I had a lot of time to think and reflect while I sat by my father’s bedside in those last few days.
His decline was quick and relentless. On Wednesday we were preparing for another shot at chemotherapy. On Thursday he was taken by ambulance to the emergency department with pneumonia. On Friday we were summoned to a family meeting to discuss arrangements for end of life care. On Saturday he commenced intravenous therapy for feeding and medication. On Sunday we were called to the hospital at 5.30am when he took a turn for the worse and the decision was made to cease all active treatment. And on Monday, after being unresponsive all day, he finally lost his fight for life.
Our experience of palliative care was therefore brief but I still observed and learned many things during those final days.
After weeks of constant observations, tests, appointments and probing & prodding, when the decision is finally made to cease active treatment, you are suddenly left very much alone. You are not neglected, not at all, but the change in attention is stark and immediate.
There are no longer the hourly interruptions to gauge heart rate, pulse, blood pressure and oxygen saturation levels. Once the decision is made to stop antibiotics, fluids and feeding, there really is no need to continue to observe and record these fluctuations as they are all expected to decline and cease naturally, anyway.
You are no longer regularly visited by allied health professionals, dedicated to readying a patient for the return home. Without any expectation of emerging from hospital and returning home, their visits are confined instead to a passing visit to check on patient and family welfare. They are needed more urgently by others now.
The food trolley and TV rental cart usually roll on by as well – they know there is no point in stopping now we are nearing the end of the journey. They have visited enough times already to know what the answer will inevitably be and silently understand there will be no further patronage from our room.
The patient care board, normally awash with instructions, also becomes bare, no longer updated or consulted. With the ceasing of active treatments, the board suddenly becomes obsolete – there is no plan to follow other than to let nature take it’s course. No need now to note every action or instruction.
As a result of these changes, the room becomes quieter and more peaceful. Confining cords and tubing are removed. The noisy machines fall silent. Family, not staff, become the dominant force and re-emerge as experts in care. The focus turns from the invasive – treatments and therapies to cure – to the more caring – embracing strategies to make the patient as comfortable as possible instead.
The very “hospital-ness” of the room is stripped away until all that’s left is a bed, chairs and the personal possessions that have accumulated over the length of their stay. A bunch of flowers in a makeshift vase. A pile of newspapers growing on the side table. Slippers left carelessly on the floor. A warm flannelette jacket thrown across the back of the comfiest chair in the room.
The sounds of beeps and alarms are traded for the sound of breathing – sometimes calm, sometimes laboured. The muffled sounds of the constant activity beyond the walls of the room filter through and provide a brief respite from the heavy silence within. They remind you there is a world outside, going about its business and looking to the future.
In stark contrast, the silence in the room is heavy with unspoken words. Weighed down by the reality of what’s to come. Consumed by watching, waiting and worrying.
After all the noise and the activity and the monitoring of the hospital ward, being suddenly left alone to wait for the inevitable is disconcerting. And lonely. And utterly devastating.
This is the truth of palliative care.