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1.  Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: A report from the IPAL-ICU Project (Improving Palliative Care in the ICU)* 
Critical Care Medicine  2010;38(9):1765-1772.
To describe models used in successful clinical initiatives to improve the quality of palliative care in critical care settings.
Data Sources
We searched the MEDLINE database from inception to April 2010 for all English language articles using the terms “intensive care,” “critical care,” or “ICU” and “palliative care”; we also hand-searched reference lists and author files. Based on review and synthesis of these data and the experiences of our interdisciplinary expert Advisory Board, we prepared this consensus report.
Data Extraction and Synthesis
We critically reviewed the existing data with a focus on models that have been used to structure clinical initiatives to enhance palliative care for critically ill patients in intensive care units and their families.
There are two main models for intensive care unit–palliative care integration: 1) the “consultative model,” which focuses on increasing the involvement and effectiveness of palliative care consultants in the care of intensive care unit patients and their families, particularly those patients identified as at highest risk for poor outcomes; and 2) the “integrative model,” which seeks to embed palliative care principles and interventions into daily practice by the intensive care unit team for all patients and families facing critical illness. These models are not mutually exclusive but rather represent the ends of a spectrum of approaches. Choosing an overall approach from among these models should be one of the earliest steps in planning an intensive care unit–palliative care initiative. This process entails a careful and realistic assessment of available resources, attitudes of key stakeholders, structural aspects of intensive care unit care, and patterns of local practice in the intensive care unit and hospital. A well-structured intensive care unit–palliative care initiative can provide important benefits for patients, families, and providers.
PMCID: PMC3267548  PMID: 20562699
intensive care; critical care; palliative care
2.  Palliative oncology: identity, progress, and the path ahead 
Annals of Oncology  2012;23(Suppl 3):43-48.
Palliative care is a rapidly growing subspecialty of medicine entailing expert and active assessment, evaluation and treatment of the physical, psychological, social and spiritual needs of patients and families with serious illnesses. It provides an added layer of support to the patient's regular medical care. As cancer is detected earlier and its treatments improve, palliative care is increasingly playing a vital role in the oncology population. Because of these advances in oncology, the role of palliative care services for such patients is actively evolving. Herein, we will highlight emerging paradigms in palliative care and attempt to delineate key education, research and policy areas that lie ahead for the field of palliative oncology. Despite the critical need for improving multi-faceted and multi-specialty symptom management and patient–physician communication, we will focus on the interface between palliative care and oncology specialists, a relationship that can lead to better overall patient care on all of these levels.
PMCID: PMC3493143  PMID: 22628415
palliative care; oncology; research policy; evidence-based medicine
3.  Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback 
Quality & Safety in Health Care  2006;15(4):264-271.
To develop a practical set of measures for routine monitoring, performance feedback, and improvement in the quality of palliative care in the intensive care unit (ICU).
Use of an interdisciplinary iterative process to create a prototype “bundle” of indicators within previously established domains of ICU palliative care quality; operationalization of indicators as specified measures; and pilot implementation to evaluate feasibility and baseline ICU performance.
The national Transformation of the Intensive Care Unit program developed in the United States by VHA Inc.
Critically ill patients in ICUs for 1, >3, and >5 days.
Measurements and main results
Palliative care processes including identification of patient preferences and decision making surrogates, communication between clinicians and patients/families, social and spiritual support, and pain assessment and management, as documented in medical records. Application is triggered by specified lengths of ICU stay. Pilot testing in 19 ICUs (review of >100 patients' records) documented feasibility, while revealing opportunities for quality improvement in clinician‐patient/family communication and other key components of ICU palliative care.
The new bundle of measures is a prototype for routine measurement of the quality of palliative care in the ICU. Further investigation is needed to confirm associations between measured processes and outcomes of importance to patients and families, as well as other aspects of validity.
PMCID: PMC2564022  PMID: 16885251
intensive care; critical care; palliative care; quality indicators; communication; pain measurement
4.  Integration of Palliative Medicine Into Routine Oncological Care: What Does the Evidence Show Us? 
Journal of Oncology Practice  2011;7(6):350-354.
There is phase III evidence that formal assessment of patients' symptoms and quality of life can lead to measurable improvements in quality of life. Quality of life assessments using validated tools should become routine in cancer centers.
Palliative medicine is now a recognized medical subspecialty. The goal of palliative medicine is to prevent and relieve suffering, and to support the best possible quality of life for patients and their families, regardless of the stage of their illness.1 Typically, palliative medicine teams consist of multiple disciplines (such as physicians, advanced practice nurses, social workers, and chaplains) to address several domains of the patient experience. Medical oncologists have routinely provided palliative care to their patients along with antineoplastic therapy. Nevertheless, there is a recognized need for an improvement in palliative care delivery to the patient with advanced cancer. This narrative review outlines recent clinical trials of palliative care being integrated into routine oncological care.
PMCID: PMC3219458  PMID: 22379414
5.  Conceptual Models for Integrating Palliative Care at Cancer Centers 
Journal of Palliative Medicine  2012;15(11):1261-1269.
Palliative care programs are rapidly evolving in acute care facilities. Increased and earlier access has been advocated for patients with life-threatening illnesses. Existing programs would need major growth to accommodate the increased utilization. The objective of this review is to provide an update on the current structures, processes, and outcomes of the Supportive and Palliative Care Program at the University of Texas M.D. Anderson Cancer Center (UTMDACC), and to use the update as a platform to discuss the challenges and opportunities in integrating palliative and supportive services in a tertiary care cancer center. Our interprofessional program consists of a mobile consultation team, an acute palliative care unit, and an outpatient supportive care clinic. We will discuss various metrics including symptom outcomes, quality of end-of-life care, program growth, and financial issues. Despite the growing evidence to support early palliative care involvement, referral to palliative care remains heterogeneous and delayed. To address this issue, we will discuss various conceptual models and practical recommendations to optimize palliative care access.
PMCID: PMC3533890  PMID: 22925157
6.  CCC meets ICU: Redefining the role of critical care of cancer patients 
BMC Cancer  2010;10:612.
Currently the majority of cancer patients are considered ineligible for intensive care treatment and oncologists are struggling to get their patients admitted to intensive care units. Critical care and oncology are frequently two separate worlds that communicate rarely and thus do not share novel developments in their fields. However, cancer medicine is rapidly improving and cancer is eventually becoming a chronic disease. Oncology is therefore characterized by a growing number of older and medically unfit patients that receive numerous novel drug classes with unexpected side effects.
All of these changes will generate more medically challenging patients in acute distress that need to be considered for intensive care. An intense exchange between intensivists, oncologists, psychologists and palliative care specialists is warranted to communicate the developments in each field in order to improve triage and patient treatment. Here, we argue that "critical care of cancer patients" needs to be recognized as a medical subspecialty and that there is an urgent need to develop it systematically.
As prognosis of cancer improves, novel therapeutic concepts are being introduced and more and more older cancer patients receive full treatment the number of acutely ill patients is growing significantly. This development a major challenge to current concepts of intensive care and it needs to be redefined who of these patients should be treated, for how long and how intensively.
PMCID: PMC2992522  PMID: 21059210
7.  In their own words: Patients and families define high-quality palliative care in the intensive care unit* 
Critical Care Medicine  2010;38(3):808-818.
Although the majority of hospital deaths occur in the intensive care unit and virtually all critically ill patients and their families have palliative needs, we know little about how patients and families, the most important “stakeholders,” define high-quality intensive care unit palliative care. We conducted this study to obtain their views on important domains of this care.
Qualitative study using focus groups facilitated by a single physician.
A 20-bed general intensive care unit in a 382-bed community hospital in Oklahoma; 24-bed medical–surgical intensive care unit in a 377-bed tertiary, university hospital in urban California; and eight-bed medical intensive care unit in a 311-bed Veterans’ Affairs hospital in a northeastern city.
Randomly-selected patients with intensive care unit length of stay ≥5 days in 2007 to 2008 who survived the intensive care unit, families of survivors, and families of patients who died in the intensive care unit.
Measurements and Main Results
Focus group facilitator used open-ended questions and scripted probes from a written guide. Three investigators independently coded meeting transcripts, achieving consensus on themes. From 48 subjects (15 patients, 33 family members) in nine focus groups across three sites, a shared definition of high-quality intensive care unit palliative care emerged: timely, clear, and compassionate communication by clinicians; clinical decision-making focused on patients’ preferences, goals, and values; patient care maintaining comfort, dignity, and personhood; and family care with open access and proximity to patients, interdisciplinary support in the intensive care unit, and bereavement care for families of patients who died. Participants also endorsed specific processes to operationalize the care they considered important.
Efforts to improve intensive care unit palliative care quality should focus on domains and processes that are most valued by critically ill patients and their families, among whom we found broad agreement in a diverse sample. Measures of quality and effective interventions exist to improve care in domains that are important to intensive care unit patients and families.
PMCID: PMC3267550  PMID: 20198726
intensive care; critical care; palliative care; quality assessment; health care; quality indicators; qualitative research
8.  Integrating Palliative Care in the ICU 
Palliative care is increasingly recognized as an integral component of comprehensive intensive care for all critically ill patients, regardless of prognosis, and for their families. Here we discuss the key role that nurses can and must continue to play in making this evidence-based paradigm a clinical reality across a broad range of ICUs. We review the contributions of nurses to implementation of ICU safety initiatives as a model that can be applied to ICU palliative care integration. We focus on the importance of nursing involvement in design and application of work processes that facilitate this integration in a systematic way, including processes that ensure the participation of nurses in discussions and decision making with families about care goals. We suggest ways that nurses can help to operationalize an integrated approach to palliative care in the ICU and to define their own essential role in a successful, sustainable ICU palliative care improvement effort. Finally, we identify resources including The IPAL-ICU Project™, a new initiative by the Center to Advance Palliative Care that can assist nurses and other healthcare professionals to move such efforts forward in diverse critical care settings.
PMCID: PMC3162372  PMID: 21874122
intensive care; nurse's role; palliative care
9.  Discharge Planning for Palliative Care Patients: A Qualitative Analysis 
Journal of Palliative Medicine  2011;14(1):65-69.
For patients hospitalized with life-threatening illnesses and their families, palliative care consultants can provide critical support by providing information about prognosis, ensuring that symptoms are managed, helping to clarify goals of care, and addressing psychosocial and spiritual concerns. However, once patients leave the hospital, many hospital-based palliative care teams (PCTs) cannot continue to play active roles in patient care. Gaps in discharge planning not only decrease quality of life for patients, but also translate into lack of support for caregivers. The palliative care population would be expected to benefit from a customized approach to hospital discharge. The aim of this study was to identify the range of health care experiences of family caregivers and patients who received palliative care consultations after they left the hospital, and to understand how PCTs might best prepare patients and caregivers for the post-hospital experience.
PMCID: PMC3021325  PMID: 21244256
10.  Integrating palliative care in the surgical and trauma intensive care unit: A report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care 
Critical Care Medicine  2012;40(4):1199-1206.
Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit.
Data Sources
We searched the MEDLINE database from inception to May 2011 for all English language articles using the term “surgical palliative care” or the terms “surgical critical care,” “surgical ICU,” “surgeon,” “trauma” or “transplant,” and “palliative care” or “end-of- life care” and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report.
Data Extraction and Synthesis
We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families.
Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. “Consultative,” “integrative,” and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to attitudinal factors and “culture” in the unit and institution. Approaches that emphasize delivery of palliative care together with surgical critical care hold promise to better integrate palliative care into the surgical intensive care unit.
PMCID: PMC3307874  PMID: 22080644
end-of-life care; ICU palliative care; surgeon attitude; surgical intensive care; surgical outcome; surgical palliative care
11.  Development and evaluation of an interprofessional communication intervention to improve family outcomes in the ICU☆, ☆☆ 
Contemporary clinical trials  2012;33(6):10.1016/j.cct.2012.06.010.
The intensive care unit (ICU), where death is common and even survivors of an ICU stay face the risk of long-term morbidity and re-admissions to the ICU, represents an important setting for improving communication about palliative and end-of-life care. Communication about the goals of care in this setting should be a high priority since studies suggest that the current quality of ICU communication is often poor and is associated with psychological distress among family members of critically ill patients. This paper describes the development and evaluation of an intervention designed to improve the quality of care in the ICU by improving communication among the ICU team and with family members of critically ill patients. We developed a multi-faceted, interprofessional intervention based on self-efficacy theory. The intervention involves a “communication facilitator” – a nurse or social worker – trained to facilitate communication among the interprofessional ICU team and with the critically ill patient’s family. The facilitators are trained using three specific content areas: a) evidence-based approaches to improving clinician–family communication in the ICU, b) attachment theory allowing clinicians to adapt communication to meet individual family member’s communication needs, and c) mediation to facilitate identification and resolution of conflict including clinician–family, clinician–clinician, and intra-family conflict. The outcomes assessed in this randomized trial focus on psychological distress among family members including anxiety, depression, and post-traumatic stress disorder at 3 and 6 months after the ICU stay. This manuscript also reports some of the lessons that we have learned early in this study.
PMCID: PMC3823241  PMID: 22772089
Communication; Palliative care; Critical care; Randomized trial
12.  Communication in End-Stage Cancer: Review of the Literature and Future Research 
Journal of health communication  2009;14(0 1):95-108.
Concerns have been raised about the quality of life and healthcare received by cancer patients at the end-of-life (EOL). Many patients die with pain and other distressing symptoms inadequately controlled, receiving burdensome, aggressive care that worsens quality of life and limits patient exposure to palliative care, such as hospice. Patient-physician communication is likely a very important determinate of EOL care. EOL discussions with physicians are associated with an increased likelihood of: 1. acknowledgement of terminal illness, 2. preferences for comfort care over life-extension, and 3. receipt of less intensive, life-prolonging and more palliative EOL care; while this appears to hold for white patients, it is less clear for black, advanced cancer patients. These results highlight the importance of communication in determining EOL cancer care and suggest that communication disparities may contribute to black-white differences in the EOL care. We review the pertinent literature and discuss areas for future research.
PMCID: PMC3779876  PMID: 19449273
13.  Lung cancer physicians’ referral practices for palliative care consultation 
Annals of Oncology  2011;23(2):382-387.
Integration of palliative care with standard oncologic care improves quality of life and survival of lung cancer patients. We surveyed physicians to identify factors influencing their decisions for referral to palliative care.
We provided a self-administered questionnaire to physicians caring for lung cancer patients at five medical centers. The questionnaire asked about practices and views with respect to palliative care referral. We used multiple regression analysis to identify predictors of low referral rates (<25%).
Of 155 physicians who returned survey responses, 75 (48%) reported referring <25% of patients for palliative care consultation. Multivariate analysis, controlling for provider characteristics, found that low referral rates were associated with physicians’ concerns that palliative care referral would alarm patients and families [odds ratio (OR) 0.45, 95% confidence interval (CI) 0.21–0.98], while the belief that palliative care specialists have more time to discuss complex issues (OR 3.07, 95% CI 1.56–6.02) was associated with higher rates of referral.
Although palliative care consultation is increasingly available and recommended throughout the trajectory of lung cancer, our data indicate it is underutilized. Understanding factors influencing decisions to refer can be used to improve integration of palliative care as part of lung cancer management.
PMCID: PMC3265546  PMID: 21804051
lung cancer; palliative care; physician; survey
14.  Care of Terminally Ill Cancer Patients: An Intensivist’s Dilemma 
Background and Context:
Treatment of terminally ill cancer patients always poses great challenges especially when these critical patients are admitted in intensive care unit (ICU). The severity of their diseases throws a clinical and ethical dilemma to the treating intensivist.
Aims and Objectives:
To evaluate the benefits of intensive care treatment in terminally ill cancer patients and also to find out whether optimal utilization of critical care resources has got any positive financial, psychological and clinical outcome.
Materials and Methods:
A retrospective evaluation of 53 terminally ill cancer patients, who got admitted to ICU of our department, was carried out. Majority of these patients presented with terminal phase of illness involving multi-organ pathologies with diverse range of symptoms. These patients were provided ventilatory, symptomatic and supportive treatment on patient-to-patient basis. Strict and vigilant monitoring of all vital parameters was carried out. At the end of study, all the data was compiled systematically and was subjected to statistical analysis using non parametric tests.
The demographic profile of such patients was highly variable with regard to educational, social and financial status (P<0.05). The most common group of cancer was hematological malignancies (24.53%) followed by lung cancer (18.87%), uteri-ovarian (15.09), colorectal (13.2%) and others. Significant number (P<0.05) of patients (64.15%) required mechanical ventilation and ionotropic support (79.24%). Mortality increased with increasing number of organ system involvement and reaching up to 100% with involvement of 5 or more organ systems.
ICU care is the best form of treatment for terminally ill but resources should be used optimally so that a young deserving patient should not be sacrificed for the scarcity of resources.
PMCID: PMC3144437  PMID: 21811354
Cancer; Intensive care; Mechanical ventilation; Respiratory failure; Terminally ill
15.  Enhancing family physician capacity to deliver quality palliative home care 
Canadian Family Physician  2008;54(12):1703-1703.e7.
Family physicians face innumerable challenges to delivering quality palliative home care to meet the complex needs of end-of-life patients and their families.
To implement a model of shared care to enhance family physicians’ ability to deliver quality palliative home care, particularly in a community-based setting.
Family physicians in 3 group practices (N = 21) in Ontario’s Niagara West region collaborated with an interprofessional palliative care team (including a palliative care advanced practice nurse, a palliative medicine physician, a bereavement counselor, a psychosocial-spiritual advisor, and a case manager) in a shared-care partnership to provide comprehensive palliative home care. Key features of the program included systematic and timely identification of end-of-life patients, needs assessments, symptom and psychosocial support interventions, regular communication between team members, and coordinated care guided by outcome-based assessment in the home. In addition, educational initiatives were provided to enhance family physicians’ knowledge and skills.
Because of the program, participants reported improved communication, effective interprofessional collaboration, and the capacity to deliver palliative home care, 24 hours a day, 7 days a week, to end-of-life patients in the community.
PMCID: PMC2602612  PMID: 19074714
16.  The Palliative Care Model for Emergency Department Patients with Advanced Illness 
Journal of Palliative Medicine  2011;14(8):945-950.
Large gaps in the delivery of palliative care services exist in the outpatient setting, where there is a failure to address goals of care and to plan for and treat predictable crises. While not originally considered an ideal environment to deliver palliative care services, the emergency department presents a key decision point at which providers set the course for a patient's subsequent trajectory and goals of care. Many patients with serious and life-threatening illness present to emergency departments because symptoms, such as pain or nausea and vomiting, cannot be controlled at home, in an assisted living facility, or in a provider's office. Even for patients in whom goals of care are clear, families often need support for their loved one's physical as well as mental distress. The emergency department is often the only place that can provide needed interventions (e.g., intravenous fluids or pain medications) as well as immediate access to advanced diagnostic tests (e.g. computed tomography or magnetic resonance imaging).
Palliative care services provide relief of burdensome symptoms, attention to spiritual and social concerns, goal setting, and patient–provider communication that are often not addressed in the acute care setting. While emergency providers could provide some of these services, there is a knowledge gap regarding palliative care in the emergency department setting. Emergency department-based palliative care programs are currently consultations for symptoms and/or goals of care, and have been initiated both by both the palliative care team and palliative care champions in the emergency department. Some programs have focused on the provision of hospice services through partnerships with hospice providers, which can potentially help emergency department providers with disposition.
Although some data on pilot programs are available, optimal models of delivery of emergency department-based palliative care have not been rigorously studied. Research is needed to determine how these services are best organized, what affect they will have on patients and caregivers, and whether they can decrease symptom burden and health care utilization.
PMCID: PMC3180760  PMID: 21767164
17.  Palliative Care and Hospice in Advanced Heart Failure 
Advanced heart failure (HF) is a disease process that carries a high burden of symptoms, suffering, and death. Palliative care can complement traditional care to improve symptom amelioration, patient-caregiver communication, emotional support, and medical decision making. Despite a growing body of evidence supporting the integration of palliative care into the overall care of patients with HF and some recent evidence of increased use, palliative therapies remain underused in the treatment of advanced HF. Review of the literature reveals that although barriers to integrating palliative care are not fully understood, difficult prognostication combined with caregiver inexperience with end-of-life issues specific to advanced HF is likely to contribute. In this review, we have outlined the general need for palliative care in advanced HF, detailed how palliative measures can be integrated into the care of those having this disease, and explored end-of-life issues specific to these patients.
PMCID: PMC3786355  PMID: 21875515
Advanced heart failure; Palliative care; Hospice; End-of-life
18.  The need for hospital-based neonatal palliative care programs in Saudi Arabia 
Annals of Saudi Medicine  2009;29(5):337-341.
The terms palliative care, supportive care, and comfort care are used to describe individualized care that can provide a dying person the best quality of life until the end. The term “end-of-life care” is also used in a general sense to refer to all aspects of care of a patient with a potentially fatal condition. While the concept of palliative care is not new, it has only recently been applied to the neonatal population. To the best of our knowledge, none of the neonatal intensive care units (NICUs) in Saudi Arabia have adopted a neonatal program for palliative care. We believe the main reason is lack of knowledge of such programs and the fear of being accused of being heartless and cruel by providing comfort care for dying babies. Comfort care begins with the diagnosis of a life-threatening/terminal condition, and continues throughout the course of illness regardless of the outcome. In this perspective, our aim is to introduce these programs for caregivers in the NICUs in Saudi Arabia. For this purpose, we have reviewed the current recommendations in establishing neonatal palliative care programs and discussed some of the social and religious aspects pertaining to this issue.
PMCID: PMC2860398  PMID: 19700889
19.  Impact of Chronic Critical Illness on the Psychological Outcomes of Family Members 
AACN advanced critical care  2010;21(1):80-91.
The uncertain trajectory of chronic critical illness exposes the patient’s family to heightened levels of psychological distress. Symptoms of psychological distress affect more than half of family members exposed to the patient’s chronic critical illness. Although symptoms often dissipate over time, a significant proportion of family members will remain at moderate to high risk for psychological distress well after the patient’s death or discharge from the intensive care unit. Family members of chronically critically ill (CCI) patients are often involved in the decision making for the CCI. Irrational or uninformed decision making can occur when family members experience high levels of psychological distress. Attention to the psychological needs and provision of support to family members enhance the formulation of treatment decisions consistent with the patient’s preferences and mitigate unnecessary resource use. In this article, the impact of chronic critical illness on family members’ risk for depression, anxiety, and post-traumatic stress disorder is described and a review of evidence-based strategies to support the psychological needs of family members coping with a patient’s chronic critical illness is provided.
PMCID: PMC3037826  PMID: 20118707
chronically critically ill (CCI); prolonged mechanical ventilation; family members; depression; anxiety; post-traumatic stress disorder; psychological outcomes; evidence-based practices
20.  Meeting standards of high-quality intensive care unit palliative care: Clinical performance and predictors 
Critical Care Medicine  2012;40(4):1105-1112.
High-quality care for intensive care unit patients and families includes palliative care. To promote performance improvement, the Agency for Healthcare Research and Quality’s National Quality Measures Clearinghouse identified nine evidence-based processes of intensive care unit palliative care (Care and Communication Bundle) that are measured through review of medical record documentation. We conducted this study to examine how frequently the Care and Communication Bundle processes were performed in diverse intensive care units and to understand patient factors that are associated with such performance.
Prospective, multisite, observational study of performance of key intensive care unit palliative care processes.
A surgical intensive care unit and a medical intensive care unit in two different large academic health centers and a medical-surgical intensive care unit in a medium-sized community hospital.
Consecutive adult patients with length of intensive care unit stay ≥5 days.
Measurements and Main Results
Between November 2007 and December 2009, we measured performance by specified day after intensive care unit admission on nine care process measures: identify medical decision-maker, advance directive and resuscitation preference, distribute family information leaflet, assess and manage pain, offer social work and spiritual support, and conduct interdisciplinary family meeting. Multivariable regression analysis was used to determine predictors of performance of five care processes. We enrolled 518 (94.9%) patients and 336 (83.6%) family members. Performances on pain assessment and management measures were high. In contrast, interdisciplinary family meetings were documented for <20% of patients by intensive care unit day 5. Performance on other measures ranged from 8% to 43%, with substantial variation across and within sites. Chronic comorbidity burden and site were the most consistent predictors of care process performance.
Across three intensive care units in this study, performance of key palliative care processes (other than pain assessment and management) was inconsistent and infrequent. Available resources and strategies should be utilized for performance improvement in this area of high importance to patients, families, and providers.
PMCID: PMC3307856  PMID: 22202706
21.  Informing Severely III Patients: Needs, Shortcomings and Strategies for Improvement 
Breast Care  2011;6(1):8-13.
The scope of palliative care has expanded gradually over the last decade. Provision of palliative care is not restricted to the last months of life as in some out-dated concepts. It addresses the needs of severely ill patients in all care settings (in- and outpatients, home care, hospices). Particularly in the last years, the value of integrating palliative care early in the disease trajectory of life-threatening and incurable diseases has become increasingly acknowledged. In order for patients to fully benefit from the concept of early integration of palliative care, they need to be provided with information tailored to their disease trajectory. For example, patients and relatives need to know how symptoms such as pain, depression, fatigue, breathlessness, or anxiety can be alleviated. The patients’ knowledge and understanding will support the coping process, improve comfort and enhance patient participation and autonomy. Since information needs are highly individual and vary throughout the course of the disease, an interactive approach of assessing the patients’ needs and responding to them adequately is mandatory. In this article, the information needs of advanced cancer patients and their families are explained, shortcomings of the present information concepts are discussed, and an integrative approach to responding to patients’ information needs throughout the care pathway is advocated.
PMCID: PMC3083265  PMID: 21547020
Patient information; Communication; Palliative care; Early integration; Advanced cancer; Shared decision-making
22.  End of life considerations in older patients with lung disease 
Clinics in chest medicine  2007;28(4):801-vii.
The goal of palliative care is to prevent suffering and manage symptoms, maintain quality of life, and to provide physical, emotional, and spiritual support for patients and their loved ones. Currently, palliative care measures focus largely on patients with cancer and these models have not been effectively applied to patients with chronic lung disease. Patients with lung disease have a reduced quality of life and a burden of symptoms that is at least as great, if not greater than, patients with cancer, and they commonly experience significant pain, dyspnea, and fatigue. In addition, dementia and delirium can often play a significant role in older patients. Research suggests that patients with chronic lung disease receive suboptimal palliative care due in large part to inadequate communication with their physicians. When patients have made decisions about life-sustaining therapies, physicians often either don’t know the patients’ wishes or misunderstand them. Additionally, depression, which is common in older patients with chronic illness, may influence patients’ decisions about end-of-life care. Clinicians should realize that the vast majority of patients want more information about end-of-life care and that efforts to initiate and improve communication with their patients are important. This article reviews the potential for enhanced palliative care for older patients with chronic lung disease.
PMCID: PMC2174911  PMID: 17967296
End-of-life care; communication; decision-making; palliative care; burden of symptoms
23.  Integrating palliative care within acute stroke services: developing a programme theory of patient and family needs, preferences and staff perspectives 
BMC Palliative Care  2012;11:22.
Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care.
Data from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences.
The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being ‘actively treated’, and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to.
Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families.
PMCID: PMC3539873  PMID: 23140143
Acute stroke; Palliative care; Integration; Synthesis; Theory development; End of life care
24.  Living with the dying: use of the technique of participant observation. 
Canadian Medical Association Journal  1976;115(12):1211-1215.
Through participant observation, questions concerning optimal care of dying patients and needs of their families were answered. A general surgical ward and a palliative care unit were the sites of observation. The observations support the belief that a palliative care unit, specifically designed to meet the known needs of dying patients and their families, is preferable to a general surgical ward. The main findings, of less concern in the palliative care unit than on the surgical ward, were the following: the importance of patient-to-patient support; the discomfort of sick-role behaviour; the impersonal and sometimes intimidating nature of patient care; the limitation of the patient's need (as a person) to give as well as to receive; and the value of families, student nurses and volunteers in total care. These findings emphasize the importance of personal interest in relieving the distress suffered by many terminally ill patients.
PMCID: PMC1878959  PMID: 63313
25.  Palliative Care Consultation Service and Palliative Care Unit: Why Do We Need Both? 
The Oncologist  2012;17(3):428-435.
Patients treated in a palliative care unit were compared with those treated by a palliative care consultation service at the same center. The coexistence of the two institutions at one hospital contributed to the goal of ensuring optimal palliative care for patients in complex and challenging clinical situations.
Palliative care (PC) infrastructure has developed differently around the globe. Whereas some institutions consider the palliative care unit (PCU) a valuable component, others report that the sole provision of a state-of-the art palliative care consultation service (PCCS) suffices to adequately care for the severely ill and dying.
To aid institutional planning, this study aimed at gathering patient data to distinguish assignments of a concomitantly run PCU and PCCS at a large hospital and academic medical center.
Demographics, Eastern Cooperative Oncology Group performance status, symptom/problem burden, discharge modality, and team satisfaction with care for all 601 PCU and 851 PCCS patients treated in 2009 and 2010 were retrospectively analyzed.
Patients admitted to the PCU versus those consulted by the PCCS: (a) had a significantly worse performance status (odds ratio [OR], 1.48); (b) were significantly more likely to suffer from severe symptoms and psychosocial problems (OR, 2.05), in particular concerning physical suffering and complexity of care; and (c) were significantly much more likely to die during hospital stay (OR, 11.03). For patients who were dying or in other challenging clinical situations (suffering from various severe symptoms), self-rated team satisfaction was significantly higher for the PCU than the PCCS.
This study presents a direct comparison between patients in a PCU and a PCCS. Results strongly support the hypothesis that the coexistence of both institutions in one hospital contributes to the goal of ensuring optimal high-quality PC for patients in complex and challenging clinical situations.
PMCID: PMC3316929  PMID: 22357732
Palliative care; Terminal care; Organization and administration; Health planning guidelines; Institutionalization

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