Advanced heart failure (HF) is a disease process that carries a high burden of symptoms, suffering, and death. Palliative care can complement traditional care to improve symptom amelioration, patient-caregiver communication, emotional support, and medical decision making. Despite a growing body of evidence supporting the integration of palliative care into the overall care of patients with HF and some recent evidence of increased use, palliative therapies remain underused in the treatment of advanced HF. Review of the literature reveals that although barriers to integrating palliative care are not fully understood, difficult prognostication combined with caregiver inexperience with end-of-life issues specific to advanced HF is likely to contribute. In this review, we have outlined the general need for palliative care in advanced HF, detailed how palliative measures can be integrated into the care of those having this disease, and explored end-of-life issues specific to these patients.
Advanced heart failure; Palliative care; Hospice; End-of-life
Palliative and end-of-life care is changing in the United States. This dynamic field is improving the care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Ways to integrate current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. While the evidence base for palliative care is only beginning, national research support has assisted in providing support to build the knowledge foundation for appropriate palliative care. Opportunities are available for clinicians to understand and apply appropriate palliative and end-of-life care to patients with serious and life-threatening cancers.
Palliative Care; Advanced Cancer; Palliative Education; Hospice
For patients hospitalized with life-threatening illnesses and their families, palliative care consultants can provide critical support by providing information about prognosis, ensuring that symptoms are managed, helping to clarify goals of care, and addressing psychosocial and spiritual concerns. However, once patients leave the hospital, many hospital-based palliative care teams (PCTs) cannot continue to play active roles in patient care. Gaps in discharge planning not only decrease quality of life for patients, but also translate into lack of support for caregivers. The palliative care population would be expected to benefit from a customized approach to hospital discharge. The aim of this study was to identify the range of health care experiences of family caregivers and patients who received palliative care consultations after they left the hospital, and to understand how PCTs might best prepare patients and caregivers for the post-hospital experience.
By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries.
As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe.
The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework.
We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs.
Quality indicator; Organisation; Europe; Public health; Palliative care; Europall
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.
Patient information; Communication; Palliative care; Early integration; Advanced cancer; Shared decision-making
Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care.
In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information.
Palliative Care; Pediatric Critical Care
We CanSupport provide holistic care to the patients and family. This means, physical, emotional, psychosocial and spiritual care. The objective of this article is to implement a plan for improved high quality care, within a dynamic and complex health care system for palliative care. Twelve years of working experience with palliative care in CanSupport ‘India’ and 10 years of working palliative care aboard (USA). High level satisfaction of the patient of the patient and families due to the psycho, socio, spiritual model and help for income generation and vocational training. We suggest and encourage, to we this model for all palliative care centre and institutions
Total pain management; Team approach; Multidisciplinary team; Holistic care
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.
The authors used a quality data assessment tool to examine the relationship between conformance with palliative care quality measures and patient outcomes.
As palliative care further integrates into cancer care, descriptions of how supportive care quality measures improve patient outcomes are necessary to establish best practices.
We assessed the relationship between conformance to 18 palliative care quality measures and quality of life from data obtained using our novel point-of-care, electronic quality monitoring system, the Quality Data Collection Tool for Palliative Care (QDACT-PC). All patients with cancer from January 2008 through March 2011 seen in the Carolinas Palliative Care Consortium were evaluated for demographic, disease, prognostic, performance status, and measure conformance variables. Using univariate and multivariate regression, we examined the relationship between these variable and high quality of life at the initial specialty palliative care consultation.
Our cohort included 459 patients, the majority of whom were over age 65 years (66%) and white (84%). Lung (29.1%) and GI (24.7%) cancers were most common. In univariate analyses, conformance to assessment of comprehensive symptoms, fatigue and constipation assessment, timely management of pain and constipation, and timely emotional well-being assessment were associated with highest levels of quality of life (all Ps < .05). In a multivariate model (C-stat = 0.66), performance status (odds ratio [OR], 5.21; P = .003), estimated life expectancy (OR, 22.6; P = .003), conformance to the measure related to emotional well-being assessment (OR, 1.60; P = .026), and comprehensive screening of symptoms (OR, 1.74, P = .008) remained significant.
Oncology care pathways that routinely incorporate supportive care principles, such as comprehensive symptom and emotional well-being assessments, may improve patient outcomes.
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.
oncologist; oncology nurse practitioner; concurrent oncology palliative care; qualitative research; health care delivery
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.
palliative care; oncology; research policy; evidence-based medicine
Anticancer therapies gain increasing attention and discussion in specialized palliative care institutions. Frequency, indication, attitude of team members, and modes of these therapies implemented in specialized palliative care settings are still under investigation.
Descriptive analysis of the nationwide Hospice and Palliative Care Evaluation 2007 that collected data from palliative medicine, hospice care, and oncology institutions concerning the use of anticancer therapies.
Three thousand one hundred eighty-four patients from 67 palliative care units, eight oncology wards, and other in- and outpatient institutions were registered. Two hundred eleven therapeutic interventions, mostly i.v. chemotherapy (28.9%), have been documented in all institutions except from inpatient hospices. Although all institutions were asked to keep records from “palliative patients”, those patients treated in oncology services differed from patients on palliative care units with respect to prognosis, therapeutic intention (symptom control versus tumor remission), and team attitude.
Anticancer therapies are incorporated into palliative care concepts. The described differences in palliative patients that are treated in specialized palliative care as compared to oncology services will have to be discussed with regard to selection of patients for specialized palliative care and the range of suitable treatment modalities in palliative care concepts.
Anticancer therapy; Palliative patient; Symptom control; Early integration
The authors describe the current palliative care needs of a population of community-dwelling patients with advanced cancer who are not yet ready for transition to hospice.
With improved effectiveness of early detection and treatment, many patients with cancer are now living with advanced disease and associated symptoms. As cancer becomes a chronic illness, adequate attention to patients' symptoms and psychosocial needs in the community setting requires positioning of palliative care alongside cancer care. This article describes the current palliative care needs of a population of community-dwelling patients with advanced cancer who are not yet ready for transition to hospice.
This secondary analysis used quality-monitoring data collected in three community-based palliative care organizations. Analyses focused on people with cancer-related diagnoses who were receiving palliative care during 2008 to 2011.
The analytic data set included 4,980 people, 10% of whom had cancer. Median age was 71 years. Forty-eight percent had been hospitalized at least once in the 6 months before palliative care referral. Forty-nine percent had a Palliative Performance Score (PPS) of 40% to 60%; 40% had PPS ≤ 30%. Although 81% had an estimated prognosis of ≤ 6 months, 58% were expected to live weeks to months. Thirty-three percent had no identified healthcare surrogate; 59% had no do-not-resuscitate order despite declining functional status and limited prognosis. Ninety-five percent reported ≥ 1 symptom, and 67% reported ≥ 3 symptoms; a substantial proportion did not receive treatment for symptoms.
Patients referred to community-based palliative care experience multiple often-severe symptoms that have been insufficiently addressed. They tend to have declining performance status. Earlier palliative care intervention could improve outcomes but will require delivery models that better coordinate inpatient/outpatient oncology and community-based palliative care.
Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness. A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers. We wanted to discern whether or not the evidence base to support family carers has improved. Furthermore, undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration http://www.centreforpallcare.org.
A systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade. The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients. Studies were graded to assess their quality.
A total of fourteen studies met the inclusion criteria. The focus of interventions included psycho-education, psychosocial support, carer coping, symptom management, sleep promotion and family meetings. Five studies were randomised controlled trials, three of which met the criteria for the highest quality evidence. There were two prospective studies, five pre-test/post-test projects and two qualitative studies.
The systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade. More rigorous intervention research is required in order to meet the supportive care needs of family carers of palliative care patients.
The impact of a name change from palliative care to supportive care was examined in a comprehensive cancer center. The name change was associated with more inpatient referrals and earlier referrals in the outpatient setting.
Palliative care consultation services are now available in the majority of cancer centers, yet most referrals to palliative care occur late. We previously found that the term “palliative care” was perceived by oncology professionals as a barrier to early patient referral. We aimed to determine whether a service name change to supportive care was associated with earlier referrals.
Patients and Methods.
Records of 4,701 consecutive patients with a first palliative care consultation before (January 2006 to August 2007) and after (January 2008 to August 2009) the name change were analyzed, including demographics and dates of first registration to hospital, advanced cancer diagnosis, palliative care consultation, and death. One-sample proportions tests, median tests, χ2 tests, and log-rank tests were used to identify group differences.
The median age was 59 years, 50% were male, and 90% had solid tumors. After the name change, we found: (a) a 41% greater number of palliative care consultations (1,950 versus 2,751 patients; p < .001), mainly as a result of a rise in inpatient referrals (733 versus 1,451 patients; p < .001), and (b) in the outpatient setting, a shorter duration from hospital registration to palliative care consultation (median, 9.2 months versus 13.2 months; hazard ratio [HR], 0.85; p < .001) and from advanced cancer diagnosis to palliative care consultation (5.2 months versus 6.9 months; HR, 0.82; p < .001), and a longer overall survival duration from palliative care consultation (median 6.2 months versus 4.7 months; HR, 1.21; p < .001).
The name change to supportive care was associated with more inpatient referrals and earlier referrals in the outpatient setting. The outpatient setting facilitates earlier access to supportive/palliative care and should be established in more centers.
Supportive care; Palliative care; Cancer; Symptom management; End-of-life care
Transitions often occur suddenly and can be traumatic to both patients with advanced disease and their families. The purpose of this study was to explore the transition experience of older rural persons with advanced cancer and their families from the perspective of palliative home care patients, bereaved family caregivers, and health care professionals. The specific aims were to: (1) describe the experience of significant transitions experienced by older rural persons who were receiving palliative home care and their families and (2) develop a substantive theory of transitions in this population.
Using a grounded theory approach, 27 open-ended individual audio-taped interviews were conducted with six older rural persons with advanced cancer and 10 bereaved family caregivers. Four focus group interviews were conducted with 12 palliative care health care professionals. All interviews were transcribed verbatim, coded, and analyzed using Charmaz's constructivist grounded theory approach.
Within a rural context of isolation, lack of information and limited accessibility to services, and values of individuality and community connectedness, older rural palliative patients and their families experienced multiple complex transitions in environment, roles/relationships, activities of daily living, and physical and mental health. Transitions disrupted the lives of palliative patients and their caregivers, resulting in distress and uncertainty. Rural palliative patients and their families adapted to transitions through the processes of "Navigating Unknown Waters". This tentative theory includes processes of coming to terms with their situation, connecting, and redefining normal. Timely communication, provision of information and support networks facilitated the processes.
The emerging theory provides a foundation for future research. Significant transitions identified in this study may serve as a focus for improving delivery of palliative and end of life care in rural areas. Improved understanding of the transitions experienced by advanced cancer palliative care patients and their families, as well as the psychological processes involved in adapting to the transitions, will help health care providers address the unique needs of this vulnerable population.
Background and Purpose
Palliative radiotherapy (prt) is a routine part of oncology care in adult patients, but it is used much less frequently among children with incurable cancer. We surveyed Canadian pediatric oncologists to learn about their knowledge and use of prt and to identify potential barriers to referral.
A 13-item questionnaire assessing prt knowledge and utilization was sent to 80 Canadian pediatric oncologists.
The survey completion rate was 80%, with most respondents being providers of palliative care for children and making referrals for prt. Although 62% had received training in radiation oncology, only 28% had received formal palliative care training. Respondents with palliative care training were found to be significantly more knowledgeable about prt and were more likely to refer children for prt (p < 0.01). Only 59% of respondents thought that they had adequate knowledge about the indications for prt. A positive correlation was found between knowledge about the indications for prt and referral for treatment (p < 0.01). Among survey respondents, 51% believed that prt was underutilized, and the perceived barriers to prt referral included patient or family reluctance, distance to the cancer centre, belief that prt has little impact on quality of life, and concerns about toxicity.
Palliative radiotherapy is considered to be underutilized among children. This situation appears to be related, in part, to inadequate knowledge and training among pediatric oncologists, suggesting that more emphasis needs to be placed on pediatric palliative care education.
Pediatric oncology; palliative care; palliative radiotherapy; utilization; barriers; education; survey
Breast cancer patients of an advanced age will suffer from ailments related to both senescence and cancer. Some will have been denied access to screening programmes and will present with an advanced disease. Many will need the expertise of the geriatrician and the oncologist who will participate in specific case discussions to look at social and medical issues that will affect the treatment plan (with questions regarding surgery, radiation, drug therapy, rehabilitation, supportive care, and palliative care often intertwined). This paper reviews recommendations by the International Society of Geriatric Oncology (SIOG) task force which recently assessed the available evidence on breast cancer in elderly individuals, and provided evidence-based recommendations for the diagnosis and treatment of breast cancer in such individuals. Recommendations on the topics of screening, surgery, radiotherapy, (neo)adjuvant hormone treatment, and chemotherapy, and on metastatic disease have been given. Oncologists are now learning to take into account the physiological age of their patient, which is the reflection of a normal and sometimes abnormally accelerated loss of body reserves which is certainly related to chronological age but not precisely dictated by it. Understanding the biology of breast cancer will allow to optimally adapt the treatment of the elderly patient.
Breast cancer; Elderly; Geriatric assessment; Creatinine clearance; Comorbidity
The authors believe that providing outstanding palliative care is not merely practical, but imperative, as it enhances quality of care when added to the work done by the oncology team.
Although palliative care is not new to health care or to oncology, oncologists still struggle to maximize the value of this type of care across the entire care continuum and across the patient's trajectory of illness. When we don't use what may be the best tools for the job, at the right times in the care path, we miss opportunities to optimize patient and family coping, to limit suffering, and to ensure that our care plans are patient centered. In this article, we look at how we define palliative care and how the tools of palliative medicine can be used to enhance patient care in the outpatient oncology practice setting.
The purpose of this article is first to describe the development and content of a transmural care model in the rehabilitation sector, which aims to reduce the number and severity of health problems of people with spinal cord injury (SCI) and improve the continuity of care. Second, the purpose is to describe the applicability and implementation experiences of a transmural care model in the rehabilitation sector.
The transmural care model was developed in cooperation with the Dutch Association of Spinal Cord Injured Patients, community nurses, general practitioners, rehabilitation nurses, rehabilitation managers, physiatrists and researchers. The core component of the care model consists of a transmural nurse, who ‘liaises’ between people with SCI living in the community, professional primary care professionals and the rehabilitation centre. The transmural care model provides a job description containing activities to support people with SCI and their family/partners and activities to promote continuity of care.
The transmural care model was implemented in two Dutch rehabilitation centres. The following three aspects, as experienced by the transmural nurses, were evaluated: the extent to which the care model was implemented; enabling factors and barriers for implementation; strength and weakness of the care model.
The transmural care model was not implemented in all its details, with a clear difference between the two rehabilitation centres. Enabling factors and barriers for implementation were found at three levels: 1. the level of the individual professional (e.g. competencies, attitude and motivation), 2. the organisational and financing level (e.g. availability of facilities and finances), and 3. the social context (the opinion of colleagues, managers and other professionals involved with the care). The most important weakness experienced was that there was not enough time to put all the activities into practice. The strength of the care model lies in the combination of support of patients after discharge, support of and cooperation with primary care professionals, and feedback of experiences to the clinical rehabilitation teams.
We recommend further improving and implementing the care model and encourage other care professionals and researchers to share their implementation experiences of follow-up care innovations for people with SCI.
transmural care; follow-up care; process evaluation; spinal cord injury
Support for family caregivers, including bereavement follow-up, is a core function of palliative care. Many caregivers acknowledge positive aspects associated with the role; however a considerable proportion will experience poor psychological, social, financial, spiritual, and physical well-being and some will suffer from complicated grief. Many family caregivers have unmet needs and would like more information, preparation, and support to assist them in the caregiving role. There is a shortage of evidence-based strategies to guide health professionals in providing optimal support while the caregiver is providing care and after the patient's death.
To develop clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients.
(1) Literature review; (2) focus groups and structured interviews with key stakeholders within Australia; (3) national and international expert opinion to further develop and refine the guidelines using a modified Delphi process; and (4) endorsement of the guidelines from key palliative care, caregiver, and bereavement organizations (national and international).
The guidelines were developed for multidisciplinary health care professionals and clinical services commonly involved in caring for adult patients receiving palliative care in a variety of care sites throughout Australia. These consensus-based guidelines have been endorsed key Australian and international organizations.
The guidelines may prove valuable for the international palliative care community and for generalist health care providers who occasionally care for palliative care patients. Research is recommended to explore the uptake, implementation, and effectiveness of the guidelines.
Recent federal and state public policy focuses on advance care planning, suggesting the promise for care delivery improvements and the means for surmounting barriers.
Federal and state provisions for advance care planning—the process by which patients, families, and medical professionals plan for future and, in particular, end-of-life care—continue to receive attention. Such planning remains an integral component of palliative care, complementing the recognition and treatment of pain and other symptoms that patients with advanced malignancies and their families encounter. Historically, advance care planning interventions (particularly those involving advance directives) have been unable to consistently demonstrate positive outcomes for patients with life-threatening illnesses. However, more recent literature, including that on patients with cancer, illustrates that both patients and caregivers report improved quality of life and less distress after discussions with their health care teams about end-of-life care. Herein, we discuss recent federal and state public policy that focuses on advance care planning, suggesting the promise for care delivery improvements and the means by which existing barriers might be surmounted. These care delivery issues apply to several disease states but are particularly pertinent to the adult oncology setting.
Problem Most patients with advanced lung cancer currently receive much of their health care, including chemotherapy, as outpatients. Patients have to deal with the complex and time consuming logistics of ambulatory cancer care. At the same time, members of staff often waste considerable time and energy in organisational aspects of care that could be better used in direct interaction with patients.
Design Quality improvement study using direct observation and run and flow charts, and focus group meetings with patients and families regarding perceptions of the clinic and with staff regarding satisfaction with working conditions.
Setting Thoracic oncology outpatient clinic at a Norwegian university hospital where patients receive chemotherapy and complementary palliative care.
Key measures for improvement Waiting time and time wasted during consultations; calmer working situation at the clinic; satisfaction among patients.
Strategies for change Rescheduled patients' appointments, automated retrieval of blood test results, systematic reporting in patients' files, design of an information leaflet, and refurnishing of the waiting area at the clinic.
Effects of change Interventions resulted in increased satisfaction for patients and staff, reduced waiting time, and reduced variability of waiting time.
Lessons learnt Direct observation, focus groups, questionnaires on patients' satisfaction, and measurement of process time were useful in systematically improving care in this outpatient clinic. The description of this experience can serve as an example for the improvement of a microsystem, particularly in other settings with similar problems.
Palliative care is increasingly recognized as an integral component of comprehensive intensive care for all critically ill patients, regardless of prognosis, and for their families. Here we discuss the key role that nurses can and must continue to play in making this evidence-based paradigm a clinical reality across a broad range of ICUs. We review the contributions of nurses to implementation of ICU safety initiatives as a model that can be applied to ICU palliative care integration. We focus on the importance of nursing involvement in design and application of work processes that facilitate this integration in a systematic way, including processes that ensure the participation of nurses in discussions and decision making with families about care goals. We suggest ways that nurses can help to operationalize an integrated approach to palliative care in the ICU and to define their own essential role in a successful, sustainable ICU palliative care improvement effort. Finally, we identify resources including The IPAL-ICU Project™, a new initiative by the Center to Advance Palliative Care that can assist nurses and other healthcare professionals to move such efforts forward in diverse critical care settings.
intensive care; nurse's role; palliative care
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.
palliative care; pediatrics; nursing; cancer