Yahoo News How do we explain the staggering inequality when it comes to cancer patients?
”So you’re saying his cancer is less important than mine?”
“Of course not.”
Her exasperation results from my thus far inadequate responses to her questions. At 70, she is relatively fit, but her husband is older and more vulnerable; after 50 years together, she looks out for him with maternal fierceness.
During chemotherapy, she has been grateful for her oncologist’s advice but far more impressed by the cancer nurse who calls her, arranges transport, and keeps her various appointments on track. The nurse helps her distinguish between a minor nuisance and an emergency, and if it weren’t for this blessing, she doesn’t know how she’d navigate the complexities of cancer care. Now that her husband has cancer, she wants him to have the same experience.
Stroking her husband’s hand, she says: “Don’t worry, your nurse will help you like mine does.”
Grimacing, I interrupt, “I’m afraid he won’t have a nurse.”
“Then we’ll just share mine”, she shrugs.
“That won’t work.”
“That’s silly”, she chides me. “I’ll give up my nurse for him.”
Touched by her generosity, I still have to talk her out of the idea. “Your nurse can’t be involved in his care.”
“How ridiculous! Then where is his nurse?”
“There isn’t one.”
“So what do we do if he feels sick?”
I detest myself for saying it. “You try to get help over the phone, but most likely, you come in to emergency.”
“But that would be so frightening.”
My heart melts but I have to be blunt now to shield her from disappointment later.
“Your husband doesn’t have breast cancer; therefore, he cannot use your nurse. Your breast cancer nurse is funded to help breast cancer patients.”
The timely intervention of an expert nurse can make the difference between hope and despair
Her face is a kaleidoscope of emotions – anger and guilt and fear and back to guilt. She has gone quiet, unable to comprehend how her husband, a patient with greater needs, will be worse off than her in navigating the journey ahead.
“Then how do other cancer patients manage?” she finally asks in hushed tones as if to protect her husband.
With great difficulty and sometimes disastrous consequences, I want to tell her but how can I frighten this poor woman any more? How can I describe the patients like her husband who could have been saved costly hospitalisation had there been a nurse to troubleshoot the problems before they grew big? Barely coping with the indignities of her own treatment, she’d think it outrageous that breast cancer patients like her are considered “fortunate” by other cancer patients.
I have never met anyone who begrudges the help available to women with breast cancer – and why should they? Breast cancer affects 1 in 7 women (and 1 in 700 men). It happens to our sisters, mothers and best friends, and thanks to methodical organisation, vocal advocacy, and generous funding, we can hail their exceptional outcomes.
An oncologist’s gratification at better therapies is always richer when patients are well-supported beyond the clinic visit. Everyone knows that the questions and dilemmas inevitably arise later, when the timely intervention of an expert nurse can make the difference between hope and despair. While there are admittedly gaps, especially in remote areas, breast cancer care in Australia is an outstanding example of coordinated cancer care, in large part due to the visible presence of cancer nurses. They are the lifeblood of holistic patient care but alas, for the majority of cancer patients, such support is either patchy or merely wishful thinking. When some of my oldest and most vulnerable patients ask why this should be the case, I have no answer. How to explain this staggering inequality to patients who are regularly told that all cancer patients are equal?
With an Australian federal election around the corner, cancer patients find themselves in an unprecedented spotlight. So far, much has been said about making cancer care affordable by abolishing out-of-pocket expenses for seeing an oncologist and receiving specialised imaging. These announcements have been greeted with muted enthusiasm because it is unclear to what extent private-billing oncologists would want to dilute their income – and while timely imaging is important, most cancer patients complain about too many scans, not too few. Similarly, the competition to list more drugs is hard to win in a generously funded healthcare system; not everyone will be satisfied, but by and large, Australian cancer patients have excellent outcomes compared to the rest of the world.
No cancer patient should be punished twice, once by the diagnosis and then, by the cost of treatment. But there is a third cost to patients apparent to anyone who deals with its daily travails. Cancer has a way of wrecking the most resilient of individuals, making them plumb the depths of anguish and question every certainty. Healthy patients become vulnerable overnight; brave families quaver at the prospect of the next day, the next week. Add in a multitude of toxicities and life gets hard quickly. In such times, two things are essential – an able caregiver and an empathetic doctor. But both these things are hard to come by. In an ageing and disconnected society, many patients face catastrophic illness alone. And in an increasingly bureaucratic environment, doctors feel beholden to systems rather than patients.
People shouldn’t need to make a choice but it’s unsurprising that compared to other professionals, patients often have the most profound regard for their nurse. More accessible and less intimidating, cancer nurses blend into the lives of patients in a way doctors can’t or won’t. I routinely see how the relationship between a patient and a nurse achieves better quality of life and peace of mind than some of the most expensive taxpayer-funded treatments.
Related: I'm an oncologist who got breast cancer. This is what I learned
So, here is an idea if there is any money left over from the “blockbuster” announcements: fund cancer nurses for every tumour type until every patient is as ably served as those with breast cancer. If all cancer patients really deserve the same quality of care, then the assistance given to them should be based on the human condition rather than the pathology report.
My elderly patient’s consultation has wound to an end. In a desperate bid to help him, his wife resorts to one last plea.
“Doctor, you couldn’t just say he has breast cancer, could you? I mean, who’d know?”
Judging by her expression, she isn’t joking.
“I’m afraid that wouldn’t be ethical.”
“Really? Any more unethical than what you’re doing now?”
Telling myself she understands it’s not my fault, I let her have the last word and help her husband to his feet.
• Ranjana Srivastava is an Australian oncologist. Her sixth book, A Better Death: Conversations in the Art of Living and Dying Well, will be published in June 2019
