'Futile Care': What to Do When Your Patient Insists on Chemotherapy That Likely Won’t Help

What Drives Patients to Want 'Futile Care'?

Victims of Our Success?

Do patients expect better outcomes? The increasing effectiveness and lessened toxicity of palliative chemotherapy is well supported by randomized trial data. First-line chemotherapy for NSCLC patients improves survival by several months, relieves symptoms, and improves quality of life compared with best supportive care.[42] Second-line treatment of NSCLC patients with docetaxel(Drug information on docetaxel) vs best supportive care is associated with a significant prolongation of survival (7.0 vs 4.6 months, or a difference of 10 weeks,[43] as well as an increase in 1-year survival, 29% vs 19%), improvements in pain, and less deterioration in quality of life.[44]

Even third-line treatment may improve survival or symptoms, especially with novel, relatively nontoxic oral agents such as erlotinib, which, in one study, improved survival compared to best supportive care from 4.7 to 6.7 months, with improved pain, dyspnea, and physical functioning.[45] Palliative chemotherapy has also increased survival and quality of life in metastatic colorectal[46] and prostate cancer patients.[47]

Trading Down

Patients certainly have fears about giving up state-of-the-art medical care when no other viable treatment options are available. Many patients fear that they will not receive adequate medical services in hospice care, or as one patient stated, entering hospice "felt like I was trading in the Lamborghini of medical care for an old pick-up truck driving down a rutted road."[48]

Some evidence suggests that concurrent palliative or hospice care alongside routine oncology care improves health outcomes, but the data is far from conclusive.[49] The one randomized trial of concurrent hospice care plus usual oncology care vs usual oncology care alone has not yet been published. The group with concurrent care lived slightly longer (not statistically significant), had quality of life preserved longer, used less chemotherapy, and transitioned to hospice enrollment sooner. The clinical care differences modestly favored the concurrent care approach, but the hospice cost was substantial and much higher than the cost of hospitalizations avoided.[50] Proof of efficacy will require rigorous testing, preferably in randomized clinical trials.

Lack of Objective, Publicly Available Resources

A comprehensive review found that randomized trials of decision aids in oncology yielded increased patient knowledge and more involvement in decision-making,[51] and a decision aid for adjuvant therapy of breast cancer (Adjuvant!, available at www.adjuvantonline.org) was recently shown to improve medical decision-making and help low-risk patients avoid unnecessary chemotherapy.[52]

However, obtaining honest and useful information about prognosis and treatment options for patients with metastatic cancer is not easy. For patients with recurrent NSCLC, the National Cancer Institute (NCI) website simply states that "current treatments do not cure the cancer," but does not list the advantages of chemotherapy (the likelihood of improvement in progression-free survival, overall survival, or symptom improvement), the disadvantages (chance of nausea, neuropathy, fatigue), or alternatives such as hospice.[53]

The website for the leading national advocacy group for lung cancer (Lung Cancer Alliance) offers important information about prognosis at diagnosis: "Over 50% of new lung cancer cases will be diagnosed at a very late stage—stage IIIb or IV—and only 5% of them will live for 5 years." But, like the NCI website, there is nothing about prognosis for individual patients, the expected outcomes of treatment, what treatments work and how well, the alternative of palliative care without specific anticancer treatment, how to choose among therapies, or what most patients could reasonably expect.[54]

Not present on any of these websites are needed answers to the most common questions that we as clinicians are asked frequently: What is my chance of cure? Will treatment make my cancer shrink? Will I feel better or worse? What are the main side effects? What are the likely things that will happen to me? Are there nonchemotherapeutic options such as hospice or palliative care? How do people make decisions?

Direct-to-Consumer Advertising

Between 2000 and 2005, advertising dollars targeting patients increased from $2.5 billion to $4.2 billion.[55,56] Indeed, a high percentage of oncology nurse practitioners report patient requests for medications as a result of advertisements.[57] While almost all appeals address effectiveness (for example, the benefit of a particular chemotherapy in progression-free survival), the quality of the educational content is poor overall and may be overshadowed by the psychological appeals found in over half of advertisements.[58] Thus, while direct-to-consumer advertising may be attractive to patients because, in the words of one cancer survivor, it "right[s] the imbalance of power in the relationship between the physician and the patient"," providers may become frustrated by the feeling that they are being cast as villains in sorry confrontations between advertisers and payors."[59]

Physician's Role in Driving 'Futile Care'

Physician-Patient Relationship

It is not surprising that physicians respond to their patients—particularly those with whom they share a long-term relationship—with powerful emotions of their own.[60] These can include a personal and professional sense of failure and frustration, guilt, powerlessness against the illness, grief, a need to rescue the patient, or a desire to separate from and avoid patients to escape these feelings.[61] Interestingly, almost one-quarter of physicians will occasionally administer futile chemotherapy to maintain patient hope.[62]

Late Referral to Hospice

In our experience, hospice clinicians and patients and their families sometimes wish that the patient had enrolled in hospice sooner. According to the website of the National Hospice and Palliative Care Organization, the median length of stay on hospice has declined from 29 days in 1995 to 26 days in 2005, with one-third enrolling in the last week of life and 10% on the last day of life.[63] Late enrollment may not only shortchange patients but also possibly harm their loved ones, since there is evidence that hospice care is associated with a 0.5% lower death risk for the Medicare-age surviving spouse.[64]

Families' perception of late referral is associated with lower satisfaction with hospice care overall.[65] In the most recent and largest study, among those with hospice stays of less than 30 days, 16% of families said they were referred too late.[66] Of note, the perception of being referred too late, but not the actual length of stay, was associated with more unmet needs, lower satisfaction, and more concerns. One study found that patients would have liked palliative care consultation earlier in the course of their disease.[67]

It is unknown whether this view of "too-late" referrals to palliative care and hospice will change with the new relatively nontoxic chemotherapy treatments. Barriers to earlier hospice enrollment include physicians' lack of knowledge of hospice philosophy, services, and patient eligibility requirements. Brickner et al found that 84% of physicians surveyed were unable to identify appropriate hospice diagnoses, and only 12% were aware of the National Hospice Organization Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diagnoses.[68]

Physician's Role in Avoiding 'Futile Care'

Communication Skills

TABLE 2
Helpful Communication Strategies for Physicians Treating Cancer Patients

Because patients are vulnerable to grasping at slim hopes, oncologists must improve their skills in helping patients think clearly about the appropriateness of chemotherapy (Table 2).[69,70] Inaccurate treatment information can lead to poor health outcomes, including a "bad" death—defined as death in an intensive care unit, on a ventilator, or with multiple hospitalizations and emergency room visits—and overly optimistic patients fare no better or worse than those who are more realistic.[71,72]

Does Honesty Destroy Hope?

Being honest does not destroy hope, but how one delivers information does matter. For patients with incurable metastatic cancer, physician behavior rated as most beneficial to maintaining hope included offering the most up-to-date treatment, appearing knowledgeable about the patient's cancer, and assuring that pain will be controlled.[73] No data show that hope can be taken from patients, as was once thought, or that patients are harmed by carefully provided information.[74,75] As the Education for Physicians on End-of-Life Care for Oncologists (EPEC-O) curriculum[76] states, "Information carefully shared is a gift to the patient and the family who want it and minimizes the risk that patients will distrust the cancer care team."

Conclusions and Practical Steps

Physicians treating terminally ill patients should
•	Confer with a colleague
•	Find out how much the patient wants to know
•	Discuss hospice early
•	Talk with patients honestly, avoiding euphemisms for death and dying
•	Put things in writing
•	Encourage questions and make time to answer them
•	Address symptom management
•	Get training to discuss end-of-life issues

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Clearly a number of factors are at play when patients insist on receiving chemotherapy that their physicians feel will provide no net benefit to survival or symptom improvement. It is often emotionally difficult and time-consuming to address these issues directly. The conundrum for today's oncologist is that it may be easier to avoid the discussion altogether and move on to third- or fourth-line chemotherapy—the patient and family may be less upset, side effects may be minimal, and this approach takes less of the physician's time.

Excellent communication skills are vital; unrealistic patient expectations may be prevented by good communication at the beginning of palliative treatment, by clearly and specifically outlining the goals of therapy, the expected benefits of therapy, and alternatives to cytotoxic chemotherapy such as hospice. The following practical steps should be used by every oncologist in the palliative treatment setting:

• Don't Go It Alone—Finding a trusted colleague with whom to confide can be part of a plan to prevent isolation, improve objectivity, and avoid burnout.[77]

• Ask the Patient—At the very least, finding out how much a patient wants to know and then providing that information is required of all clinicians.[78]

• Discuss Hospice Early—Clinicians often struggle with initiating discussions about shifting treatment goals and, in particular, transitioning to palliative care. Patients may respond with denial, anger, or sadness. These are all normal responses that can represent a loss of control, a fear of the immediate future, or an underlying fear of death. For the most part, patients and families will have their own unique timetable and method for processing this information.[8] Clinicians should generally respond with patience, emphasizing support (nonabandonment) and assurance of aggressive symptom management.[79]

• When Physician and Patient Disagree—When the oncologist thinks further chemotherapy is not indicated, a number of strategies may be tried: holding family conferences to identify the decision-makers in the family and getting the same information to all involved; informing people of, and giving them access to, the actual medical research studies and results; or writing the options down in concrete terms.[80] Much of the time, patients and families may simply need more time to adjust to a difficult situation. Sometimes, it is just a matter of seeing the situation from a different perspective.[4]

Further Recommendations

Always talk with patients in an honest and straightforward way. Be willing to use the words "death" and "dying"—do not use euphemisms. Make it clear, however, that you will address symptom management (eg, treatment for pain or dyspnea). Write down key pieces of information, and encourage questions. Make time to answer those questions by phone, e-mail, or in person. Finally, consider training to discuss these issues. Even experienced oncologists can be trained to give bad news compassionately.[81]

FINANCIAL DISCLOSURE: The authors have no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.