Palliative care through the lens of a medical student

Life is continual creation, ie, the formation of new, higher forms … When existing forms are destroyed, this only means a new form is taking shape, invisible to us. We see what is outside us, but we don't see what is within us … A caterpillar sees itself shrivel up, but doesn't see the butterfly which flies out of it.1

I was first introduced to death and the concept of dying at an early age. It was not a family member or an older neighbour, but a 5‐year‐old fellow warrior, battling Ewing sarcoma in the bed beside mine. For almost a year, in a paediatric oncology ward full of children and parents, time seemed to stand still. Life was suddenly uncertain. For some of us, death was just around the corner.

Looking back on this early period of my life, I realise that this is where it all started — death, the loss of two close friends. I was curious, intrigued. How did they feel at the end of their lives? Were they comfortable? Were they afraid? Did they feel alone? In my final year of medical school, I applied for several elective rotations, one of which was palliative care. It came as a surprise to many of my peers that I would want to spend 5 weeks on a rotation surrounded by dying patients. To me, however, it was a chance to reacquaint myself with death and all it encompasses, but this time through the lens of a medical student.

Palliative care is a specialty that medical students only touch on briefly during medical school. It is true that medical programs vary around the country, but in my case, we had only been given one teaching session on the subject. As interested and absorbed as I was at the time, it is now but a blur. I do recall being taught about breaking bad news and instructed not to use jargon when delivering sensitive information. However, never had we really talked about death or discussed the best way to approach and care for patients at the end of their life. Today, I cannot help but ask myself “why not?”. After all, it was inevitable that we would be seeing patients die under our care. I began my 5‐week rotation with mixed emotions. On the one hand, I felt deeply humbled to be given this opportunity and eager to learn from experienced physicians. On the other, I felt a little apprehensive — what would it feel like to face death on a daily basis?

From the beginning, the importance of holistic care was made apparent. Although we had been taught to see a patient as more than just an illness, it was on this rotation that I truly understood what caring for a patient's physical, psychological, social and spiritual needs meant, and how it was the sum of these domains that made up the patient in front of us. Over the following weeks, I witnessed how the palliative team approached each of these to ensure comfort through end‐of‐life care.

Consultations usually began with addressing the patient's physical state. Most importantly, were they in any pain? How were their nights and quality of sleep? Had their bowels opened this morning? I learnt about the myriad of symptoms seen in palliative care: delirium, constipation, nausea, vomiting, itch, respiratory secretions, pain, and how to manage these symptoms. I was introduced to the different scales used in this specialty, and how these assisted clinicians in understanding a patient's current condition, as well as the phases in their disease progression: stable, deteriorating and terminal. The foresight needed by palliative care physicians to predict potential and future complications of patients was emphasised on many occasions. For example, understanding how oesophageal cancer may affect a patient's respiratory secretions in the end of life, or how colonic metastases may lead to a serious gastrointestinal obstruction.

Moving on to the patient's state of mind, I was reminded of the significance in asking “how is this illness affecting you and your life?” — a question that we were taught to ask in medical school and, yet, fail to do so most of the time. Dying patients are not dead. Just like anyone else, they can still experience the little joys of life. Whether it be reading today's paper, having an old friend visit, or walking to the nurses’ station unaided, these are vital for emotional wellbeing, regardless of whether you have a week or years left ahead of you. I saw the sheer pleasure these events brought to the patients and their family members. I made a note to myself not to fear or shy away from dying patients, for we are not that different.

The social aspects in palliative care are numerous. For the patient, this involves ensuring the completion of important documents such as advance personal plans, goals of care, and having a substitute decision maker in place, just in case. How to approach these conversations sensitively with patients and their families is an art in itself. However, palliative care is not only about supporting and caring for the patient but also for their family members. Administrative paperwork, from certificates of absence from work while they share their loved ones’ last moments to death certificates, is part of the job. It is also about making sure family members feel supported once a patient is diagnosed, discharged or has died.

My time at the hospice exposed me to the range of questions that must be asked within a team. Where do patients go from here? Do they have days, weeks or months ahead? Is it realistic for them to die at home? Do they have the equipment and support needed? Can they access care in the community? These are all important factors to consider as not all patients want to die at hospital or at a hospice. Palliative care is about respecting these wishes and ensuring the patient and their family are safe and supported throughout their journey.

The fourth and final domain focuses on addressing spirituality and the patient's beliefs — a personal and subjective experience. With only 5 weeks’ experience, I feel I barely scratched the surface of the multiple layers within this domain. What has brought meaning, joy, hope and love to their lives? What does death mean to them? Do they wish to honour any religious traditions before their death? Palliative care is about opening this line of discussion and bringing about a sense of acceptance. Acceptance of the life they lived. Acceptance of the fear that may accompany the unknown of death. Acceptance that nature will take its course. It is about helping patients attain peace with their mortality.

While observing the team apply this holistic approach, I watched in awe their communication with patients and their families — the words they chose, the tone they used, the body language they expressed. As medical students, we are taught about the importance of effective communication, but just how powerful it can be was only made clear to me during this rotation. Difficult questions, such as how long is there left, were never evaded, but answered bravely with honesty and respect. I also noticed that voices of team members would change once we entered a patient's room. Their words, spoken in softer tones and a slower pace, would peacefully wash over the patients, awake or asleep. There was no rush, no time constraints. Every patient was given the time and attention they needed.

Including family in these moments was equally as precious. Hearing is most likely the last sense to go before dying and reminding family of this and the importance in talking to their loved one, even when they seem so far away, was often reiterated. I noticed other more subtle touches throughout the consultations, such as body language. Whether it be sitting on the patient's bed or kneeling on the ground to be at eye level, it all promoted a sense of compassion, open conversation, and comfort. In these settings, there was no hierarchy. Everyone in the room was on equal grounds, whether doctor, nurse, family member or the patient themself.

At the end of my rotation, I was asked to reflect on my time in palliative care and what I would take with me moving forward as a junior doctor. I could not help but think back to how I felt coming on to this rotation, not really knowing what lay ahead. I was left with no sense of unease. On the contrary, I had seen dying patients daily, and felt both humbled and honoured to witness and be present in their final moments. I had reacquainted myself with death and accepted that it is simply a part of life's journey. In most patients I met, there seemed to be an air of ease and peacefulness, which I believe was nurtured by the palliative care team. I realised it took a very special group of people working hand in hand to achieve the level of holistic care needed and deserved by these patients at the end of their lives and to foster a comfortable death.

I think back to my forever young friends on the paediatric oncology ward and can only hope that they also received the care, attention and support that I witnessed during my time in palliative care.