By Elizabeth Xu Yanning
My first memory of a physician was that of my father, called in the middle of the day to certify a death. He operated a small general practice clinic at the bottom of an apartment block and I was working at his reception during my holidays. Although almost a decade ago by now, I clearly remember following his kyphotic back, confidently maneuvering through the labyrinth of housing developments with his battered black leather call bag.
We emerged from the clunky elevator to a sea of footwear surrounding the door of the apartment. A large party greeted us with warmth and snacks, almost like the Lunar New Year with a grim purpose. He lay waxen and emancipated, mouth agape in his bed, surrounded by three generations of offspring. I stood to the side dumbly, just outside the bubble of grief around the bed as my father did the necessary flicks, pulls and swings. Paperwork completed and family members briefed, we left.
Truth be told, this encounter only came to mind during my final year of medical school, in my Aged Care rotation in the sleepy foothills of the Melbourne suburbs. There I met 99-year-old Margaret*, resiliently drowning from the fluid in her lungs from her worn out heart. 86-year-old Jörg* who had had a fall, but grew a dangerous bacteria in his blood just before returning home. 75-year-old Lynn*, who was brought in vomiting faecal matter from a tumour mushrooming into her bowel lumen.
The solution to their problems could have been straightforward: diuretics, antibiotics, and naso-gastric tube or surgery respectively. However, none of these medical interventions were performed. Instead, in a direct violation to my medical schooled desire to treat, the team and their families opted for comfort care and let them slip slowly off into the night by death or to the Palliative Care unit.
There was no saving of lives, no normalization of vitals, no utilization of national standard management pathways. Was this still medicine as I’ve come to learn? The frantic MET call and tubing and masks and mess, often preserving life beyond the misfortune, yet equally often not.
At this point, I recalled my first encounter of patient care with my father. There was an absence of infusion lines and pills, but an abundance of counselling and comfort. This was the practice of medicine when medicine had failed.
All of us will encounter deaths of patients under our care and might wring our hands at our ineptitude. Before we lose hope, there exist three etymologies that offer insight to our profession.
Firstly, the Latin root word for doctor is “docere”, which means “to teach”. Long before the advent of miraculous anti-microbials, analgesia and anaesthetics, the physician’s primary role was to identify, understand and educate the patient on their malady. Their success as a doctor was not based on their ability to heal, but to communicate. Even as junior staff, we have basic medical knowledge that can make a tangible difference. We know the implications of treatment: its purpose, importance and pitfalls. Patients often don’t. Jörg’s bug turned out to be Staphylococcus Aureus, a nasty sticky thing that would have required 4-6 weeks of nauseating antibiotics through a long line in the arm. He refused treatment when we informed him of his options, with full capacity and family consent. For more collaborative and interpretive patient management, we require a shifting of perspective to understand what a patient does not see. It was and still is our core duty to provide good counsel, to aid patients in recognizing and accepting when they are dying. As the ancient Jewish text of Ecclesiastes says.
“There is a time for everything and a season for every activity under the heavens: a time to be born and a time to die.”
We might not have entered a medical career with this sole intention, but eventually all of us will have to guide a patient and their family in recognizing the approaching deadline.
Another derivative is for our patients, or “patiens”, which is Latin for “I am suffering”. Despite the age of remarkable scientific advancements that we live in, we need to recognise that there comes a point where fixing every problem in our patients becomes unfeasible and even inappropriate. Century-old Margaret in refractory pulmonary oedema had such a worn out heart that not even an artificial cardiac pump would have helped. Before her transfer out, the simple medicine she received included pain relief, dyspnea management and a steady supply of crosswords. Surely simple measures such as these are not any less important than cutting edge bioengineering, if the patient benefits. Medical science was made to help the patient, not for the patient to help medical science. The inability to heal is not our failure. This is echoed in Being Mortal, Dr Atul Gawande’s spectacular tribute to dying in the age of medical advancement.
“Medicine’s focus is narrow. Medical professionals concentrate on the repair of health, not sustenance of the soul. “
Palliative care changes this. It recognizes the value in treating the patient, not the disease. The Latin root word “pallium” or “a cloak” reflects its nature, its practice a warm blanket to keep a patient comfortable, gently acknowledging their illness. This care is the responsibility of all doctors: to recognize the need for comfort early and to help patients die as well as possible. Lynn with a bowel obstruction passed on comfortably with the help of muscle relaxants and sedatives, bowels relaxed and quiescent, nausea abated.
However, medical science cannot provide all the information. To understand the price and the prize of medical treatment for the patient, we should understand the patient’s life; their values and their wishes. Medical treatments are only as valuable as how much they leave a patient able to have another precious moment to spend doing or being with what they love. Junior doctors often have the most time on the ward to explore this more deeply with patient and loved ones, passing onto the senior team members. We should never forget the simple power of simply knowing our patient.
As an intern, we will never make a palliative decision alone or purely on medical science. By understanding our patients’ pathology, pain and values, we may guide them to write their life’s epilogue. Let us not forget our own souls, for in our shared humanity, we provide genuinely compassionate care. As we grow in our humble role, we will mature into organizing Advanced Care Planning, leading family meetings and ultimately cessation of treatment. Like my simple old-schooled father liked to quote:
“Cure sometimes, treat often, comfort always.”
*Pseudonym to protect patient confidentiality