Abstract
The patient's reputation preceded her. Janice, the team's palliative nurse clinician, looked up from the referral sheet with wide eyes, “Eliana is in.” The local community health unit knew her well. She quietly scoffed at the idea of outside help and support. She lived in a little flat with her husband, Nicholaos, in a quiet part of town. Eliana woke up every morning knowing exactly what was to be done and who was to be seen that day. Home care nurses called weekly and the conversation was always the same.
“I am not well, but I do not want you to come. Please call me again in a week”
This waltz continued for weeks.
***
Eliana is a 69-year-old woman. She presides over her family with stoic and enduring attention. Despite arriving from Greece to Canada in her early 20s, Eliana speaks almost exclusively in her mother tongue and her English carries a slow and deliberate cadence that demands your fullest attention. Despite the diagnosis of squamous cell carcinoma in June of 2014, Eliana continues to watch over her family. However, her body is changing and there is nothing she can do about it.
***
Dr. Scott could best be described as knowledge in perpetual motion. As the team's palliative care physician in the hospital and community, she was constantly juggling multiple patients, meetings, and responsibilities. She juggled well. She scrolled through Eliana's lung imaging; the intensity from the screen reflected in her glasses. Dr. Scott stopped.
Regardless of how they are imaged, normal lungs are best characterized by a darkness that is the result of the penetration of photons through the nothingness of air. On the CT scan, the lungs appear like great empty amphoras scaffolded on thin wiry frames of vessels and collagen.
The image on the screen was far from normal. The center of Eliana's right lung glowed strangely from a thick and cavernous growth.
Fixated on the image, she asked me, “How much time do you think she has?”
***
I haphazardly make my way through the hospital's emergency department. The emergency is buzzing with the sick and the angry. A nurse tells me that Eliana is in a pseudo unit carved out of a corner of the emergency department. I find her at the end of a long row of hospital beds. The beds have been separated by thin, green curtains. She is sleeping with several layers of blankets on her. With my first step forward, she opens her eyes softly.
“I have just sent everyone away so that I can rest. Can you come back later?”
Eliana is an island.
***
Eliana sat up from the blankets she was wrapped in to reveal a surprisingly robust frame. Her broad shoulders turned toward Nicholaos, who has been quietly perched in a corner. He was the unassuming but equally, “significant other” in Eliana's life. He spoke little. With Eliana, he didn't need to.
It started with a spot of blood on a tissue after one of her regular coughing fits. A harbinger of a wave of fatigue and anorexia that would sweep through her body. Eliana, once busy and vigorous, was forced to watch Nicholaos shoulder the weight of activities she took so much pride in: cleaning house, preparing family meals, chasing after her grandchild. She was robbed of life's simplest dignities: the ability to rise from a chair without another's assistance.
She looked me in the eye; her lightless golden eyes glimmered from tears that suddenly streamed down her cheeks. She wailed. The mountains that were her shoulders collapsed around her. Nicholaos, suddenly large, draped around her.
“You need to help me.”
***
I am sitting in DS1, another part of the hospital that has capitulated under the unrelenting pressure for inpatient real estate. It is less frenetic than the unit in emergency, but utilizes the same architectural theory that curtains can function as walls. I settle in with Eliana, who is comfortably resting in a wheelchair next to her hospital bed.
“I need to know,” she says, looking into the open space of DS1, “I need to know what is happening. And I am preparing myself for the fear that will come with this news.”
Eliana is a prisoner of the hospital for a little more than a week now. Between the hospitalist, the geriatric psychiatry fellow and myself, we have begun to make strides with Eliana.
She welcomes me with the warmest of smiles and introduces me to her family. Our conversations begin to stretch like an afternoon. We speak intimately. We speak with love about her children. We briefly explore God and what She has in store for Eliana. We chastise Nicholaos for doting. We chat at length about her symptoms. Her coughing fits and breathing are now better with days of coaxing into regular hydromorphone use. Her mood is lighter, and crying fits come at longer intervals. This I attribute to the very recent initiation of mirtazapine, pharmacokinetics be damned. Clinically, she is better but this new freedom of mind has left her swimming in other thoughts and ideas.
She dreams of returning to Greece. After decades of tending her family, she contemplates leaving that all behind to be home. A magnetism that is rising to the surface in the face of her uncertain mortality. But she loves her children. And Nicholaos.
What matters more? Being where you belong or being with whom you belong?
She turns to me again and says with a softness and warmth, “How much time do you think I have?”
***
The multidisciplinary team meeting has disintegrated into a solo affair.
The DS1 charge nurse looked disapprovingly as I rambled on about how my staff, the hospitalist, the clinical nurse, and other assorted important individuals had additional significant and critical tasks that arose suddenly and unexpectedly that prevented them from taking part in this decisive discharge meeting with the patient's family.
I told them they send their regards.
Eliana had no disillusions about her illness. She was critically aware that her body was failing. She articulated goals that were both clear and abstract; near and far. There was a grandchild coming in September that she had to meet. She held fleeting thoughts of traveling home. She desperately wanted to leave the confines of the hospital and return to her flat. She nodded intuitively as I explained the functional decline that accompanied a worsening cancer progression. Eliana grieved losing the independent person she once was. She wanted to work on regaining some of the dignity and grace she valued so much. Eliana shared her fears openly. She loved her family dearly. She discussed her worry for Nicholaos.
She looked at me seeking a prognosis. I advised her that we had never been very good at hitting the bull's eye. That my imperfect trajectory was further deviant from any possible truth without her oncologist's input. That sometimes patients don't want all the details and sometimes preferred that information to be shared with their children. She smiled bravely. She reassured me that she needed and wanted to know. My voice cracked under the weight of the information I shared.
“My best estimate at this time is that you have weeks to many weeks, Eliana.”
I hadn't given that information enough time to sit. I dove into my caveat: I am worried with how her cancer had wrapped around vital blood vessels in her chest and her next coughing fit may lead to significant bleeding. That this event would likely be swift and terminal. Eliana was explicit that she would not want to return to hospital for interventions if this were to happen.
Our conversation strayed from the script I had carefully laid out in my mind. Eliana returned to her breathing as a topic of conversation—a defense she used when the dialogue had left her too exposed. Too open. We spoke at length about the hydromorphone. With her hesitation for any further opioid titration, we settled with her family on a trial of fans and humidifiers upon her discharge. I focused on the need for Eliana to accept nursing care into her home once she leaves.
“You have troubled my family to arrange this meeting this morning and the nurses here…they do nothing for me. So why should I allow them into my home?”
As the bridges we've spent weeks building swayed, I mentioned the importance of having someone to monitor her health status. To make sure the breathing continued to be well controlled. That her mood remained stable. So that I knew when I needed to come in and see her at home. To help her achieve the best quality with whatever time she had left.
Her face softened. We agreed that she was to continue on the low-dose hydromorphone regularly as management of her cough and shortness of breath. She agreed to nursing visits twice a week. I promised to see her next week when she had settled at home to ensure that she was comfortable. She took my hand in hers, big and rugged. Her eyes welled up. Differently than before. She thanked me for all the work I'd done. For her and her family.
Eliana was an island.