Dark Days in Palliative Care: Emily's Story: Grief and Presence in Self-Care

It's been a week since Emily died. She was only 6 months old. And even as a palliative care doctor, I will admit it doesn't feel normal for an infant to die in a developed nation. It hit our team hard. You never take notice of the atmosphere of a room until devastation hits. Each second carries with it the heaviness of the moment, drenched in sadness, alive in suffering, and draped in the hope lost.

And sometimes silence is all you can offer. For when words fail, presence and being are the two most powerful and honest ways you can move forward. Seeing out the seconds. Living through the minutes. Existing in the hours and stepping forward through the days. It may be the only way to deal with suffering. Presence — shared stillness with compassion.

Phones chimed and rang across the region, delivering the news that we least expected — Emily had died. Each recipient's face crinkled in devastation, eyes hollow in shock, color draining with few words spoken. We gathered together from everywhere, creating a safe space for us to process the news and debrief. And that is what tight-knit teams do — they turn toward each other and walk through dark days together.

Emily's death caught me off guard. We had planned for her death and imagined what holding vigil around a dying infant would look like. But life. Life happened. Unpredictable, uncertain, and unscripted life. I've learned not to shake my fist at God because to live is to know that each day of ours is numbered. Even for little Emily, not even a year. I've worked with many who've died to know that anything and everything is possible in death and it happens when we least expect it. But this was different.

As a dad of three healthy boys, the pain of losing a child was only but a thought for me. A brief and unpleasant engagement in the far reaches of my consciousness. But I've been there, if only for a moment. The grief, visceral. The loss, unimaginable. Suffering upon suffering. How can you smile at the end of a day such as this? Does intentional forgetting diminish the life that was lost? How do we move on and care for our wounded hearts and battered spirits?

Brown eyes meet me at the door as I arrive home that night. The only pair in our family the same color as mine. What do I say to my five-year-old son? Cheeky, clever, and classically cute. Our youngest. The one my wife and I want to remain a little boy for as long as we can keep him there. Our baby.

He wants to play Uno with me. “The tournament continues!” he shouts. “I'm beating you Dad.” He's chuffed because he's up, three games to my two. But he doesn't know that Emily died and he doesn't know that we sat in silence, some of us sobbing, the rest, empty and shell-shocked. These hours felt like only moments ago.

He doesn't know that babies die because all he sees at the moment is dad. Dad who must play Uno with me. Little does he know what I do at work. It's much simpler to say that “I help people” because I do. He follows me into my study and hands me the pack. Only he and the dog greet me these days. The sign of the season. Dare I say, middle age. Not surprising to me, I'm present and Brown eyes and I sit down to play. But before I drove home that night, I took a moment to sit in silence, close my eyes, and focus on my breathing. I entered the third space, the transition between work and home. And as I drove, I hummed a catchy tune and stared into the pink sunset sky. Life goes on. It certainly does.

As the sun beat down that Friday, it warmed the freezing southern air. Its rays shone on those who went about their business, maybe with the dreariness of the short winter days. It shone down on those who laughed out loud: hearty and full of life. It shone also on those who took their last breath. That same sun touched us all, Emily, too

To live and love fully is to become acquainted with suffering. Suffering and life are inseparable. To not ever suffer is to not ever love and to not live fully. And as Brown eyes called “Uno!” for the fourth time that week — a clean sweep of the playoff series with dad, suffering happened all around us. In our families and to our friends and most certainly to my patients. We escaped this week, but I know that suffering is never far. For I suffered too. I've called out to God. “It's unfair.” My pain and my loss. My broken dreams and heartache. A good and moral life and all the money in the world don't equal a pain-free existence. It never does and we see this every day. It is not pessimistic to live this way, but to live with the reality of numbered days.

Uno, you say? Yes, I'll play because you'll only be five once. And when you're six, Brown eyes, perhaps you'll be interested in something else and there will be no one to greet me at the door. You'll never know how much playing Uno today means to me, Brown eyes. Perhaps one day, as a father, you will. Self-care is presence. Anything intentional we can do to be present: fully us and fully here.

As I reflected on this day, I smiled. From not ever wanting to practice medicine again, to this, one of our team's darkest days. I acknowledged the journey that I had been on. We have been our biggest fans. This is central because we matter. Our gifts and our words, our doctoring and our presence, they matter. Because if we cannot care for ourselves, we will not be able to care for others. I've learnt this the hard way, twice, and come close to burnout many times more. And so I care for myself intentionally. I orientate all my activities to what fills my cup and speaks to my heart. My family too, for this is the way we've chosen to live. A rhythm of hope and replenishment.

But the grief, it is cumulative. How do we make room in our hearts for more loss? Grief that turns into burnout is grief with no place to go. ¹ My grief finds its way onto pages. Keystrokes and pen strokes, it is the only way that I can make sense of my swirling thoughts. For the words that I write don't just matter to me, they matter to others too — my family, my patients, and my team. For without them I'd drown in an abyss of sadness and my gift to the world would cease to give anymore. To care for yourself is to grieve too.

Emily was remarkable in every way. She was loved and she was cherished. And so words needed to flow. After Emily died, I ran and I rested. I wrote and I reflected. I spent time with family and yes I played Uno, but Brown eyes won those games too.

Self-care is everything when you decide to wade out each morning into a sea of suffering. Not many of my patients are having their best days. I often meet them at their worst. To think that we can swim in a sea suffering and not get wet is ludicrous ¹ a trap for the simple, a repeated mistake of burnout by fools — once me. To grieve properly is self-care , care for the professional who is immersed in suffering each day. Grieving enables us to move forward after a loss. It allows us to heal. “On to the next” is denial of common humanity and our emotions, that someone can die in front of us without touching us. ² It meant the world to our team to care for Emily in what we know now were her last days. It brought meaning to our care and joy to all to see Emily and her mum smile.

Self-care is wisdom , the skill of living well in serving the sick and dying, the hurt and lost and the broken and the fearful. Caring for yourself is not selfish, far from it. It softens the heart and tames the mind. It primes the soul and it replenishes our spirit, readying us to care again.

We need your presence and we need your heart. So care for your future self, please. Care for the patient who may break your heart but not break your spirit. You are a gift.