Lessons

Resident

It was her eyes that struck me the most. Large, suspicious yet docile, they observed us with a liveliness that seemed to defy the body that was crumbling around her. Over the course of an hour, she told us her story. Long distrustful of doctors and mainstream medical practices, this 38-year-old had sought treatment of her cancer in alternative therapies, traveling the globe to fight the scourge that had first taken up residence in her breast seven years ago.

At first I felt anger. Anger that she had shunned medical treatment for so long. Then anger at myself for this judgment. And anger that someone so young, with so much potential, was slowly slipping from this world.

That's not how Leia saw it though. She wasn't dying. She was fighting. And she would be fighting at home, not in this hospital. It was my first day as a palliative care resident, and I watched as Cindy, my registrar, slowly but surely worked her magic on Leia. In retrospect, it wasn't magic, in fact, Cindy didn't actually say too much. But she listened—actively. It was almost as though, for the very first time, Leia was talking to a medical practitioner who actually heard what she had to say. This was my first lesson: if you want to understand someone and if you want them to trust you, you must listen.

Leia decided to leave the ward later that day. She had reluctantly come in for a blood transfusion for symptomatic anemia, and her symptoms had improved. But she would be back. I knew that much.

Registrar

I love holidays, but not stepping back into a ward full of patients I don't know. So I had a lot to deal with that day—catching up on a week's worth of case histories, repeating my fabulous travel tales for the nth time, not to mention orientating my new resident.

The nurse's words echoed in my head as we stepped into Leia's room. Yes, she was young, but also tightly coiled up and poised to strike down any suggestion that this was a battle she couldn't win. I sighed inwardly as I realized there was no quick way of dealing with this. There was no difficult patient, just a difficult situation. Blocking out images of my long patient list, I made myself comfortable and started to get to know Leia. After all, there were years of her tumultuous cancer journey to catch up with before I could expect Leia to allow me to walk alongside her the rest of the way.

When we finally emerged from her room, I quickly reassured Ben that this was not the typical length of consultation. It was only a matter of time before she would come back with a bigger crisis and we would be ready—both Leia and the team.

Resident

Strike while the iron's hot. Seize the day. Make hay while the sun shines. So many idioms for the same, important piece of advice: take advantage of what you have, while you can. Each day, as we carried out our ward rounds, I was reminded of this advice. And almost as often, of the times when we failed to heed it.

Leia had returned. A tumor had sprouted in her spine, rendering her unable to walk. She was whisked away for emergency radiotherapy, and although it was effective, she remained essentially bedbound with excruciating hip pain. An X-ray revealed a pathological fracture of her left femur.

Full of fight, Leia worked hard with our physiotherapist to get back on her feet. One afternoon, I sat down with her to find out what drove her to keep going.

“I long to float in the ocean again, to feel saltwater on my skin.”

There was an energy in her eyes, as if by talking about it, she had transported herself there. Surely we could help her achieve this goal, a seemingly simple task in a city surrounded by water?

I relayed this to Cindy, and almost immediately I could see her mulling ideas over in her head. The next day Cindy showed me a photograph of what looked to be an off-road wheelchair sitting on the side of the beach. We had a way to fulfil Leia's wishes.

Registrar

Sometimes we do too much, sometimes too little. What would you rather regret?

Leia's amazing willpower meant she achieved physiotherapy goals within a fraction of the expected time. This fuelled hope for more mobility and independence. A hope that was impossibly infectious. We helped Leia overcome opioid phobia, enabling her to sit up for hours at a time. This was her window of opportunity.

We threw the beach challenge to our volunteer coordinator, who very quickly worked out the logistics of the trip on a beach wheelchair, complete with a set of friendly lifeguards! After wading through wave after wave of administrative red tape, we were ready. There were some who questioned our persistence; was this above and beyond our call of duty? Was this the expected care for all patients?

Not to be denied, we waited for the day expectantly. But it rained.

And it rained.

A couple of weeks went by, and Leia's progress hit a ceiling. It became too cold and wet for a beach trip, but she did manage shorter outings with her family, thoroughly enjoying those. Soon, she had more bad days than good and became increasingly bed bound from worsening lethargy. Her breathing became more labored as her right lung accumulated with malignant fluid.

The volunteers shifted tact and the room gradually filled with posters and picture collages of her beloved beaches. She mindfully transported herself to that special place while listening to recordings of the sea. It was utterly heart breaking.

We missed the boat. Did we do too little?

Resident

In life, each iris unique, in death, all eyes the same. Clouds creep across the cornea, pupils push at the iris. Gone is the spark, the torch that seems to light the soul.

It was my last week with the palliative care team. Leia, despite all her protestations, despite her determination and grit, had weakened. Her body, after seven years of fighting, was giving up. Cindy had traveled interstate to attend a conference. She knew Leia wouldn't be there when she got back.

One morning, I walked into her room and realized this would be her last day. Her family and friends arrived and were with her as she slowly slipped from this world. Asked to certify her death, it was again her eyes that struck me. Where once they smiled, laughed, accused, and enquired, they now lay lifeless, dull. Leia was gone.

I know Leia's death affected Cindy. I can't say why or how Leia had worked her way into Cindy's heart. Perhaps that very first meeting laid the foundations of a relationship based on mutual respect. Perhaps in Leia, Cindy saw elements of herself. Perhaps it was the similar age of patient and doctor, perhaps the reminder of her mortality.

Cindy taught me that it is okay to feel. That provided you recognize your attachment, provided you don't let this attachment affect your ability to manage your patient, nor get in the way of the care of other patients, that feeling is good. In a job where we often try to push our emotions away, feeling reconnects us with our patients, reminding us that we are human.

Registrar

I remember my mentors who taught me it was okay to cry—the intensivist who wept with the mother whose teenage son was brain dead, the bereavement counselor who allowed her tears to flow freely as the team debriefed; those professionals who embraced their difficult roles by wholly connecting with the patient and effectively detaching at the end of the day. Somehow.

But the whispers were loud. It was no secret among the after-hours residents that this was “Cindy's special patient,” much to my initial amusement and later on, alarm. Had I failed to detach?

It wasn't her age, I think, but rather the façade of bravery and unwavering determination to live, thinly veiling her insecurity and fear of death that drew me. Leia's relentless pursuit of life was incongruent with a body that was fading away. Leia was not in denial, she was coping. I admired her, I respected her.

I have always considered it my role as a registrar to support new residents cope with the proximity to death and dying. However, Leia surprised me by inciting emotions that forced me to reflect and be mindful of my own professional conduct.

The journey alongside a dying patient is humbling and often provides a vast opportunity for growth. We owe these lessons to Leia, a patient whose fervour and passion for life remain with us, and all those she encountered.