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

ABSTRACT: While there is no generally accepted medical definition of "futile care," many factors may play a role in the delivery of chemotherapy to patients who are unlikely to benefit. In this review, we consider the roles of both the patient and the physician in driving the provision of "futile care" and offer practical steps the oncologist can take to avoid it.

The use of the term ‘futility’ in cancer care has been prompted, in part, by increasing requests from patients for treatments thought to be ineffective as well as costly.[1] The appropriate role of chemotherapy near the end of life is a complex issue.[2] As chemotherapy is increasingly available and better tolerated, its use at life's end involves sophisticated oncologic assessment, a focus on the patient's goals of care, and a balancing of perspectives of the patient and treating oncologist.

A number of factors play a role in the delivery of chemotherapy to patients who are unlikely to benefit. Incentives ranging from the expectation of prolonged survival, symptom improvement, the preservation of hope, or simply not "wanting to give up" all contribute to some degree. In this review we hope to investigate these issues and expand on the role that physicians, patients, and even popular media may play.

What Is 'Futile Care'?

There is no generally accepted medical definition of futile care.[3] If one considers that the goal of medical care is to achieve a benefit above a certain minimal threshold, then futile care could be defined as care that fails to achieve that benefit.[4] The sticking point, then, is not one's definition of futility, but one's definition of benefit. That is why the application of the word "futility" in discussions of medical care is considered ethically hazardous, especially when the values of the physician are incongruous with those of his or her patient.[5]

In addition, the inexact and somewhat unpredictable nature of medicine makes it a precarious endeavor to call a therapy futile unless, as Schneiderman narrowly defines it, "in the last 100 cases a medical treatment has been useless." He goes on to say that "physicians should distinguish between an effect, which is limited to some part of the patient's body, and a benefit, which the patient has the capacity to appreciate."[4] Finally, one of the main reasons the word "futility" became unpopular is that it was perceived to be invoked when a therapy became too costly.

The moral implications of how futility is viewed are equally important as we deal with the emotionally charged issues surrounding the patient for whom further treatment will provide questionable benefit. Notably, the right to refuse a proposed treatment is considered a negative right. This means that if deemed to have decision-making capacity, a patient may refuse any medical care offered.[6] However, a patient is not entitled to any intervention he or she requests that is not deemed medically indicated.[7] In other words, a physician is not obligated to provide futile therapies.[8] This does not mean that a physician should decline to provide requested therapy without a thorough, considered discussion with the patient and his or her family. The specter of futility may signal a turning point in the patient's trajectory at which it is most important to discuss and clarify benefits and burdens as well as goals of care.[9] 

Different Perspectives

The National Comprehensive Cancer Network (NCCN) may define futile care in the patient with metastatic breast cancer as any treatment beyond third-line chemotherapy in the metastatic setting or any treatment with cytotoxic therapy in a woman with an Eastern Cooperative Oncology Group (ECOG) performance status of 3 or greater (www.NCCN.org). Is there a percentage benefit threshold under which the benefit is generally considered to be futile by patients or providers (eg, a less than 5% chance that therapy will allow patients to be alive at 1 year)? That threshold may depend on whether you are a patient or a payor if the chemotherapy involves expensive biologic agents such as erlotinib (Tarceva) or bevacizumab (Avastin).

It is critical to understand that people looking death in the eye have a different perspective. Studies from the United States, England, Canada, Japan, Norway, and Italy consistently show that cancer patients generally were willing to undergo aggressive treatment with major side effects for very small chance of benefit-different from what their doctors or nurses would choose.[10] Some American patients with previously treated non–small-cell lung cancer (NSCLC) would accept chemotherapy for a survival benefit as short as 1 week, while others would not, even for a benefit of 2 years (the actual expected benefit was ~3 months).[11] What if the benefit were only to improve quality of life by reducing pain or dyspnea?

The American Society of Clinical Oncology could not decide on a minimal benefit for which chemotherapy was indicated, only that some benefit must be demonstrable in terms of improved survival, quality of life, or symptom control, or lessened toxicity.[12] Consensus panels for supportive cancer care make little distinction between curative treatment and palliative treatment that could extend life,[13] since 6 months of added survival could be as important as an increased rate of cure. Clearly, there are no easy definitions to what exactly patients, providers, and society consider to be futile care.

Chemotherapy at the End of Life

Over 20% of Medicare patients start a new chemotherapy treatment regimen in the 2 weeks before death,[14] and a recent survey documented that the percentage of oncology practices giving chemotherapy within 2 weeks of death ranged from 0% to 34% (C. Desch, personal communication, 2006). Chemotherapy within days of death is unlikely to improve patient survival, produces side effects, precludes entry into most hospices, and typically requires expensive supportive care with erythropoietin-like drugs and colony-stimulating factors (G-CSF [Neupogen] or GM-CSF [Leukine]). In a retrospective review of patients with incurable NSCLC,[15] chemotherapy was given to 20% of patients within 2 weeks of death and to 43% of patients within 1 month of death. This was time lost for patients to fully take advantage of hospice services.

Palliative chemotherapy regimens have a huge price tag, at a cost of up to $100,000/yr per patient, and even insured patients can be burdened by 20% copayment requirements. The cost of palliative chemotherapy for colorectal cancer could easily be $50,000/yr, not counting supportive care drugs or imaging.[16] Patients with cancer account for about 40% of all Medicare drug costs, totaling an estimated $5.3 billion in 2006, with $1.5 billion for erythropoietin-like drugs alone.[17] Some drugs (oxaliplatin [Eloxatin] for metastatic colon cancer[18] and docetaxel [Taxotere] for metastatic prostate cancer[19]) have acceptable cost-effectiveness ratios. That is, treated patients do gain several weeks or months of life, at a cost less than $100,000 per additional year of life saved-but this is still additional money that must be spent.

How often do patients insist on receiving therapy with full knowledge that treatment is futile, or specifically, will not improve their survival or quality of life? There is little data on specific percentages, but lack of provider-patient communication regarding prognosis, goals of therapy, and benefits of aggressive symptom management (hospice) all play a role in the delivery of futile chemotherapy.

Misalignment of Perceptions

One reason for the delivery of futile chemotherapy may stem from a misalignment of perceptions between providers and patients on the goals, benefits, and side effects of therapy. Poor communication likely plays a significant role in this disconnect. Provider perceptions are often not aligned with patient preferences; for example, patients receiving palliative chemotherapy are often willing to discuss quality-of-life issues with their physicians, but communication regarding these issues is often hampered by discordant expectations as to who (patient vs physician) should initiate such discussions.[20]

In older patients with metastatic colorectal cancer, there is only 26% concordance between a patient's expressed preference for decision control and a provider's perception of the patient's preference.[21] On the other hand, a survey of breast and prostate cancer patients and oncologists demonstrated concordance among patients and providers regarding the amount of fatigue reported by patients (78% and 76%, respectively).[22]

There is even misunderstanding between providers and caregivers on the most important aspects of hospice care.[23] McGorty and Bornstein[24] provide an excellent review of the most common barriers to hospice enrollment (Table 1).

Poor Communication Between Physicians and Patients

Prognosis

TABLE 1

Barriers to Hospice Utilization

Physicians often do not tell patients about their poor prognosis, or they give such a wide range of outcomes[25] that patients choose the most favorable, or are simply unrealistically optimistic about expected length of survival.[26,27] Significant variation exists in how often physicians discuss prognosis and alternatives to chemotherapy,[28] while most patients want more detailed information about their disease.[29] Patients in clinical trials who understand the risks and benefits of therapy and sign informed consent documents may overestimate the chance of success.[30] Other patients may overestimate their prognosis because they confuse the term "response" with "cure."[31,32]

A patient's denial about the terminal nature of their disease is also a significant barrier to a frank discussion about stopping futile therapy and entering hospice.[33] A written plan of communication that clearly defines prognosis, goals of therapy, and treatment options (including hospice) may help to avoid these misunderstandings.[34] Studies consistently show that patients want and use such information. Of 126 terminally ill patients, 98% said they want their oncologist to be realistic.[35] Moreover, patients want oncologists to be truthful and compassionate, and to continue to care for them during the illness.[36]

End-of-Life Discussions

One-quarter of physicians do not discuss hospice with their terminally ill patients, while the remainder discuss it when they feel patients are ready to accept the option of palliation alone.[37] One paradoxical explanation is that patients do not want to discuss such difficult issues with their oncologist. Of 101 admitted inpatients without advance directives, only 23 wished to discuss the issue with their oncologists; however, 56% of those without advance directives (44/78) supported discussing it with the admitting physician, and not the oncologist.[38] Another explanation is that such discussions are simply too difficult and painful; even clinicians who are well trained and skilled at giving bad news can find it burdensome and emotionally difficult.[25,39]

Unfortunately, families often receive little information from physicians about hospice.[40] In one study, physicians initiated the discussion about hospice only half of the time, whereas patients or families initiated one-third of the discussions. The information that patients and families identified as important in deciding about hospice were the frequency of visits, payment, and practical help such a program provides.[41] 

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 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

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.

References:

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