“Every time I talk to you, I feel more distressed.”
Tears stream down the patient’s face as she claps her palms over both ears to shut me out.
I am stunned to my core by this completely unexpected office version of a devastating domestic diatribe from which you wonder how you will recover. In my small office, the distance between us feels suddenly uncrossable.
This is our umpteenth meeting. When she was first diagnosed with cancer, she faced a brutal series of treatments. Chemotherapy felled her. Radiation burnt her. The constant needle pricks coloured her skin black and blue. She hated the rumbling noise of the scanner. Yet she persevered because a cure was within reach.
The unfortunate problem with many cancers, of course, is that when “everything is over” it is not always over. Being diagnosed in the first half of one’s life leaves the second half to a recurrence. This is what happens some years later during routine surveillance.
Bracing myself, I prepare her for the bad news. I acknowledge her past difficulties to show her how well I recall them. Then I say that while the news is disappointing, this cancer, too, is curable – and thanks to new developments, the treatment will be less onerous. Like many patients, all she hears is that she has cancer. Again.
When she declares this can’t be possible, I respond with a respectful silence, knowing that most patients get past the early shock and ask what next. She walks out, perplexed but not ready to let me in.
The next series of consults prove trying for us both. She expresses more surprise than dismay, more curiosity than urgency. My consternation grows but it never crosses my mind that she will refuse curative treatment.
I believe in patient autonomy and am comfortable with the notion of patients refusing treatment where survival gain is minimal or bought at the cost of “time toxicity”, where patients spend the end phase of life shuttling between infusion centres and tests.
In the geriatric oncology service I run, much of my time is spent reassuring my oldest cancer patients that less is more. But this patient is in her 40s with a curable illness, so the usual rules don’t apply.
Today, she has arrived hours early so she can “dispense” with me before collecting her children from school. I ask her how she is, and she says fine. I fret it’s not for long.
I ask when she will have treatment and she says never. My reaction must be painted across my face. When I explore her decision, she says that her greatest wish is to be around for her children. She wants to work, pay the mortgage and support her husband in raising a family. Listening to her, I find her goal poignant, admirable and given the biology of her cancer, unattainable without treatment.
Doctors are routinely taught, even hectored, to respect patient choice but given the glaring discordance between what she wishes and what I know will happen, I feel obliged to name my fear.
“But don’t you see that the way to be around for your children is to have some treatment? How will you earn an income if you can’t work? How will you help your husband if you are unwell?”
This is when she bursts into tears, accusing me of multiplying her distress. But even as she castigates me, I can smell her desperation as she can smell mine. Try as we might, we can’t find a compromise. Watching her leave the room, I am flooded with the most abject feeling of loss.
She subsequently forgoes appointments and declines calls and texts but when I want to discharge her from my clinic, a nurse gently suggests I leave the door open. Enter another wave of guilt and self-doubt at the missed opportunity for cure. The inevitable happens – she presents with an emergency. Hope raises its head: I am thrilled when she returns to see me. Our conversation is calm but my appeal is denied. Again, she forgoes a chance of prolonging survival.
Other emergencies follow. Then, she dies. All this I learn through morsels of third-party information, an unsettling thing when your entire job is in the “helping industry”.
The oncologist’s tonic is closure. Without it, the ghost of one event always threatens to intrude into the next – and at least I think it impacts patient care. Every few months, I try to call her husband.
Much time passes before we connect. From his tone, it’s clear I am not the only one searching for closure. There is a workplace grieving initiative, but he knows that the journey of grief is largely undertaken alone, in one’s own time.
Eventually we get to a point where I hope for the great reveal. Why did my patient refuse curative treatment?
“She believed that her previous suffering would be rewarded by a lifetime cure.”
He goes on to explain her unshakeable belief that she had done enough the first time round and it did not make sense to have cancer again. Her will to shield her family was so strong it overtook her fears about herself. The longer she deferred treatment, the more she was convinced it was unnecessary. We talk some more about her thoughts and beliefs we will never know for sure. Finally, he consoles me not to feel badly because I did nothing wrong.
My vindication is tinged with humility. All this time, I had attributed her reluctance to a case of wild alternative therapies, mistrust of hospitals and misgivings about my care. Now I can’t help wondering whether things could have been different had she trusted me enough to divulge her belief.
Patients who refuse curative treatment often do so based on their values while their flummoxed doctors act from a place of rationalism.
Could I have met her expectation of some divine benediction with my grounding in science? How would I have pitted her hope against my chemo? I like to think that I would have listened and negotiated but I bet the reason she didn’t return is because she feared judgment.
In conventional medicine, the premature loss of a cancer patient marks a missed opportunity for a cure, something that is anathema to an oncologist. But I can’t help thinking that in this instance, the greatest loss was the premature loss of understanding.