“I want to live my life to the fullest,” my patient insists, almost daring me to suggest differently. Allowing for cataract and knee surgery, he has remarkably avoided hospitalisation for the last 80 years. He relishes a round of golf and takes pride in his good memory.
An annoying cough led to a CT scan. His lungs are fine, but the images catch the upper abdomen where lies a cancer. It has probably been there for some time, but the discovery causes consternation, especially when it is deemed inoperable.
What does he want, I ask the surgeon who regards me with bemusement.
“Doesn’t everyone just want to live longer?”
I explain to the patient and his family that while the cancer can be treated with chemotherapy, the lack of symptoms means he will not feel any better but will almost certainly experience side-effects. He asks if chemotherapy will help him live longer. If it works, maybe by a few months, I say. He frowns and I wonder if this will sway his decision. It does not.
The treatment starts well but soon he is too tired to shop for groceries with his wife. Persistent mild nausea puts an end to coffee with friends and the steroids ruin his sleep. Still, he perseveres. Concerned, I reduce the dose and send him to our nurse, hoping another perspective might help. Either she will alleviate my fears, or she will impress upon him the harm he could run into. She does both, telling me that I am right to worry and his autonomy matters.
His needs grow. He spends hours in emergency with not serious but troublesome symptoms and is occasionally hospitalised. Each time a doctor sees him, there is the inevitable procession of tests. His scarred veins hate the many tries required to get blood to ensure that his anaemia does not require transfusion. Every transfusion costs him a day of rest.
One Monday, I pass him in the corridor at 9am. He is waiting for a scan that has been deferred until midday due to an emergency. At 3pm, he is waiting for another test. At five, he is still there, slumped in a chair, waiting for volunteer transport to begin the peak hour journey home. He spends the rest of the week in bed overcoming his exhaustion.
Compared with the man I first met, he moves slowly and looks haggard. I can’t help thinking that all the time spent in the hospital system hasn’t been good for his spirits or longevity. Each hospitalisation multiplies the risk of a serious complication and every Covid outbreak leads to exposed patients being isolated from all but essential interactions.
Chemotherapy for advanced cancer typically extends life in the order of a few months. The figures we quote to patients are drawn from clinical trials which exclude a lot of “real-world” patients such as those with unstable diabetes, end-stage lung disease, severe heart disease or cognitive impairment, the presence of even one of which affects prognosis.
Oncologists are practised at discussing treatment toxicity. Many symptoms can now be counteracted by better drugs such that the tale of my old boss having to sedate chemotherapy patients to get them through treatment is thankfully consigned to history, but as every patient knows, treatment toxicity is real and life-altering.
The concept of financial toxicity has only recently entered our vocabulary. From America to Asia, cancer care can prove financially devastating.
A study assessing more than 70,000 cancer patients in Australia’s universal healthcare system found that a tenth of rural Australians experienced “catastrophic” spending and a sobering one-third of families who had a child die from cancer fell below the poverty line. In what may surprise some, private health insurance was a consistent predictor of higher out-of-pocket costs, with insured patients paying as much as double compared with the uninsured.
But as I watch my patient decline, the phrase that keeps nagging me is “time toxicity”, recently defined in a thoughtful commentary as “time spent in coordinating care and in frequent visits to a healthcare facility (including travel and wait times), seeking urgent/emergent care for side-effects, hospitalisation, and follow-up tests”.
The oncologists write that we do a poor job of acknowledging and weighing the impact of time toxicity, which is admittedly not easy to measure objectively and reliably.
But the very diagnosis of a life-limiting illness underlines the importance of knowing not only how much time is left but also how and where it will be spent.
In one example, the survival gain from chemotherapy is 27 days, but the estimated time spent on facility visits, infusions, investigations, travel and deferred treatment is 30 days. In other words, the survival benefit is dwarfed by the logistics.
In another example, chemotherapy provides nine months of survival with three of those spent away from home, while the option of no chemotherapy offers seven-month survival but time mostly spent at home. Presented with such estimates, I am confident that there would be many who will still take a chance on treatment, reflecting the tenacity of hope in a cancer clinic. But equally, there will be those who would rethink their desires and goals and choose the remote fishing expedition or a rambunctious family reunion over time spent in a series of waiting rooms.
To be clear, time toxicity may be less pertinent when treatments offer a significant survival benefit or align with the patient’s goals. No choice is inherently wrong provided it is made with sufficient information.
Finally fed up, the patient stops chemotherapy shortly before dying. His daughter recollects that his time on therapy contained a few “shocking” weeks, many “just OK” weeks, and no “fully good” ones. The family kept hoping for better days but were unprepared for the sheer demand on their time to the extent that she left an executive job to care for her elderly parents.
Left to ponder the opportunity cost for everyone involved, I imagine a day when patients will be spared the lament of time toxicity because oncologists like me will have embraced it as a plank of our counsel. It won’t be the easiest thing to talk about but by doing so, we will be serving the best interest of our patients.
