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1.  Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study 
PLoS Medicine  2012;9(2):e1001173.
In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patient's life are described.
In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life.
Methods and Findings
Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.
Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
Please see later in the article for the Editors' Summary
Editors' Summary
End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo, and, if mentioned, are often referred to as “palliative care.” There are detailed definitions of palliative care, but in essence, the purpose of palliative care is to relieve any suffering in patients who are dying from progressive illness and to provide the best possible quality of life for both the patient and his or her family. In order to achieve this aim, both pharmacological and non-pharmacological management is necessary, with the latter taking a central role. Recently, a European Commission Seventh Framework Programme project, OPCARE9, aimed to improve the care of dying patients in Europe and beyond by optimizing research and clinical care for patients with cancer in the last days of their life, especially regarding well-being and comfort as death becomes imminent.
Why Was This Study Done?
There is now a growing literature base in non-pharmacological management at the end of an individual's life, particularly in relation to psychological, ethical, and communication issues as well as family-focused and culturally appropriate care. Despite this progress, there is currently little systematic knowledge in how health workers use such non-pharmacological approaches in their efforts to maximize well-being and comfort in patients experiencing their very last days of life. Therefore, in order to advance knowledge in this important clinical area, in this study the researchers reviewed and identified the variety of non-pharmacological caregiving activities performed by different professionals in the last days and hours of life for patients with cancer (and their families) in palliative care settings in the countries that participated in OPCARE9.
What Did the Researchers Do and Find?
The researchers modified an anthropological approach to collect relevant information in participating European countries—Germany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK—and Argentina and New Zealand. Staff in palliative care settings generated a list of non-pharmacological caregiving activities after discussion about which interventions and activities they carried out with patients and families during the last days of life. This preliminary list of statements was added to if staff performed a new activity when in contact with patients or the patients' family during the last days of life. The researchers then used computer-assisted qualitative data analysis to code the statements.
Using this methodology, the researchers analyzed 914 statements of caregiving activities from 16 different facilities in nine countries. The greatest number of activities described some type of caregiving for an individual carried out through contact with his or her body, such as attending to diverse bodily needs (such as cleaning and moisturizing) while maintaining comfort and dignity. Listening, talking with, and understanding (particularly between professionals and the family) was the next most frequent activity, followed by creating an esthetical, safe, and pleasing environment for the dying person and his or her family, and necessary “backstage” activities, such as organizing paperwork or care plans. Other common activities included observing and assessing, which were often described as being carried out simultaneously with other interventions; just being present (described as increasingly important close to death); performing rituals surrounding death and dying (usually directed to families); guiding and facilitating (encompassing support in a compassionate manner); and finally, giving oral and written information and advice (usually to families).
What Do These Findings Mean?
These findings show that providing for fundamental human needs close to death is complex and sophisticated but ultimately integrated into a common theme of caregiving. This study also identifies a number of areas needing further investigation, such as enhancing the sensory and general environment for the patient and family. Finally, this study suggests that developing a greater level of detail, such as improved terminology for end-of-life care, would enhance appreciation of the nuances and complexity present in non-pharmacological care provision during the last days of life, with potential benefit for clinical practice, teaching, and research.
Additional Information
Please access these websites via the online version of this summary at
The OPCARE9 website details more information about this end-of-life care initiative
The World Health Organization website defines palliative care, and Wikipedia gives more information (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
NHS Choices also provides information about end-of-life care
PMCID: PMC3279347  PMID: 22347815
2.  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
3.  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
4.  Perceptions and Utilization of Palliative Care Services in Acute Care Hospitals 
Journal of palliative medicine  2007;10(1):99-110.
To understand perceptions of palliative care in acute care hospitals and identify barriers to earlier use of palliative care in the illness trajectory.
We conducted semistructured interviews with 120 providers involved in decision making or discharge planning and “shadowed” health care providers on intensive care unit rounds in 11 Pennsylvania hospitals, and then used qualitative methods to analyze field notes and transcripts.
Most participants characterized palliative care as end-of-life or hospice care that is initiated after the decision to limit treatment is made. Few recognized the role of palliative care in managing symptoms and addressing the psychosocial needs of patients with chronic illnesses other than cancer. Participants viewed earlier and broader palliative care consultations less in terms of clinical benefits than in terms of cost savings accrued from shorter terminal hospitalizations. In general, participants thought nurses were most likely to facilitate palliative care consults, surgeons were most likely to resist them, and intensive care specialists were most likely to view palliative care as within their own scope of practice. Suggestions for increasing and broadening palliative care integration and utilization included providing workforce development, education, and training; improving financial reimbursement and sustainability for palliative care; and fostering a hospital culture that turns to high -intensity care only if it meets the individual needs and goals of patients with chronic illnesses.
Initiating palliative care consultations earlier during hospitalization will require an emphasis on patient benefits and assurances that palliative care will not threaten provider autonomy.
PMCID: PMC4070316  PMID: 17298258
care; palliative; qualitative research; social perceptions; utilization
5.  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
6.  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
7.  High Burden of Palliative Needs among Older Intensive Care Unit Survivors Transferred to Post–Acute Care Facilities. A Single-Center Study 
Rationale: Adults with chronic critical illness (tracheostomy after ≥ 10 d of mechanical ventilation) have a high burden of palliative needs, but little is known about the actual use and potential need of palliative care services for the larger population of older intensive care unit (ICU) survivors discharged to post–acute care facilities.
Objectives: To determine whether older ICU survivors discharged to post–acute care facilities have potentially unmet palliative care needs.
Methods: We examined electronic records from a 1-year cohort of 228 consecutive adults ≥ 65 years of age who had their first medical-ICU admission in 2009 at a single tertiary-care medical center and survived to discharge to a post–acute care facility (excluding hospice). Use of palliative care services was defined as having received a palliative care consultation. Potential palliative care needs were defined as patient characteristics suggestive of physical or psychological symptom distress or anticipated poor prognosis. We examined the prevalence of potential palliative needs and 6-month mortality.
Measurements and Main Results: The median age was 78 years (interquartile range, 71–84 yr), and 54% received mechanical ventilation for a median of 7 days (interquartile range, 3–16 d). Six subjects (2.6%) received a palliative care consultation during the hospitalization. However, 88% had at least one potential palliative care need; 22% had chronic wounds, 37% were discharged on supplemental oxygen, 17% received chaplaincy services, 23% preferred to not be resuscitated, and 8% were designated “comfort care.” The 6-month mortality was 40%.
Conclusions: Older ICU survivors from a single center who required postacute facility care had a high burden of palliative care needs and a high 6-month mortality. The in-hospital postcritical acute care period should be targeted for palliative care assessment and intervention.
PMCID: PMC3960912  PMID: 23987743
aged; critically ill; palliative medicine; nursing homes
8.  The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review of views from patients, carers and health-care professionals 
Palliative Medicine  2014;28(9):1081-1098.
Primary care has the potential to play significant roles in providing effective palliative care for non-cancer patients.
To identify, critically appraise and synthesise the existing evidence on views on the provision of palliative care for non-cancer patients by primary care providers and reveal any gaps in the evidence.
Standard systematic review and narrative synthesis.
Data sources:
MEDLINE, Embase, CINAHL, PsycINFO, Applied Social Science Abstract and the Cochrane library were searched in 2012. Reference searching, hand searching, expert consultations and grey literature searches complemented these. Papers with the views of patients/carers or professionals on primary palliative care provision to non-cancer patients in the community were included. The amended Hawker’s criteria were used for quality assessment of included studies.
A total of 30 studies were included and represent the views of 719 patients, 605 carers and over 400 professionals. In all, 27 studies are from the United Kingdom. Patients and carers expect primary care physicians to provide compassionate care, have appropriate knowledge and play central roles in providing care. The roles of professionals are unclear to patients, carers and professionals themselves. Uncertainty of illness trajectory and lack of collaboration between health-care professionals were identified as barriers to effective care.
Effective interprofessional work to deal with uncertainty and maintain coordinated care is needed for better palliative care provision to non-cancer patients in the community. Research into and development of a best model for effective interdisciplinary work are needed.
PMCID: PMC4232314  PMID: 24821710
Palliative care; primary health care; interprofessional relations; community health services; heart failure; chronic obstructive pulmonary disease
9.  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
10.  Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial 
BMC Palliative Care  2014;13:43.
Palliative care is a vital component of patient-centered care. It has increasingly become central to the management and care of seriously ill patients by integrating physical, psychosocial, and spiritual supportive services. Through qualitative inquiry, this paper examines cancer patients’ perceptions of the process and outcomes of the pain and palliative care consultative services they received while enrolled in a clinical trial.
A qualitative analysis of open-ended questions was conducted from a sub-sample of patients (n = 34) with advanced cancers enrolled in a randomized controlled trial exploring the efficacy of a palliative care consult service. Two open-ended questions focused on patient perceptions of continued participation on their primary cancer clinical trials and their perceptions of interdisciplinary communication.
Three overarching themes emerged when asked whether receiving pain and palliative care services made them more likely to remain enrolled in their primary cancer clinical trial: patients’ past experiences with care, self-identified personal characteristics and reasons for participation, and the quality of the partnership. Four themes emerged related to interdisciplinary communication including: the importance of developing relationships, facilitating open communication, having quality communication, and uncertainty about communication between the cancer clinical trial and palliative care teams.
Our findings suggest the importance of qualitative inquiry methods to explore patient perceptions regarding the efficacy of palliative care services for cancer patients enrolled in a cancer clinical trial. Validation of patient perceptions through qualitative inquiry regarding their pain and palliative care needs can provide insight into areas for future implementation research.
Trial registration
NIH Office of Human Subjects Research Protection OHSRP5443 and University of Pennsylvania 813365
PMCID: PMC4178548  PMID: 25276094
Palliative care; Cancer clinical trial; Palliative care; Pain; Communication
11.  Variability in Access to Hospital Palliative Care in the United States 
Journal of Palliative Medicine  2008;11(8):1094-1102.
Hospital palliative care programs provide high-quality, comprehensive care for seriously ill patients and their families.
To examine geographic variation in patient and medical trainee access to hospital palliative care and to examine predictors of these programs.
Primary and secondary analyses of national survey and census data. Hospital data including hospital palliative care programs were obtained from the American Hospital Association (AHA) Annual Survey Database™ for fiscal year 2006 supplemented by mailed surveys. Medical school-affiliated hospitals were obtained from the American Association of Medical Colleges, Web-site review, and telephone survey. Health care utilization data were obtained from the Dartmouth Atlas of Health Care 2008. Multivariate logistic regression was used to identify characteristics significantly associated with the presence of hospital palliative care.
A total of 52.8% of hospitals with 50 or more total facility beds reported hospital palliative care with considerable variation by state; 40.9% (144/352) of public hospitals, 20.3% (84/413) of for-profit hospitals, and 28.8% (160/554) of Medicare sole community providers reported hospital palliative care. A total of 84.5% of medical schools were associated with at least one hospital palliative care program. Factors significantly associated (p < 0.05) with hospital palliative care included geographic location, owning a hospice program, having an American College of Surgery approved cancer program, percent of persons in the county with a university education, and medical school affiliation. For-profit and public hospitals were significantly less likely to have hospital palliative care when compared with nonprofit institutions. States with higher hospital palliative care penetration rates were observed to have fewer Medicare hospital deaths, fewer intensive care unit/cardiac care unit (ICU/CCU) days and admissions during the last 6 months of life, fewer ICU/CCU admission during terminal hospitalizations, and lower overall Medicare spending/enrollee.
This study represents the most recent estimate to date of the prevalence of hospital palliative care in the United States. There is wide geographic variation in access to palliative care services although factors predicting hospital palliative care have not changed since 2005. Overall, medical students have high rates of access to hospital palliative care although complete penetration into academic settings has not occurred. The association between hospital palliative care penetration and lower Medicare costs is intriguing and deserving of further study.
PMCID: PMC2941669  PMID: 18831653
12.  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
13.  The Project ENABLE II Randomized Controlled Trial to Improve Palliative Care for Patients with Advanced Cancer 
There are few randomized controlled trials of the effectiveness of palliative care.
To determine the effect of a palliative care intervention on quality of life (QOL), symptom intensity, mood, and resource utilization.
Design, Setting, and Participants
Randomized controlled trial (November 2003-May 2008) of 322 patients with advanced cancer and an identified caregiver in a rural, NCI-designated comprehensive cancer center (the Norris Cotton Cancer Center, Lebanon, NH) and affiliated outreach clinics and Veteran’s Affairs Medical Center (White River Junction, VT).
A multi-component, psycho-educational, palliative care intervention (Project ENABLE) conducted by an advanced practice nurse consisting of 4 weekly educational sessions and monthly follow-up until death or study completion.
Main Outcome Measures
(1) The Functional Assessment of Chronic Illness Therapy-Palliative (range: 0 to 184; higher scores indicate better QOL), (2) Edmonton Symptom Assessment Scale (range: 0 to 900; higher scores indicate greater symptom intensity), (3) Center for Epidemiological Studies-Depression (range: 0 to 60; higher scores indicate more depressive symptoms), completed at baseline, 1 month and every 3 months until death or study completion, (4) days in hospital, intensive care unit (ICU), and emergency department visits recorded in the medical record.
322 participants with gastrointestinal (41%), lung (36%), genitourinary (12%), and breast (10%) cancer were randomized. Estimated treatment effects (intervention minus usual care) for all subjects were 4.6 (P = .02) for QOL, −27.8 (P = .06) for symptom intensity, and −1.8 (P = .02) for depressed mood. Estimated average treatment effects in the sample of participants who died during the study were 8.6 (P = .02) for QOL, −24.2 (P = .24) for symptom intensity, and −2.7 (P = .03) for depressed mood. Days in hospital, intensive care unit, and emergency department visits were not different between groups.
Compared to participants receiving usual oncology care, participants receiving a palliative care intervention addressing physical, psychosocial, and care coordination provided concurrently with oncology care had higher QOL and mood; comparisons of symptom intensity and days in hospital, ICU, and emergency department visits were not statistically significant.
Trial Registration Identifier: NCT00253383
PMCID: PMC3657724  PMID: 19690306
14.  A region-based palliative care intervention trial using the mixed-method approach: Japan OPTIM study 
BMC Palliative Care  2012;11:2.
Disseminating palliative care is a critical task throughout the world. Several outcome studies explored the effects of regional palliative care programs on a variety of end-points, and some qualitative studies investigated the process of developing community palliative care networks. These studies provide important insights into the potential benefits of regional palliative care programs, but the clinical implications are still limited, because: 1) many interventions included fundamental changes in the structure of the health care system, and, thus, the results would not be applicable for many regions where structural changes are difficult or unfeasible; 2) patient-oriented outcomes were not measured or explored only in a small number of populations, and interpretation of the results from a patient's view is difficult; and 3) no studies adopted a mixed-method approach using both quantitative and qualitative methodologies to interpret the complex phenomenon from multidimensional perspectives.
This is a mixed-method regional intervention trial, consisting of a pre-post outcome study and qualitative process studies. The primary aim of the pre-post outcome study is to evaluate the change in the number of home deaths, use of specialized palliative care services, patient-reported quality of palliative care, and family-reported quality of palliative care after regional palliative care intervention. The secondary aim is to explore the changes in a variety of outcomes, including patients' quality of life, pain intensity, family care burden, and physicians' and nurses' knowledge, difficulties, and self-perceived practice. Outcome measurements used in this study include the Care Evaluation Scale, Good Death Inventory, Brief pain Inventory, Caregiving Consequence Inventory, Sense of Security Scale, Palliative Care Knowledge test, Palliative Care Difficulties Scale, and Palliative Care Self-reported Practice Scale. Study populations are a nearly representative sample of advanced cancer patients, bereaved family members, physicians, and nurses in the region.
Qualitative process studies consist of 3 studies with each aim: 1) to describe the process in developing regional palliative care in each local context, 2) to understand how and why the regional palliative care program led to changes in the region and to propose a model for shaping regional palliative care, and 3) to systemically collect the barriers of palliative care at a regional level and potential resolutions. The study methodology is a case descriptive study, a grounded theory approach based on interviews, and a content analysis based on systemically collected data, respectively.
This study is, to our knowledge, one of the most comprehensive evaluations of a region-based palliative care intervention program. This study has 3 unique aspects: 1) it measures a wide range of outcomes, including quality of care and quality of life measures specifically designed for palliative care populations, whether patients died where they actually preferred, the changes in physicians and nurses at a regional level; 2) adopts qualitative studies along with quantitative evaluations; and 3) the intervention is without a fundamental change in health care systems. A comprehensive understanding of the findings in this study will contribute to a deeper insight into how to develop community palliative care.
Trial Registration
UMIN Clinical Trials Registry (UMIN-CTR), Japan, UMIN000001274.
PMCID: PMC3349547  PMID: 22233691
15.  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
16.  Characteristics of a palliative care consultation service with a focus on pain in a German university hospital 
BMC Palliative Care  2014;13:45.
A minority of patients with incurable and advanced disease receive specialised palliative care. Specialised palliative care services that complement the care of difficult and complex cases ought to be integrated with services that deliver general care for most patients. A typical setting in which this integrative concept takes place is the hospital setting, where patients suffering from incurable and advanced disease are treated in many different departments.
The aim of the study is to investigate the profile and spectrum of a palliative care consultation service (PCCS) at a German university hospital with special reference to pain therapy.
We retrospectively analysed the PCCS documentation of three years.
Most patients were referred from non-surgical departments, 72% were inpatients, and 28% were outpatients. 98% of the patients suffered from cancer. Counselling in pain therapy was one of the key aspects of the consultation: For 76% of all consulted patients, modifications of the analgesic regimen were recommended, which involved opioids in 96%. Recommendations on breakthrough-pain medication were made for 70% of the patients; this was an opioid in most cases (68%). The most commonly used opioid was morphine. For 17% of the patients, additional diagnostic procedures were recommended. Besides pain management palliative care consultation implied a wide range of recommendations and services: In addition to organising home care infrastructure, palliative care services supported patients and their families in understanding the life-limiting diseases. They also coordinated physical therapy and social and legal advice.
This survey clearly shows that for a consultation service to support patients with incurable or advanced disease, a multi-disciplinary approach is necessary to meet the complex requirements of a needs-adapted palliative care in inpatient or outpatient settings. Timely integration of palliative expertise may support symptom control and may give the required advice to patients, their carers, and their families.
PMCID: PMC4177373  PMID: 25276095
17.  Comparing Clinician Ratings of the Quality of Palliative Care in the Intensive Care Unit 
Critical care medicine  2011;39(5):975-983.
There are numerous challenges to successfully integrating palliative care in the ICU. Our primary goal was to describe and compare the quality of palliative care delivered in an ICU as rated by physicians and nurses working in that ICU.
Multi-site study using self-report questionnaires.
Thirteen hospitals throughout the United States.
Convenience sample of 188 physicians working in critical care (attending physicians, critical care fellows, resident physicians) and 289 critical care nurses.
Clinicians provided overall ratings of the care delivered by either nurses or physicians in their ICU for each of seven domains of ICU palliative care using a 0–10 scale (0 indicating the worst possible and 10 indicating the best possible care). Analyses included descriptive statistics to characterize measurement characteristics of the 10 items, paired Wilcoxon tests comparing item ratings for the domain of symptom management with all other item ratings, and regression analyses assessing differences in ratings within and between clinical disciplines. We used p<0.001 to denote statistical significance to address multiple comparisons.
Main Results
The ten items demonstrated good content validity with few missing responses, ceiling or floor effects. Items receiving the lowest ratings assessed spiritual support for families, emotional support for ICU clinicians, and palliative-care education for ICU clinicians. All but two items were rated significantly lower than the item assessing symptom management (p<0.001). Nurses rated nursing care significantly higher (p<0.001) than physicians rated physician care in five domains. In addition, while nurses and physicians gave comparable ratings to palliative care delivered by nurses, nurses’ and physicians’ ratings of physician care were significantly different, with nurse ratings of this care lower than physician ratings on all but one domain.
Our study supports the content validity of the 10 overall rating items and supports the need for improvement in several aspects of palliative care including spiritual support for families, emotional support for clinicians, and clinician education about palliative care in the ICU. Further, our findings provide some preliminary support for surveying ICU clinicians as one way to assess the quality of palliative care in the ICU.
PMCID: PMC3097256  PMID: 21283006
palliative care; end-of-life care; dying; death; quality of care
18.  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
19.  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
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.  Longitudinal Changes in Function, Symptom Burden, and Quality of Life in Patients with Early-Stage Lung Cancer 
Annals of surgical oncology  2012;20(6):1788-1797.
Emerging evidence supports the integration of palliative care concurrently with disease-focused care in patients with serious illnesses, such as lung cancer. This paper describes how longitudinal changes in physical function, symptom burden, and QOL of patients with early-stage non-small cell lung cancer (NSCLC) informed the development of an interdisciplinary, tailored palliative care intervention.
Patients with early stage (I-IIIB) NSCLC were accrued into the usual care phase (Phase 1) of an NCI-funded Program Project Grant. Baseline and longitudinal (up to 52 weeks post-accrual) physical function, symptoms, and QOL were assessed in the thoracic ambulatory clinics of one NCI-designated Comprehensive Cancer Center. Outcome measures included geriatric assessments, psychological distress, symptoms, and QOL. The association between disease stage (I–II vs. III) and longitudinal changes in these domains was evaluated.
A total of 103 patients were accrued. Stage I–II patients were significantly more likely to complete the study (p = 0.005). The stages (I–II vs. III) were equivalent at baseline on all demographic variables, clinical, and functional status. Physical function fluctuated longitudinally and was higher at 6 and 24 weeks than at baseline and 12 weeks. There was a longitudinal decrease in total number of symptoms (p < 0.001). Physical and social/family QOL fluctuated longitudinally (p < 0.001 and p = 0.016, respectively).
Patients with early-stage NSCLC report a significant longitudinal decrease in physical QOL, and fluctuations in objective and subjective measures of physical function over time were observed regardless of disease stage category. An interdisciplinary palliative care intervention is currently being tested to decrease symptom burden and improve QOL.
PMCID: PMC3657328  PMID: 23143593
22.  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
23.  “Not the ‘Grim Reaper Service’”: An Assessment of Provider Knowledge, Attitudes, and Perceptions Regarding Palliative Care Referral Barriers in Heart Failure 
Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative care providers to impede palliative care referral for HF patients.
Methods and Results
We conducted semistructured interviews regarding (1) perceived needs of patients with advanced HF; (2) knowledge, attitudes, and experiences with specialist palliative care; (3) perceived indications for and optimal timing of palliative care referral in HF; and (4) perceived barriers to palliative care referral. Two investigators analyzed data using template analysis, a qualitative technique. We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF‐related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care. Nevertheless, providers expressed interest for integrating palliative care into traditional HF care, but were unsure of how to initiate collaboration.
Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death. These factors represent potentially modifiable targets for provider education, which may help to improve palliative care referral for HF patients with unresolved disease‐related burden.
PMCID: PMC3959712  PMID: 24385453
health care; health disparities; health services research; healthcare access; heart failure
24.  Palliative care in urgent need of recognition and development in general practice: the example of Germany 
BMC Family Practice  2010;11:66.
Specialist palliative care is being increasingly recognised and developed to improve end-of-life care in many developed countries. However, only a small proportion of the total number of patients with incurable, progressive diseases actually has direct contact with specialist palliative care practitioners. Using the German situation as an example, the main purpose of this paper is to argue that the emphasis on specialist palliative care services without a similar encouragement of primary palliative care will deliver a constrained service.
For the vast majority of people with incurable, progressive diseases, good palliative care delivered by General Practitioners and community nurses, with access to specialist support when needed, is the optimal response. In Germany, specialist palliative care in the community was established in the 2007 health care reforms. However actual and potential delivery of palliative care by general practitioners and community based nurses has been sorely neglected. The time-consuming care of palliative patients and their families is currently far from accurately reflected in German, indeed most European primary care payment systems. However, it is not just a question of adequate financial compensation but also of the recognition of the fundamental value of this intense form of holistic family medicine.
It is imperative palliative care carried out by community nurses and general practitioners is better recognised by health professionals, health insurers, government and the scientific community as a central part of the delivery of health care for people in the last phase of life. Health systems should be arranged so that this critical role of general practice and primary care is intentionally fostered. Palliative care carried out by generalists needs an identity at an academic and practical level, developing in concert with specialist palliative care.
PMCID: PMC2945968  PMID: 20843334
25.  Differential palliative care issues in patients with primary and secondary brain tumours 
Supportive Care in Cancer  2009;18(9):1157-1163.
Cancer may affect the central nervous system either by primary or secondary brain tumours (PBT/SBT). Specific needs of these patients and special requirements of services caring for them have not been adequately addressed so far.
Since 1999, an annual, 3-month census is being conducted in different palliative care settings throughout Germany. Pooled data from the years 2002–2005 were analysed to test for differences between patients with PBT, SBT and other palliative care patients (OP). Symptom frequencies, ECOG status and nursing needs were tested for differences (χ²). Free text entries for reasons for admission were recorded, categorised and analysed descriptively.
A total of 5,684 patients were documented (PBT n = 153, 2.7%; SBT n = 661, 11.9%; OP n = 4,872, 85.4%). For patients with PBT, poor functional status and high need for nursing support was reported more frequently than for patients with SBT and OP. For patients with PBT/SBT physical symptoms (pain, nausea, vomiting, constipation and loss of appetite) were documented less frequently and in lower intensity than for OP. However, nursing, psychological, and social problems/symptoms were documented significantly more often and showed higher intensity, particularly the patients'’ need for support with the activities of daily living, disorientation/confusion of the patients and overburdening of the family. For 67% of all patients, a reason for admission was documented in free text. Main reasons were symptom control (OP>SBT>PBT), social issues (PBT>SBT>OP), functional deficits (PBT>SBT>OP) and cognitive impairment (PBT/SBT>OP). Distinct neurological deficits and problems were documented more often as secondary ICD-diagnoses than as a leading reason for admission.
The specific palliative care problems and the rationales leading to health care utilisation point to the need for an appropriate interdisciplinary and multi-professional provision of care for patients with brain malignancies, with a particular view on the needs of the families and an early integration of social and psychological support.
PMCID: PMC3128711  PMID: 19763633
Palliative care; Brain tumour; Brain metastases; Symptom; Documentation

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