Palliative. End of life. Dying. How do we care for patients at this stage of illness?
Palliative care is still a new and burgeoning field within medicine. There are many reasons for this. For one, from the perspective of medical culture, the value of medical care primarily lies in curative intent — physicians insisting on “fixing” the problem. Thus, healing is reduced to curing.
But the reality is that there are many conditions or clinical situations where we cannot reverse or fix a patient’s state. There are many tides of a disease that we simply cannot resist. In that context, it is not surprising to see that palliative care often elicits great discomfort in physicians.
I was recently humbled with such an experience. I spent two weeks caring for an older woman who came to us for fluid accumulations in her lungs (pleural effusions) and a history of multiple cancers. Initially, we thought the fluid was secondary to an infection in her lungs, but after further investigation, all signs were obviously pointing to the onset of a new lung cancer.
The diagnosis of cancer is never easy to disclose, but this case was rendered all the more complex by her multiple comorbidities and present social situation. She had come to us from an assisted living facility and suffered from a massive stroke during her stay in the hospital. Due to the significant decline in her health and the imminent possibility of losing her capacity to consent, her children had to fly in from a Mediterranean country in order to support her in decision-making. To the surprise of her family and her medical team, the patient wanted to pursue curative medical treatment in lieu of palliative care.
I struggled and cringed as I watched my preceptor, as well as the other consulting services skirt around the topic of her prognosis and her cancer diagnosis. Her adult children practically begged us to name the elephant in the room — she had a new, advanced lung cancer, and with this added to her other medical conditions, she was not going to survive beyond a few weeks or maybe at most months. When the family asked during rounds, “Can someone please explicitly tell her she has a new cancer? I don’t think anyone has done this,” they were right. Everyone wanted to defer to the specialists, but she was too clinically unstable to be seen at the Cross Cancer Institute. With each consultation, the physicians recoiled in cowardice from addressing the obvious: she was not a candidate for medical management because she was actively dying and would not survive the procedure, nor would she derive any benefit from the intervention. Instead, with each consultation, the conclusion was to consult yet another service.
I felt ashamed and powerless, not wanting to overstep my authority as a student but knowing I was failing to advocate for my patient and her right to die with dignity. After more than two days of what felt like stalling and avoiding, I found the family in the room while I was on call for the night. They informed me that no one had come to speak with them that afternoon to update them on her prognosis. I decided it was time to finally address the elephant.
Despite entering into the conversation composed, I could not help but hear my voice crack, feel my eyes well and tears trickle down my cheeks. I was overwhelmed with shame as I apologized for how the communication had been handled. As I shared honest tears with the family, relief washed over me as they thanked me. I watched my patient’s solemn expression indicating she had finally received her right: the opportunity to come to terms with her illness.
There is no greater privilege than experiencing the journey with a patient and their family as they submit to the tidal waves of palliative care. While I’ve drawn countless lessons from this experience, above all I pray to always give my future patients honesty and dignity in dying. For some patients, despite our clinical prowess, this may be the only true form of healing we have to offer them.
Contributing Writer
University of Alberta
Sarah Hanafi is a medical student at the University of Alberta with a vision for medicine that extends beyond the doctor’s office: she works upstream and across sectors to create healthier communities and address systemic challenges to wellbeing. Her work straddles the spheres of social services, health policy, political advocacy, community organizing, as well as research. Sarah has a vision for more connected and healthier communities - one that is inspired by a genuine passion for serving others.
