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For hospitalized patients whose death is imminent, palliative care can alleviate distressing symptoms that are common during the last few days or weeks of life. The essentials of such care that are presented in this review are intended to provide both generalists and specialists in fields other than palliative care with a practical, evidence-based approach to alleviating these symptoms in patients who are dying in a hospital. Communication skills that are essential to personalized care and goal setting are described briefly; the alleviation of the psychosocial and spiritual suffering that is often faced by terminally ill patients and their families is addressed only incidentally. The term “comfort care” is used here to describe a set of the most basic pallia tive care interventions that provide immediate relief of symptoms in a patient who is very close to death. Typically, these measures are used to achieve comfort for the patient rapidly; diagnostic or therapeutic maneuvers that might be appropriate for palliation in earlier stages of the illness are usually not considered in this context. Many elements of this approach can be used to ease patients’ distress in other phases of a life-threatening illness and in nonhospital settings, and they can also be applied to relieve symptoms in patients with less grave conditions. The Need for Comfort-Care Skills in Hospital Pr actice Although a growing proportion of deaths in the United States now occur at home or in nursing homes, hospitals remain a major site for end-of-life care; in 2010, 29% of deaths occurred in the hospital, and the average terminal admission lasted 7.9 days. 1 Multiple distressing symptoms affect hospitalized patients who have advanced, life-threatening illnesses, 2,3 and some of these symptoms worsen as the patient approaches death. 4 Poorly controlled symptoms have been documented in patients with advanced cancer, congestive heart failure, chronic obstructive pulmonary disease (COPD), and many other life-threatening conditions. 5,6 The meticulous management of distressing symptoms is important in any phase of illness, but it becomes a primary focus near the end of life. 7 Palliative care services can reduce the distress caused by symptoms and improve the quality of life of patients near the end of life. 8 However, the current scarcity of board-certified palliative care specialists — a workforce shortage that is projected to continue far into the future — means that the responsibility for ensuring excellent end-of-life care for dying patients will continue to fall primarily on generalists and on specialists in areas other than palliative care. 9,10 Thus, familiarity with basic comfort measures is an essential skill for all clinicians who are caring for patients whose death is imminent. 7,11

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.

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.)

In this position paper, we outline the essential features for an academic palliative care program. Our goal was to assist both academic palliative care faculty and their stakeholders (department chairmen, deans, and others) in building sustainable high-quality academic palliative care programs. We also provide the background that justifies such an effort. Palliative medicine provides coordinated, interdisciplinary care for a growing population of patients and their families with complex care needs as they face a life-threatening or serious condition. These programs have recently matured in the United States and have become

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

BACKGROUND. 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). METHODS. Patients within 8 weeks of diagnosis of stage IIIb (with effusions) or IV NSCLC were enrolled in a study to examine the feasibility of involving palliative care services early in the provision of cancer care. Participants received standard oncology treatment and integrated palliative care. All patients were followed prospectively to assess anticancer therapy usage, hospital admissions, hospice utilization, and location of death. RESULTS. At the time of analysis, 40/46 (87%) of enrolled patients had died, with a median length of follow-up of 29.3 months. Aggressive care measures in the final month of life included rates of anticancer therapy (40%), emergency department visits (48%), and hospital admissions (50%). Sixty-five percent of patients received hospice care before death, with a median length of stay of 16 days. Patients with heightened baseline anxiety and mood symptoms were more likely to receive anticancer therapy at the end of life compared with those without such symptoms. CONCLUSIONS. This study demonstrates the frequent use of aggressive measures at the end of life among patients with advanced NSCLC in a tertiary care center, as shown by the number of patients receiving anticancer therapy within 30 days of death and brief utilization of hospice services. Further research is needed to identify predictors of aggressive care and to develop interventions enhancing decision-making at the end of life. Cancer 2008. © 2008 American Cancer Society.

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 (QOL), was measured with the Multidimensional Index of Life Quality (MILQ). Potential correlates of QOL included overall symptom burden (Memorial Symptom Assessment Scale, MSAS), including global symptom distress (MSAS Global Distress Index, GDI); psychological state (Mental Health Inventory-5, MHI-5); functional status (Sickness Impact Profile, SIP); spirituality (Functional Assessment of Chronic Illness Therapy-Spirituality Scale, FACIT-Spirituality); 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 (MILQ 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 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.A PubMed (www.pubmed.gov) 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.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).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.

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 Association's 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.

To evaluate the effectiveness of the Program in Palliative Care Education and Practice (PCEP), an intensive faculty development program at Harvard Medical School.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.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).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.

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.

The patient-doctor relationship is arguably the most extraordinary social contract in human history. Two strangers meet in a confidential, unobserved setting that emphasizes their differences: the pain and subjective needs of one contrasted with the professionally defined availability of the other; the scientific naivete and personal orientation of the one contrasted with the highly trained and fiduciary role of the other. Yet within minutes and precisely because one is there as a healer, an incredible evolution occurs. The physician is granted an access, an intimacy, and a candor that the patient would not extend to another human being. A remarkably intense bond is forged, within which information is obtained, analyzed, and exploited for therapeutic advantage. What allows this to happen? At the social level, tradition and experience institutionalize a role that the doctor is allowed to occupy on the basis of designated training and continued technical competence. But at the personal level, the physician’s role is expressed in empathic and deeply caring behavior dedicated to achieving the best possible outcome for the patient. In other words, the effective physician must continually improve skills that foster the remarkable connectedness within which a healing role can be exercised.

Strategically selecting patients for discussions and documentation about limiting life-sustaining treatments—choosing the right time along the end-of-life trajectory for such an intervention and identifying patients at high risk of facing end-of-life decisions—can have a profound impact on the value of advance care planning (ACP) efforts. Timing is important because the completion of an advance directive (AD) too far from or too close to the time of death can lead to end-of-life decisions that do not optimally reflect the patient’s values, goals, and preferences: a poorly chosen target patient population that is unlikely to need an AD in the near future may lead to patients making unrealistic, hypothetical choices, while assessing preferences in the emergency department or hospital in the face of a calamity is notoriously inadequate. Because much of the currently studied ACP efforts have led to a disappointingly small proportion of patients eventually benefitting from an AD, careful targeting of the intervention should also improve the efficacy of such projects. A key to optimal timing and strategic selection of target patients for an ACP program is prognostication, and we briefly highlight prognostication tools and studies that may point us toward high-value AD interventions.

In order to estimate the prevalence of palliative care programs in academic hospitals in the United States, we surveyed a random sample of 100 hospitals in the Council of Teaching Hospitals and Health Systems directory. Sixty percent of hospitals provided information. At least 26% of hospitals had either a palliative care consultation service or inpatient unit and 7% had both. Eighteen percent of hospitals had a palliative care consultation service alone, 19% had an inpatient palliative care unit, 22% reported a hospice affiliation, and 17% had a hospice inpatient contract. Additionally, at least 20% of the remaining hospitals were planning a palliative care program. The consultation services had an average daily census of 6; the inpatient units had an average of 12 beds. Palliative care consultation programs were largely affiliated with departments of medicine or hematology/oncology, and were typically staffed by a physician and a nurse. Only half had a dedicated social worker, one third had a chaplain, one third had a pharmacist, and a few included a bereavement coordinator or volunteer director, suggesting that the hospice model of interdisciplinary care is not being adopted regularly in palliative care programs. In comparison, almost half of hospitals noted established pain services. In conclusion, palliative care programs, although found in a minority of surveyed hospitals, are becoming an established feature of academic medical centers in the United States. More detailed information is needed about the type and quality of care they provide.

We conducted telephone interviews to assess family satisfaction with end-of-life care in the hospital and to gauge the extent of bereavement follow-up. We interviewed 53 relatives or close companions of adults who had died in our hospital within 5 to 12 months, representing 51 of the 153 families of English-speaking patients who had experienced a nontraumatic, nonsudden hospital death over a 4-month period. Overall satisfaction with care and with communication was rated high on the Likert scale (mean 4.3, median 5 for both topics). However, we suggest that this commonly used quantitative evaluation method is inadequate for assessing family satisfaction with terminal care because simple, open-ended questions yielded an array of disturbing problems. We report on the major complaints of the bereaved, which primarily focused on respect for privacy, dignity, and comfort; communication with the family; emergency ward care; attention to advance directives; and bereavement support. We documented that commonly recommended bereavement services were lacking. Over a third of relatives reported no contact with hospital health professionals after the death, and over a quarter of contacts were patient-initiated. Most bereavement follow-up on the part of hospital staff seemed cursory or haphazard, rather than representing a serious and sustained attempt to assess or facilitate bereavement or identify a need for referral. Although 19% of respondents had sought professional help, none had been referred by their physician or the deceased's physician. Hospital-based social workers and chaplains played, at best, a minor role in bereavement follow-up.

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 (eachn = 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) (bothp = 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 (allp-values 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.

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.

Although hospital palliative care consultation services (PCCS) can improve a variety of clinical and nonclinical outcomes, little is known about how these services are structured.We surveyed all 351 acute care hospitals in California to examine the structure and characteristics of those hospitals with PCCS.We achieved a 92% response rate. Thirty-one percent (n=107) of hospitals reported having a PCCS. Teams commonly included physicians (87%), social workers (80%), spiritual care professionals (77%), and registered nurses (71%). Nearly all PCCS were available on-site during weekday business hours; 50% were available on-site or by phone in the weekday evenings and 54% were available during weekend daytime hours. The PCCS saw an average of 347 patients annually (median=310, standard deviation [SD]=217), or 258 patients per clinical full-time equivalent (FTE; median=250, SD=150.3). Overall, 60% of consultation services reported they are struggling to cope with the workload. On average, patients were in the hospital 5.9 days (median=5.5, SD=3.3) prior to referral to PCCS, and remained in the hospital for 6 days (median=4, SD=7.9) following the initial consultation. Patient and family meetings were an aspect of the consultation in 74% of cases. Overall, 21% of consultation patients were discharged home with hospice services and 25% died in the hospital.There is variation in how PCCS in California hospitals are structured and in the ways they engage with patients. Ultimately, linking PCCS characteristics and practices to patient and family outcomes will identify best practices that PCCS can use to maximize quality.

Improving access to palliative care is an important priority for hospitals as they strive to provide the best care and quality of life for their patients. Even in hospitals with longstanding palliative care programs, only a small proportion of patients with life-threatening illnesses receive palliative care services. Our two well-established palliative care programs in large academic hospitals used an innovative quality improvement initiative to broaden access to palliative care services, particularly to noncancer patients.The initiative utilized a combination of electronic and manual screening of medical records as well as intensive outreach efforts to identify two cohorts of patients with life-threatening illnesses who, according to University HealthSystems Consortium (UHC) benchmarking criteria, would likely benefit from palliative care consultation. Given the differing cultures and structure of the two institutions, each service developed a unique protocol for identifying and consulting on suitable patients.Consultation rates in the target populations tripled following the initiative: from 16% to 46% at one hospital and from 15% to 48% at the other. Although two different screening and identification processes were developed, both successfully increased palliative care consultations in the target cohorts.Quality improvement strategies that incorporate pay-for-performance incentives can be used effectively to expand palliative care services to underserved populations.

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.

This is a three-part article that reviews the literature on end-of-life family meetings in intensive care, focused on situations when the patient cannot participate. Family meetings in end-of-life care, especially when conducted prophylactically or proactively, have been shown to be effective procedures for improving family and staff satisfaction and even reducing resource utilization. The first part of the article outlines the family needs that should be addressed in such meetings, including clinician availability, consistent information sharing (especially of prognosis), empathic communication and support, facilitation of bereavement, and trust. The second part addresses family-centered, shared decision making and sources of conflict, as well as related communication and negotiation skills and how to end the meeting. Families and clinicians differ in 1) their understanding of the patient's condition and prognosis; 2) the emotional impact of the illness, particularly the personal meaning of pursuing recovery or limiting supports; and 3) their views of how to make decisions about life-prolonging treatments. The final part draws on the previous two sections to present a structured format and guide for communication skills in conflictual meetings. Ten steps for a humane and effective meeting are suggested, illustrated with sample conversations.

In current medical practice, excessive or reflexive deference to an unreflective concept of patient autonomy may inadvertently compromise patient autonomy by placing unwanted and unreasonable responsibility for technical medical decisions on patients or their surrogate decision makers rather than on their physicians. Such practices can harm patients by depriving them of the expert, professional advice they both need and deserve to make important decisions about their health care. We describe herein how the patient-physician relationship has evolved in recent decades as more life-sustaining and life-saving treatments, such as cardiopulmonary resuscitation, have become available. We then examine respect for patient autonomy and describe how patient autonomy can be promoted while the physician's responsibility for technical medical decisions is simultaneously affirmed. The patient is the expert on his or her values, goals, and preferences, while the physician is the expert on the medical means for honoring the patient's perspective. We conclude that an intervention, such as cardiopulmonary resuscitation, should not be offered when, based on the patient's own criteria, it promises no physical or psychosocial benefit or would be far more harmful than beneficial.

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.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).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.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.

Residents struggle with advance care planning (ACP) discussions in the inpatient setting, and may not be aware of newer models for ACP that stress the importance of giving prognostic information and making a recommendation about cardiopulmonary resuscitation to patients and families.A controlled study of a cognitive model for ACP embedded in a quality improvement (QI) project.In the setting of a QI project for medical residents and interdisciplinary staff, we developed and implemented a cognitive model of ACP discussions that involved two types of meetings for patients: (1) information-sharing meetings for seriously ill but clinically stable patients and (2) decision-making meetings for clinically unstable patients. Patients on the intervention floor were significantly more likely to have a discussion about goals of care (33.8%) than patients on the control floor (21.2%, p = 0.001) and significantly more likely to have a limitation of life-sustaining treatment upon discharge (19.1% vs. 13.9%, p = 0.04).For both residents and interdisciplinary staff, application of a cognitive model that clearly defines goals and expectations for ACP discussions prior to meeting with patients and families improves rates of ACP discussions.

Small group learning (i.e., tutorial, seminar, or small problem-solving class) is uniquely suited to transformative change as the ultimate goal of education, and especially appropriate for use in teaching about palliative care. The small group can be a fertile environment for both individual and communal development on both personal and professional levels by recognizing the unique needs of small group facilitation, and developing necessary faculty skills, and by modeling thoughtful preparation, reflective execution, and perceptive feedback. The small group learning approach focuses on learning facilitation and enhancing students' communications skills, which are vital to providing effective, patient-centered palliative care.

Context. In 2000, 17% of California hospitals offered palliative care (PC) services. Since then, hospital-based PC programs have become increasingly common, and preferred practices for these services have been proposed by expert consensus. Objectives. We sought to examine the prevalence of PC programs in California, their structure, and the hospital characteristics associated with having a program. Methods. A total of 351 acute care hospitals in California completed a survey that determined the presence of and described the structure of PC services. Logistic regression identified hospital characteristics associated with having a PC program. Results. A total of 324 hospitals (92%) responded, of which 44% (n ¼141) reported having a PC program. Hospitals most likely to have PC programs were large nonprofit facilities that belonged to a health system, had teaching programs, and had participated in a training program designed to promote development of PC services. Investor-owned sites (odds ratio [OR] ¼ 0.08; 95% confidence interval [CI] ¼ 0.03, 0.2) and city/county facilities (OR ¼0.06; 95% CI¼ 0.01, 0.3) were less likely to have a PC program. The most common type of PC service was an inpatient consultation service (88%), staffed by a physician (87%), social worker (81%), chaplain (76%), and registered nurse (74%). Most programs (71%, n¼ 86) received funding from the hospital and were expected to meet goals set by the hospital or health system. Conclusion. Although the number of hospital-based PC services in California has doubled since 2000, more than half of the acute care hospitals still do not provide PC services. Developing initiatives that target small, public, and investorowned hospitals may lead to wider availability of PC services. J Pain Symptom

AFTER TURNING AWAY from a long-imagined career as an English teacher, I entered the family business (medicine). Medical school and residency were both engaging and plagued with considerable uncertainty about where I was heading and how I fit in with the profession. It was also punctuated by a year as a hippie. I was attracted to international health and social medicine, but particularly enjoyed settings such as ambulatory care and psychiatry, where a personal understanding of patients’ lives was valued. Finishing my internal medicine training in 1975, which included a part-time fellowship in psychosomatic medicine, I took a position at Massachusetts General Hospital (MGH). My new job allowed me to continue my interest in the doctor–patient relationship, working with an outstanding role model, John Stoeckle. In addition, I was able to practice primary care medicine in one of the hospital’s neighborhood health clinics in a poor underserved community. Almost by chance, on my first day at this first job, I took over responsibility for two homebound patients, and did my first house calls. I was fascinated by the devotion of the family members: one was a frail, elderly woman who was caring for her demented and sometime violent husband; the other a middle-age bachelor son who had many siblings but was alone caring for his demented mother. I was able to help these caregivers continue their labor, mostly through my simple presence (plus a few technical skills). I also was amazed at how my appreciation of their work and my reassurance that they were doing the right thing for their loved ones helped them better endure and carry on in a very difficult and stressful situation. Another physician–mentor, Roger Sweet, piqued my interest in the skill set required to manage a death at home, and thus launched my career in hospice and palliative care. A small but steadily growing cohort of patients who died at home fostered my clinical expertise in end-of-life care, provided an intellectual challenge and also opportunity for me to become an institutional leader

Creating enduring change, both in clinician behavior and patient outcomes, is the overarching goal of continuing education in the health professions. Current methods of education and evaluation, however, often show disappointing results in achieving meaningful and lasting change among clinicians in practice.1,2 With some notable exceptions,3,4 continuing professional education programs tend to be limited in scope and method: most address narrowly defined clinical content, and most are delivered using noninteractive teaching methods that have been shown to lack effectiveness in generating learning and change.5–9 Evaluation methods also tend to be restricted in range, relying on satisfaction measures or single group, conventional pre- and postdesigns measuring short term and possibly transient outcomes, thus limiting generalizability and validity of the results.2,10–12 Improving professional education is of particular concern in the rapidly growing field of palliative care, where the need for leaders in clinical care and education far outweighs supply,13–15 and, except for full-time fellowship programs, there are relatively few educational experiences available for clinicians.3,16,17 Deficiencies in care for the dying have been well-documented,18,19 and national organizations have endorsed palliative care as a priority for training.20–29 This report describes an evaluation of the long-term impact of the Harvard Medical School Program in Palliative Care Education and Practice (PCEP), an intensive, learner-centered, interdisciplinary faculty development program that aims to build the field of palliative care by enhancing clinical expertise, pedagogic competencies, and organizational skills among a cadre of physician and nurse educators. The program is distinguished by its close integration of clinical and educational skills training, attention to the broad sweep of professional practice, including organizational change and professional development, and emphasis on affective, interactive, and relational dimensions of clinical work and teaching. In a study of short-term outcomes of PCEP, we found statistically significant improvements with large effect sizes in educational practice, attitudes, and self-reported preparation to provide and teach end-of-life care.30 Because the real merit of an educational program lies in its lasting impact on learners, we carried out a long-term follow-up of graduates, assessing preprogram, immediate postprogram, and long-term (6, 12, or 18 months) outcomes in: (1) palliative care teaching behaviors and attitudes; (2) clinical practice and self-assessed competencies; (3) palliative care program development and organizational change; and (4) professional development activities and attitudes related to palliative care.

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.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.A survey was conducted via mail and in person, with e-mail utilized for reminders.All palliative medicine fellows from the United States and Canada between 1997 and 2002 were surveyed.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.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."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.

Physicians care for many dying patients but how do they learn to deal with this profound human event? Drs. Susan Block and J. Andrew Billings discuss a preclinical course designed to guide medical students toward becoming better caregivers for the dying.

Chemotherapy Toxicity or Disease Progression? How Can We Help Patients Understand What’s Happening to Them? (TH331) Cancer SIG Eric Prommer, MD FAAHPM, Mayo Clinic Arizona, Phoenix, AZ. Thomas Smith, MD, Johns Hopkins Medical Institutions, Baltimore, MD. Paul Glare, MBBS FACP FRACP, Memorial Sloan-Kettering Cancer Center, New York, NY. Esme Finlay, MD, University of New Mexico/ New Mexico VA Medical Center, Albuquerque, NM. (All authors listed above had no relevant financial relationships to disclose with the following exceptions: Glare is on the advisory board for Archimedes Pharmaceuticals and speakers’ bureau for Asante Communications and received an honorarium; Finlay has stock with Merck.)

The challenges of caring for a dying doctor reflect both common issues in helping the terminally ill and unique problems in working with a physician-patient. The dying doctor must deal with a familiar environment and set of problems from a radically different perspective and must negotiate overlapping and conflicting personal and professional roles. Some of the cardinal virtues of physicians--professional identity, expertise, perfectionism, selflessness, and stoicism--may pose both strengths and liabilities in the patient's role. The treating physicians may also encounter new strains in caring for a colleague. They must guard against both overinvolvement and underinvolvement, and, as with all dying persons, they must serve as a guide through unfamiliar territory for dying patient and family--a companion who is not afraid to listen to or explore the most upsetting matters, a person who can speak frankly when others may be ignoring "the horse on the dining room table." The case of Dr B, an internist dying of myelofibrosis and congestive heart failure, whose son is also a physician, offers the reader the opportunity to reflect on these challenges and to draw lessons about how to best care for fellow physicians at a time of great need. We suggest strategies for negotiating the patient-physician relationship when the patient is also a physician.

We present a description of a one-year palliative care fellowship training program for physicians at the Massachusetts General Hospital. We provide background information on the Palliative Care Service, and offer an overview of the educational content and methods for fellowship training, focusing especially on psychosocial aspects of care. The medical background and post-training positions of fellows are described. This document is meant to assist other palliative care fellowship programs in developing their curricula and possibly to serve as an initial template for creating educational standards and for identifying outcome measures for educational evaluation of such programs.

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.

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.

Initial voluntary standards for fellowship programs in palliative medicine were developed through a collaborative process involving the directors of fellowship training programs, the American Academy of Hospice and Palliative Medicine (AAHPM), and the American Board of Hospice and Palliative Medicine (ABHPM). These groups worked with a consultant and representatives from the American Board of Medical Specialties (ABMS) and the Accreditation Council for Graduate Medical Education (ACGME) to create a training structure for the programs that will maximize the likelihood for recognition and accreditation of the subspecialty. An accreditation group modeled after an ACGME residency review committee will be formed to review and adopt the standards, then accredit programs voluntarily.