you were there, right? No matter how much determination she had, she couldn’t stop what was happening. Your daughters really birthed themselves,’ I said.
Daniel’s eyes shone at the memory. ‘It was amazing to hold each of them for the first time.’
When I told him
