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.)

Spiritual well-being in patients with advanced heart and lung disease.

OBJECTIVE: The purpose of this study was to evaluate levels of spiritual well-being over time in populations with advanced congestive heart failure (CHF) or chronic obstructive lung disease (COPD). METHOD: In a prospective, longitudinal study, patients with CHF or COPD (each n = 103) were interviewed at baseline and every 3 months for up to 30 months. At each interview, patients completed: the basic faith subscale of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) questionnaire, the Memorial Symptom Assessment Scale (MSAS), the Rand Mental Health Inventory (MHI), the Multidimensional Index of Life Quality (MILQ), the Sickness Impact Profile (SIP), and the Short Portable Mental Health Questionnaire (SPMSQ). RESULT: The mean age was 65 years, 59% were male, 78% were Caucasian, 50% were married, 29% lived alone, and there was no significant cognitive impairment. Baseline median FACIT-Sp score was 10.0 on a scale of 0-16. FACIT-Sp scores did not change over time and multivariate longitudinal analysis revealed higher scores for black patients and lower scores for those with more symptom distress on the MSAS-Global Distress Index (GDI) (both p = 0.02). On a separate multivariate longitudinal analysis, MILQ scores were positively associated with the FACIT-Sp and the MHI, and negatively associated with the MSAS-GDI and the SIP (all p-values < 0.001). SIGNIFICANCE OF RESULTS: In advanced CHF and COPD, spiritual well-being remains stable over time, it varies by race and symptom distress, and contributes to quality of life, in combination with symptom distress, mental health and physical functioning.

Humane terminal extubation reconsidered: the role for preemptive analgesia and sedation.

Patient comfort is not assured by common practices for terminal extubation. Treatment guidelines suggest minimizing dosage of opioids and sedatives. Multiple lines of evidence indicate that clinicians are limited in their ability to recognize distress in such patients and tend to undermedicate patients in distress. Yet suffering of any significant degree should be unacceptable. For painful procedures, such as surgery, the analogous practice of postponing anesthesia until the patient evidences discomfort would never be tolerated. Waiting for signs of suffering before initiating excellent analgesia and sedation inexorably subjects patients to distress. Therefore, when death is inevitable and imminent after extubation, suffering should be anticipated, concerns about respiratory depression dismissed, and vigorous preemptive deep sedation or anesthesia provided.

The need for safeguards in advance care planning.

The recent uproar about Medicare "death panels" draws attention to public and professional concerns that advance care planning might restrict access to desired life-sustaining care. The primary goal of advance care planning is to promote the autonomy of a decisionally incapacitated patient when choices about life-sustaining treatments are encountered, but the safety of this procedure has not received deserved scrutiny. Patients often do not understand their decisions or they may change their mind without changing their advance care directives. Likewise, concordance between patients' wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but most studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may even undermine autonomy by leading to choices that do not reflect patient values, goals, and preferences. Safeguards for advance care planning should be put in place, such as encouraging physicians to err on the side of preserving life when advance care directives are unclear, requiring a trained advisor to review non-emergent patient choices to limit life-sustaining treatment, training of clinicians in conducting such conversations, and structured discussion formats that first address values and goals rather than particular life-sustaining procedures. Key targets for research include: how to improve completion rates for person wanting advance care directives, especially among minorities; more effective and standardized approaches to advance care planning discussions, including how best to present prognostic information to patients; methods for training clinicians and others to assist patients in this process; and systems for assuring that directives are available and up-to-date.

Integrating palliative care in the intensive care unit.

The admission of cancer patients into intensive care units (ICUs) is on the rise. These patients are at high risk for physical and psychosocial suffering. Patients and their families often face difficult end-of-life decisions that highlight the importance of effective and empathetic communication. Palliative care teams are uniquely equipped to help care for cancer patients who are admitted to ICUs. When utilized in the ICU, palliative care has the potential to improve a patient's symptoms, enhance the communication between care teams and families, and improve family-centered decision making. Within the context of this article, we will discuss how palliative care can be integrated into the care of ICU patients and how to enhance family-centered communication; we will also highlight the care of ICU patients at the end of life.

Double effect: a useful rule that alone cannot justify hastening death.

The rule of double effect is regularly invoked in ethical discussions about palliative sedation, terminal extubation and other clinical acts that may be viewed as hastening death for imminently dying patients. Unfortunately, the literature tends to employ this useful principle in a fashion suggesting that it offers the final word on the moral acceptability of such medical procedures. In fact, the rule cannot be applied appropriately without invoking moral theories that are not explicit in the rule itself. Four tenets of the rule each require their own ethical justification. A variety of moral theories are relevant to making judgements in a pluralistic society. Much of the rich moral conversation germane to the rule has been reflected in arguments about physician-assisted suicide and voluntary active euthanasia, but the rule itself has limited relevance to these debates, and requires its own moral justifications when applied to other practices that might hasten death.

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.

Spirituality training for palliative care fellows.

INTRODUCTION: Spirituality is a major domain of palliative medicine training. No data exist on how it is taught, nor is there a consensus about the content or methods of such education. We surveyed palliative medicine fellowship directors in the United States to learn how they teach spirituality, who does the teaching, and what they teach. METHODS: A PubMed () search using the terms "spirituality" and "medical education" was completed. Thirty-two articles outlined spirituality education content and methods in medical schools and residency programs. From these articles, a survey on spirituality education in palliative medicine fellowship training was prepared, pilot-tested, revised, and then distributed by e-mail in June 2004 to the 48 U.S. palliative medicine fellowship directors listed on the American Board of Hospice and Palliative Medicine (AAHPM) website, but excluding the three fellowship programs represented by the authors. Follow-up requests were sent by email twice during the 6-week collection period. The Institutional Review Board at the Medical College of Wisconsin approved the study. RESULTS: Fourteen fellowship directors completed the survey (29% of all programs; 42% of those currently teaching fellows as indicated on the AAHPM website). All programs indicated they taught "spirituality"; 12 of 14 had separate programs for teaching spirituality and 2 of 14 reported they taught spirituality to their fellows but not as a distinct, separate program. All respondents taught the definitions of spirituality and religion, common spiritual issues faced by patients at end of life (which was not defined further), and the role of chaplains and clergy. Chaplains provided spirituality education in all of the responding programs, but other team members were frequently involved. The most common formats for education in the domains of knowledge and attitudes were small group discussion, lecture, and self-study. Small group discussion, supervision, and shadowing a chaplain or other professional were the most common methods used for skills. Faculty written or oral evaluations of fellows were the most common forms of evaluation, with little evidence of more robust assessment methods, such as structured role-play (none of the programs surveyed). CONCLUSIONS: Palliative medicine fellowship programs generally agree on the content of training on spirituality, but have not incorporated robust educational and evaluation methods to ensure that fellows have obtained the desired attitudes, knowledge, and skills to meet the Initial Voluntary Program Standards for Residency Education in Palliative Medicine of the American Board of Hospice and Palliative Medicine. Based on the survey data and results from the literature review, broad recommendations are made to enhance spirituality education.

Creating enduring change: demonstrating the long-term impact of a faculty development program in palliative care.

BACKGROUND: Improved educational and evaluation methods are needed in continuing professional development programs. OBJECTIVE: To evaluate the long-term impact of a faculty development program in palliative care education and practice. DESIGN: Longitudinal self-report surveys administered from April 2000 to April 2005. PARTICIPANTS: Physician and nurse educators from North America and Europe. All program graduates (n = 156) were invited to participate. INTERVENTION: Two-week program offered annually (2000 to 2003) with 2 on-site sessions and 6-month distance-learning period. Learner-centered training addressed teaching methods, clinical skill development, and organizational and professional development. MEASURES: Self-administered survey items assessing behaviors and attitudes related to palliative care teaching, clinical care, and organizational and professional development at pre-, postprogram, and long-term (6, 12, or 18 months) follow-up. RESULTS: Response rates: 96% (n = 149) preprogram, 73% (n = 114) follow-up. Participants reported increases in: time spent in palliative care practice (38% preprogram, 47% follow-up, P < .01); use of learner-centered teaching approaches (sum of 8 approaches used "a lot": preprogram 0.7 +/- 1.1, follow-up 3.1 +/- 2.0, P < .0001); and palliative care topics taught (sum of 11 topics taught "a lot": preprogram 1.6 +/- 2.0, follow-up 4.9 +/- 2.9, P < .0001). Reported clinical practices in psychosocial dimensions of care improved (e.g., assessed psychosocial needs of patient who most recently died: 68% preprogram, 85% follow-up, P = .01). Nearly all (90%) reported launching palliative care initiatives, and attributed their success to program participation. Respondents reported major improvements in confidence, commitment to palliative care, and enthusiasm for teaching. Eighty-two percent reported the experience as "transformative." CONCLUSIONS: This evidence of enduring change provides support for the potential of this educational model to have measurable impact on practices and professional development of physician and nurse educators.

Improving Communication About Serious Illness in Primary Care: A Review.

IMPORTANCE: The Institute of Medicine recently called for systematic improvements in clinician-led conversations about goals, values, and care preferences for patients with serious and life-threatening illnesses. Studies suggest that these conversations are associated with improved outcomes for patients and their families, enhanced clinician satisfaction, and lower health care costs; however, the role of primary care clinicians in driving conversations about goals and priorities in serious illness is not well defined. OBJECTIVE: To present a review of a structured search of the evidence base about communication in serious illness in primary care. EVIDENCE REVIEW: MEDLINE was searched, via PubMed, on January 19, 2016, finding 911 articles; 126 articles were reviewed and selected titles were added from bibliography searches. FINDINGS: Review of the literature informed 2 major topic areas: the role of primary care in communication about serious illness and clinician barriers and system failures that interfere with effective communication. Literature regarding the role that primary care plays in communication focused primarily on the ambiguity about whether primary care clinicians or specialists are responsible for initiating conversations, the benefits of primary care clinicians and specialists conducting conversations, and the quantity and quality of discussions. Timely and effective communication about serious illness in primary care is hampered by key clinician barriers, which include deficits in knowledge, skills, and attitudes; discomfort with prognostication; and lack of clarity about the appropriate timing and initiation of conversations. Finally, system failures in coordination, documentation, feedback, and quality improvement contribute to lack of conversations. CONCLUSIONS AND RELEVANCE: Clinician and system barriers will challenge primary care clinicians and institutions to meet the needs of patients with serious illness. Ensuring that conversations about goals and values occur at the appropriate time for seriously ill patients will require improved training, validation, and dissemination of patient selection tools, systems for conducting and revisiting conversations, accessible documentation, and incentives for measurement, feedback, and continuous improvement.

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.

Training of palliative medicine fellows: a report from the field.

BACKGROUND: The escalating demand for palliative care physicians has led to the proliferation of postgraduate fellowship programs to train physicians in the United States and Canada. There is currently little data regarding the extent to which clinical, research, educational or administrative skills and competencies have been incorporated into fellowship training. OBJECTIVE: The survey aims were to describe: (1) fellows' interests and relative priorities for receiving training in the clinical, educational, research, and administrative aspects of palliative medicine; (2) quantity of training received in each area; (3) fellows' satisfaction with the teaching received in each area; (4) post-fellowship employment experiences. DESIGN: A survey was conducted via mail and in person, with e-mail utilized for reminders. SETTING/SUBJECTS: All palliative medicine fellows from the United States and Canada between 1997 and 2002 were surveyed. MEASUREMENTS: The survey instrument was based on a Health Resources Services Administration (HRSA) survey designed to assess research fellows' educational experiences and training satisfaction and modified to ensure sufficient focus on clinical, education, research and administrative activities; specific palliative medicine content was added. RESULTS: One hundred one fellows from 24 programs were identified; contact information was obtained from program directors for 89 fellows (88%). Sixty-seven valid surveys were received for a response rate of 75%; 22 programs (14 U.S., 8 Canadian, 92% of active fellowships) are represented. The vast majority of fellows (94%) identified clinical training as very important; 63% identified educational training as important and only few (33% and 21%, respectively) identified research or administrative training as very important. Fellows reported receiving less training on research and administrative topics than they did on clinical or educational topics. Sixty-eight percent of fellows reported spending 10% or less of their time on research activities, and subsequently fellows reported low levels of research competence. Fellows were very satisfied with their clinical training (mean rating = 4.51 on a 5-point scale), intermediately satisfied with their educational training (mean rating = 3.61) and less with their research (mean rating = 3.1) and administrative training (mean rating = 2.24). The largest proportion of fellows (73%) described their first post fellowship position as "clinician/educator" or "full time clinician"; only 14% were "clinician/researchers." CONCLUSION: Clinical training appears to be both the focus and strength of most palliative care fellowships surveyed. Fellows appear less interested in educational, research, and administrative training and programs appear to be less focused on these aspects of palliative medicine. Fellows also express a lower level of satisfaction with their training in these areas. The scope of fellowship programs must broaden to provide fellows opportunities to develop the research, education and administrative skills necessary to strengthen the research base of the field and provide academic leadership for the future.

Prevalence and structure of palliative care services in California hospitals.

BACKGROUND: Most Americans die in hospitals where shortcomings in end-of-life care are endemic. Hospital-based palliative care services can improve the care of these patients, yet there are limited data regarding the availability of such services. We sought to determine the prevalence of palliative care services in California hospitals. METHODS: We conducted a cross-sectional survey of a random sample of 25% of all California hospitals. We recorded the percentage of hospitals reporting current or planned palliative care consultation services or inpatient palliative care units. RESULTS: We collected data from 107 (96%) of 112 hospitals. Only 17% of hospitals have a palliative care consult service, and 6% have an inpatient palliative care unit. Nearly all services are multidisciplinary. Twenty percent of hospitals have a contract to provide inpatient hospice beds, 19% have an outpatient-based hospice service affiliated with the hospital, and 74% offer bereavement services. Half of all palliative care services are funded exclusively by the hospital. Thirty-eight hospitals (36%) reported an interest in developing palliative care services. CONCLUSIONS: Few California hospitals currently have palliative care services, though more express interest in developing them. Bereavement and hospice services are more common and offer opportunities for increasing the number of palliative care services in hospitals. Further studies are needed to characterize palliative care services more fully and to assess the quality of care provided by these services.

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.

Changing perspectives on palliative care.

In the United States, hospice and palliative care are two distinct expressions of the hospice interdisciplinary team approach to end-of-life care, which originated in Great Britain in the 1960s. The hospice movement developed largely as a home-care program and alternative to conventional care. Hospice regulations and reimbursement allowances limit services to patients who are expected to die within 6 months and who forego many common oncologic treatments. On the other hand, palliative care is a more recent academic, medically mainstream discipline that attempts to integrate the hospice approach into oncology and other areas of clinical medicine from the earliest phases of diagnosis and treatment. Palliative care entertains all appropriate forms of care at any phase of an illness. In this review, we describe the key goals of palliative care, which include excellent pain and symptom control, psychosocial and spiritual support for the patient and family, informed decision-making, and coordinated services across the continuum of care. We focus on selected recent developments that are important to oncology practice: the role of artificial nutrition; management of malignant small bowel obstruction; communication tasks, such as information sharing, recognition of patient preferences, advanced-care planning, and bereavement care; and ethical principles related to the hastening of death.

A one-day, hospital-wide survey of dying inpatients.

We attempted to identify and briefly follow until discharge all terminally ill patients in a large general hospital. On 1 day, nurse case managers reviewed all hospitalized patients and identified those whom they believed were likely to die in the next 6 months (Category A) or whom might be considered terminally ill but with a longer prognosis (Category B). Twelve percent of all adult and pediatric medical-surgical inpatients were detected, equally divided between the two categories. In Category A, 63% were on the medical service, 7% were receiving intensive care, 54% had cancer, and 46% had do-not-resuscitate (DNR) orders. In Category B, 40% were on the medical service, 10% were in intensive care, 52% had cancer, and only 5% had DNR orders. Case managers expected 6% of identified patients to die in the hospital. After 1 month, at least 19% of identified patients had died (2.3% of the medical-surgical inpatient census on the day of the survey). The average length of stay in both categories, excluding outliers, was 24 days or approximately 4 times the average length of stay for the hospital. Patients who actually died in the hospital had an average length of stay of 62 days. This study presents a simple method for estimating the number of dying patients in a hospital--the target population for a palliative care program--and for determining their location, principal diagnosis, length of stay, and disposition. We present information indicating that the survey underestimates the number of dying hospitalized patients. We discuss possible policy implication of this study, primarily that general hospitals should consider developing specialized palliative care services for this substantial group of inpatients.