For a place where people go to die, there seems to be a lot of laughter.
This was my first impression as I entered the hospice, and the place had already dispelled at least one preconception I had for my rotation as a student. To prepare for my month there, I’d brushed up on notes from pain management lectures and read articles that felt cold and clinical, articles about “the dying process” and “end-of-life care” and “comfort meds only”.
It was as though those of us in medicine wanted to believe death, like photosynthesis or metamorphosis, was a routine of nature, yet it was always shrouded in an unsettling darkness.
I assumed that to contend with it as a medical professional one had to distance oneself from patients. Cold and clinical must be the only way to approach death and still fulfill professional obligations. How else could people working in hospice make it through their day when their job was to watch life slip away from the sick and the old? The prospect of it was depressing. Yet this could not be further from the reality, as I would soon come to see. From the dying, I would learn about living.
Jane* and Pam* both had advanced Alzheimer’s. They shared a room, their beds opposite one another. Though they were perhaps ten feet apart, being in their presence gave one the impression that they inhabited utterly different dimensions.
Jane loved to talk. Conversations with her never made sense; each sentence was disparate and entirely unrelated to the one which came before or after it. It was as though an idea settled in her mind just long enough for her to verbalise it before falling back into the void that was her memory.
But Jane was full of joy, and she loved everyone who sat by her bedside with ardor, though she never recognized any of us. Once, I walked into her room and she waved me impatiently over.
“Oh, you’re engaged! What lovely news!” Jane exclaimed, taking both my hands in her frail, bony ones. I was not engaged. “God bless you both! You should smile more,” she said in an abrupt change of topic. Her voice took on a tone of practical sensibility as she wagged a finger gnarled by arthritis at me. “Smile all you can. It’s good for you.”
Pam, though she suffered from the same disease, was nothing like Jane. She could not speak; she babbled to no one in particular, but when she looked at you when you spoke, you had the feeling she understood everything.
In free moments between my work, I sat by her and told her about the changing seasons outside her window, how the geese were flying south for the winter and the leaves were turning. She watched me carefully and sometimes chattered her own response.
Her affliction had robbed her of her ability to speak, but when I held her hand, she grasped mine tightly. I wanted to think Alzheimer’s had left a piece of her mind untouched, but for all I knew, had she been able to speak, she might have made as little sense as Jane.
One day I pulled a chair alongside Pam’s bed and stroked her hand. “How are you doing today, Pam?” I greeted her offhandedly with no expectation of a response.
Pam suddenly ceased her babbling and looked me right in the eye, unblinking.
There was a keenness in her gaze, a sharp clarity that caught me off-guard. “I’m well; how are you?”
I sat in shocked silence for a moment, before Pam resumed her stream of incoherent sounds again. It was like seeing a brilliant flicker of light in a permanent darkness, a moment quickly come and gone. I said nothing else, but stayed by her side for a long time.
My last day there, I met Pam’s daughter. Pam had taken a turn for the worse, beyond the point of “rallying”, and now lay still and waxen on her hospital bed. Her daughter looked tired, but brightened when I told her how I enjoyed my quiet moments with Pam during my month at the hospice.
She pulled out her cellphone and showed me pictures of her mother before she had entered the facility, and the contrast was profound. I saw a grandmother baking cookies, an elderly lady smiling happily in a raincoat, a woman who I had never realised lived a full life before coming to hospice in her twilight.
In hospice, you see people at their sickest and weakest. You watch as their organs fail and their breathing slows, and all you can do is try to alleviate any suffering or discomfort they may have.
It’s easy to forget that your patients were not always this way. They had people they loved and who loved them, they bore tragedy and sadness, they aspired to dreams of their own. Their lives are a conglomeration of small moments imbued with a brilliant ordinariness.
Such moments pass unnoticed by most, but in hospice they take on a special significance. They are cause for celebration; a patient may respond to steroids well enough to sit and read with her husband, even if the effect only lasts a week. A man’s eyelids may flutter open at the sound of a familiar voice.
Watching patients in these brief flashes is like seeing someone fall under an enchantment, beautiful but fleeting, because you know it can’t last. But even those of us working there do not go untouched by the spell. It is impossible to be cold and clinical in a place that respects life and cherishes its small moments.
When you are invested in a patient’s comfort, you realise compassion brings a humanity to death. Such a revelation does not translate well into print in clinical journals, but bears great weight for those who realise it firsthand. Hospice, it turns out, is a place for life as much as for death.
*Names have been changed
Dr Lisa Ruohoniemi, PharmD., is a Connecticut-based community and long term care pharmacist.