From a clinic emptied of patients but not their problems, I begin a series of phone consults, the first of which is to an increasingly fatigued man who lives alone. For a while I have rued the day someone suggested he have chemotherapy because now he has poured all his energies into having intensifying toxic treatment for a terminal illness. I know that he appreciates seeing the nurses but suddenly the stakes have risen.
Careful not to sound punitive, I say: “Let’s consider a chemotherapy break.”
“Why, do I have the virus?”
“No, but I am worried about keeping you safe.”
“But stopping chemo means guaranteed death.”
“It’s not so simple – let’s talk through it again.”
“Don’t give up on me, doc. I trust you.” His voice breaks.
Very real ethical dilemmas abound for cancer clinicians bearing the hopes and dreams of their patients, who deserve empathy but also a realistic insight into their situation.
What constitutes a meaningful survival benefit: three weeks, three months or somewhere in between? Would you want to live an extra year if you spent it in a nursing home? Would you rather risk your life for a chance at cure or accept a lesser intervention to preserve quality? If your dementia was worsening, what would you want done about an asymptomatic cancer?
Now we are in the grip of the coronavirus pandemic shown to particularly imperil the elderly with chronic comorbidities (ie the majority of cancer patients) although it increasingly seems the young cannot afford to be complacent either. The usual dilemmas of oncologists are suddenly compounded by a pressing new question: which cancer patients should be continuing their chemotherapy?
This is a broad question with the usual caveat: “It depends.” It depends on the individual, the diagnosis, the type, duration and intent of treatment. It also depends on a patient’s philosophy and a clinician’s preparedness to ponder harm and benefit. Medical conversations in a cancer clinic are necessarily imbued with ethical implications but now is the time to approach them with particular clarity and sensitivity. Given the predicted pressure on elective surgery, resource availability, supply movement and frontline staff, it is imperative to reassess the needs of every patient, not only the ones who express concern.
Field experts are circulating their suggestions in a rapidly evolving space. Meanwhile, here are some questions that all chemotherapy patients should ask their oncologist.
Why am I having chemotherapy?
In general, chemotherapy is given before an operation to render surgery more successful, or afterwards to reduce the risk of cancer recurrence. It’s sometimes combined with radiotherapy to improve outcomes. In these cases, the intent is cure. Many common cancers are diagnosed at an advanced stage; therefore, many more patients receive palliative chemotherapy, intended to halt progression and extend life but without the prospect of a cure.
In a landmark study, the majority of patients with a poor prognosis believed they were receiving chemotherapy for a cure. Decisional regret is common among cancer patients; people who do not clearly understand the goals of chemotherapy cannot make decisions in their best interest.
This is not news to oncologists, but now we have an even greater responsibility to ensure that the decision to continue chemotherapy has been made deliberately.
How does my treatment benefit me?
Many patients never ask this question for fear of sounding ungrateful, but the basis of shared decision-making is to use professional expertise to help individual priorities.
It’s important for patients to understand how many people in their situation will derive benefit and what that benefit looks like. Will treatment alleviate symptoms, delay cancer progression or prolong life? Each goal is important but different.
Patients are often astonished to hear that common therapies offer less than 5% benefit. The more lines of chemotherapy, the less the chance of success. Hand in hand with benefit goes harm. The mortality rate of curative intent chemotherapy is quoted between 0.5 and 4%. In one study, 7.5% of elderly patients receiving combined chemotherapy and radiotherapy for lung cancer died during treatment. And as discover, impairment can persist long after treatment.
A timely editorial reminds oncologists of “the efficacy-effectiveness gap”. To demonstrate the greatest efficacy, clinical trials select the fittest patients with the least comorbidities. But real-world patients are completely different – they are older, sicker and rarely treated at academic centres, therefore treatments that looked promising in clinical trials don’t always translate into effectiveness for the individual patient.
Patients deserve the best of modern medicine minus the worst of complications, which is why fully informed consent takes on an additional significance during a pandemic.
Have my risks changed?
The usual high risks of chemotherapy are magnified during a pandemic. Immunosuppressed patients are more prone to infections and many chemotherapy agents cause mucositis, thus breaching a natural protective barrier. Frequent tests and chemotherapy visits expose already vulnerable patients to pathogens and other sick patients. Mortality from the coronavirus appears higher in cancer patients. Being at risk doesn’t necessarily mean abandoning useful treatment. But shared decision-making is essential to mitigating some risks and being prepared to handle others.
Can I consider another therapy?
Patients harbour a great fear of foregoing treatment, often viewing it as their failure. But evidence shows that more isn’t necessarily better, and chemotherapy may be safely de-escalated, paused or even stopped without causing harm. Experts suggest a review of new and ongoing therapies to determine options including oral substitutes.
Where intensive chemotherapy remains advisable, in-person visits must be reduced. Injections to maintain blood counts and oral medications taken at home to reduce nausea, anxiety and allergies may be ways to reduce the time in the infusion centre.
A word about immunotherapy agents, whose promise though not peril, is often mentioned. While distinct from chemotherapy, they are responsible for a host of immune-related complications, the most relevant of which is pneumonitis. This drug-induced lung inflammation can be difficult to distinguish from a viral infection; furthermore, conventional treatment of pneumonitis with high-dose steroids may impede recovery from coronavirus-associated acute respiratory distress syndrome.
Combination immunotherapy drugs typically cause substantially greater toxicity than single agents and there is emerging evidence that stopping immunotherapy in selected patients can be associated with durable responses. Patients on immunotherapy merit a detailed discussion about which agents to continue.
What happens if I become unwell?
Mild illnesses in other patients can become catastrophic for cancer patients. Confused by instructions or reluctant to attend hospital, patients may minimise their symptoms. Every cancer patient must know whom to call and where to go in case of concern. Queuing at a fever clinic or calling a general helpline may squander the opportunity for urgent care. Emergency professionals aren’t familiar with all the nuances of cancer treatment and information isn’t always readily transferrable across institutions. Therefore, it is vital for patients to self-identify as high-risk and carry basic information about themselves.
Can we discuss an advance care directive?
The truth is no one wants to dwell on their mortality, not doctors, not their patients. Despite widespread recognition of the resulting harm, a discussion about end-of-life care remains a second-order task in clinic. Many people worry that in pressured times, the sickest and oldest patients will be denied intensive care but in fact, these patients face such poor outcomes that it is in their best interest to receive good palliative care from the outset. Advance care directives return control to patients, which is why we must discuss them proactively but sensitively.
Finally, to something that is unspoken but important. Patients invest great trust in professionals, but what happens when those very professionals become uncertain? Can we trust shaken doctors to guide shaken patients?
I think the answer is yes.
A profession with its share of discord and disharmony is coalescing in unforeseen ways. There is a genuine understanding across the workforce that the only way to face this crisis is together. Humbled by a virus and equal in our vulnerability, there is a newfound concern and care for each other. Our better angels have declared themselves.
Over 2,000 years ago, Hippocrates observed that the highest aim of medicine was to “cure sometimes, treat often, comfort always”. Patients should know that their providers are doing everything in their power to honour this adage.
