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1.  An Overview of the ACE Project—Advocating for Clinical Excellence: Transdisciplinary Palliative Care Education 
Excellence in palliative care demands attention to the multidimensional aspects of patient and family suffering, yet too few psycho-oncology professionals report adequate preparation in this vital area.
A total of 148 competitively selected psychologists, social workers, and spiritual care professionals participated in intensive educational courses to enhance their palliative care delivery, leadership, and advocacy skills. Extensive process and outcome evaluations measured the effectiveness of this educational program.
To date, 2 national courses have been completed. The courses received strong overall evaluations, with participants rating increased confidence in defined palliative care skills.
The initial results of this innovative National Cancer Institute-funded transdisciplinary training for psycho-oncology professionals affirm the need and feasibility of the program. See the Advocating for Clinical Excellence Project Web site ( for additional course information.
PMCID: PMC2800097  PMID: 19431028
2.  Oncologists’ Perspectives on Concurrent Palliative Care in an NCI-designated Comprehensive Cancer Center 
Palliative & supportive care  2012;11(5):415-423.
To understand oncology clinicians’ perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model.
Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT.
Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) “some patients just want to fight”, and 4) helping with transitions; timing is everything. Five themes comprised oncologists’ views on the complementary role of palliative care: 1) “refer early and often”, 2) referral challenges: “Palliative” equals hospice; “Heme patients are different”, 3) palliative care as consultants or co-managers, 4) palliative care “shares the load”, and 5) ENABLE II facilitated palliative care integration.
Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care.
PMCID: PMC3797174  PMID: 23040412
oncologist; oncology nurse practitioner; concurrent oncology palliative care; qualitative research; health care delivery
3.  Palliative Care in the Outpatient Oncology Setting: Evaluation of a Practical Set of Referral Criteria 
Journal of Oncology Practice  2011;7(6):366-370.
The authors evaluated the feasibility of screening for palliative care needs in outpatients attending one GI oncology practice specializing in colorectal cancer and neuroendocrine tumors.
The National Comprehensive Cancer Network's (NCCN) palliative care (PC) guidelines recommend screening all patients for PC issues at the first visit with their oncologist and at subsequent, clinically relevant times. Criteria for referral to a PC specialist are also part of the guideline. We evaluated the feasibility of screening for PC needs in outpatients attending one GI oncology practice specializing in colorectal cancer and neuroendocrine tumors.
All patients attending clinic during a 3-week period were screened by the office practice nurse (OPN). A one-page screening tool based on the NCCN guidelines was developed, giving a score from 0 to 13. The OPN also evaluated the NCCN referral criteria.
There were 152 clinic visits by 125 patients during the surveillance period; 119 were screened. Median age was 61 years; half were male. Eighty percent had colorectal cancer, and two thirds had advanced disease. Screening took approximately 3 to 5 minutes per patient. Depending on the PC definition used, between 7% and 17% of patients screened positive; all met the NCCN referral criteria. Psychosocial distress was commoner than physical symptoms. The maximum screening score was 8. A cut point of 5 had the best predictive value for specialist referral, and would result in 13% patients having PC consultations.
Screening identified 7% to 17% of patients in this busy clinic as having PC issues and 13% who might benefit from specialist referral. But even this simple method adds considerably to the clinic workload, so the benefits of implementing routine screening need to be carefully evaluated.
PMCID: PMC3219462  PMID: 22379418
4.  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
5.  Palliative care -- an essential component of cancer control 
Unlike in other nations, in Canada palliative care has its origins in university hospitals. It has subsequently developed in a few Canadian schools as an academic discipline closely linked with oncology programs. Although this model is successful, other faculties of medicine and cancer centres have been slow to emulate it. Today, the situation is rapidly changing, and both palliative care and oncology professionals are re-examining the manifest need for collaborative efforts in patient care, research and education. Palliative care must be regarded as an essential component of cancer care, its principles must be applied throughout the course of the illness and, as in other phases of cancer control, palliative care should be regarded as an exercise in prevention--prevention of suffering. This article discusses practical applications that flow from acceptance of these concepts.
PMCID: PMC1229443  PMID: 9676548
6.  The Nursing Dimension of Providing Palliative Care to Children and Adolescents with Cancer 
Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer.
PMCID: PMC3620813  PMID: 23641169
palliative care; pediatrics; nursing; cancer
7.  Randomised controlled trial of a new palliative care service: Compliance, recruitment and completeness of follow-up 
Palliative care has been proposed for progressive non-cancer conditions but there have been few evaluations of service developments. We analysed recruitment, compliance and follow-up data of a fast track (or wait list control) randomised controlled trial of a new palliative care service – a design not previously used to assess palliative care.
An innovative palliative care service (comprising a consultant in palliative medicine, a clinical nurse specialist, an administrator and a psychosocial worker) was delivered to people severely affected by multiple sclerosis (MS), and their carers, in southeast London. Our design followed the MRC Framework for the Evaluation of Complex Interventions. In phase II we conducted randomised controlled trial, of immediate referral to the service (fast-track) versus a 12-week wait (standard best practice). Main outcome measures were: compliance (the extent the trial protocol was adhered to), recruitment (target 50 patients), attrition and missing data rates; trial outcomes were Palliative Care Outcome Scale and MS Impact Scale.
69 patients were referred, 52 entered the trial (26 randomised to each arm), 5 refused consent and 12 were excluded from the trial for other reasons, usually illness or urgent needs, achieving our target numbers. 25/26 fast track and 21/26 standard best practice patients completed the trial, resulting in 217/225 (96%) of possible interviews completed, 87% of which took place in the patient's home. Main reasons for failure to interview and/or attrition were death or illness. There were three deaths in the standard best practice group and one in the fast-track group during the trial. At baseline there were no differences between groups. Missing data for individual questionnaire items were small (median 0, mean 1–5 items out of 56+ items per interview), not associated with any patient or carer characteristics or with individual questionnaires, but were associated with interviewer.
This is the first time a fast track (or wait list) randomised trial has been reported in palliative care. We found it achieved good recruitment and is a feasible method to evaluate palliative care services when patients are expected to live longer than 3–6 months. Home interviews are needed for a trial of this kind; interviewers need careful recruitment, training and supervision; and there should be careful separation from the clinical service of the control patients to prevent accidental contamination.
Trial Registration
Clinical Trials.Gov NCT00364963
PMCID: PMC2442830  PMID: 18507817
8.  The Diverse Landscape of Palliative Care Clinics 
Journal of Palliative Medicine  2013;16(6):661-668.
Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs.
Our objective was to obtain in-depth information about palliative care clinics.
We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges.
Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked “pain management” and “determining goals of care” as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8).
Once established, outpatient palliative care practices anticipate rapid growth. In this context, outpatient practices must plan for increased staffing and develop a sustainable financial model.
PMCID: PMC3668622  PMID: 23662953
9.  Intervention for depression among palliative care patients and their families: A study protocol for evaluation of a training program for professional care staff 
BMC Palliative Care  2011;10:11.
Clinical depression is highly prevalent yet under-detected and under-treated in palliative care settings and is associated with a number of adverse medical and psychological outcomes for patients and their family members. This article presents a study protocol to evaluate a training intervention for non-physician palliative care staff to improve the recognition of depression and provide support for depressed patients and their family members. Details of the hypotheses and expected outcomes, study design, training program development and evaluation measures are described.
Methods and Design
A randomised controlled trial will be implemented across two palliative care services to evaluate the "Training program for professional carers to recognise and manage depression in palliative care settings". Pre-, post- and three-month follow-up data will be collected to assess: the impact of the training on the knowledge, attitudes, self-efficacy and perceived barriers of palliative care staff when working with depression; referral rates for depression; and changes to staff practices. Quantitative and qualitative methods, in the form of self-report questionnaires and interviews with staff and family members, will be used to evaluate the effectiveness of the intervention.
This study will determine the effectiveness of an intervention that aims to respond to the urgent need for innovative programs to target depression in the palliative care setting. The expected outcome of this study is the validation of an evidence-based training program to improve staff recognition and appropriate referrals for depression, as well as improve psychosocial support for depressed patients and their family members.
Trial Registration
Australia and New Zealand Clinical Trials Register (ANZCTR): ACTRN12610000183088
PMCID: PMC3132731  PMID: 21668988
10.  Patient Perspectives on Participation in the ENABLE II Randomized Controlled Trial of a Concurrent Oncology Palliative Care Intervention: Benefits and Burdens 
Palliative medicine  2012;27(4):375-383.
ENABLE (Educate, Nurture, Advise Before Life Ends) II was one of the first randomized controlled trials (RCTs) examining the effects of a concurrent oncology palliative care intervention on quality of life, mood, and symptom control for advanced cancer patients and their caregivers. However, little is known about how participants experience early palliative care and the benefits and burdens of participating in a palliative care clinical trial.
To gain a deeper understanding of participants’ perspectives about the intervention and palliative care trial participation.
A qualitative descriptive study using thematic analysis to determine benefits and burdens of a new palliative care intervention and trial participation.
Of the 72 participants who were alive when the study commenced, 53 agreed to complete an in-depth, semi-structured interview regarding the ENABLE II intervention and clinical trial participation.
Participants’ perceptions of intervention benefits were represented by four themes: enhanced problem-solving skills, better coping, feeling empowered, and feeling supported or reassured. Three themes related to trial participation: helping future patients and contributing to science, gaining insight through completion of questionnaires, and trial/intervention aspects to improve.
The benefits of the intervention and the positive aspects of trial participation outweighed trial “burdens”. This study raises additional important questions relevant to future trial design and intervention development: when should a palliative care intervention be initiated and what aspects of self-care and healthy living should be offered in addition to palliative content for advanced cancer patients when they are feeling well?
PMCID: PMC3657725  PMID: 22573470
Qualitative Study; Randomized Controlled Trial; Palliative Care; Intervention study
11.  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
12.  Guidelines for a palliative approach for aged care in the community setting: A suite of resources 
The Australasian Medical Journal  2012;5(11):569-574.
In Australia, many people ageing in their own homes are becoming increasingly frail and unwell, approaching the end of life. A palliative approach, which adheres to palliative care principles, is often appropriate. These principles provide a framework for proactive and holistic care in which quality of life and of dying is prioritised, as is support for families. A palliative approach can be delivered by the general practitioner working with the community aged care team, in collaboration with family carers. Support from specialist palliative care services is available if necessary.
The Guidelines for a Palliative Approach for Aged Care in the Community Setting were published by the Australian Government Department of Health and Ageing to inform practice in this area. There are three resource documents. The main document provides practical evidence based guidelines, good practice points, tools, and links to resources. This document is written for general practitioners, nurses, social workers, therapists, pastoral care workers, and other health professionals and responded to needs identified during national consultation. Evidence based guidelines were underpinned by systematic reviews of the research literature. Good practice points were developed from literature reviews and expert opinion. Two ‘plain English’ booklets were developed in a process involving consumer consultation; one is for older people and their families, the other for care workers.
The resources are intended to facilitate home care that acknowledges and plans for the client’s deteriorating functional trajectory and inevitable death. At a time when hospitals and residential aged care facilities are under enormous pressure as the population ages, such a planned approach makes sense for the health system as a whole. The approach also makes sense for older people who wish to die in their own homes. Family needs are recognised and addressed. Unnecessary hospitalisations or residential placements and clinically futile interventions are also minimised.
PMCID: PMC3518772  PMID: 23289045
Evidence-based health care; guidelines; palliative care; aged care; community care
13.  Clinical oncology in Malaysia: 1914 to present 
A narration of the development of staff, infrastructure and buildings in the various parts of the country is given in this paper. The role of universities and other institutions of learning, public health, palliative care, nuclear medicine and cancer registries is described together with the networking that has been developed between the government, non-governmental organisations and private hospitals. The training of skilled manpower and the commencement of the Master of Clinical Oncology in the University of Malaya is highlighted. Efforts taken to improve the various aspects of cancer control which includes prevention of cancer, early detection, treatment and palliative care are covered. It is vital to ensure that cancer care services must be accessible and affordable throughout the entire health system, from the primary care level up to the centres for tertiary care, throughout the whole country.
PMCID: PMC3097600  PMID: 21614216
History; cancer; radiotherapy; oncology; Malaysia
14.  Initiation of a multidisciplinary summer studentship in palliative and supportive care in oncology 
The optimal setting for interprofessional education (IPE) for prelicensure health care trainees is unclear, especially in a field as complex and emotionally challenging as oncology. In this article, the authors describe the initiation of the Cross Cancer Institute Multidisciplinary Summer Studentship in Palliative and Supportive Care in Oncology, a 6-week, multidisciplinary team-based clinical placement in supportive care, designed to incorporate features of best practice cooperative learning.
A steering committee established goals, structure, eligibility criteria, application process, funding, and a consensus approach to instruction and evaluation for the IPE program. Studentship components included mandatory and flexible clinical time, an exploratory investigation, discussion groups, and a presentation. Two senior students per iteration were selected from clinical nutrition, medicine, nursing, occupational therapy, pharmacy, physiotherapy, respiratory therapy, social work, and speech–language pathology applicants. These students completed questionnaires investigating their views of their own and others’ professions at baseline, at the end of the rotation, and 6 months after the studentship.
Eight students from medicine, clinical nutrition, occupational therapy, physiotherapy, and speech–language pathology have participated to date. At the elective’s end, students have described a more positive view of multidisciplinary team practice, with each participating discipline perceived as both more caring and more subservient than at baseline. In general, changes in attitudes were maintained 6 months after completion of the placement.
This 6-week multidisciplinary placement is feasible, successful, and potentially transferable to other academic settings. The results of this study suggest that even over as short a period as 6 weeks, objective attitudinal and perceptual change is seen.
PMCID: PMC3460666  PMID: 23055742
interprofessional education; multidisciplinary team; clinical placement; perceptual change; evaluation
15.  Palliative Care in Australia 
The Ochsner Journal  2011;11(4):334-337.
Australia is a very large country with a relatively small, diverse population. Palliative care is delivered by a range of professionals, from general (family) practitioners and community care nurses to large tertiary referral palliative care services. A national strategy provides a service development framework that informs the provision of these services. The National Palliative Care Program has provided extensive service improvement in the past decade. Challenges to improving the delivery of palliative care center around meeting the requirements of people with nonmalignant life-limiting illnesses; growing the specialist workforce; maintaining the skills of the primary care workforce; and providing palliative care to special populations such as the aged, indigenous Australians, non–English-speaking Australians, and children.
PMCID: PMC3241066  PMID: 22190884
Australia; health policy; health service organization; palliative care; primary care
16.  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
17.  Caring for People at the End of Life: Iranian Oncology Nurses' Experiences 
Indian Journal of Palliative Care  2009;15(2):141-147.
To explore the meaning of Iranian oncology nurses' experiences of caring for people at the end of life.
Materials and Methods:
A phenomenological hermeneutic approach was applied. Fifteen nurses working in oncology units were interviewed in 2007 regarding their experiences of caring for people at the end of life.
Participants experienced caring for people at the end of life as sharing space and time to be lost within an organizational context. This main theme was divided into three subthemes including being attentive to the dying persons and their families, being cared for by the dying persons and their families, and being faced with barriers.
The study suggests that the nurses' success in caring for people at the end of life is reliant on their interpersonal caring relationship. Facilitating such relationship requires the establishment of palliative care unit, incorporation of palliative care into undergraduate nursing studies, and cultural preparation through public education.
PMCID: PMC2902116  PMID: 20668594
Caring for dying people; Lived experience; Iran; Oncology nurses; Palliative care
18.  Facilitating needs based cancer care for people with a chronic disease: Evaluation of an intervention using a multi-centre interrupted time series design 
Palliative care should be provided according to the individual needs of the patient, caregiver and family, so that the type and level of care provided, as well as the setting in which it is delivered, are dependent on the complexity and severity of individual needs, rather than prognosis or diagnosis [1]. This paper presents a study designed to assess the feasibility and efficacy of an intervention to assist in the allocation of palliative care resources according to need, within the context of a population of people with advanced cancer.
People with advanced cancer and their caregivers completed bi-monthly telephone interviews over a period of up to 18 months to assess unmet needs, anxiety and depression, quality of life, satisfaction with care and service utilisation. The intervention, introduced after at least two baseline phone interviews, involved a) training medical, nursing and allied health professionals at each recruitment site on the use of the Palliative Care Needs Assessment Guidelines and the Needs Assessment Tool: Progressive Disease - Cancer (NAT: PD-C); b) health professionals completing the NAT: PD-C with participating patients approximately monthly for the rest of the study period. Changes in outcomes will be compared pre-and post-intervention.
The study will determine whether the routine, systematic and regular use of the Guidelines and NAT: PD-C in a range of clinical settings is a feasible and effective strategy for facilitating the timely provision of needs based care.
Trials registration
PMCID: PMC2820447  PMID: 20150987
19.  The Project ENABLE II Randomized Controlled Trial to Improve Palliative Care for Rural Patients with Advanced Cancer: Baseline Findings, Methodological Challenges, and Solutions 
Palliative & supportive care  2009;7(1):75-86.
There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including: adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues.
Half of the participants recruited from our rural, US comprehensive cancer center and affiliated clinics were randomly assigned to a phone-based, nurse-led educational, care coordination palliative care intervention model. Intervention services were provided to half of the participants weekly for the first month and then monthly until death, including a bereavement follow-up call to the caregiver. The other half of the participants were assigned to care as usual. Symptoms, QOL, mood, and functional status were assessed every 3 months until death.
Baseline data of 279 participants were similar to normative samples. Solutions to methodological challenges of recruitment, missing data, and "usual care" control group contamination are described.
It is feasible to overcome many of the methodological challenges to conducting a rigorous palliative care RCT.
PMCID: PMC3685415  PMID: 19619377
Palliative Care; Randomized Controlled Trial; Advanced Cancer; Methodological Issues; Intervention Study; Rural
20.  Innovative palliative care in Edmonton. 
Canadian Family Physician  1997;43:1983-1992.
PROBLEM BEING ADDRESSED: Access to palliative care in Edmonton has been hampered by uneven development, poor distribution of services, and more recently, economic restraints. Family physicians' involvement in palliative care has been hindered by the variety of access points, poor coordination, and inadequate reimbursement for time-consuming and difficult patient care situations. OBJECTIVE OF PROGRAM: To provide high-quality palliative care throughout Edmonton in all settings, with patients able to move easily throughout the components of the program; to lower costs by having fewer palliative care patients die in acute care facilities; and to ensure that family physicians receive support to care for most patients at home or in palliative care units. MAIN COMPONENTS OF PROGRAM: The program includes a regional office, home care, and consultant teams. A specialized 14-bed palliative care unit provides acute care. Family physicians are the primary caregivers in the 56 palliative continuing care unit beds. CONCLUSIONS: This program appears to meet most of the need for palliative care in Edmonton. Family physicians, with support from consulting teams, have a central role. Evaluation is ongoing; an important issue is how best to support patients dying at home.
PMCID: PMC2255184  PMID: 9386885
21.  Transforming children’s palliative care—from ideas to action: highlights from the first ICPCN conference on children’s palliative care 
ecancermedicalscience  2014;8:415.
The International Children’s Palliative Care Network (ICPCN) held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, in Mumbai, India, from 10–12 February 2014. The theme of the conference, Transforming children’s palliative care—from ideas to action, reflected the vision of the ICPCN to live in a world where every child who needs it, can access palliative care, regardless of where they live. Key to this is action, to develop service provision and advocate for children’s palliative care. Three pre-conference workshops were held on 9 February, aimed at doctors, nurses, social workers, and volunteers, and focused around the principles of children’s palliative care, and in particular pain and symptom management. The conference brought together 235 participants representing 38 countries. Key themes identified throughout the conference included: the need for advocacy and leadership; for education and research, with great strides having been taken in the development of an evidence base for children’s palliative care, along with the provision of education; the importance of communication and attention to spirituality in children, and issues around clinical care, in particular for neonates. Delegates were continually challenged to transform children’s palliative care in their parts of the world and the conference culminated in the signing of the ICPCN Mumbai Declaration. The Declaration calls upon governments around the world to improve access to quality children’s palliative care services and made a call on the Belgian government not to pass a bill allowing children to be euthanised in that country. The conference highlighted many of the ongoing developments in children’s palliative care around the world, and as she closed the conference, Joan Marston (ICPCN CEO) challenged participants to take positive action and be the champions that the children need, thus transforming children’s palliative care.
PMCID: PMC3971869  PMID: 24761156
children; declaration; education; integration; international; palliative care; research
22.  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
23.  Communication Skills Training for Oncology Professionals 
Journal of Clinical Oncology  2012;30(11):1242-1247.
To provide a state-of-the-art review of communication skills training (CST) that will guide the establishment of a universal curriculum for fellows of all cancer specialties undertaking training as oncology professionals today.
Extensive literature review including meta-analyses of trials, conceptual models, techniques, and potential curricula provides evidence for the development of an appropriate curriculum and CST approach. Examples from the Memorial Sloan-Kettering Cancer Center CST program are incorporated.
A core curriculum embraces CST modules in breaking bad news and discussing unanticipated adverse events, discussing prognosis, reaching a shared treatment decision, responding to difficult emotions, coping with survivorship, running a family meeting, and transitioning to palliative care and end of life. Achievable outcomes are growth in clinician's self-efficacy, uptake of new communication strategies and skills, and transfer of these strategies and skills into the clinic. Outcomes impacting patient satisfaction, improved adaptation, and enhanced quality of life are still lacking.
Future communication challenges include genetic risk communication, concepts like watchful waiting, cumulative radiation risk, late effects of treatment, discussing Internet information and unproven therapies, phase I trial enrollment, and working as a multidisciplinary team. Patient benefits, such as increased treatment adherence and enhanced adaptation, need to be demonstrated from CST.
PMCID: PMC3341141  PMID: 22412145
24.  The imperative for hospital-based palliative care: patient, institutional, and societal benefits 
Challenges in societal demographics, finances, and human suffering are pushing us towards a new paradigm in health care delivery. The palliative care paradigm is a necessary complement to existing acute care and chronic care paradigms. Palliative care does not replace prior paradigms; instead, it adds value and provides a shift in focus when appropriate. Baylor University Medical Center has all of the components needed for an effective palliative care program, including expertise in palliative medicine, pain management, ethics, geriatrics, oncology, other medical specialties, nursing, social work, and pastoral care. The palliative care consultation service will enhance patient care and improve financial performance in patients with serious life-limiting illnesses.
PMCID: PMC1200661  PMID: 16200109
25.  End-of-life care for nursing home residents dying from cancer in Nova Scotia, Canada, 2000–2003 
With our population aging, an increasing proportion of cancer deaths will occur in nursing homes, yet little is known about their end-of-life care. This paper identifies associations between residing in a nursing home and end-of-life palliative cancer care, controlling for demographic factors.
For this population-based study, a data file was created by linking individual-level data from the Nova Scotia Cancer Centre Oncology Patient Information System, Vital Statistics, and the Halifax and Cape Breton Palliative Care Programs for all persons 65 years and over dying of cancer from 2000 to 2003. Multivariate logistic regression was used to compare nursing home residents to nonresidents.
Among the 7,587 subjects, 1,008 (13.3%) were nursing home residents. Nursing home residents were more likely to be female [adjusted odds ratio (OR) 1.4, 95% confidence interval (CI) 1.2–1.7], older (for ≥90 vs 65–69 years OR 5.4, CI 4.1–7.0), rural (OR 1.5, CI 1.2–1.8), have only a death certificate cancer diagnosis (OR 4.2, CI 2.8–6.3), and die out of hospital (OR 8.5, CI 7.2–10.0). Nursing home residents were less likely to receive palliative radiation (OR 0.6, CI 0.4–0.7), medical oncology consultation (OR 0.2, CI 0.1–0.4), and palliative care program enrollment (Halifax OR 0.2, CI 0.2–0.3; Cape Breton OR 0.4, CI 0.3–0.7).
Demographic characteristics and end-of-life services differ between those residing and those not residing in nursing homes. These inequalities may or may not reflect inequities in access to quality end-of-life care.
PMCID: PMC3747102  PMID: 17277924 CAMSID: cams3259
Nursing home; Cancer; Place of death; End-of-life; Palliative care

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