“I am sorry to have ruined your morning,” she says, clasping my hand, both of us tearful.
I spot her bracelets, beaded ones spelling the names of her kids. After wearing them for a few days, she slid them off only to cause the kids mock offence – they were meant as “forever” bracelets.
She knows that I, too, have a bracelet story. Mine is a $2 “pearls and diamond” piece from the Mother’s Day stall bought last decade that still drips with love. I wear it to the most significant events in my life.
The problem with having dying patients of the same age as you is that your seemingly parallel lives are prone to being torn asunder.
She is a professional woman whose children need the same reminders as mine: do your homework; clothes off the floor; the dishwasher doesn’t unload itself. We could compare endless notes about our messy, imperfect children, but this would be to digress from the real reason she sees me: to treat a cancer that was curable, then incurable – and now relentlessly terminal.
She is exhausted by her illness and a contested divorce where her main goal was to secure a house for her children. “I am done,” she announces one day, reflecting that the constant pain, weight loss, and inexorable fatigue make her want to spend her remaining days in the company of her children.
To answer such weighty considerations with a simple “I agree” seems like an injustice. Yet it is all the validation needed.
For someone who could be excused for being embittered by fate, she is all grace. She asks to die at home and be free of pain. I reassure her, almost automatically, that is what palliative care is for.
To anticipate difficult conversations, oncologists are taught to ask themselves the “surprise question”: if my patient were to die in the next year, would I be surprised? I think that I would not be surprised if she died within the next month, but am unprepared for what happens next.
Only a few days later, she is unreachable. Frantically, we locate her daughter. Between sobs, she relates that her mother took a sudden downturn overnight. The children called palliative care and were advised that the service did not make nocturnal home visits; they were directed to call an ambulance. Paramedics finally arrived, administered one dose of morphine, and then departed, unable to leave behind more morphine nor teach the kids how to administer it.
Predictably, the morphine wore out and they watched over their mother in terminal distress all night. It’s now mid-morning and there is still no sign of palliative care.
I hear difficult stories every day, but this one breaks me. My throat constricting with dismay, I comfort the daughter but can’t talk to my patient, who is barely conscious. It feels just criminal to hang up the phone and hope for the best, but my other patients are waiting. Later that afternoon, when our nurse emails to say the patient was commenced on a morphine infusion, my heart is still heavy.
At dusk, I receive a call from the palliative care physician, proving that there are times when no one needs to point out our failings – our conscience tells us. She explains that the palliative care service was never funded for overnight care, but the family didn’t know that.
The patient did not have a stock of “catastrophic medications”, because palliative care had not been able to reach the GP to issue the scripts, but the family didn’t know that either. She acknowledges these explanations are cold comfort and reassures me that once she realised the full extent of the situation, she did everything possible to manage it. This is a testament to the professionalism of palliative care workers.
But I can’t stop thinking about two missed opportunities. Knowing there was an acute crisis, why had the service not followed up by phone overnight? An experienced person could have advised the children that it was OK to call the paramedics back for more morphine. Second, why had a palliative care professional not shown up at the patient’s door at the first sign of morning instead of waiting until midday? The doctor promises to raise this with the team.
I tell her that I understand the resource problem but, for now, my sympathy belongs with the children who feel like my children. No parent wants a child to experience the kind of trauma that leaves lifelong scars.
Most patients wish to die at home but end up dying in an acute hospital, receiving fragmented care, which is disruptive, prohibitively expensive and mind-bogglingly complicated. Honouring their wish would deliver both patient-centred care and societal gains.
But end-of-life care at home isn’t straightforward: it requires committed palliative care, robust coordination with GPs and specialists, and a seamless system that serves even the most elderly, vulnerable and marginalised patients.
Anyone who has grappled with hiring home equipment, creating a roster, injecting drugs and managing fluctuating needs with little assistance – while also processing the grief and loneliness of the experience – knows why many caregivers guiltily say “no thanks”.
The truth is: dying well at home costs money. We must fund palliative care better.
Appropriately palliated, my patient dies within hours. Thankfully, her children’s very final memory of their mother will be the picture they send me: asleep, her hand in theirs, those beaded bracelets in full view.
But I can’t shake the feeling of having let down a patient who believed me when I reassured her of a peaceful death at home, so much so that she left me an invitation to a celebration of her life.
I want to tell her how sorry I am that things didn’t work out the way we had pictured.
All I can do is write this column in her memory and hope that next time, we do better.
Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A Better Death