J. Andrew Billings

Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer

BACKGROUND Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end-of-life care among ambulatory patients with newly diagnosed disease. METHODS We randomly assigned patients with newly diagnosed metastatic non-small-cell lung cancer to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone. Quality of life and mood were assessed at baseline and at 12 weeks with the use of the Functional Assessment of Cancer Therapy-Lung (FACT-L) scale and the Hospital Anxiety and Depression Scale, respectively. The primary outcome was the change in the quality of life at 12 weeks. Data on end-of-life care were collected from electronic medical records. RESULTS Of the 151 patients who underwent randomization, 27 died by 12 weeks and 107 (86% of the remaining patients) completed assessments. Patients assigned to early palliative care had a better quality of life than did patients assigned to standard care (mean score on the FACT-L scale [in which scores range from 0 to 136, with higher scores indicating better quality of life], 98.0 vs. 91.5; P=0.03). In addition, fewer patients in the palliative care group than in the standard care group had depressive symptoms (16% vs. 38%, P=0.01). Despite the fact that fewer patients in the early palliative care group than in the standard care group received aggressive end-of-life care (33% vs. 54%, P=0.05), median survival was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, P=0.02). CONCLUSIONS Among patients with metastatic non-small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival. (Funded by an American Society of Clinical Oncology Career Development Award and philanthropic gifts; ClinicalTrials.gov number, NCT01038271.)

Symptom Distress and Quality of Life in Patients with Advanced Congestive Heart Failure

Little is known about the burden of illness associated with advanced congestive heart failure (CHF). Understanding the needs of this population requires further information about symptoms and other factors related to quality of life. We studied a convenience sample of 103 community-dwelling patients with New York Heart Association Class III/IV CHF. The primary outcome, quality of life, was measured with the Multidimensional Index of Life Quality. Potential correlates of quality of life included overall symptom burden (Memorial Symptom Assessment Scale, MSAS), including global symptom distress (MSAS Global Distress Index, GDI); psychological state (Mental Health Inventory-5); functional status (Sickness Impact Profile); spirituality (Functional Assessment of Chronic Illness Therapy-Spirituality Scale); and co-morbid conditions (Charlson Comorbidity Index). Patients had a mean age of 67.1 years (SD=12.1); were mostly white (72.8%), male (71.8%), and married (51.5%); and had a mean ejection fraction of 22.3% (SD=6.8). The most prevalent symptoms were lack of energy (66%), dry mouth (62%), shortness of breath (56%), and drowsiness (52%). Pain was reported by about one-third of patients. For each of these symptoms, high symptom-related distress was reported by 14.1%-54.1%. Quality of life was moderately compromised (Multidimensional Index of Life Quality composite, median=56, possible range 12-84). Impairment in quality of life was strongly associated with global symptom distress (MSAS GDI; r=0.74, P<0.001); burden of comorbid conditions (r = -0.32, P=0.002), female sex (r=-0.22, P=0.03), functional impairment, particularly psychological impairment (r=-0.55, P<0.001), and poorer psychological well-being (r=0.68, P<0.001). In multivariate analyses, impairment in quality of life was significantly related to high symptom distress, poorer psychological well-being, and poor functional mobility (R2=0.67; P=0.002 for all). Distressful symptoms related to impaired quality of life included lack of energy (P=0.04), irritability (P=0.03), and drowsiness (P=0.02). Community-dwelling patients with advanced CHF experience numerous symptoms, significant symptom distress, and a compromised quality of life. Overall quality of life was strongly associated with symptom distress, psychological well-being and functional status. A focus on ameliorating prevalent physical symptoms and psychological distress, along with supportive measures that promote functional mobility, may lead to an improvement in the overall quality of life in this patient population.

Symptom Distress and Quality of Life in Patients with Advanced Chronic Obstructive Pulmonary Disease

Although chronic obstructive pulmonary disease (COPD) is a highly prevalent and disabling illness, few empirical studies have evaluated the impact of the disease on symptom distress, functional status, and quality of life. These outcomes were explored in a prospective survey of 100 patients with advanced COPD. Patients were recruited from two academic centers. The mean forced expiratory volume in 1 second (FEV1) was 24.4% (standard deviation=3.9). Validated instruments were used to assess symptom distress (Memorial Symptom Assessment Scale [MSAS]), mental health (Mental Health Inventory [MHI]-5), functional status (Sickness Impact Profile [SIP]), quality of life (Multidimensional Index of Life Quality [MILQ]), spirituality (Functional Assessment of Chronic Illness Therapy [FACIT] Spirituality Scale), and comorbid conditions (Charlson Comorbidity Index). The most prevalent symptoms were dyspnea (94%), fatigue (71%), xerostomia (60%), coughing (56%), and anxiety (51%). Other symptoms with high prevalence were drowsiness (47%), irritability (42%), feeling nervous (40%), and wheezing (40%). Significant pain was reported in about one-third of patients. Patients reported relatively high levels of overall functional impairment (SIP median=24.0) and modest impairment in overall quality of life (MILQ median=52). Overall, psychological well-being was relatively unimpaired (median=24.5), and the comfort derived from faith was intact (FACIT median=2.5). Impairment in quality of life was strongly associated with symptom distress (MSAS-GDI; r=-0.74, P<0.001), functional impairment (SIP total; r=-0.59, P<0.001), female sex (r=-0.26, P=0.01), and poor psychological well-being (MHI-5; r=0.68, P<0.001). In multivariate analyses, poor quality of life was strongly correlated with higher total symptom distress, sickness-related dysfunction, and lower levels of psychological well-being (R(2)=0.66). In addition, two specific psychological symptoms-worrying and feeling irritable-were independently predictive of poor quality of life. Patients with advanced COPD have multiple distressing symptoms and a high prevalence of disturbances in mood, functional status, and quality of life. A focus on ameliorating prevalent physical symptoms and psychological distress may lead to an improvement in the overall quality of life in this patient population.

Opioid Antagonists: A Review of Their Role in Palliative Care, Focusing on Use in Opioid-Related Constipation

Opioid antagonists have well-established indications in the reversal of life-threatening opioid toxicity, but also hold considerable promise for other applications in palliative care practice, particularly management of opioid-related constipation. We briefly review current understanding of opioid receptors, focusing on their complex role in gastrointestinal physiology. We summarize the pharmacology, conventional indications, and clinical usage of three major groups of opioid antagonists, including a promising new peripherally acting agent, methylnaltrexone, which is not commercially available. We suggest an approach to administering opioid antagonists for reduction of life-threatening opioid toxicity in patients with pain. The literature on opioid-induced constipation and its treatment with opioid-antagonists is reviewed in detail. Finally, other potential uses of opioid antagonists in palliative care are described, especially strategies for reducing such opioid side effects as nausea and pruritus and for improving analgesia or reducing tolerance by concomitantly administrating both an opioid agonist and low dosages of an antagonist.

Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation Critical Care Workgroup.

For critically ill patients and their loved ones, high-quality health care includes the provision of excellent palliative care. To achieve this goal, the healthcare system needs to identify, measure, and report specific targets for quality palliative care for critically ill or injured patients. Our objective was to use a consensus process to develop a preliminary set of quality measures to assess palliative care in the critically ill. We built on earlier and ongoing efforts of the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup to propose specific measures of the structure and process of palliative care. We used an informal iterative consensus process to identify and refine a set of candidate quality measures. These candidate measures were developed by reviewing previous literature reviews, supplementing the evidence base with recently published systematic reviews and consensus statements, identifying existing indicators and measures, and adapting indicators from related fields for our objective. Among our primary sources, we identified existing measures from the Voluntary Hospital Associations Transformation of the ICU program and a government-sponsored systematic review performed by RAND Health to identify palliative care quality measures for cancer care. Our consensus group proposes 18 quality measures to assess the quality of palliative care for the critically ill and injured. A total of 14 of the proposed measures assess processes of care at the patient level, and four measures explore structural aspects of critical care delivery. Future research is needed to assess the relationship of these measures to desired health outcomes. Subsequent measure sets should also attempt to include outcome measures, such as patient or surrogate satisfaction, as the field develops the means to rigorously measure such outcomes. The proposed measures are intended to stimulate further discussion, testing, and refinement for quality of care measurement and enhancement.

Components of Early Outpatient Palliative Care Consultation in Patients with Metastatic Nonsmall Cell Lung Cancer

BACKGROUND Although palliative care consultation is recommended early in the course of oncology treatment, little evidence exists to guide the nature of this intervention. We describe a clinical practice of early palliative care consultation that improved quality of life, mood, and survival in a randomized clinical trial. METHODS As part of a randomized trial of early palliative care versus standard care in patients with newly diagnosed metastatic non-small cell lung cancer (NSCLC), we analyzed documentation of the components of the initial palliative care consultation, self-reported quality of life as measured by the Functional Assessment of Cancer Therapy-Lung Trial Outcome Index (FACT-L TOI), and mood as measured by the Patient Health Questionnaire-9 (PHQ-9). RESULTS Seven palliative care clinicians provided consultation to 67 patients. The median total time spent with patients for the initial visit was 55 minutes (range, 20-120). Consultations focused on symptom management (median, 20 minutes; range, 0-75), patient and family coping (median, 15 minutes; range, 0-78), and illness understanding and education (median, 10 minutes; range, 0-35). Lower quality of life as measured by the FACT-L TOI predicted greater consultation time (odds ratio [OR] 0.95, 95% confidence interval [CI] 0.91-0.99). Additionally, lower quality of life scores on the FACT-L TOI (OR = 0.93, 95% CI = 0.88-0.97) and higher depression scores on the PHQ-9 (OR = 1.15, 95% CI = 1.02-1.31) predicted greater time spent on symptom management. CONCLUSIONS Initial palliative care consultation near the time of diagnosis in patients with metastatic NSCLC in this intervention is nearly an hour in length and largely addresses symptom management, patient and family coping, and illness understanding and education. Lower quality of life predicted longer consultations, with more time dedicated specifically to symptom management.

Phase II study: integrated palliative care in newly diagnosed advanced non-small-cell lung cancer patients.

PURPOSE To assess the feasibility of early palliative care in the ambulatory setting in patients with newly diagnosed advanced non-small-cell lung cancer (NSCLC). PATIENTS AND METHODS Patients were eligible if they had a performance status of 0 to 1 and were within 8 weeks of diagnosis of advanced NSCLC. Participants received integrated care from oncology and palliative care throughout the course of their disease. Participants were scheduled to meet with the palliative care team (PCT) and complete quality-of-life (QOL) and mood questionnaires monthly for 6 months. The study was deemed feasible if 64% of patients completed at least 50% of their scheduled visits and QOL assessments. RESULTS Fifty-one patients were enrolled onto the trial. One died within 72 hours and was not assessable. Ninety percent (95% CI, 0.78 to 0.96) of study participants complied with at least 50% of the palliative care visits. Eight-six percent (95% CI, 0.73 to 0.94) of the participants met the full feasibility requirements by both meeting with the PCT and completing QOL assessments at least 50% of the time. QOL and mood analyses confirmed the high symptom burden in patients with newly diagnosed advanced NSCLC. At least 50% of participants experienced some degree of shortness of breath, cough, difficulty breathing, appetite loss, weight loss, or unclear thinking at their baseline assessment. More than one third of patients had a probable mood disorder at baseline. CONCLUSION Integrated palliative and oncology care is feasible in ambulatory patients with advanced NSCLC.

Teaching and learning end-of-life care: evaluation of a faculty development program in palliative care.

Purpose To evaluate the effectiveness of the Program in Palliative Care Education and Practice (PCEP), an intensive faculty development program at Harvard Medical School. Method PCEP is a two-week program offered annually with two on-site sessions in Boston, MA, and an interim period distance-learning component. Training integrates palliative care clinical skill development, learning theory and teaching methods, and leadership and organizational change. Longitudinal surveys (preprogram, retrospective preprogram, and postprogram) of participants from 2000–03 assessed self-reported preparation in providing and teaching palliative care; teaching and patient care practices; and satisfaction with program. Results The response rate was 96% (n = 149) for Session I and 72% for both Session I and II (n = 113). Questionnaire responses demonstrated statistically significant improvements with large effect sizes (range 0.7–1.8) on nearly all measures. Preparation increased from 3.0 ± 1.1 to 4.2 ± 0.7 for providing end-of-life care (1 = not well prepared, 5 = very well prepared), and from 2.6 ± 1.0 to 4.3 ± 0.7 for teaching this topic. Respondents reported behavioral changes in patient care and teaching; e.g., after the program, 63% noted that, specifically as a result of attending the course, they encouraged learners to reflect on their emotional responses to dying patients, and 57% conducted experiential exercises (e.g., role-play). Eighty-two percent rated the experience as “transformative,” and many responses to open-ended items described powerful learning experiences. Participants rated the program highly (4.9 ± 0.1, 1 = lowest, 5 = highest rating). Conclusions Integrating clinical content with learning about educational methods is an efficient and effective approach to enhancing clinical faculty’s capacity to model and teach clinical care. This program offers an educational model that engages practitioners, stimulates changes in practice, and offers opportunities for reflection and professional revitalization.

Patient Requests for Euthanasia and Assisted Suicide in Terminal Illness: The Role of the Psychiatrist

Psychosocial assessment and treatment are critical elements of care for terminally ill patients who desire hastened death. Most patients, in saying that they want to die, are asking for assistance in living--for help in dealing with depression, anxiety about the future, grief, lack of control, dependence, physical suffering, and spiritual despair. In this article, the authors review current understandings of the psychiatric aspects of requests by terminally ill patients for assisted suicide and euthanasia; describe an approach to the common problems of physical, psychological, social, and spiritual suffering encountered in managing dying patients; and elaborate the functions of the psychiatrist in addressing these problems.

Aggressiveness of care in a prospective cohort of patients with advanced NSCLC.

Optimal end of life care of patients with terminal cancer is poorly understood. In this study, the aggressiveness of care is described in a cohort of patients with newly diagnosed advanced nonsmall‐cell lung cancer (NSCLC).