Palliative Care Always
Palliative Care Always
ABSTRACT: Palliative cancer care is the integration into oncologic care of therapies that address the issues that cause physical and psychosocial suffering for the patient and family. Effective provision of palliative cancer care requires an interdisciplinary team that can provide care in all settings (home, inpatient, and outpatient). There is clear evidence for improved outcomes in multiple domains—symptoms, quality of end-of-life care, provider satisfaction, cost of care—with the integration of palliative care into cancer care. As a result, there are now guideline-based recommendations for incorporating palliative care into cancer care. Unfortunately there continue to be barriers to effective integration; these include gaps in education and research, and a cultural stigma that equates palliative care with end-of-life care. These barriers will need to be addressed in order to achieve seamless palliative care integration across the continuum of cancer care for all patients and their families.
"Palliative care is given throughout a patient’s experience with cancer. It should begin at diagnosis and continue through treatment, follow-up care, and the end of life."
—The National Cancer Institute (NCI) fact sheet on palliative care
Approximately 12 million people are living with cancer in the United States, according to Surveillance, Epidemiology, and End Results (SEER) statistics. In 2012, 1.6 million new cases of cancer will be diagnosed. Fortunately, deaths from cancer have been on the decline, with increasing numbers of survivors. Strides have been made in survival for patients with breast, colon, prostate, and lung cancer. Figures 1 and 2 depict a decrease in age-adjusted cancer death rates across all major cancer sites in both men and women, with the exception of lung cancer in women. This trend can also be depicted as number of deaths avoided based on an overall decrease in mortality rate (Figure 3). Because patients with cancer are living longer, often with metastatic disease, cancer is becoming more of a chronic illness with high symptom burden. Additionally, patients who are cured often have significant long-term symptom-related and treatment-related morbidity. For this patient population, it becomes critical to have palliative care integrated from the point of diagnosis.
The World Health Organization defines palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. Palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications." Due to rapid changes in both the perception and practice of palliative medicine, the Center to Advance Palliative Care (CAPC), a leader in palliative care advocacy and training, recently added to this definition: "Palliative care . . . is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family [with] . . . specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment." Implicit in this evolving definition of palliative medicine is the goal of earlier integration of palliative care for all patients with a serious illness and their families in order to enhance and improve these patients’ quality of care from the time of diagnosis.
Palliative care is a multidisciplinary approach to care (involving nursing, social work, physician care, chaplaincy); it is focused on the patient and family as the unit of care throughout the trajectory of the illness, from diagnosis to death.[5-8] Treatment is tailored to meet a patient’s and family’s goals and to harmonize with their values. Palliative care given concurrently with oncologic care can improve outcomes and quality of care for patients.
In this article, we present or review the following:
• The evidence for providing palliative care concurrently with oncologic care.
• Guideline-based recommendations for screening and incorporation of palliative care.
• A case-based discussion to demonstrate palliative care across the continuum of cancer care.
• Who provides palliative care?
• Barriers to integrating palliative care and oncologic care.
• The value of palliative care.
Evidence for Integration of Palliative Care With Oncologic Care
Standard anti-cancer therapies prolong survival, relieve symptoms, and improve quality of life. Much of the early data evaluating the effect of anti-cancer treatment on survival and quality of life comes from the advanced non–small-cell lung cancer literature. This is due to both the high burden of symptoms in this disease, and until recently, a relative dearth of active anti-cancer treatment options.
For example, early trials comparing single-agent chemotherapy vs best supportive care (BSC) in these patients showed improved survival and symptom control with chemotherapy.[9-13]Platinum-based multi-agent treatment regimens for non–small-cell lung cancer also improved survival and disease-related symptoms.[14-17] The likelihood of symptom improvement usually correlated with response to therapy. One point worth noting is that the trials described here standardize the treatment arm (chemotherapy or targeted drug) but do not standardize the best supportive care arm. For all practical purposes, these trials compare treatment vs observation.[18-23]
Similarly, targeted therapies also have the potential to result in dramatic disease responses, and when they do, they offer significant symptomatic improvement. For patients with non–small-cell lung cancer, the addition of erlotinib (Tarceva) or gefitinib (Iressa) in patients with an epidermal growth factor receptor (EGFR) mutation improves survival and quality of life.[24-27] In the Iressa Dose Evaluation in Advanced Lung Cancer (IDEAL) 1 study, 70% of those patients receiving a 250 mg/day dose of gefitinib and who had either stable disease (SD) or a response to therapy (complete response [CR] or partial response [PR]) had improvements in symptoms as measured by the Functional Assessment of Chronic Illness Therapy (FACIT). This was substantiated by data from the IDEAL 2 study: 96% of patients who had a radiographic response had symptom improvement. More recently, the identification of the somatic driver mutation anaplastic lymphoma kinase (ALK) and the development of the targeted drug crizotinib (Xalkori) have added yet another option for patients.[30-33] The foregoing are examples of drugs that have a substantial response rate and are thus able to significantly improve disease-related symptoms and to prolong life.
If anti-cancer treatment improves survival and quality of life (via disease modification), the question that arises next is "What does palliative care add?" The strongest evidence supporting concurrent palliative care and oncologic care is Temel’s landmark study which showed the impact of integrated care. One hundred fifty-one patients with newly diagnosed stage IV lung cancer were randomized to usual oncologic care vs usual oncologic care plus concurrent palliative care. Patients in the usual care arm were allowed to receive palliative care by referral based on patient/healthcare provider request. Patients in the experimental arm were seen by the palliative care team monthly. The initial palliative care visit occurred within 3 weeks of enrollment and lasted a median of 55 minutes. On average, 20 minutes were devoted to symptom control, 15 minutes to discussion of coping, and 10 minutes to understanding the illness. Patients in the concurrent care arm had greater improvements in quality of life and mood, less aggressive care at the end of life, and prolonged survival (8.9 vs 11.6 months, P = .02). Additionally, interaction with the palliative care team increased the likelihood that patients would have a realistic view of their prognosis. At baseline, one-third of patients believed that their cancer was curable. An accurate estimation of prognosis was significantly more likely for patients in the intervention arm than for those receiving standard care (82.5% vs 59.6%).
Other studies have investigated the integration of different components of palliative care into oncologic care and have demonstrated a favorable impact on quality of life, mood, and symptom intensity. These studies show that the addition of palliative care to oncologic care has the ability to improve the patient and family experience in dealing with a serious, life-limiting illness (Table).[37-42] While there are an increasing number of studies that demonstrate the benefit of palliative care, further investigation is needed to determine which components of a palliative care intervention are essential to achieve specific benefits.
Guideline-Based Recommendations for Screening and Incorporation of Palliative Care
Quality initiatives and guidelines advocate an integrated palliative care–oncology model. The vision of the American Society of Clinical Oncology (ASCO) of personalized medicine focusing on patient values and goals relies on the provision of concurrent palliative care. A recent ASCO–European Society for Medical Oncology (ESMO) consensus statement on quality cancer care included "pain management, supportive and palliative care" as one key component of optimal oncology care. Finally, ASCO’s Quality Oncology Practice Initiatives incorporated an array of palliative care measures as quality indicators, including symptom control, attention to emotional well-being, and quality of end-of-life care. These were further expanded in 2011. The increasing data demonstrating the benefits of simultaneous oncology and palliative care led ASCO to publish a Provisional Clinical Opinion on the topic (Table). "Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. . . . it is the Panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden." There was no evidence of harm to patients who received integrated palliative and oncology care.
Finally, in view of rapidly rising healthcare costs, ASCO was challenged to identify practice changes that would improve cost-effectiveness without diminishing quality of care. The first recommendation focused on when NOT to treat the cancer: "Don’t use cancer-directed therapy for solid tumor patients with the following characteristics: low performance status (3 or 4), no benefit from prior evidence-based interventions, not eligible for a clinical trial, and no strong evidence supporting the clinical value of further anti-cancer treatment." For these patients, a front-line palliative care approach is recommended.
The National Comprehensive Cancer Network (NCCN) guidelines recommend palliative care always, chemotherapy sometimes, for any patient with:
• Uncontrolled symptoms.
• Moderate to severe distress related to cancer diagnosis or therapy.
• Serious comorbid physical, psychosocial, or psychiatric conditions.
• Life expectancy < 6 months.
• Patient and family concerns over course of disease or decision making and/or request from patient or family for palliative care.
The guidelines recommend frequent palliative care screens to evaluate symptom burden, change in performance status, disease trajectory, or goals of care. Glare et al operationalized these screening criteria into a scored tool and applied this tool in the ambulatory oncology setting. Screening of patients was done by an office practice nurse at an outpatient gastrointestinal clinic who was aware of the medical situation of each patient. Patients were classified according to extent of disease, prognosis, and palliative care concerns. The following were included in the screen: metastatic disease, functional status, presence of complications related to the underlying cancer, presence of comorbid conditions, and presence of palliative care concerns. Of 119 patients screened, 13% (score > 5) met criteria for palliative care referral. This intervention was effective as a simple screen and captured patients who would benefit from specialist palliative care at an earlier than usual time in their disease course.
However, even with guidelines, accurately estimating prognosis remains difficult. Certain physical symptoms may help, because they portend a poor prognosis and may therefore trigger a palliative care referral. These include anorexia, dysphagia, dyspnea, xerostomia, and weight loss. A recent study found that if none of these symptoms were present, patients had a median survival of 6 months, but if all of these symptoms were present the median survival was only 6 weeks.
Poor (score of ≥ 3 on the Eastern Cooperative Oncology Group [ECOG] scale) or declining performance status is another indicator for palliative care involvement. Patients with advanced cancer lose the majority of their functional status during the last 2 months of life. Both the Karnofsky Performance Status (KPS) scale and the ECOG performance status scale correlate with survival in cancer patients. A KPS score of 40 or an ECOG score of ≥ 3 are associated with survival of 3 months or less.[50-54]
Finally, a change in treatment trajectory, determined by either the clinician or the patient, warrants palliative care involvement. Examples include toxicity from treatment (ie, grade IV graft-versus-host disease in a transplant patient), refractory disease (ie, disease that is no longer treatment-sensitive), or a reluctance on the part of the patient to continue with anti-cancer therapy due to the burdens of treatment. Figure 4 depicts the disease trajectory often seen in cancer. Palliative care integration is appropriate at diagnosis, when disease recurs (this is often the first time when people recognize that they are/or may die of their disease—ie, a decision-making point), and when disease becomes advanced or incurable. Individualized assessment of each patient, with attention to both the molecular basis of the cancer and the issues that cause suffering for patient and family, ensures quality integrated care.