Macmillan Cancer Support says one in two people will get a cancer diagnosis. Yet our treatment still focuses on the disease, not the person’s specific needs
“I need you to see this patient now,” a nurse whispers, her quiet tone masking a mountain of concern.
“I am an oncologist,” I introduce myself to the stricken stranger. “We haven’t met before, but you don’t look so well so I am going to help.”
For weeks, he has been in the grip of nausea, pain and insomnia. His six-hour wait in A&E culminated in being sent home. He has been bed-bound since, too weak to move, eat or drink.
“I am so sorry,” I offer, wondering for the umpteenth time how patients deteriorate like this before our very eyes.
Tears form and he shrugs.
“Dad just wants to feel better, he knows things are bad.”
My heart melts at the plea of his daughter, barely out of her teens.
“We’ve got this,” I reassure her. “He’ll feel better soon.”
The nurse, ever attentive, flicks the chair to recliner mode and catches his wrist. “You are safe,” she says simply.
At this, he dissolves into sobs that rack his whole body.
As I take in the heartrending sight of a grown, burly man reduced to the helplessness of a child, I try to imagine the affronts that have led him here. The patients differ but the underlying themes don’t – months of chemotherapy, failed drugs, countless appointments, perpetual uncertainty, endless waiting, lost income, tired relatives, disappearing friends and on top, the existential questions, “Why me? Why my family? Why anybody?”
I chart fluids and drugs and arrange for a hospital bed, feeling discomfited that the family is so dramatically relieved at such a basic intervention.
Later, in clinic, I see patients ranging from a stoical university student to a devastated father to the frail octogenarian who can’t remember the day, let alone that he has cancer – each patient an illustration of a recent Macmillan Cancer Support UK finding that it is more common for an individual to be diagnosed with cancer than to get married or have a first child. One in two people will encounter a cancer diagnosis in their lifetime, which is why the report says that, alongside marriage, parenthood, retirement and the death of a parent, cancer is now “a common life milestone”.
I bear witness to this “milestone” every day, yet I confess the report is a wake-up call because it has prompted reflection on the chasm between what medicine delivers and what patients desire.
Even a cursory search will reveal the leaps of imagination and discovery that have made cancer medicine fascinating, and indeed life-changing, for so many patients. In the short time that I have been an oncologist, I have gone from ruing that no effective therapy exists, to deciding how best to sequence an array of choices. Sure, not all therapies have delivered stunning results, unacceptable toxicity looms large, costs are prohibitive and our successes are largely confined to the rich world. These are problems to ponder but they don’t diminish the genuine, incremental gains in cancer care. Every day, I see the human face of these gains and whisper thanks to the researchers who empower clinicians like me.
But as nearly every cancer patient observes, what cancer medicine has failed to keep up with is the needs of the person behind the patient. Though there are many diseases with no good treatments and far worse outcomes, the very mention of cancer invites terror like no other. A common rejoinder to the statement, “You have cancer” is, “Am I going to die?” to which a common, and unhelpful, response is: “We can’t say.” For what patients are really asking is not for oncologists to be fortune tellers but for reassurance that we will be there to see them through the whole cancer experience, of which chemotherapy is just a part. They want doctors who are not only proficient but also humane, as capable of consoling as treating. Most oncologists aspire to this, but two things get in our way.
The first is medical training, which has an outsized focus on “defeating” disease at any cost and struggles to take into account patient choice. For all the rhetoric around patient-centred care, it has not been easy to put into practice. Cancer is a heterogeneous disease and the people who get cancer are a diverse lot too. A champion athlete, a vulnerable refugee, a youthful retiree and a frail elderly person all need care but each merits special consideration. The athlete wants to avoid nerve damage and the executive begs to keep her hair so her colleagues won’t know.
The refugee doesn’t own a car and can’t travel to have intravenous infusions and the elderly man trembles at the thought of his inability to care for his disabled wife. He values quality of life over extent; he values staying together over being forced into care, but finds this a nearly impossible conversation to interest anyone in. Faced with an ageing population for whom a cancer diagnosis is but one of several serious challenges, this particular problem will test us all. Studies show that the frail elderly are willing to forego aggressive treatments in favour of preserving their quality of life, provided they are offered the choice. We will need to be realistic about what defines successful cancer treatment. It will mean looking beyond the tumour at the whole person.
Now let me be the first to admit how difficult it can be to do this, even for the most well-intentioned oncologist. Given patients’ myriad needs – from rehabilitation and nutrition to financial, social and emotional welfare – it is obvious that one doctor cannot come close to fulfilling them all. Cancer patients need team support but on any given day, it is far easier to prescribe a £50,000 drug with dubious benefit than find a physiotherapist or social worker. It takes months to access aged-care services in the community until the same patient falls and fractures a hip, after which services swing into place. There is no reason to bunch together cognitively impaired, mentally ill and non-English speaking patients should not be bunched together except that they consistently receive inadequate care across all parts of the healthcare system.
Palliative care has value for patients and oncologists, yet the nexus between oncology and palliative care remains weak in many places due to a lack of education, collaboration and resources. If the emphasis, and hence funding, stays determinedly on finding a cure for cancer (which, as we are now realising, is not one disease) the manifold supportive care needs of patients will continue to go unaddressed. We will keep identifying the gaps without filling them. Oncologists need to appreciate the broader needs of their patients but they also need access to help. When people reach this sobering “milestone”, the science and art of medicine must coexist.
My next patient is late because there is no parking and the scarce wheelchairs are all in use. While waiting, I duck out to see my patient in the chemotherapy chair but stop at a distance. Saline courses through his veins and a crisp white blanket protects his stretched body. His nausea is gone, his pain has settled, and finally he is asleep, his agitated tears replaced by rare calm. Amid the low-level hum, he is fast asleep, his son dozes, and my heart can’t help but skip a beat at how far a measure of kindness goes.
The nurse comes over to join me and we look on, feeling like proud parents who have averted a crisis.
“What did you give him?” I ask quietly, although I know the drugs that I charted.
“Nothing more. He just needed to know he was safe.”
• Dr Ranjana Srivastava is an oncologist and an award-winning author
This article was taken from: https://www.theguardian.com/commentisfree/2017/sep/12/cancer-common-marriage-wake-up-call-macmillan