The Role of Palliative Care in Lung Cancer

Symptoms

Individuals presenting with lung cancer are usually highly symptomatic. Most patients with advanced disease have at least four distressing symptoms. Their average pain severity is 6 to 7, which is considered moderate, based on a numerical rating scale with 0 being no pain and 10 being severe pain. The most frequently reported symptoms are anorexia, cough, dyspnea, fatigue, pain, and insomnia. Individuals with lung cancer experience a greater prevalence of depression and anxiety than individuals with other cancers and also have more frequent and prolonged fatigue compared with patients with other cancers. Breathlessness occurs in 70% of patients, is associated with a substantially greater symptom burden, and can adversely influence the experience of caring for a loved one. Symptom burden may, in fact, be greater than patients indicate. That is why it is important to use a standardized symptom questionnaire. Studies have shown that, when presented with a symptom checklist, patients report three to four times more symptoms than they volunteer.

Even individuals with relatively early-stage lung cancer (stages I–IIIB) have substantial symptoms. When using the Lung Cancer Symptom Scale at disease presentation, patients reported an average of 11 symptoms, and, even when successfully treated, they reported an average of 6 to 7 symptoms still present a year after treatment. As mentioned previously, individuals with early-stage lung cancer experience lack of energy, worry, dyspnea, cough, and insomnia. The Karnofsky performance status often remains impaired at 36 to 52 weeks after treatment, but symptom distress gradually declines by 1 year. Symptom distress is the primary reason for clinical encounters in the outpatient setting and the primary reason for unscheduled admissions. Despite treatments for NSCLC, there is gradual deterioration in physical function, activities of daily living, and cognitive function and an increasing need for social support.

Physicians frequently believe that tumor reduction is a surrogate for improved patient-related outcomes. However, based upon a systematic review of quality of life associated with standard chemotherapy for advanced NSCLC, there are no major changes in the global quality of life for patients on standard chemotherapy regimens. There is only a modest correlation (0.35) between objective tumor size and symptoms. Improved patient-related outcomes with treatment last a much shorter time (3.8 months on average) than duration of objective tumor response (6.4 months). Objective tumor response and patient-related outcomes contribute unique, independent information. One cannot be substituted for the other. Unfortunately, most oncologists are unfamiliar with standard symptom questionnaires, and most are not aware of clinically meaningful differences in patient-related outcome measures. However, having patients complete quality-of-life and symptom questionnaires gives patients a sense of better continuity with their physician and the feeling that their treating oncologist has considered their daily activities and emotional state. Patients think that such questionnaires are helpful and not burdensome. Longitudinal assessment of symptoms is also important because treatment reduces certain symptoms but increases others.

At least 40% of outpatients with cancer are undertreated for pain, as measured by the Pain Management Index. This reflects inadequate analgesic choices based on pain severity, but does not reflect pain response. Despite the fact that greater than 60% of patients have substantial pain, there is no change in the Pain Management Index score with follow-up. Oncologists self-rate their ability to manage pain as high (7 to 10, with 10 being the best management), but rate their colleagues’ ability to control pain lower (3 to 10). Oncologists perceive lack of assessment, time constraints, and patient reluctance to complain as barriers to pain management. Most oncologists know the WHO analgesic stepladder and prescribe opioids around-the-clock for chronic pain. However, most (greater than 60%) fail to correctly answer questions regarding opioid management (dose, schedule, conversion and rotation ratios, and titration) when tested through clinical scenarios. This has been documented in several studies. Symptom burden increases in intensity and number of symptoms as cancer progresses and then plateaus in the last month of survival. Eighty percent have increasing fatigue, dyspnea, and anorexia, and most have chest pain in the last 3 months of life. Left poorly managed, these individuals experience a painful death, and families experience complicated grief or depression in bereavement. Integrating palliative care into outpatient oncology practice early in the course of cancer reduces symptom burden, improves quality of life, and provides the care and support patients and families want (see Box 58.3 ).

Communication

Honest communication is important but can be marred when a patient and physician maintain false hope in anticancer therapy. Good communication includes discussions about alternative therapies, prognosis, the goals of therapy, advance directives, and end-of-life care. Giving bad news requires some special skills, and few oncologists have had that type of communication training. In the US Cancer Care Outcomes Research and Surveillance (Can CORS) study, only half of patients with advanced cancer had discussions about hospice care, and yet greater than 70% died within 6 months. Of the more than 4000 physicians caring for Can CORS patients, most would not initiate discussions about prognosis, advance directives, resuscitation, and hospice care, even if death was expected within 6 months and despite national guidelines. Most physicians stated that they would postpone these discussions until the patient was highly symptomatic or failed disease-modifying therapy. Some will not conduct these discussions unless initiated by the family or patient. Medical oncologists explain the disease course in 53% of consultations and discuss the absence of cure in 84%. However after consultation, most patients with advanced lung cancer still believe there is some chance of cure with chemotherapy. Even after being fully informed using decision aids, one-third of patients with incurable cancer feel that their cancer has some chance of being cured with chemotherapy. Patients do want to be fully informed about the stage at diagnosis and the prognosis, but comprehension often lags behind. Within consultations, oncologists address symptoms in 35% of patient encounters and discuss prognosis in 39%. Patients may perceive prognosis differently than incurability, which has no time line. Even when prognosis is discussed, physicians tend to be overly optimistic. Documentation of discussions about prognosis appears in less than 40% of medical charts. However, documented discussions about prognosis are also associated with documented discussions about options regarding ongoing anticancer therapy (odds ratio 5.8), and documented do-not-resuscitate (DNR) orders (odds ratio, 2.2). Individuals with advanced cancer who overestimate their prognosis or who are given an overly optimistic estimate of survival are more likely to choose therapies for which the burden outweighs the benefit, are less likely to discuss preferences with surrogates, and are less likely to obtain information that would improve the quality of end-of-life care.

The picture may be a bit different from the patient’s perspective. In a study involving 276 patients from four major medical centers, 40% of patients rated communication with their oncologist about the potential for cure of their lung cancer low, and 80% gave low ratings about communication regarding resuscitation, life-sustaining treatments, and preparation of advance directives. Over half of patients reported that communication with their oncologist was inadequate. These findings may be related to a patient’s perception and inability to comprehend the seriousness of the situation, which is only realized as cancer progresses.

A large number of patients choose palliative chemotherapy at the end-of-life, for little to no benefit, because it helps them maintain a sense of control. Adverse effects are less of a concern for patients who value quantity of life. In this situation, alternatives are frequently not discussed. There are few, if any, decision aids to help patients make choices when considering palliative chemotherapy. Patients who have a priority of a longer life rather than better quality of life and who have had a previous response to anticancer treatment are likely to choose aggressive treatment. Patients experience cognitive dissonance when oncologists attempt to discuss end-of-life care and palliative chemotherapy within the same visit. Few patients with advanced cancer have completed advance directives, and less than one-quarter of patients want to discuss advance directives with their oncologists. Sixty percent of oncologists prefer not to discuss advance directives and end-of-life care, including resuscitation and hospice, until anticancer treatments are exhausted.

A collusion of hope surrounding anticancer therapy is maintained by continuing aggressive anticancer therapies despite little or no benefit. Although once important, patients seem to disregard quality of life and give precedence to quantity of life in choosing salvage chemotherapy. Physicians are inclined to continue anticancer therapy, despite lack of benefit, to maintain hope rather than provide supportive and palliative care. Paradoxically, this occurs despite the fact that there is little survival benefit with chemotherapy given within 1 to 3 months of death. In fact, chemotherapy may shorten survival, and early palliative care and hospice care may prolong survival.

As a result, the average time from the last chemotherapy to death is 50 to 60 days, and the time from the last targeted therapy to death is 40 to 50 days. Fourteen to eighteen percent of individuals receive chemotherapy or targeted therapy within 30 days of dying. The most common targeted agents used at the end of life are erlotinib and bevacizumab. Patients with lung cancer had greater odds (2.6) of being on a targeted agent within the last 30 days of life than individuals with other advanced cancers. In one study at a large cancer center, the median time from palliative care consult to death was 1.4 months (interquartile 0.5 to 4.2 months) but the median length of time from the first encounter with an oncologist to consultation about palliative care was 20 months (interquartile 6 to 45). Therefore, there were multiple missed opportunities to include palliative care as part of patient care earlier in the course of disease. Half of patients with lung cancer are within 2 months of death before end-of-life care and hospice are mentioned. The average stable performance score of patients with lung cancer, as measured by the Palliative Prognostic Index, a modification of the Karnofsky performance score, is 8 to 9 months. Once the Palliative Prognostic Index has dropped to 30 or less, the average survival is 0.38 months. At this stage, very few patients (less than 5%) will have improvement in their performance score. Consulting palliative care services after the patient has become bedridden, or has a poor performance score, provides little time to manage symptoms and primarily requires crisis intervention. Offering additional anticancer therapy when a performance score improves is unlikely to occur and, if discussed with the patient, will lead to a false sense of hope and will delay advanced care planning and hospice referral. Even patients with technically treatable small cell lung cancer and an Eastern Cooperative Oncology Group performance score of 3 or 4 do poorly. Only 20% of them will finish the standard four cycles. With a performance score of 4, the median survival is 7 days, and, with a performance score of 3, it is 64 days.

The end results of poor communication and a collusion of hope in anticancer therapy are aggressive care at the end of life, chemotherapy in the last 14 days of life, intensive care unit admissions in the last 30 days of life, and acute hospital-based care in the last 30 days of life. About half of patients with advanced lung cancer will have aggressive therapy at the end of life. The detrimental effect of aggressive care at the end of life is not just economic. It also creates a greater risk of caregiver depression and complicated grief. In retrospect, many patients and families regret their choices of aggressive therapy near the end of life.

In general, patients feel that advance directives should be discussed earlier than physicians do, and the majority of families wished palliative care had been involved earlier in the course of cancer treatment. In one study, end-of-life care discussions took place a median of 33 days before death. In hospitalized patients with advanced cancer, palliative consults usually occur late within the hospital stay, when death is imminent, after a substantial hospital stay, or after admission to an intensive care unit. Consultations often involve the transfer of care.

Most patients in large cancer centers do have a DNR directive in place at the time of death. The average time of signing a DNR directive is less than 3 days before death, and one-third are signed by surrogates. As few as 5% of individuals with advanced cancer who die in the hospital have signed outpatient DNR directives.

Symptom Management, Prognostic Information, and Hope

One of the benefits of integrating palliative care into outpatient oncology is decreased symptom burden. The use of symptom assessment questionnaires will uncover more bothersome symptoms, which can then be managed by the palliative care team. Individuals referred to palliative care early in the course of treatment are more likely to perceive and retain accurate information about prognosis and are less likely to receive aggressive chemotherapy at the end of life. Prognostic discussions do not dampen hope. They empower individuals by providing realistic expectations to help them make informed choices about their medical care. Early palliative care is associated with longer intervals between the last chemotherapy and death and increased hospice enrollment more than 7 days before death (60% compared with 33%). Individuals who have less than 30 days of exposure to palliative care are more likely to receive chemotherapy within 30 days of death. Hope is more influenced by a caring relationship between patient and physician than by prognostic disclosure. The great majority of caregivers feel that avoiding discussions about prognosis is an inappropriate way of maintaining hope.