Restau, Jame; Green, Pamela
Most patients who receive terminal care in the intensive care setting die after withdrawing or limiting of life-sustaining measures provided in the intensive care setting. The integration of palliative care into the intensive care unit (ICU) provides care, comfort, and planning for patients, families, and the medical staff to help decrease the emotional, spiritual, and psychological stress of a patient's death. Quality measures for palliative care in the ICU are discussed along with case studies to demonstrate how this integration is beneficial for a patient and family. Integrating palliative care into the ICU is also examined in regards to the complex adaptive system.
Selwyn, Peter A
As a physician working in palliative care, the author is often privileged to share special moments with patients and their families at the end of life. This haiku poem recalls one such moment in that precious space between life and death, as an elderly woman, surrounded by her adult daughters, takes her last breath. (PsycINFO Database Record
Madden, Kevin; Wolfe, Joanne; Collura, Christopher
The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make prognostication extremely difficult. The uncertainty of prognostication and the available medical technologies make both the neonatal intensive care unit and the pediatric intensive care unit locations where many children will receive Pediatric Palliative Care. Health care providers in the neonatal intensive care unit and pediatric intensive care unit should integrate fundamental Pediatric Palliative Care principles into their everyday practice.
Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai
The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ(2) = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ(2) = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.
... Patients and Families Take the Quiz What Is Palliative Care? Definition Palliative care (pronounced pal-lee-uh- ... more control over your care. A Partnership of Palliative Care Team, Patient and Family Palliative care teams ...
Mun, Eluned; Nakatsuka, Craig; Umbarger, Lillian; Ruta, Ruth; McCarty, Tracy; Machado, Cynthia; Ceria-Ulep, Clementina
Objective: For improved utilization of the existing palliative care team in the intensive care unit (ICU), a process was needed to identify patients who might need a palliative care consultation in a timelier manner. Methods: A systematic method to create a new program that would be compatible with our specific ICU environment and patient population was developed. A literature review revealed a fairly extensive array of reports and numerous clinical practice guidelines, which were assessed for information and strategies that would be appropriate for our unit. Results: The recommendations provided by the Center to Advance Palliative Care from its Improving Palliative Care in the ICU project were used to successfully implement a new palliative care initiative in our ICU. Conclusion: The guidelines provided by the Improving Palliative Care in the ICU project were an important tool to direct the development of a new palliative care ICU initiative. PMID:28241905
Mun, Eluned; Nakatsuka, Craig; Umbarger, Lillian; Ruta, Ruth; Mccarty, Tracy; Machado, Cynthia; Ceria-Ulep, Clementina
For improved utilization of the existing palliative care team in the intensive care unit (ICU), a process was needed to identify patients who might need a palliative care consultation in a timelier manner. A systematic method to create a new program that would be compatible with our specific ICU environment and patient population was developed. A literature review revealed a fairly extensive array of reports and numerous clinical practice guidelines, which were assessed for information and strategies that would be appropriate for our unit. The recommendations provided by the Center to Advance Palliative Care from its Improving Palliative Care in the ICU project were used to successfully implement a new palliative care initiative in our ICU. The guidelines provided by the Improving Palliative Care in the ICU project were an important tool to direct the development of a new palliative care ICU initiative.
... Feeding Your 1- to 2-Year-Old Palliative Care KidsHealth > For Parents > Palliative Care A A A ... decisions about their child's care. Who Needs Palliative Care? Any child who has a serious, complex, or ...
Toevs, Christine C
The purpose of palliative medicine is to prevent and relieve suffering and to help patients and their families set informed goals of care and treatment. Palliative medicine can be provided along with life-prolonging treatment or as the main focus of treatment. Increasingly, palliative medicine has a role in the surgical intensive care unit (SICU) and trauma. Data show involving palliative medicine in the SICU results in decreased length of stay, improved communication with families and patients, and earlier setting of goals of care, without increasing mortality. The use of triggers for palliative medicine consultation improves patient-centered care in the SICU. Copyright Â© 2012 Elsevier Inc. All rights reserved.
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.
Mosenthal, Anne C; Weissman, David E; Curtis, J Randall; Hays, Ross M; Lustbader, Dana R; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Bassett, Rick; Boss, Renee D; Brasel, Karen J; Campbell, Margaret; Nelson, Judith E
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. 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. 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
Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Shoji, Ayaka; Chiba, Yurika; Miyazaki, Tamana; Tsuneto, Satoru; Shima, Yasuo
The study purpose was to understand the perspectives of bereaved family members regarding palliative care unit (PCU) and palliative care and to compare perceptions of PCU before admission and after bereavement. A cross-sectional questionnaire survey was conducted, and the perceptions of 454 and 424 bereaved family members were obtained regarding PCU and palliative care, respectively. Family members were significantly more likely to have positive perceptions after bereavement (ranging from 73% to 80%) compared to before admission (ranging from 62% to 71%). Bereaved family members who were satisfied with medical care in the PCU had a positive perception of the PCU and palliative care after bereavement. Respondents younger than 65 years of age were significantly more likely to have negative perceptions of PCU and palliative care.
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
Mosenthal, Anne C.; Weissman, David E.; Curtis, J. Randall; Hays, Ross M.; Lustbader, Dana R.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret; Nelson, Judith E.
Objective 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. Conclusions 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
Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...
Nakazawa, Kazuhiro; Kizawa, Yoshiyuki; Maeno, Takami; Takayashiki, Ayumi; Abe, Yasushi; Hamano, Jun; Maeno, Tetsuhiro
To clarify physicians' practices and attitudes regarding advance care planning (ACP) in palliative care units (PCUs) in Japan, we conducted a self-completed questionnaire survey of 203 certificated PCUs in 2010. Ninety-nine physicians participated in the survey. Although most Japanese palliative care physicians recognized the importance of ACP, many failed to implement aspects of patient-directed ACP that they acknowledged to be important, such as recommending completion of advance directives (ADs), designation of health care proxies, and implementing existing ADs. The physicians' general preference for family-centered decision making and their feelings of difficulty and low confidence regarding ACP most likely underlie these results. The discrepancy between physicians' practices and their recognition of the importance of ACP suggests an opportunity to improve end-of-life care. © The Author(s) 2013.
Marçola, Ligia; de Barbosa, Silvia Maria Macedo; Zoboli, Ivete; Polastrini, Rita Tiziana Verardo; Ceccon, Maria Esther Jurfest
ABSTRACT Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. Methods: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis. Results: During the study period, 49 children died after at least 48 hours from the time of admission. Of those, 18% children were extremely premature infants and 77% children had malformations. Although necessary for all of the patients in this study, palliative care was provided for only 20% of patients who died. Among the 12 babies who were not resuscitated, 33% of babies were not in palliative care. The Pain and Palliative Care Unit of the institution followed only four neonates in palliative care. These patients were using many invasive devices, had high therapeutic investment, and also altered pain scale scores. Conclusions: This study exhibited a large proportion of newborn infants with serious diseases and health conditions. In a few cases the patients received palliative care, but most of them were not even discussed under palliative point of view. We hope that this study will call attention to the need to propose protocols and implement training for the best treatment of these children. PMID:28977325
... Looking for Health Lessons? Visit KidsHealth in the Classroom What Other Parents Are Reading Is Your Child ... a team of medical personnel — including doctors, pain management specialists, nurses, social workers, and therapists — palliative care ...
Penrod, Joan D; Pronovost, Peter J; Livote, Elayne E; Puntillo, Kathleen A; Walker, Amy S; Wallenstein, Sylvan; Mercado, Alice F; Swoboda, Sandra M; Ilaoa, Debra; Thompson, David A; Nelson, Judith E
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. None. 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
Palliative care prevents and relieves total pain of patients and their families and improves their quality of life. The author describes the work of anesthesiologists in palliative care unit as ward staffs. The need for palliative care units is increasing and new palliative care units are being established throughout Japan. Anesthesiologists are involved in anesthesia, pain management intensive care, emergency medicine and palliative care. The anesthesiologists in palliative care are involved in use of opioid and nerve block for treating physical pain. Sedatives such as minor tranquilizer to sedate a patient under regional anesthesia are used by anesthesiologists in operating rooms. Anesthesiologists manage the patients who need to be sedated for relief of refractory sufferings by sedative drugs in palliative care unit It is important that we anesthesiologists walk alongside the patients when they need to be heard in the end of life stage. We expect that it is a key point to palliate spiritual pain of the patients. I hope many young anesthesiologists serve as capable members in the palliative care unit in the future.
Masel, Eva K; Kitta, Anna; Huber, Patrick; Rumpold, Tamara; Unseld, Matthias; Schur, Sophie; Porpaczy, Edit; Watzke, Herbert H
Objective The aims of the study were to examine a) patients’ knowledge of palliative care, b) patients’ expectations and needs when being admitted to a palliative care unit, and c) patient’s concept of a good palliative care physician. Methods The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques. Results The results revealed four themes: (1) information about palliative care, (2) supportive care needs, (3) being treated in a palliative care unit, and (4) qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient’s language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment. Conclusions The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient’s needs will enable medical teams to improve professional and individualized care. PMID:27389693
Swetz, Keith M; Mansel, J Keith
Medical advances over the past 50 years have helped countless patients with advanced cardiac disease or who are critically ill in the intensive care unit (ICU), but have added to the ethical complexity of the care provided by clinicians, particularly at the end of life. Palliative care has the primary aim of improving symptom burden, quality of life, and the congruence of the medical plan with a patient's goals of care. This article explores ethical issues encountered in the cardiac ICU, discusses key analyses of these issues, and addresses how palliative care might assist medical teams in approaching these challenges. Copyright © 2013 Elsevier Inc. All rights reserved.
Wiencek, Clareen; Coyne, Patrick
To provide an overview of the four major palliative care delivery models: ambulatory clinics, home-based programs, inpatient palliative care units, and inpatient consultation services. The advantages and disadvantages of each model and the generalist and specialist roles in palliative care will be discussed. Literature review. The discipline of palliative care continues to experience growth in the number of programs and in types of delivery models. Ambulatory- and home-based models are the newest on the scene. Nurses caring for oncology patients with life-limiting disease should be informed about these models for optimal impact on patient care outcomes. Oncology nurses should demonstrate generalist skills in the care of the seriously ill and access specialist palliative care providers as warranted by the patient's condition.
Tardy, B; Picard, S; Guirimand, F; Chapelle, C; Danel Delerue, M; Celarier, T; Ciais, J-F; Vassal, P; Salas, S; Filbet, M; Gomas, J-M; Guillot, A; Gaultier, J-B; Merah, A; Richard, A; Laporte, S; Bertoletti, L
Essentials Bleeding incidence as hemorrhagic risk factors are unknown in palliative care inpatients. We conducted a multicenter observational study (22 Palliative Care Units, 1199 patients). At three months, the cumulative incidence of clinically relevant bleeding was 9.8%. Cancer, recent bleeding, thromboprophylaxis and antiplatelet therapy were independent risk factors.
Mazutti, Sandra Regina Gonzaga; Nascimento, Andréia de Fátima; Fumis, Renata Rego Lins
Objective To estimate the incidence of limitations to Advanced Life Support in critically ill patients admitted to an intensive care unit with integrated palliative care. Methods This retrospective cohort study included patients in the palliative care program of the intensive care unit of Hospital Paulistano over 18 years of age from May 1, 2011, to January 31, 2014. The limitations to Advanced Life Support that were analyzed included do-not-resuscitate orders, mechanical ventilation, dialysis and vasoactive drugs. Central tendency measures were calculated for quantitative variables. The chi-squared test was used to compare the characteristics of patients with or without limits to Advanced Life Support, and the Wilcoxon test was used to compare length of stay after Advanced Life Support. Confidence intervals reflecting p ≤ 0.05 were considered for statistical significance. Results A total of 3,487 patients were admitted to the intensive care unit, of whom 342 were included in the palliative care program. It was observed that after entering the palliative care program, it took a median of 2 (1 - 4) days for death to occur in the intensive care unit and 4 (2 - 11) days for hospital death to occur. Many of the limitations to Advanced Life Support (42.7%) took place on the first day of hospitalization. Cardiopulmonary resuscitation (96.8%) and ventilatory support (73.6%) were the most adopted limitations. Conclusion The contribution of palliative care integrated into the intensive care unit was important for the practice of orthothanasia, i.e., the non-extension of the life of a critically ill patient by artificial means. PMID:27626949
Nordgren, Lena; Olsson, Henny
Earlier research has shown that physicians and nurses are motivated to provide good palliative care, but several factors prevail that prevent the best care for dying patients. To provide good palliative care it is vital that the relationship between nurses and physicians is one based on trust, respect and sound communication. However, in settings such as a coronary care unit, disagreement sometimes occurs between different professional groups regarding care of dying patients. The aim of this study was to describe and understand physicians' and nurses' perceptions on their working relationship with one another and on palliative care in a coronary care unit setting. Using a convenience sample, professional caregivers were interviewed at their work in a coronary care unit in Sweden. Data collection and analysis were done concurrently using a qualitative approach. From the interviews, a specific pattern of concepts was identified. The concepts were associated with a dignified death, prerequisites for providing good palliative care and obstacles that prevented such care. Caregivers who work in a coronary care unit are highly motivated to provide the best possible care and to ensure a dignified death for their patients. Nevertheless, they sometimes fail in their intentions because of several obstacles that prevent good quality care from being fully realized. To improve practice, more attention should be paid to increasing dying patients' well-being and participation in care, improving strategic decision-making processes, offering support to patients and their relatives, and improving communication and interaction among caregivers working in a coronary care unit. Caregivers will be able to support patients and relatives better if there are good working relations in the work team and through better communication among the various professional caregivers.
Rodríguez-Calero, Miguel Ángel; Julià-Mora, Joana María; Prieto-Alomar, Araceli
Previous to wider prevalence studies, we designed the present pilot study to assess concordance and time invested in patient evaluations using a palliative care needs assessment tool. We also sought to estimate the prevalence of palliative care needs in an acute care hospital unit. A cross-sectional study was carried out, 4 researchers (2 doctors and 2 nurses) independently assessed all inpatients in an acute care hospital unit in Manacor Hospital, Mallorca (Spain), using the validated tool NECPAL CCOMS-ICO©, measuring time invested in every case. Another researcher revised clinical recordings to analise the sample profile. Every researcher assessed 29 patients, 15 men and 14 women, mean age 74,03 ± 10.25 years. 4-observer concordance was moderate (Kappa 0,5043), tuning out to be higher between nurses. Mean time per patient evaluation was 1.9 to 7.72 minutes, depending on researcher. Prevalence of palliative care needs was 23,28%. Moderate concordance lean us towards multidisciplinary shared assessments as a method for future research. Avarage of time invested in evaluations was less than 8 minutes, no previous publications were identified regarding this variable. More than 20% of inpatients of the acute care unit were in need of palliative care. Copyright © 2015 Elsevier España, S.L.U. All rights reserved.
Ho, Lawrence A.; Engelberg, Ruth A.; Curtis, J. Randall; Nelson, Judith; Luce, John; Ray, Daniel E.; Levy, Mitchell M.
Objective 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. Design Multi-site study using self-report questionnaires. Setting Thirteen hospitals throughout the United States. Participants Convenience sample of 188 physicians working in critical care (attending physicians, critical care fellows, resident physicians) and 289 critical care nurses. Measurements 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. Conclusion Our study supports the content
Shirado, Akemi; Morita, Tatsuya; Okusaka, Takuji; Sakamoto, Yasunari; Kizawa, Yoshiyuki; Shima, Yasuo; Shimizu, Chikako
We conducted a nation-wide survey to clarify the availability of palliative care units and outpatient palliative care services in Japan. We sent 306 questionnaires to the managing physicians of all certified palliative care units, and obtained 243 responses (79%). Eighteen percent reported that patients undergoing anti-cancer treatment are not able to apply for admission; 82% offered outpatient services. In 20% of the institutions, waiting time before admission was 11 days or longer for patients with pain and a predicted prognosis of less than 1 month. Only 10% reported that all patients who expressed a desire for admission were actually able to be admitted. Oncologists and palliative care physicians need to discuss the creation of a system so that all patients who want them can actually avail of palliative care services.
Penrod, Joan D.; Pronovost, Peter J.; Livote, Elayne E.; Puntillo, Kathleen A.; Walker, Amy S.; Wallenstein, Sylvan; Mercado, Alice F.; Swoboda, Sandra M.; Ilaoa, Debra; Thompson, David A.; Nelson, Judith E.
Objectives 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. Design Prospective, multisite, observational study of performance of key intensive care unit palliative care processes. Settings 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. Patients Consecutive adult patients with length of intensive care unit stay ≥5 days. Interventions None. 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
Piedrafita-Susín, A B; Yoldi-Arzoz, E; Sánchez-Fernández, M; Zuazua-Ros, E; Vázquez-Calatayud, M
Adequate provision of palliative care by nursing in intensive care units is essential to facilitate a "good death" to critically ill patients. To determine the perceptions, experiences and knowledge of intensive care nurses in caring for terminal patients. A literature review was conducted on the bases of Pubmed, Cinahl and PsicINFO data using as search terms: cuidados paliativos, UCI, percepciones, experiencias, conocimientos y enfermería and their alternatives in English (palliative care, ICU, perceptions, experiences, knowledge and nursing), and combined with AND and OR Boolean. Also, 3 journals in intensive care were reviewed. Twenty seven articles for review were selected, most of them qualitative studies (n=16). After analysis of the literature it has been identified that even though nurses perceive the need to respect the dignity of the patient, to provide care aimed to comfort and to encourage the inclusion of the family in patient care, there is a lack of knowledge of the end of life care in intensive care units' nurses. This review reveals that to achieve quality care at the end of life, is necessary to encourage the training of nurses in palliative care and foster their emotional support, to conduct an effective multidisciplinary work and the inclusion of nurses in decision making. Copyright © 2014 Elsevier España, S.L.U. y SEEIUC. All rights reserved.
Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and ...
Cox, Christopher E; Curtis, J Randall
A decade ago, the major obstacles to integration of palliative care into the intensive care unit (ICU) were the limited number of providers trained in palliative care, an immature evidence base, and a lack of appreciation for the importance of palliative care in the ICU. In 2016, the palliative care workforce has expanded markedly and there is growing appreciation of the benefits of palliative care, whether provided by a generalist (intensivist, nurse, social worker) or palliative care specialist. However, there is evidence that the quality of ICU-based palliative care is often suboptimal. A major barrier to more broadly addressing this quality problem is the lack of scalable ICU-based palliative care models that use technology to deliver efficient, collaborative palliative care in the ICU setting to the right patient at the right time. To address these challenges, we first review strengths and limitations of current care models as the basis for our novel conceptual framework that uses the electronic health record as a platform on which external innovations can be built, including: (1) screening for patients at risk for poor outcomes, (2) integrating patient- and family-reported needs, (3) personalizing care, and (4) directing generalist versus specialist triage algorithms. In the approaches considered, we describe current challenges and propose specific solutions that use technology to improve the quality of the human interaction in a stressful, complex environment.
Cheng, Jennifer; Vollenweider, Daniela; Galusca, Dragos; Smith, Thomas J.; Pronovost, Peter J.
Abstract Background: Over the last 20 years, multiple interventions to better integrate palliative care and intensive care unit (ICU) care have been evaluated. This systematic review summarizes these studies and their outcomes. Methods: We searched MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Cochrane Library, and the Web of Science; performed a search of articles published by opinion leaders in the field; and reviewed hand-search articles as of August 13, 2012. The terms “palliative care” and “intensive care unit” were mapped to MeSH subject headings and “exploded.” We included trials of adult patients that evaluated an ICU intervention and addressed Robert Wood Johnson group-identified domains of high-quality end-of-life care in the ICU. We excluded case series, editorials, and review articles. We compared two types of interventions, integrative and consultative, focusing on the outcomes of patient and family satisfaction, mortality, and ICU and hospital length of stay (LOS), because these were most prevalent among studies. Results: Our search strategy yielded 3328 references, of which we included 37 publications detailing 30 unique interventions. Interventions and outcome measures were heterogeneous, and many studies were underpowered and/or subject to multiple biases. Most of the interventions resulted in a decrease in hospital and ICU LOS. Few interventions significantly affected satisfaction. With one exception, the interventions decreased or had no effect on mortality. There was no evidence of harm from any intervention. Conclusions: Heterogeneity of interventions made comparison of ICU-based palliative care interventions difficult. However, existing evidence suggests proactive palliative care in the ICU, using either consultative or integrative palliative care interventions, decrease hospital and ICU LOS, do not affect satisfaction, and either decrease or do not affect mortality. PMID:24517300
Seccareccia, Dori; Wentlandt, Kirsten; Kevork, Nanor; Workentin, Kevin; Blacker, Susan; Gagliese, Lucia; Grossman, Daphna; Zimmermann, Camilla
Clinician-patient communication is central in palliative care, but it has not been described qualitatively which specific elements of communication are important for high-quality palliative care, particularly in the inpatient setting. Our aim was to identify elements of communication that are central to quality of care and satisfaction with care on palliative care units (PCUs), as described by inpatients, family caregivers, and health care providers. Qualitative interviews with patients/caregivers and focus groups with staff were conducted on four PCUs. Semi-structured interviews and focus groups elicited thoughts about the characteristics of satisfaction with care and quality of care for PCU inpatients and their family caregivers. Data were analyzed using a grounded theory method with an inductive, constant comparison approach; themes were coded to saturation. There were 46 interviews and eight focus groups. Communication was the most prevalent theme regarding satisfaction and quality of care, with five subthemes describing elements important to patients, caregivers, and staff. These included: 1) building rapport with patients and families to build trust and kinship; 2) addressing expectations and explaining goals of care; 3) keeping patients and families informed about the patient's condition; 4) listening actively to validate patients' concerns and individual needs; and 5) providing a safe space for conversations about death and dying. Patients, family caregivers, and health care providers affirmed that communication is a central element of quality of care and family satisfaction on PCUs. The five subthemes identified may serve as a structure for education and for quality improvement tools in palliative care inpatient settings.
Souza, Paola Nóbrega; de Miranda, Erique José Peixoto; Cruz, Ronaldo; Forte, Daniel Neves
Objective To describe the characteristics of patients with HIV/AIDS and to compare the therapeutic interventions and end-of-life care before and after evaluation by the palliative care team. Methods This retrospective cohort study included all patients with HIV/AIDS admitted to the intensive care unit of the Instituto de Infectologia Emílio Ribas who were evaluated by a palliative care team between January 2006 and December 2012. Results Of the 109 patients evaluated, 89% acquired opportunistic infections, 70% had CD4 counts lower than 100 cells/mm3, and only 19% adhered to treatment. The overall mortality rate was 88%. Among patients predicted with a terminally ill (68%), the use of highly active antiretroviral therapy decreased from 50.0% to 23.1% (p = 0.02), the use of antibiotics decreased from 100% to 63.6% (p < 0.001), the use of vasoactive drugs decreased from 62.1% to 37.8% (p = 0.009), the use of renal replacement therapy decreased from 34.8% to 23.0% (p < 0.0001), and the number of blood product transfusions decreased from 74.2% to 19.7% (p < 0.0001). Meetings with the family were held in 48 cases, and 23% of the terminally ill patients were discharged from the intensive care unit. Conclusion Palliative care was required in patients with severe illnesses and high mortality. The number of potentially inappropriate interventions in terminally ill patients monitored by the palliative care team significantly decreased, and 26% of the patients were discharged from the intensive care unit. PMID:27737420
Souza, Paola Nóbrega; Miranda, Erique José Peixoto de; Cruz, Ronaldo; Forte, Daniel Neves
To describe the characteristics of patients with HIV/AIDS and to compare the therapeutic interventions and end-of-life care before and after evaluation by the palliative care team. This retrospective cohort study included all patients with HIV/AIDS admitted to the intensive care unit of the Instituto de Infectologia Emílio Ribas who were evaluated by a palliative care team between January 2006 and December 2012. Of the 109 patients evaluated, 89% acquired opportunistic infections, 70% had CD4 counts lower than 100 cells/mm3, and only 19% adhered to treatment. The overall mortality rate was 88%. Among patients predicted with a terminally ill (68%), the use of highly active antiretroviral therapy decreased from 50.0% to 23.1% (p = 0.02), the use of antibiotics decreased from 100% to 63.6% (p < 0.001), the use of vasoactive drugs decreased from 62.1% to 37.8% (p = 0.009), the use of renal replacement therapy decreased from 34.8% to 23.0% (p < 0.0001), and the number of blood product transfusions decreased from 74.2% to 19.7% (p < 0.0001). Meetings with the family were held in 48 cases, and 23% of the terminally ill patients were discharged from the intensive care unit. Palliative care was required in patients with severe illnesses and high mortality. The number of potentially inappropriate interventions in terminally ill patients monitored by the palliative care team significantly decreased, and 26% of the patients were discharged from the intensive care unit.
Salas Arrambide, M; Gabaldón Poc, O; Mayoral Miravete, J L; Pérez-Yarza, E G; Amayra Caro, I
Palliative care is essential in the pediatric intensive care unit (PICU). Because of the mortality rates and the presence of life-threatening conditions in children admitted to the PICU, pediatricians must be prepared to provide palliative care independently of cure-directed therapies. The present article reviews certain issues, including the decision-making process in the PICU, psychosocial needs and susceptibility to burnout among PICU staff, and the emotions and attitudes of the staff when a child dies. We provide some guidelines on how to act when a child dies, how to meet with parents after the child's death and how to follow-up parental bereavement. Strategies that can help PICU pediatricians to cope with the numerous loses they experience are suggested.
Quill, Caroline M; Sussman, Bernard L; Quill, Timothy E
Over the course of the last half-century, intensive care units have been the setting for many ethical and legal debates in medicine. This article outlines 3 important domains that lie at the intersection of critical care, palliative care, ethics, and the law: withholding and withdrawal of potentially life-sustaining therapies, making decisions for critically ill patients who lack decision-making capacity, and approaching cases of perceived futility when patients and families still request everything that is medically possible. Important principles and precedents that underlie our understanding of how nurses should approach critically ill patients are reviewed. Copyright © 2015 Elsevier Inc. All rights reserved.
Zargham-Boroujeni, Ali; Zoafa, Aniyehsadat; Marofi, Maryam; Badiee, Zohreh
Clinical guidelines are important instruments for increasing the quality of clinical practice in the treatment team. Compilation of clinical guidelines is important due to special condition of the neonates and the nurses facing critical conditions in the neonatal intensive care unit (NICU). With 98% of neonatal deaths occurring in NICUs in the hospitals, it is important to pay attention to this issue. This study aimed at compilation of the neonatal palliative care clinical guidelines in NICU. This study was conducted with multistage comparative strategies with localization in Isfahan in 2013. In the first step, the components of the neonatal palliative care clinical guidelines were determined by searching in different databases. In the second stage, the level of expert group's consensus with each component of neonatal palliative care in the nominal group and focus group was investigated, and the clinical guideline was written based on that. In the third stage, the quality and applicability were determined with the positive viewpoints of medical experts, nurses, and members of the science board of five cities in Iran. Data were analyzed by descriptive statistics through SPSS. In the first stage, the draft of neonatal palliative care was designed based on neonates', their parents', and the related staff's requirements. In the second stage, its rank and applicability were determined and after analyzing the responses, with agreement of the focus group, the clinical guideline was written. In the third stage, the means of indication scores obtained were 75%, 69%, 72%, 72%, and 68% by Appraisal of Guidelines for Research and Evaluation (AGREE) instrument. The compilation of the guideline can play an effective role in provision of neonatal care in nursing.
Gulini, Juliana El Hage Meyer de Barros; Nascimento, Eliane Regina Pereira do; Moritz, Rachel Duarte; Rosa, Luciana Martins da; Silveira, Natyele Rippel; Vargas, Mara Ambrosina de Oliveira
To learn the perception of health professionals in an intensive care unit towards palliative care. This was a descriptive and qualitative study based on the converging care approach conducted at an intensive care unit in the South of Brazil. Semi-structured interviews were used to investigate the understanding of the professionals about palliative care in this unit. The data were organized and analyzed using the discourse of the collective subject method with the help of Qualiquantisoft® software. Participants included 37 professionals (12 nurses, 11nursing technicians, 5 physical therapists and 9 doctors). The key ideas extracted from the interviews were: care in the end stage of life that avoids futile measures; comfort care; lack of standardized care and lack of team training. The professionals perceived palliative care as appropriate in the last stages of life, with no need for futile treatment or as comfort measures. However, they are aware of the lack of standardization and lack of capacity building in this area, which leads them to conceive palliative care as terminal care, and measures are recommended to break with this stigma. Conhecer a percepção dos profissionais de saúde de uma Unidade de Terapia Intensiva acerca do cuidado paliativo. Pesquisa descritiva, qualitativa do tipo Convergente Assistencial realizada em uma Unidade de Terapia Intensiva da região sul do Brasil. Utilizou-se de entrevista semiestruturada que investigou o entendimento e a compreensão sobre cuidado paliativo nesta unidade. Os dados foram organizados e analisados pela técnica do discurso do sujeito coletivo com auxílio do software Qualiquantisoft®. Participaram do estudo 37 profissionais (12 enfermeiros, 11 técnicos de enfermagem, cinco fisioterapeutas e nove médicos). As ideias centrais extraídas dos relatos: cuidado na fase terminal da vida sem medidas fúteis; cuidados de conforto; falta uniformizar a assistência e falta capacitação para a equipe. Os profissionais
... emotional distress. A special type of care called palliative care is available to help you get relief from these and other symptoms. You can receive palliative care at any stage of your serious illness, including ...
Donaghy, Kevin; Devlin, Breige
This small-scale 10-month study evaluated teamworking within a specialist palliative care team. The study aims were to: collect, analyse and summarize information on how team members perceive teamworking; compare team members' perceptions after a teambuilding workshop; and to evaluate the longer term effect of this training on the team. A group of practitioners from a local Marie Curie Cancer Care Centre was selected and included members from all available disciplines. A piloted questionnaire was used to obtain qualitative and quantitative input. The team as a whole scored themselves above average on almost all counts. Following the teambuilding workshop significant improvement was seen in areas such as role appreciation and communication but not all improvements were long lasting. A perception of understaffing was noted as being one of the largest negative influences on teamwork whereas the setting and maintaining of agreed team objectives and having sufficient education opportunity were positive influences. Although teambuilding sessions appear to have the potential to produce the desired benefits, they should not be initiated at a time when staff already feel anxiety over their workload.
Fainsinger, R. L.; Bruera, E.; MacMillan, K.
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. Images p1984-a p1986-a PMID:9386885
Gutierrez, Cristina; Hsu, William; Ouyang, Qin; Yao, Haijun; Pollack, Simcha; Pan, Cynthia X
The literature describing the attitude of Asians toward palliative care in the intensive care unit (ICU) is scarce. The purpose of this study was to compare outcomes of Asians and people of other ethnicities after palliative care intervention in the ICU. A retrospective chart review was conducted of all ICU patients evaluated by palliative care; the outcomes measured were incidence of life-sustaining treatments, institution of advance care directives, and preferences for end-of-life care. The palliative care team evaluated 119 patients (46.2 percent Caucasian, 27.2 percent Asian, and 26.1 percent other ethnicities). There were no differences in demographics or clinical variables. Thirty-six percent of the Asians, 49 percent of the Caucasians, and 28.6 percent of the patients of other ethnicities (p = 0.19) had healthcare proxies. The palliative care team increased advance care directives by more than 40 percent in all groups (p < 0.001). There were no differences in the use of life-sustaining treatments or preferences for comfort measures among ethnic groups. Asians are as likely as people of other ethnicities to decide on advance care directives, life-sustaining treatments, and comfort measures after palliative care evaluation in the ICU.
Integrating Palliative Care into the Care of Neurocritically Ill Patients: A Report from The IPAL-ICU (Improving Palliative Care in the Intensive Care Unit) Project Advisory Board and the Center to Advance Palliative Care
Frontera, Jennifer A.; Curtis, J. Randall; Nelson, Judith E.; Campbell, Margaret; Gabriel, Michelle; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Lustbader, Dana R.; Brasel, Karen J.; Weiss, Stefanie P.; Weissman, David E.
Objectives To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; To discuss key prognostic aids and their limitations for neurocritical illnesses; To review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; To describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. Data Sources A search of Pubmed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term “palliative care,” “supportive care,” “end-of-life care,” “withdrawal of life-sustaining therapy,” “limitation of life support,” “prognosis,” or “goals of care” together with “neurocritical care,” “neurointensive care,” “neurological,” “stroke,” “subarachnoid hemorrhage,” “intracerebral hemorrhage,” or “brain injury.” Data Extraction and Synthesis We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert Advisory Board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. Conclusions Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support, will
Viney, Linda L.; And Others
Compared quality of life of terminal cancer patients (n=182) in two palliative care units with that of those in general hospital. Patients in specialized palliative care units were found to differ from those dying in hospital, showing less indirectly expressed anger but more positive feelings. They also reported more anxiety about death but less…
Alsirafy, Samy A; Abou-Alia, Ahmad M; Ghanem, Hafez M
Hospital length of stay (LoS) may be used to assess end-of-life care aggressiveness and health care delivery efficiency. We describe the terminal hospitalization LoS of patients with cancer managed by a hospital-based palliative care (PC) program comprising a palliative care consultation (PCC) service and an inpatient palliative care unit (PCU). A total of 328 in-hospital cancer deaths were divided into 2 groups. The PCU group included patients admitted by the PC team directly to the PCU. The PCC group included patients admitted by other specialties and referred to the PCC team. The LoS of the PCU group was significantly shorter than that of the PCC group (9.9 [±9.4] vs 17.8 [±19.7] days, respectively; P < .001). Direct terminal hospitalization to PCU is not associated with longer LoS among cancer deaths managed by a hospital-based PC service.
Walker, Deborah Kirk; Edwards, Rebecca L.; Bagcivan, Gulcan; Bakitas, Marie A.
As the global cancer burden grows, so too will global inequities in access to cancer and palliative care increase. This paper will describe the cancer and palliative care landscape relative to nursing practice, education, and research, and emerging global collaborations in the United States (U.S.), Turkey, and Malawi. It is imperative that nurses lead efforts to advance health and strengthen education in these high-need areas. Leaders within the University of Alabama at Birmingham School of Nursing, through a Pan American Health Organization/World Health Organization Nursing Collaborating Center, have initiated collaborative projects in cancer and palliative care between the U.S., Turkey, and Malawi to strengthen initiatives that can ultimately transform practice. These collaborations will lay a foundation to empower nurses to lead efforts to reduce the global inequities for those with cancer and other serious and life-limiting illnesses. PMID:28695167
Geoghan, Darlene A
Palliative care is care that is given to patients and their significant others who are experiencing life-threatening or life-altering illnesses by providing emotional, spiritual, and physical support. Patients can continue to receive aggressive medical treatment while receiving palliative care and recovery is possible. Pain control is a top priority in palliative care. Non-pharmacological interventions have also been shown to be effective in palliative care as well. Palliative care is truly a holistic, collaborative practice engaging many disciplines in the care of the patient and their love ones.
In this study, a hematology/oncology computerized discharge database was qualitatively and quantitatively reviewed using an empirical methodology. The goal was to identify potential patients for admission to a planned acute-care, palliative medicine inpatient unit. Patients were identified by the International Classifications of Disease (ICD-9) codes. A large heterogenous population, comprising up to 40 percent of annual discharges from the Hematology/Oncology service, was identified. If management decided to add an acute-care, palliative medicine unit to the hospital, these are the patients who would benefit. The study predicted a significant change in patient profile, acuity, complexity, and resource utilization in current palliative care services. This study technique predicted the actual clinical load of the acute-care unit when it opened and was very helpful in program development. Our model predicted that 695 patients would be admitted to the acute-care palliative medicine unit in the first year of operation; 655 patients were actually admitted during this time.
Lentz, Judy C
Walking the journey of serious illness is very difficult and stressful for patients and families. A universal principle of palliative care is caring for the patient/ family unit. This article introduces a model for the Palliative Care Doula for experienced and advanced practice palliative care nurses to support patients and families during the traumatic and vulnerable period of end-of-life care.
Miyashita, Mitsunori; Hirai, Kei; Morita, Tatsuya; Sanjo, Makiko; Uchitomi, Yosuke
We investigated the barriers to referral to inpatient palliative care units (PCUs) through a qualitative study across various sources of information, including terminal cancer patients, their families, physicians, and nurses. There were 63 participants, including 13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in palliative care and acute care cancer settings from five regional cancer institutes in Japan. Semi-structured interviews were conducted regarding barriers to referral to PCU, and data were analyzed by content analysis method. A total of 21 barriers were identified by content analysis. The leading barriers were (1) a negative image of PCUs by patients and families (n = 39), (2) delay of termination of anti-cancer treatment by physicians in the general wards (n = 24), (3) unwillingness to end anti-cancer treatment and denial of the fatal nature of the disease by patients and families (n = 22), (4) patient's wish to receive care from familiar physicians and nurses (n = 20), and (5) insufficient knowledge of PCUs by medical staff in general wards (n = 17). To correct these unfavorable images and misconceptions of PCUs, it is important to eliminate the negative image of PCUs from the general population, patients, families, and medical staffs. In addition, early introduction of palliative care options to patients and communication skills training regarding breaking bad news are relevant issues for a smooth transition from anti-cancer treatment to palliative care.
Lindley, Lisa C; Mixer, Sandra J; Cozad, Melanie J
The nursing shortage is projected to intensify in the United States. Organizations providing specialized hospice and palliative care will be particularly hard hit. The purpose of our study was to examine the influence of the nursing unit on registered nurse (RN) vacancies and test the moderating role of recruitment strategies in perinatal hospices. We estimated the association between the nursing unit and RN vacancies and tested the interaction effects of recruitment strategies (signing bonus and recruitment bonus). Our findings showed that increasing RN unit size and nursing leadership directly affected vacancies and that recruitment bonuses had stronger influence on reducing vacancies than signing bonuses. The findings offer critical insights for hospice administrators in attracting nurses among specialized hospice and palliative care providers. © The Author(s) 2015.
Groenvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang
Aims The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. Main variables The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. Descriptive data In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness. PMID:27822111
Johnston, Donna L.; Hentz, Tracy A.; Friedman, Debra L.
Pediatric palliative care provides benefit to children living with life-threatening or terminal conditions. Palliative care should be available to all seriously ill children. Palliative care includes the treatment of symptoms such as pain, nausea, dyspnea, constipation, anorexia, and sialorrhea. This care can occur in a variety of settings, from home to hospice to hospital, and must include bereavement care and follow up after the death of a child. There are many challenges in pediatric palliative care, but continued research into this important area of pediatrics will lead to improvements in the care of children with life-threatening illnesses. PMID:23118638
Senderovich, Helen; Ip, Mary Lou; Berall, Anna; Karuza, Jurgis; Gordon, Michael; Binns, Malcolm; Wignarajah, Shaira; Grossman, Daphna; Dunal, Lynda
Complementary therapies are increasingly used in palliative care as an adjunct to the standard management of symptoms to achieve an overall well-being for patients with malignant and non-malignant terminal illnesses. A Therapeutic Touch Program was introduced to a geriatric Palliative Care Unit (PCU) in October 2010 with two volunteer Therapeutic Touch Practitioners providing treatment. To conduct a retrospective review of Therapeutic Touch services provided to patients in an in-patient geriatric palliative care unit in order to understand their responses to Therapeutic Touch. A retrospective medical chart review was conducted on both patients who received Therapeutic Touch as well as a random selection of patients who did not receive Therapeutic Touch from October 2010-June 2013. Client characteristics and the Therapeutic Touch Practitioners' observations of the patients' response to treatment were collected and analyzed. Patients who did not receive Therapeutic Touch tended to have lower admitting Palliative Performance Scale scores, shorter length of stay and were older. Based on a sample of responses provided by patients and observed by the Therapeutic Touch practitioner, the majority of patients receiving treatment achieved a state of relaxation or sleep. This retrospective chart review suggests that implementation of a TT program for an inpatient geriatric Palliative Care Unit is feasible, and appears to be safe, and well-tolerated. Moreover, patient responses, as recorded in the Therapeutic Touch practitioners' session notes, suggest beneficial effects of Therapeutic Touch for a significant number of participants with no evidence of negative sequelae. Therefore, the use of TT in this difficult setting appears to have potential value as an adjunct or complementary therapy to help patients relax. Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.
Younge, Noelle; Smith, P. Brian; Goldberg, Ronald N.; Brandon, Debra H.; Simmons, Catherine; Cotten, C. Michael; Bidegain, Margarita
Objective Evaluate changes in end-of-life care following initiation of a Palliative Care Program in a neonatal intensive care unit. Study Design Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprised of medication guidelines, an individualized order set, a nursing care plan, and staff education. Result 82 infants died before (Era 1) and 68 infants died after implementation of the program (Era 2). Morphine use was similar [88% vs. 81%; p=0.17], while benzodiazepines use increased in Era 2 [26% vs. 43%; p=0.03]. Withdrawal of life support (73% vs. 63%; p=0.17) and do-not-resuscitate orders (46% vs. 53%; p=0.42) were similar. Do-not-resuscitate orders and family meetings were more frequent among Era 2 infants with activated palliative care orders (n=21) compared to infants without activated orders (n=47). Conclusion End-of-life family meetings and benzodiazepine use increased following implementation of our program, likely reflecting adherence to guidelines and improved communication. PMID:25341195
O'Mahony, Sean; McHenry, Janet; Blank, Arthur E; Snow, Daniel; Eti Karakas, Serife; Santoro, Gabriella; Selwyn, Peter; Kvetan, Vladimir
Nearly half of Americans who die in hospitals spend time in the intensive care unit (ICU) in the last 3 days of life. Minority patients who die in the ICU are less likely to formalize advance directives and surviving family members report lower satisfaction with the provision of information and sensitivity to their cultural traditions at the end-of-life. This is a descriptive report of a convenience sample of 157 consecutive patients served by a palliative care team which was integrated into the operations of an ICU at Montefiore Medical Center in the Bronx, New York, from August 2005 until August 2007. The team included an advance practice nurse (APN) and social worker. A separate case-control study was conducted comparing the length of hospital stay for persons who died in the ICU during the final 6 months of the project, prior to and post-palliative care consultation for 22 patients at the hospital campus where the project team was located versus 24 patients at the other campus. Pharmaco-economic data were evaluated for 22 persons who died with and 43 who died without a palliative care consultation at the intervention campus ICU to evaluate whether the project intervention was associated with an increase in the use of pain medications or alterations in the use of potentially non-beneficial life-prolonging treatments in persons dying in the ICU. Data was abstracted from the medical record with a standardized chart abstraction instrument by an unblinded research assistant. Interviews were conducted with a sample of family members and ICU nurses rating the quality of end-of-life care in the ICU with the Quality of Dying and Death in the ICU instrument (ICUQODD), and a family focus group was also conducted. Forty percent of patients were Caucasian, 35% were African American or Afro-Caribbean, 22% Hispanic and 3% were Asian or other. Exploration of the patients' and families' needs identified significant spiritual needs in 62.4% of cases. Education on the death
Samala, Renato V; Parala-Metz, Armida; Davis, Mellar P
The search for an underlying cause of altered mental status not uncommonly becomes more challenging in the hospice and palliative care setting. Due to multiple coexisting conditions that affect mental status and shifting goals of care, discerning that single cause in this venue can become frustrating and even nonbeneficial at times. We present a case of nonconvulsive status epilepticus (NCSE), which multiple reports have shown to be a rarely contemplated cause of impaired consciousness. A concise review of NCSE follows, with emphasis on conditions that present similarly, precipitating factors, diagnostic and therapeutic considerations, and prognostic implications. Nonconvulsive status epilepticus is a reversible cause of altered consciousness, particularly when recognized promptly. In a palliative care unit, treatment should ultimately be guided by the patient's goals of care. © The Author(s) 2013.
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027
Grøthe, Å; Biong, Stian; Grov, E K
Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward. A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background. Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is "acting with dedication and expertise." The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise.
Moody, Karen; Siegel, Linda; Scharbach, Kathryn; Cunningham, Leslie; Cantor, Rabbi Mollie
Progress in pediatric palliative care has gained momentum, but there remain significant barriers to the appropriate provision of palliative care to ill and dying children, including the lack of properly trained health care professionals, resources to finance such care, and scientific research, as well as a continued cultural denial of death in children. This article reviews the epidemiology of pediatric palliative care, special communication concerns, decision making, ethical and legal considerations, symptom assessment and management, psychosocial issues, provision of care across settings, end-of-life care, and bereavement. Educational and supportive resources for health care practitioners and families, respectively, are included.
Schmalz, Oliver; Strapatsas, Tobias; Alefelder, Christof; Grebe, Scott Oliver
Methicillin-resistant Staphylococcus aureus is a common organism in hospitals worldwide and is associated with morbidity and mortality. However, little is known about the prevalence in palliative care patients. Furthermore, there is no standardized screening protocol or treatment for patients for whom therapy concentrates on symptom control. Examining the prevalence of methicillin-resistant Staphylococcus aureus in palliative care patients as well as the level of morbidity and mortality. We performed a prospective study where methicillin-resistant Staphylococcus aureus screening was undertaken in 296 consecutive patients within 48 h after admission to our palliative care unit. Medical history was taken, clinical examination was performed, and the Karnofsky Performance Scale and Palliative Prognostic Score were determined. Prevalence of Methicillin-resistant Staphylococcus aureus was compared to data of general hospital patients. In total, 281 patients were included in the study having a mean age of 69.7 years (standard deviation = 12.9 years) and an average Karnofsky Performance Scale between 30% and 40%. The mean length of stay was 9.7 days (standard deviation = 7.6 days). A total of 24 patients were methicillin-resistant Staphylococcus aureus positive on the first swab. Median number of swabs was 2. All patients with a negative methicillin-resistant Staphylococcus aureus swab upon admission remained Methicillin-resistant Staphylococcus aureus negative in all subsequent swabs. Our study suggests that the prevalence of Methicillin-resistant Staphylococcus aureus among patients in an in-hospital palliative care unit is much higher than in other patient populations. © The Author(s) 2016.
Tavares, Marianne; Berger, Brian
Abstract Background The provision of complementary therapy in palliative care is rare in Canadian hospitals. An Ontario hospital's palliative care unit developed a complementary therapy pilot project within the interdisciplinary team to explore potential benefits. Massage, aromatherapy, Reiki, and Therapeutic Touch™ were provided in an integrated approach. This paper reports on the pilot project, the results of which may encourage its replication in other palliative care programs. Objectives The intentions were (1) to increase patients'/families' experience of quality and satisfaction with end-of-life care and (2) to determine whether the therapies could enhance symptom management. Results Data analysis (n=31) showed a significant decrease in severity of pain, anxiety, low mood, restlessness, and discomfort (p<0.01, 95% confidence interval); significant increase in inner stillness/peace (p<0.01, 95% confidence interval); and convincing narratives on an increase in comfort. The evaluation by staff was positive and encouraged continuation of the program. Conclusions An integrated complementary therapy program enhances regular symptom management, increases comfort, and is a valuable addition to interdisciplinary care. PMID:24020920
... and Families Take the Quiz What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is specialized ... for both the child and the family. Pediatric palliative care is provided by a team of doctors, ...
Amano, Koji; Nishiuchi, Yasuno; Baba, Mika; Kawasaki, Muneyoshi; Nakajima, Shinichiro; Wakayama, Hiroshi; Watakabe, Akiko; Kunimoto, Hiromi; Morita, Tatsuya
In Japan, regarding the place of end-of-life care, many people preferred the home. However, there is a discrepancy between patients' wishes and the actual circumstances. The primary aim of this study was to explore the factors that determine discharge home of patients in a palliative care unit. A total of 31 patients met the criteria. The patients who could be discharged home (group 1; n = 23) were compared with the others (group 2; n = 8). Palliative prognostic index was significantly lower in group 1 than in group 2 (P = .032). Regarding routes of feeding, oral intake was significantly higher in group 1 than in group 2 (P = .043). That is to say, factors determining discharge home of patients may be influenced by the patient's prognosis and the necessity of a feeding device.
Twamley, Katherine; Craig, Finella; Kelly, Paula; Hollowell, Delia R; Mendoza, Patricia; Bluebond-Langner, Myra
Referrals to children's palliative care services typically occur late in the illness trajectory, with many children who would benefit not referred at all. Previous studies report health care professionals' (HCPs) assessment of various parent-related factors as barriers to referral. We conducted a cross-sectional survey of HCPs working in a paediatric tertiary care hospital in the United Kingdom, with an established paediatric palliative care team, to explore staff perceptions of barriers, knowledge and attitudes, with the aim of developing interventions to increase patient access to palliative care services. Survey respondents evidenced good knowledge of the principles of palliative care in closed questions, but their attitudes expressed in open-text questions and reported reasons to refer to a palliative care service demonstrated an association of palliative care with death and dying. We suggest that the association of palliative care with end of life may be a modifiable factor relevant to late and non-referral and deserving of further investigation and attention in education and training.
Valls, Joan; Porta, Josep; Viñas, Juan
Abstract Introduction: Spiritual needs play an important role in palliative care as both a clinical dimension and a therapeutic strategy. However, recent studies have shown that the management of this dimension still remains a challenge at the clinical level of palliative care. Goals: Our goal was to evaluate the spiritual needs of patients diagnosed with advanced and terminal cancer by the palliative care unit of a hospital in Barcelona, Spain. Methods: An observational study was conducted that involved 50 patients who were recruited between May 2007 and January 2008. A questionnaire was used which included 28 items selected from a review of the literature; the responses were analyzed using a five-point Lickert scale. The results were grouped in 11 categories corresponding to different spiritual needs. Results: Two spiritual needs emerged as the most relevant for the patients: their need to be recognized as a person until the end of their life and their need to know the truth about their illness. The least important spiritual needs were identified as those: for continuity and an afterlife; to get rid of obsessions; to achieve freedom from blame and to be able to forgive others; and the need for reconciliation and to feel forgiven by others. Conclusions: When patients knew the truth about their illnesses and they were treated with dignity, their most important needs were likely to be covered. These results suggest that patients receiving palliative care wish to live for the present with as much normality as possible and show only minor concern for their past and future. PMID:24745870
da Silva, Ceci Figueredo; Souza, Dalila Melo; Pedreira, Larissa Chaves; dos Santos, Manuela Ribeiro; Faustino, Tássia Nery
The scope of this paper was to analyze the perceptions of the multi-professional team on the implementation of palliative care in an adult intensive care unit. An exploratory-descriptive study using a qualitative approach was conducted with 14 health professionals from a public teaching hospital. The information was collected between February and April 2012, by means of semi-structured interviews and non-participatory observation interpreted using content analysis. Three thematic categories were identified: Care for terminal patients in an ICU fostering physical comfort; Lack of preparation of the team in dealing with terminal patients; and Challenges of palliative care practices in the intensive care environment. The interviewed parties reported having some knowledge of the proposal for palliative care though divergences were observed in the therapeutic conduct of the team in the care provided, demonstrating a lack of interaction and communication among the professionals. The drafting of a national policy to promote care for terminally ill patients is necessary, as well as ongoing training of professionals and the creation of care protocols for promoting the comfort of the patients and their families during the end of life phase.
Mun, Eluned; Ceria-Ulep, Clementina; Umbarger, Lillian; Nakatsuka, Craig
Is a decrease in length of stay (LOS) in the intensive care unit (ICU) and hospital possible with the implementation of a structured, palliative care, quality-improvement program in the ICU? Incorporate palliative care into the routine ICU workflow to increase the numbers of palliative care consultations, improve end-of-life care in the ICU, and demonstrate an impact on ICU and/or hospital LOS. A program was developed that followed recommendations from the Center to Advance Palliative Care's Improving Palliative Care in the ICU project. This program included selecting trigger criteria and a care model, forming guidelines, and developing evaluation criteria. The early identification of multiple measures led to proactive meetings with ICU patients' families and/or palliative care consultations. Early identification of advance directives, code status, goals of care, and ICU LOS and hospital LOS. A comparison between pre- and postintervention data showed positive trends in measured outcomes, including increased early identification of advance directives, code status, and goals of care along with a decrease in ICU LOS and hospital LOS. In addition, the number of ICU family meetings and palliative care consultations increased. It was concluded that providing palliative care in the ICU is feasible and may decrease both ICU LOS and overall hospital LOS.
Fernández-Sánchez, José Carlos; Pérez-Mármol, José Manuel; Blásquez, Antonia; Santos-Ruiz, Ana María; Peralta-Ramírez, María Isabel
A high incidence of burnout has been reported in health professionals working in palliative care units. Our present study aims to determine whether there are differences in the secretion of salivary cortisol between palliative care unit health professionals with and without burnout, and to elucidate whether there is a relationship between burnout syndrome and perceived stress and psychopathological status in this population. A total of 69 health professionals who met the inclusion criteria participated in our study, including physicians, nurses, and nursing assistants. Some 58 were women (M = 29.65 years, SD = 8.64) and 11 men (M = 35.67 years, SD = 11.90). The level of daily cortisol was registered in six measurements taken over the course of a workday. Burnout syndrome was evaluated with the Maslach Burnout Inventory-Human Services Survey (MBI-HSS), the level of perceived stress was measured using the Perceived Stress Scale, and psychopathological status was gauged using the SCL-90-R Symptoms Inventory. There were statistically significant differences in secretion of cortisol in professionals with high scores on a single subscale of the MBI-HSS [F(3.5) = 2.48, p < 0.03]. This effect was observed 15-30 minutes after waking up (p < 0.01) and at bedtime (p < 0.06). Moreover, the professionals with burnout showed higher scores on the psychopathology and stress subscales than professionals without it. A higher score in any dimension of the burnout syndrome in palliative care unit health professionals seems to be related to several physiological and psychological parameters. These findings may be relevant for further development of our understanding of the relationship between levels of burnout and cortisol secretion in the health workers in these units.
Şenel, Gülcin; Uysal, Neşe; Oguz, Gonca; Kaya, Mensure; Kadioullari, Nihal; Koçak, Nesteren; Karaca, Serife
Introductıon: Delirium is a complex but common disorder in palliative care with a prevalence between 13% and 88% but a particular frequency at the end of life yet often remains insufficiently diagnosed and managed. The aim of our study is to determine the frequency of delirium and identify factors associated with delirium at palliative care unit. Two hundred thirteen consecutive inpatients from October 1, 2012, to March 31, 2013, were studied prospectively. Age, gender, Palliative Performance Scale (PPS), Palliative Prognostic Index (PPI), length of stay in hospital, and delirium etiology and subtype were recorded. Delirium was diagnosed with using Delirium Rating Scale (DRS) and Diagnostic and Statistical Manual of Mental Disorders, 4th Edition Text Revision ( DSM-IV TR) criteria. The incidence of delirium among the patients with cancer was 49.8%. Mean age was 60.3 ± 14.8 (female 41%, male 59%, PPS 39.8%, PPI 5.9 ± 3.0, length of stay in hospital 8.6 ± 6.9 days). Univariate logistic regression analysis indicated that use of opioids, anticonvulsants, benzodiazepines, steroids, polypharmacy, infection, malnutrition, immobilization, sleep disturbance, constipation, hyperbilirubinemia, liver/renal failure, pulmonary failure/hypoxia, electrolyte imbalance, brain cancer/metastases, decreased PPS, and increased PPI were risk factors. Subtypes of delirium included hypoactive 49%, mixed 41%, and hyperactive 10%. The communicative impediments associated with delirium generate distress for the patient, their family, and health care practitioners who might have to contend with agitation and difficulty in assessing pain and other symptoms. To manage delirium in patients with cancer, clinicians must be able to diagnose it accurately and undertake appropriate assessment of underlying causes.
Knies, Andrea K; Hwang, David Y
Many neurocritically ill patients and their families have high amounts of palliative care needs. Multiple professional societies relevant to neurocritical care have released consensus statements on meeting palliative care needs in neuroscience intensive care units. In this review, the authors discuss the ongoing debate regarding what model of palliative care delivery is optimal, focus on the process of shared decision making during goals-of-care discussions, and briefly comment on transitions from intensive care to comfort care. Regardless of an institution's model of palliative care practice, every neurocritical care clinician should possess core competencies necessary to provide basic, integrative palliative care for neurocritically ill patients. Given the high proportion of neurocritically ill patients who lack decision-making capacity, communication skills that enable clinicians to facilitate shared decision making with patients' surrogates are of particular relevance, especially when the limitation of life support is in the discussion. High-quality decision aids to assist neurocritical care teams and surrogate decision makers during common goals-of-care discussions may have the potential for further promotion of best palliative care practices. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.
Mun, Eluned; Ceria-Ulep, Clementina; Umbarger, Lillian; Nakatsuka, Craig
Context Is a decrease in length of stay (LOS) in the intensive care unit (ICU) and hospital possible with the implementation of a structured, palliative care, quality-improvement program in the ICU? Objective Incorporate palliative care into the routine ICU workflow to increase the numbers of palliative care consultations, improve end-of-life care in the ICU, and demonstrate an impact on ICU and/or hospital LOS. Design A program was developed that followed recommendations from the Center to Advance Palliative Care’s Improving Palliative Care in the ICU project. This program included selecting trigger criteria and a care model, forming guidelines, and developing evaluation criteria. The early identification of multiple measures led to proactive meetings with ICU patients’ families and/or palliative care consultations. Main Outcome Measures Early identification of advance directives, code status, goals of care, and ICU LOS and hospital LOS. Results A comparison between pre- and postintervention data showed positive trends in measured outcomes, including increased early identification of advance directives, code status, and goals of care along with a decrease in ICU LOS and hospital LOS. In addition, the number of ICU family meetings and palliative care consultations increased. Conclusion It was concluded that providing palliative care in the ICU is feasible and may decrease both ICU LOS and overall hospital LOS. PMID:27644048
Perrin, Kathleen Ouimet; Kazanowski, Mary
Palliative care consultations for patients with life-threatening illnesses provide benefits for the patients and their families as well as for the health care team. Patients have better quality of life and live longer but cost the health care system less. Still, many patients are not offered the opportunity to receive a palliative care consultation. Barriers to palliative care consultation for patients in critical care units include misunderstandings about palliative care and not having agreed upon criteria for referral. Critical care nurses can assist in overcoming these barriers.
Lin, Ming-Hwai; Moh, Shwu-Lan; Kuo, Yu-Cheng; Wu, Pin-Yuan; Lin, Chiung-Ling; Tsai, Mei-Hui; Chen, Tzeng-Ji; Hwang, Shinn-Jang
Even though terminal cancer patients receive help from a hospice palliative care team, they have to suffer the pressure of death with deteriorating conditions. This study aims to evaluate the effect of art therapy for these terminal cancer patients. The patients involved were terminal cancer patients who were under the care of team members, which included physicians, nurses, social workers, clergy, art therapists, and volunteers in a hospice palliative care unit in Taiwan. The art therapy in our study took the form of visual fine art appreciation and hands-on painting. The effects of the art therapy were evaluated according to patients' feelings, cognitions, and behaviors. There were 177 patients (105 males and 72 females; mean age: 65.4 ±15.8 years) in the study. Each patient received a mean of 2.9 ± 2.0 sessions of the art therapy and produced a mean of 1.8 ± 2.6 pieces of art. During the therapy, most patients described their feelings well, and created art works attentively. Patients expressed these feelings through image appreciation and hands-on painting, among which the landscape was the most common scene in their art. After the therapy, the mean score of patients' artistic expressions (one point to each category: perception of beauty, art appreciation, creativity, hands-on artwork, and the engagement of creating artwork regularly) was 4.0 ± 0.7, significantly higher than the score before therapy (2.2 ± 1.4, p < 0.05). During the therapy, 70% of patients felt much or very much relaxed in their emotional state and 53.1% of patients felt much or very much better physically. Terminal cancer patients in a hospice palliative care unit in Taiwan may benefit from art therapy through visual art appreciation and hands-on creative artwork.
This paper shows how palliative care developed as a reaction to the compartimentalized technical approach of modern medicine. But what does it mean if we say palliative care wants to treat patients as whole persons? A few pitfalls need to avoided. All disciplines involved in palliative care should act within the limits of their own specific professional role. Physicians and nurses should certainly not force patients into spiritual or religious discussions or practices. They should understand that religion and spirituality also influence the ethical (and thus medical) choices people make, respect their own conscience and worldview too and cultivate conscious compassion. PMID:21811369
Porteous, Anna; Dewhurst, Felicity; Gray, William Keith; Coulter, Paul; Karandikar, Ulka; Kiltie, Rachel; Lowery, Lucy; MacCormick, Fiona; Paxton, Ann; Pickard, Jonathan; Rowley, Grace; Vidrine, Jennifer; Walmsley, Rowan; Waterfield, Kerry; Weiand, Donna; Grogan, Eleanor
The UK National Institute for Health and Care Excellence (NICE) indicate that palliative care patients are at high risk of delirium and should be screened for it using the short confusion assessment method (short CAM). This study aimed to assess the perceptions of the short CAM for delirium screening amongst health-care workers in specialist palliative care inpatient units (SPCUs) and to investigate its use as a screening instrument. Patients in 5 SPCUs in the North East of England were screened for delirium using the short CAM and a staff survey assessed the acceptability of the short-CAM in this setting. Of the 63 staff surveyed, 79.4% felt screening for delirium was important and 59.3% found the short CAM 'not at all' burdensome to complete. However, only 40.7% felt that the short-CAM often accurately reflected patients' conditions and none felt it always accurately reflected patients' condition. Of 298 patients screened, 20% screened positive on the short CAM. Malignant and intra-cerebral diseases were significant independent predictors of a positive screen. Hospice length of stay and in-hospice mortality were higher in those with a positive result (66.7%) than in those without (38.2%). Health professionals deem delirium screening to be important in SPCUs, but may not support routine use of the short CAM. This could reflect a limited perceived impact on care and lack of confidence in this tool to reflect a complex patient group.
Ross, Catriona; Cornbleet, Mike
Many randomized trials in specialist palliative care (SPC) have failed to recruit sufficient numbers of patients. A questionnaire was designed to assess the attitudes of inpatients of a SPC unit to taking part in research. Only 50% of patients were considered physically and mentally fit for interview. Forty patients and 13 nurses were asked to indicate their willingness to take part, or for their patients to take part, in research in general and then in three hypothetical trials. Reasons for their responses were analysed. The patients were generally agreeable to trial participation (66% 'quite happy' or 'very happy'). The nurses were strongly in favour of research participation for the same group of patients (92% 'quite happy' or 'very happy'). The most invasive study involving venepuncture and random drug allocation had the least favourable response (46% of patients and 54% of nurses 'quite happy' or 'very happy'). A trial of reflexology attracted 77% of patients, while 62% were happy to take part in a study involving mood assessment and interview. Factors deterring willingness to participate included the need for record keeping by the patient and concern about potential emotional strain. The nurses correctly identified some of the factors deterring patients, but often their willingness for trial participation did not match that of the patient. Although there is support for research among the small number of potential trial entrants in specialist palliative care units, their limited physical and emotional reserves make careful attention to appropriate trial design essential to the success of future studies.
Provinciali, Leandro; Tarquini, Daniela; De Falco, Fabrizio A; Carlini, Giulia; Zappia, Mario; Toni, Danilo
Palliative care in neurology is characterized by the need of taking into account some distinguishing features which supplement and often differ from the general palliative approach to cancer or to severe organ failures. Such position is emphasized by a new concept of palliative assistance which is not limited to the "end of life" stage, as it was the traditional one, but is applied along the entire course of progressive, life-limiting, and disabling conditions. There are various reasons accounting for a differentiation of palliative care in neurology and for the development of specific expertise; the long duration of the advanced stages of many neurological diseases and the distinguishing features of some clinical problems (cognitive disorders, psychic disorders, etc.), in addition to the deterioration of some general aspects (nutrition, etc.), make the general criteria adopted for cancer, severe respiratory, hepatic or renal failures and heart failure inadequate. The neurological diseases which could benefit from the development of a specific palliative approach are dementia, cerebrovascular diseases, movement disorders, neuromuscular diseases, severe traumatic brain injury, brain cancers and multiple sclerosis, as well as less frequent conditions. The growing literature on palliative care in neurology provides evidence of the neurological community's increasing interest in taking care of the advanced and terminal stages of nervous system diseases, thus encouraging research, training and updating in such direction. This document aims to underline the specific neurological requirements concerning the palliative assistance.
Boss, Renee; Nelson, Judith; Weissman, David; Campbell, Margaret; Curtis, Randall; Frontera, Jennifer; Gabriel, Michelle; Lustbader, Dana; Mosenthal, Anne; Mulkerin, Colleen; Puntillo, Kathleen; Ray, Daniel; Bassett, Rick; Brasel, Karen; Hays, Ross
Objective This review highlights the benefits that patients, families and clinicians can expect to realize when palliative care service is intentionally incorporated into the PICU, focusing on pain and symptom management, enhancing quality of life, communication and decision-making, length of stay and sites of care, and grief and bereavement. Data Sources MEDLINE Data Synthesis and Conclusions The American Academy of Pediatrics suggests that palliative care should begin at the time of a potentially life-limiting diagnosis and continue throughout the disease trajectory, regardless of the expected outcome. Although the PICU is often used for short term postoperative stabilization, PICU clinicians also care for many chronically ill children with complex underlying conditions and others receiving intensive care for prolonged periods. Integrating palliative care delivery into the PICU is rapidly becoming the standard for high quality care of critically ill children. Interdisciplinary ICU staff can take advantage of the growing resources for continuing education in pediatric palliative care principles and interventions. PMID:25080152
e-Health has the potential to improve pediatric palliative care. e-Health initiatives use the Internet or health information technology to improve quality of care and have the potential to decrease costs by reducing medical errors, reducing duplication of services, improving access to diagnostic and laboratory results, and improving communication between providers and patients, and so on. The majority of e-health initiatives are for adults and only a limited amount of evidence exists in the literature on e-health interventions in palliative care that are focused on pediatrics. To explore what role e-health could play in pediatric palliative care programs, this article aims to describe the Internet use in general in the United States and in palliative care, describe the use of health information technology in general in the United States and in palliative care, and suggest areas in pediatric palliative care that might benefit from e-health interventions.
Gonçalves, Ferraz; Mozes, Mónica; Saraiva, Isabel; Ramos, Cristina
In palliative care, gastrostomies are used to provide nutritional support or to decompress the bowel. To evaluate what happened to the patients monitored at our palliative care unit (PCU) who underwent gastrostomy between October 1994 and January 2005, a retrospective audit was made. The charts of 154 patients were reviewed. The most frequent reason why a patient underwent a gastrostomy was dysphagia due to head and neck and/or esophageal cancer. Only one patient underwent a drainage gastrostomy because of intestinal obstruction. Interventional radiology performed 96% of the gastrostomies. Early complications occurred in 53 patients (34%) who underwent the gastrostomy for feeding and the most common was local pain, usually mild. However, there was one death due to peritonitis, probably related with the procedure. Late complications also occurred in 53 patients and major complications occurred in 22 patients, the most common was extrusion. The median survival after the performance of the gastrostomy was 61 days (range 1 to 551 days). Nineteen patients (12%) survived 1 week or less, 28 (18%) between 8 and 30 days, 51 (33%) from 31 to 90 days, 53 (35%) 91 days or more, and one unknown. The patient who underwent a gastrostomy for bowel obstruction survived for only 7 days. One hundred and twenty-five patients (81%) died at the PCU, 26 (17%) at home, and four (3%) at other places.
Kwon, Jung Hye; Kim, Min Ji; Bruera, Sebastian; Park, Minjeong; Bruera, Eduardo; Hui, David
Although off-label medications are frequently prescribed in palliative care, there are no published studies examining their use in the U.S. We examined the frequency of off-label medication use in cancer patients admitted to an acute palliative care unit (APCU). This prospective observational study enrolled consecutive patients with advanced cancer admitted to the APCU of a tertiary care cancer center. We collected data on all prescription events, including indications for use, from admission to discharge. Off-label use was checked against the U.S. Food and Drug Administration-approved indications. Among the 201 patients, median survival was 10 days (95% CI 7-13), and 85 (42%) patients died in the APCU. We documented 6276 prescription events, and 2199 (35%) were off-label. Among off-label prescriptions, central nervous system agents (n = 1606, 73%), hormones and synthetic substitutes (n = 302, 14%), and autonomic drugs (n = 183, 8%) were most commonly prescribed. Haloperidol (n = 720, 33%), chlorpromazine (n = 292, 13%), dexamethasone (n = 280, 13%), glycopyrrolate (n = 175, 8%), hydromorphone (n = 161, 7%), and morphine (n = 156, 7%) were most frequently prescribed off-label. The most common indications for off-label prescribing were delirium (n = 783, 36%) and dyspnea (n = 449, 20%). Seventy percent of all off-label prescription events had strong evidence supporting use, and 19% of prescription events had moderate or weak evidence for use. One-third of prescription events in the APCU were off-label, with majority of off-label use having a strong level of supporting evidence. Our findings highlight the need for more research in key areas such as delirium and dyspnea management. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Wysham, Nicholas G.; Hua, May; Hough, Catherine L.; Gundel, Stephanie; Docherty, Sharron L.; Jones, Derek M.; Reagan, Owen; Goucher, Haley; Mcfarlin, Jessica; Galanos, Anthony; Knudsen, Nancy; Cox, Christopher E.
Objective Addressing the quality gap in intensive care unit (ICU)-based palliative care is limited by uncertainty about acceptable models of collaborative specialist and generalist care. Therefore, we characterized the attitudes of physicians and nurses about palliative care delivery in an ICU environment. Design Mixed-methods study. Setting Medical and surgical ICUs at three large academic hospitals. Participants 303 nurses, intensivists, and advanced practice providers. Measurements and main results Clinicians completed written surveys that assessed attitudes about specialist palliative care presence and integration into the ICU setting, as well as acceptability of 23 published palliative care prompts (‘triggers’) for specialist consultation. Most (n=225, 75%) reported that palliative care consultation was underutilized. Prompting consideration of eligibility for specialist consultation by electronic health record searches for triggers was most preferred (n=123, 41%); only 17 (6%) felt current processes were adequate. The most acceptable specialist triggers were metastatic malignancy, unrealistic goals of care, end of life decision making, and persistent organ failure. Advanced age, length of stay, and duration of life support were the least acceptable. Screening led by either specialists or ICU teams was equally preferred. Central themes derived from qualitative analysis of 65 written responses to open-ended items included concerns about the roles of physicians and nurses, implementation, and impact on ICU team-family relationships. Conclusions Integration of palliative care specialists in the ICU is broadly acceptable and desired. However, the most commonly used current triggers for prompting specialist consultation were among the least well accepted, while more favorable triggers are difficult to abstract from electronic health record systems. There is also disagreement about the role of ICU nurses in palliative care delivery. These findings provide
Dudley, Nancy; Ritchie, Christine S; Wallhagen, Margaret I; Covinsky, Kenneth E; Cooper, Bruce A; Patel, Kanan; Stijacic-Cenzer, Irena; Chapman, Susan A
Older adults with advanced illness and associated symptoms may benefit from primary palliative care, but limited data exist to identify older adults in U.S. primary care to benefit from this care. To describe U.S. primary care visits among adults 65 years and older with advanced illness. Cross-sectional analysis of the National Ambulatory and Hospital Ambulatory Medical Care Surveys (2009-2011) was conducted using chi-square tests to compare visits without and with advanced illness to U.S. primary care defined by NCQA Palliative and End-of-Life Care Physician Performance Measurement Set ICD-9 codes for end-stage illness. Among visits by older adults to primary care, 7.9% of visits were related to advanced illness. A higher proportion of advanced illness visits was among males vs. females (8.9% vs. 7.2%; P=0.03) and adults aged 75 and older, non-Hispanic Whites (8.3%) and Blacks (8.2%) vs. Hispanic (6.7%) and non-Hispanic other (2.5%) (P=0.02), dually eligible for Medicare and Medicaid, and from patient Zip Codes with lower median household incomes (below $32,793). A higher percentage of visits with advanced illness conditions to primary care was COPD, CHF, dementia, and cancer, and symptoms reported with these visits were mostly pain, depression, anxiety, fatigue, and insomnia. In the United States, approximately 8% of primary care visits among older adults was related to advanced illness conditions. Advanced illness visits were most common among those most likely to be socio-economically vulnerable and highlight the need to focus efforts for high quality palliative care for these populations. Copyright © 2017. Published by Elsevier Inc.
Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L.; Bravery, Ruth; Hill, Matthew; Morris, Sara; Ockenden, Nick; Payne, Sheila
Abstract Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care. PMID:24475743
Böddeker, Andrea; Smeding, Ruthmarijke; Voltz, Raymond
To relate personal experience and reflections on the tasks and role of a volunteer in an academic palliative care unit into the context of the English publications of 2009. We took a snapshot of the most recent publications as a way of placing the rather unique experiences of this German volunteer in an international context. Five recent studies were found discussing the importance of volunteers in an interdisciplinary context, but mainly focusing on the volunteer's role in the community, interacting with terminally ill patients and their caregivers. Furthermore, aspects of ethical issues, reasons for starting and continuing to volunteer for hospice and the role of male volunteers were evaluated in these studies. The studies feature on the one hand the positive recognition of volunteers, for example, two studies revealed a significant interest by the respondents of having volunteers if they were dying. Also, these articles focused on family carers, who voted for the service of hospice/palliative care volunteers; on the other hand, efforts have to be made to improve the recruitment of volunteers especially if it comes to male support. A further study, reporting on ethical issues, indicates that little is known about these issues when it comes to a volunteer's interaction with a patient in difficult situations, how these are to be managed. These studies give us valuable clues on how and where to make continuous improvements.
Klick, Jeffrey C; Hauer, Julie
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI).
Baba, Mika; Maeda, Isseki; Morita, Tatsuya; Hisanaga, Takayuki; Ishihara, Tatsuhiko; Iwashita, Tomoyuki; Kaneishi, Keisuke; Kawagoe, Shohei; Kuriyama, Toshiyuki; Maeda, Takashi; Mori, Ichiro; Nakajima, Nobuhisa; Nishi, Tomohiro; Sakurai, Hiroki; Shimoyama, Satofumi; Shinjo, Takuya; Shirayama, Hiroto; Yamada, Takeshi; Ono, Shigeki; Ozawa, Taketoshi; Yamamoto, Ryo; Tsuneto, Satoru
Accurate prognostic information in palliative care settings is needed for patients to make decisions and set goals and priorities. The Prognosis Palliative Care Study (PiPS) predictor models were presented in 2011, but have not yet been fully validated by other research teams. The primary aim of this study is to examine the accuracy and to validate the modified PiPS (using physician-proxy ratings of mental status instead of patient interviews) in three palliative care settings, namely palliative care units, hospital-based palliative care teams, and home-based palliative care services. This multicenter prospective cohort study was conducted in 58 palliative care services including 16 palliative care units, 19 hospital-based palliative care teams, and 23 home-based palliative care services in Japan from September 2012 through April 2014. A total of 2426 subjects were recruited. For reasons including lack of followup and missing variables (primarily blood examination data), we obtained analyzable data from 2212 and 1257 patients for the modified PiPS-A and PiPS-B, respectively. In all palliative care settings, both the modified PiPS-A and PiPS-B identified three risk groups with different survival rates (P<0.001). The absolute agreement ranged from 56% to 60% in the PiPS-A model and 60% to 62% in the PiPS-B model. The modified PiPS was successfully validated and can be useful in palliative care units, hospital-based palliative care teams, and home-based palliative care services. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
... Questions Frequently Asked Questions: What is pediatric palliative care? Pediatric palliative (pal-lee-uh-tiv) care is ... for patients and families. Who provides pediatric palliative care? Every palliative care team is different. The team ...
Hosie, Annmarie; Lobb, Elizabeth; Agar, Meera; Davidson, Patricia M; Chye, Richard; Phillips, Jane
To explore nurse perceptions of the feasibility of integrating the Nursing Delirium Screening Scale into practice within the inpatient palliative care setting. Delirium occurs frequently in palliative care inpatient populations, yet is under-recognised. Exploring feasibility of delirium screening tools in this setting can provide insights into how recognition can be improved. This was a qualitative study using a focus group methodology. Four semi-structured focus groups were conducted with 21 nurses working in two Australian palliative care units. Focus groups were digitally recorded and transcribed verbatim. Thematic content analysis was used to analyse the data. Three major themes were identified: (1) Delirium screening using the Nursing Delirium Screening Scale is feasible, but then what? (2) Nuances, ambiguity and clinical complexity; and (3) Implementing structured processes requires firmer foundations. Themes describe how nurses perceived the Nursing Delirium Screening Scale to be an easy and brief screening tool which raised their awareness of delirium. They were largely willing to adopt it into practice, yet had uncertainty and misunderstandings of the tool specifically and delirium screening generally, application in a palliative care context, interventions for delirium and impact of screening on medical practice. The Nursing Delirium Screening Scale is feasible for use in a palliative care inpatient setting, but requires investigation of its psychometric properties before routine use in this patient population. Nurses require understanding of delirium, tailored guidance and a united approach with doctors to support their effective use of a delirium screening tool in the palliative care unit. Delirium practice change in this setting will also require nurses to become more active leaders and collaborators within their interdisciplinary teams. © 2015 John Wiley & Sons Ltd.
Gatrad, Rashid; Panesar, Sukhmeet Singh; Brown, Erica; Notta, Hardev; Sheikh, Aziz
This article provides an overview of the palliative care needs of Sikh patients. It describes the basis of Sikh beliefs and practices and discusses practical aspects of caring for terminally ill Sikh patients and their families. Issues before and after death are considered and the importance of an individual approach is highlighted.
Rouhollahi, Mohammad Reza; Saghafinia, Masoud; Zandehdel, Kazem; Motlagh, Ali Ghanbari; Kazemian, Ali; Mohagheghi, Mohammad Ali; Tahmasebi, Mamak
Introduction: The first hospital palliative care unit (HPCU) in Iran (FARS-HPCU) has been established in 2008 in the Cancer Institute, which is the largest referral cancer center in the country. We attempted to assess the performance of the HPCU based on a comprehensive conceptual framework. The main aim of this study was to develop a conceptual framework for assessment of the HPCU performances through designing a value chain in line with the goals and the main processes (core and support). Materials and Methods: We collected data from a variety of sources, including international guidelines, international best practices, and expert opinions in the country and compared them with national policies and priorities. We also took into consideration the trend of the HPCU development in the Cancer Institute of Iran. Through benchmarking the gap area with the performance standards, some recommendations for better outcome are proposed. Results: The framework for performance assessment consisted of 154 process indicators (PIs), based on which the main stakeholders of the HPCU (including staff, patients, and families) offered their scoring. The outcome revealed the state of the processes as well as the gaps Conclusion: Despite a significant improvement in many processes and indicators, more development in the comprehensive and integrative aspects of FARS-HPCU performance is required. Consideration of all supportive and palliative requirements of the patients through interdisciplinary and collaborative approaches is recommended. PMID:26600701
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Owens, Darrell; Flom, Jan
The goal of palliative care is to provide the alleviation or reduction of suffering and the support for the best possible quality of life for patients regardless of the stage of the disease. Palliative care can be provided in any patient care setting, including intensive care units. Death in intensive care units is a common occurrence, with literature suggesting that approximately 20% of deaths in the United States occur after a stay in the intensive care unit. Other studies suggest that approximately half of all chronically ill patients who die in a hospital receive care in the intensive care unit within 3 days of their deaths. Critical care nurses who work in neurological intensive care units are at the forefront of integrating palliative and critical care.
Wilson, Christopher M; Stiller, Christine H; Doherty, Deborah J; Thompson, Kristine A
Little is known regarding the extent to which physical therapy is integrated into Hospice and Palliative Care (HPC). The purpose of this study was to describe perceptions of physical therapists (PTs) regarding their role within HPC or working with patients having life-threatening illnesses and to develop a conceptual framework depicting a PTs role within HPC and factors affecting it. Ten PTs, 5 from the United States and 5 from Canada, with at least 5 years of physical therapy experience and 5 years working experience with patients having life-threatening illnesses or in HPC. Demographic data were collected by electronic questionnaire. A semistructured interview was conducted with each participant to investigate their perceptions about the role of PTs in HPC. Interview results were analyzed for trends between participants, practice settings, regions, and other sociocultural aspects. The constant comparative method of qualitative data analysis was used to identify similarities and differences and to develop themes and concepts relative to the role of PT in HPC. Participants identified their 3 primary roles in HPC: providing patient/family care, serving as an interdisciplinary team member, and fulfilling professional responsibilities outside of direct patient care. They described factors within and outside direct patient care which influenced their roles. Concepts included shifting priorities, care across the continuum, and changing perceptions of PTs within HPC. This study described perceptions of the role of PTs within HPC that may be utilized when coordinating future strategies to appropriately promote and expand the role.
Khan, Robyna Irshad
Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.
Schuster, M; Ferner, M; Bodenstein, M; Laufenberg-Feldmann, R
Involvement of palliative care is so far not common practice for critically ill patients on surgical intensive care units (ICUs) in Germany. The objectives of palliative care concepts are improvement of patient quality of life by relief of disease-related symptoms using an interdisciplinary approach and support of patients and their relatives considering their current physical, psychological, social and spiritual needs. The need for palliative care can be identified via defined screening criteria. Integration of palliative care can either be realized using a consultative model which focusses on involvement of palliative care consultants or an integrative model which embeds palliative care principles into the routine daily practice by the ICU team. Early integration of palliative care in terms of advance care planning (ACP) can lead to an increase in goals of care discussions and quality of life as well as a decrease of mortality and length of stay on the ICU. Moreover, stress reactions of relatives and ICU staff can be reduced and higher satisfaction with therapy can be achieved. The core of goal of care discussions is professional and well-structured communication between patients, relatives and staff. Consideration of palliative care principles by model-based integration into ICU practice can improve complex intensive care courses of disease in a productive but dignified way without neglecting curative attempts.
Wiebe, Lauren A; Von Roenn, Jamie H
The interdisciplinary team is fundamental to the successful delivery of quality palliative care. Ideally, the oncologist is an integral part of either the palliative care or hospice team and serves to maintain continuity of care through the end of life. In the United States, barriers can complicate the oncologist's easy integration into the hospice team as patients often remain at home. Also, there may be philosophical or clinical practice differences between oncology and palliative care at first glance. This article focuses on ways to overcome these potential obstacles and use differences in training to strengthen the team's impact. A significant part of oncology practice includes managing difficult symptoms, mitigating suffering, and discussing priorities of care--all elements of palliative medicine that oncologists perform daily. Participating on a palliative care team may be natural for oncologists, and some might elect to provide integrated palliative cancer care for patients throughout the course of their disease and at the end of life. Thus, there is a need to enrich the general oncologist's knowledge of specialized palliative medicine, as recommended by the major cancer organizations, including the American Society of Clinical Oncology and the European Society of Medical Oncology.It is important to know when to incorporate a palliative or hospice care team into the routine management of a cancer patient and what benefits these referrals can provide. Oncologists have an obligation to provide high-quality palliative care to all patients in an integrated fashion, including patients with advanced cancer enrolled in clinical trials for early therapeutics.
Rizo-Baeza, Mercedes; Mendiola-Infante, Susana Virginia; Sepehri, Armina; Palazón-Bru, Antonio; Gil-Guillén, Vicente Francisco; Cortés-Castell, Ernesto
To analyse the association between psychological, labour and demographic factors and burnout in palliative care nursing. There is a lack of published research evaluating burnout in palliative care nursing. This observational cross-sectional study involved 185 palliative care nurses in Mexico. The primary variables were burnout defined by its three dimensions (emotional exhaustion, depersonalization and personal accomplishment). As secondary variables, psychological, labour and demographic factors were considered. A binary logistic regression model was constructed to determine factors associated with burnout. A total of 69 nurses experienced high emotional exhaustion (37.3%), 65 had high depersonalization (35.1%) and 70 had low personal performance (37.8%). A higher proportion of burnout was found in the participants who were single parents, working >8 hr per day, with a medium/high workload, a lack of a high professional quality of life and a self-care deficit. Our multivariate models were very accurate in explaining burnout in palliative care nurses. These models must be externally validated to predict burnout and prevent future complications of the syndrome accurately. Nurses who present the factors found should be the focus of interventions to reduce work stress. © 2017 John Wiley & Sons Ltd.
Woo, Kevin Y; Krasner, Diane L; Kennedy, Bruce; Wardle, David; Moir, Olivia
To provide information about palliative wound care management strategies for palliative patients and their circles of care. This continuing education activity is intended for physicians and nurses with an interest in skin and wound care. After participating in this educational activity, the participant should be better able to: 1. Recognize study findings, assessment tools, and non-pharmacologic strategies used for patients with palliative wounds. 2. Summarize pharmacologic and dressing treatment strategies used for wound care management of palliative patients. The principles of palliative wound care should be integrated along the continuum of wound care to address the whole person care needs of palliative patients and their circles of care, which includes members of the patient unit including family, significant others, caregivers, and other healthcare professionals that may be external to the current interprofessional team. Palliative patients often present with chronic debilitating diseases, advanced diseases associated with major organ failure (renal, hepatic, pulmonary, or cardiac), profound dementia, complex psychosocial issues, diminished self-care abilities, and challenging wound-related symptoms. This article introduces key concepts and strategies for palliative wound care that are essential for interprofessional team members to incorporate in clinical practice when caring for palliative patients with wounds and their circles of care.
Soden, Katie; Ali, Simone; Alloway, Lara; Barclay, David; Perkins, Paul; Barker, Stephanie
The aim of this qualitative study was to gain a better understanding of how nurses working on inpatient specialist palliative care units assess and manage breakthrough pain. Thematic analysis of semi-structured interviews with fifteen nurses from five different specialist palliative care units in the UK was undertaken. Themes identified have been broadly categorized into four main areas: defining breakthrough pain, assessing breakthrough pain, managing breakthrough pain, and attitudes/teamwork. Nurses had difficulty defining breakthrough pain as a distinct pain subtype and were often unable to differentiate it from poorly controlled background pain. This study highlights significant training needs and suggests that the theoretical work and recently published consensus recommendations around breakthrough pain now need to be translated into day-to-day clinical practice.
Bailey, Maria E; Graham, Margaret M
This paper describes the processes involved over one year in introducing, facilitating and evaluating a project of guided reflective practice for a group of eight palliative care nurses in Milford Care Centre, Republic of Ireland. While literature has tended to concentrate on critical discussion relating to reflection, less attention has been directed towards the organisation and facilitation of reflective processes in practice. In addressing this deficit, a detailed account of the collaborative processes and challenges involved in this project are presented. Group evaluation of the project is discussed under the following themes: understanding the process of reflective practice; the value of keeping a reflective diary; guided group reflection and moving forward. The introduction of guided reflection for palliative care nurses has afforded both the facilitators and the participants an opportunity to meet away from the clinical environment, and to work together, finding fresh insights to inform practice. The valuing and promotion of reflective processes by an organisation arguably provides a fundamental strategy to support nurses in a quality palliative care setting.
Schur, Sophie; Weixler, Dietmar; Gabl, Christoph; Kreye, Gudrun; Likar, Rudolf; Masel, Eva Katharina; Mayrhofer, Michael; Reiner, Franz; Schmidmayr, Barbara; Kirchheiner, Kathrin; Watzke, Herbert Hans
Sedation is used to an increasing extent in end-of-life care. Definitions and indications in this field are based on expert opinions and case series. Little is known about this practice at palliative care units in Austria. Patients who died in Austrian palliative care units between June 2012 and June 2013 were identified. A predefined set of baseline characteristics and information on sedation during the last two weeks before death were obtained by reviewing the patients' charts. The data of 2414 patients from 23 palliative care units were available for analysis. Five hundred two (21 %) patients received sedation in the last two weeks preceding their death, 356 (71 %) received continuous sedation until death, and 119 (24 %) received intermittent sedation. The median duration of sedation was 48 h (IQR 10-72 h); 168 patients (34 %) were sedated for less than 24 h. Indications for sedation were delirium (51 %), existential distress (32 %), dyspnea (30 %), and pain (20 %). Midazolam was the most frequently used drug (79 %), followed by lorazepam (13 %), and haloperidol (10 %). Sedated patients were significantly younger (median age 67 years vs. 74 years, p ≤ 0.001, r = 0.22), suffered more often from an oncological disease (92 % vs. 82 %, p ≤ 0.001, φ = 0.107), and were hospitalized more frequently (94 % vs. 76 %, p ≤ 0.001, φ = 0.175). The median number of days between admission to a palliative care ward/mobile palliative care team and death did not differ significantly in sedated versus non-sedated patients (10 vs. 9 days; p = 0.491). This study provides insights into the practice of end-of-life sedation in Austria. Critical appraisal of these data will serve as a starting point for the development of nation-wide guidelines for palliative sedation in Austria.
Cojean, N; Strub, C; Kuhn, P; Calvel, L
The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks.
Pressure sore prevention in palliative care is recognized as being an essential element of holistic care, with the primary goal of promoting quality of life for patient and family. Little is known about the incidence of pressure sore development and the use of pressure sore risk assessment tools in palliative care settings. The development of a risk assessment tool specifically for palliative care patients in a 41-bedded specialist palliative care unit is described. The risk assessment tool was developed as part of a tissue viability practice development initiative. The approach adopted in the validation of the Hunters Hill Marie Curie Centre pressure sore risk assessment tool was the comparative analysis of professional judgment of experienced palliative care nurses with the numerical scores achieved during the assessment of risk on 291 patients (529 risk assessment events). This comparative analysis identified the threshold for different degrees of risk for the patient group involved: low risk, medium risk, high risk and very high risk. Further work is being undertaken to evaluate the inter-rater reliability of the new tool. A number of issues are explored in this paper in relation to pressure sore prevention in palliative care: the role of risk assessment tools, the sometimes conflicting aims of trying to ensure comfort and prevent pressure sore damage, and the uncertainties faced by palliative care nurses when they are trying to maintain quality of life for the dying.
Massey, Kevin; Barnes, Marilyn J D; Villines, Dana; Goldstein, Julie D; Pierson, Anna Lee Hisey; Scherer, Cheryl; Vander Laan, Betty; Summerfelt, Wm Thomas
Chaplains are increasingly seen as key members of interdisciplinary palliative care teams, yet the specific interventions and hoped for outcomes of their work are poorly understood. This project served to develop a standard terminology inventory for the chaplaincy field, to be called the chaplaincy taxonomy. The research team used a mixed methods approach to generate, evaluate and validate items for the taxonomy. We conducted a literature review, retrospective chart review, focus groups, self-observation, experience sampling, concept mapping, and reliability testing. Chaplaincy activities focused primarily on palliative care in an intensive care unit setting in order to capture a broad cross section of chaplaincy activities. Literature and chart review resulted in 438 taxonomy items for testing. Chaplain focus groups generated an additional 100 items and removed 421 items as duplications. Self-Observation, Experience Sampling and Concept Mapping provided validity that the taxonomy items were actual activities that chaplains perform in their spiritual care. Inter-rater reliability for chaplains to identify taxonomy items from vignettes was 0.903. The 100 item chaplaincy taxonomy provides a strong foundation for a normative inventory of chaplaincy activities and outcomes. A deliberative process is proposed to further expand and refine the taxonomy to create a standard terminological inventory for the field of chaplaincy. A standard terminology could improve the ways inter-disciplinary palliative care teams communicate about chaplaincy activities and outcomes.
Gambles, M; Wilkinson, S M; Dissanayake, C
Occupational psychology has long been concerned with the proposed link between personality and occupational success or stress. The role of the cancer and palliative care nurse can be challenging and stressful, and the aim of the current study was to explore the existence of a personality profile for nurses working in this area. For this study, 178 nurses undertaking degree and diploma studies in cancer and palliative care at a specialist palliative care unit in northwest England completed the 16PF personality inventory and a demographic questionnaire. The mean age of these nurses was 38 years, and 95% were women. Approximately half (52%) were staff nurses, and the majority (77%) worked in hospital or community environments. The profile suggested that the nurses were extraverted, empathic, trusting, open, expressive, insightful, and group oriented. They were likely to be cautious when facing new ideas, potentially naïve in dealings with more astute others, and somewhat lacking in objectivity. Positive aspects of the profile suggested that they would thrive in a stressful occupation wherein caring for others and multidisciplinary team working are important. However, less positive elements may affect their ability to be influential members of the multidisciplinary team. The potential for using personality profiling for effective targeting of personnel, education, training, and improvement of self-awareness is explored.
Trauma remains a leading cause of morbidity and mortality in the United States. Despite the aggressive and heroic nature of trauma care, including trauma surgery, 10% to 20% of patients admitted to trauma intensive care units die. As the population continues to age, it is predicted that by 2050, approximately 40% of those experiencing traumatic injury will be older than 65 years. For multiple reasons, people in this age group who experience trauma are at greater risk for death. Palliative care is the specialty of health care that provides care for patients with serious, life-threatening, or life-limiting illness or injury, regardless of the stage of disease or treatment. The goal of palliative care is to reduce or alleviate suffering through expert pain and symptom management, as well as assistance with decision making. The integration of palliative and trauma care can assist and support patients and families through stressful, often life-changing times, regardless of the final outcome.
Leung, Kai-Kuen; Tsai, Jaw-Shiun; Cheng, Shao-Yi; Liu, Wen-Jing; Chiu, Tai-Yuan; Wu, Chih-Hsun; Chen, Ching-Yu
Lack of evidence supporting the claim that palliative care can improve quality of life and promote good death in patients with terminal cancer. This study was designed to evaluate the change of quality of life and quality of death over time and between patients of long and short survival in a palliative care unit. Patient demography, cancer sites, Eastern Cooperative Oncology Group (ECOG) status were collected at admission. Quality of life, including physical and psychological symptoms, social support, and spirituality was assessed daily after admission. Quality of death was assessed by a Good Death Scale (GDS) at admission and retrospectively for 2 days before death. A total of 281 patients (52% women) were admitted and died in the study period. One hundred forty-five patients (51.6%) died within 3 weeks. Although those with short survival (<3 weeks) had more physical symptoms during the first week, there was no difference in quality of life dimensions at admission, at 1 week, and at 2 days before death between survival groups. Physical conditions deteriorated with time but other dimensions continued to improve until death. GDS and subdimensions continued to improve until death. Although those with long survival (≥3 weeks) have better scores for awareness, acceptance, timeliness, comfort, and GDS at admission, there was no difference between the two groups at 2 days before death. Under comprehensive palliative care, patients with terminal cancer can have good quality of life and experience a good death even with short survival.
Khandelwal, Nita; Brumback, Lyndia C; Halpern, Scott D; Coe, Norma B; Brumback, Babette; Curtis, J Randall
Purpose of report: Understanding the impact of palliative care interventions on intensive care unit (ICU) costs and utilization is critical for demonstrating the value of palliative care. Performing these economic assessments, however, can be challenging. The purpose of this special report is to highlight and discuss important considerations when assessing ICU utilization and costs from the hospital perspective, with the goal of providing recommendations on methods to consider for future analyses. ICU length of stay (LOS) and associated costs of care are common and important outcome measures, but must be analyzed properly to yield valid conclusions. There is significant variation in costs by day of stay in the ICU with only modest differences between an ICU day at the end of a stay and the first day on the acute care floor; this variation must be appropriately accounted for analytically. Furthermore, reporting direct variable costs, in addition to total ICU costs, is needed to understand short-term and long-term impact of a reduction in LOS. Importantly, incentives for the hospital to realize savings vary depending on reimbursement policies. ICU utilization and costs are common outcomes in studies evaluating palliative care interventions. Accurate estimation and interpretation are key to understanding the economic implications of palliative care interventions.
Hui, David; Elsayem, Ahmed; Li, Zhijun; De La Cruz, Maxine; Palmer, J Lynn; Bruera, Eduardo
BACKGROUND Cancer patients admitted to a palliative care unit generally have a poor prognosis. The role of antineoplastic therapy (ANT) in these patients is controversial. We examined the frequency and predictors associated with ANT use in hospitalized patients who required an acute palliative care unit (APCU) stay. METHODS We included all 2604 patients admitted over a five-year period to a 12-bed APCU located within a National Cancer Institute comprehensive cancer center, where patients can access both palliative care and ANT. We retrospectively retrieved from institutional databases patient demographics, cancer diagnosis, ANT use, length of hospital stay, and survival from time of admission. RESULTS The median hospital stay was 11 days and the median survival was 22 days. During hospitalization, 435 patients (17%) received ANT, including chemotherapy (N=297, 11%), hormonal agents (N=54, 2%) and targeted therapy (N=155, 6%). No significant change in frequency of ANT use was detected over the 5 year period. Multivariate logistic regression analysis revealed that younger age, specific cancer diagnoses and longer admissions were independently associated with ANT use. CONCLUSION The use of ANT during hospitalization that included an APCU stay was limited to a small percentage of patients, and did not increase over time. ANT use was associated with younger age, specific cancer diagnoses and longer admissions. The APCU facilitates simultaneous care where patients access palliative care while on ANT. PMID:20162701
Brazil, Kevin; Galway, Karen; Carter, Gillian; van der Steen, Jenny T
The European Association for Palliative Care (EAPC) recently issued a framework that defines optimal palliative care in dementia. However, implementation of the guidelines may pose challenges for physicians working with dementia patients in practice. To measure and compare the perceptions of physicians in two European regions regarding the importance and challenges of implementing recommendations for optimal palliative care in dementia patients. Cross-sectional observational study. The Netherlands and the United Kingdom. Physicians (n = 317) providing palliative care to patients with dementia. Postal survey. Physicians in the Netherlands and Northern Ireland (NI), United Kingdom, prioritized the same domains of optimal palliative care for dementia and these match the priorities in the EAPC-endorsed guidelines. Respondents in both countries rated lack of education of professional teams and lack of awareness of the general public among the most important barriers to providing palliative care in dementia. NI respondents also identified access to specialist support as a barrier. The results indicate that there is a strong consensus among experts, elderly care physicians, and general practitioners across a variety of settings in Europe that person-centered care involving optimal communication and shared decision making is the top priority for delivering optimal palliative care in dementia. The current findings both support and enhance the new recommendations ratified by the EAPC. To take forward the implementation of EAPC guidelines for palliative care for dementia, it will be necessary to assess the challenges more thoroughly at a country-specific level and to design and test interventions that may include systemic changes to help physicians overcome such challenges.
“If you want to travel quickly, go alone. But if you want to travel far, you must go together”. African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361
Muta, Rieko; Sanjo, Makiko; Miyashita, Mitsunori; Wakabayashi, Rieko; Ando, Etsuko; Morita, Tatsuya; Tsuneto, Satoru; Shima, Yasuo
There is no standardized method by which bereavement care is offered by hospice/palliative care units (PCUs) in Japan. To evaluate bereavement services provided by hospice/PCUs and clarify demands for bereavement care. Qualitative design based on semistructured interviews and content analysis. Forty-four bereaved family members of patients with cancer who died in 9 PCUs in 4 regions. Memorial services were positively evaluated for the following variables: reunion and interaction with staff; the service's relaxed atmosphere; staff attentiveness; suitable location; suitable timing; program content; and interaction with other bereaved families. Memorial cards were positively evaluated regarding the level of concern shown by the staff and the personalized card. Respondents indicated their desire for a care system, a bereaved family care program, and information services. © The Author(s) 2013.
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)
Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R
Palliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. The purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. The project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. In this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. A standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Cheng, Shao-Yi; Dy, Sydney; Fang, Pai-Han; Chen, Ching-Yu; Chiu, Tai-Yuan
The effectiveness of inpatient palliative care units, a complex intervention, is challenging to evaluate due to methodological and practical difficulties. We conducted a study to evaluate providers' perceived effectiveness of one such unit. A non-concurrent, prospective, controlled study using the Audit Scale for good death services as an indicator of process of care and the Good Death Scale as the outcome of provider assessment of quality of dying was conducted. Eighty of 212 terminally ill cancer patients were matched from a tertiary medical center in Taiwan. Patients in the unit served as the intervention group and patients in the oncology ward served as controls. Multiple logistic regression was applied to estimate the propensity of choosing the unit for each patient, and linear regression analysis was conducted to identify predictive factors for mean change scores of the Good Death Scale. Male gender (P < 0.001, 95% confidence interval = 0.73-2.43) was associated with better quality of dying while having hepatocellular carcinoma (P < 0.004, 95% confidence interval = -2.22 to -0.44) was associated with worse quality. For those in the unit, higher total Audit Scale scores were positively related to the outcome of quality of dying. The unit (P < 0.001, 95% confidence interval = 8.67-12.97) and higher Good Death Scale at admission (P < 0.001, 95% confidence interval = 0.44-1.13) were predictors of Audit Scale scores. Admission to a palliative care unit was associated with higher provider assessments of quality of dying for terminally ill cancer patients. These units should be considered as options for hospitals looking for ways to improve the quality of dying for patients.
Mitchell, Sarah; Dale, Jeremy
The majority of children and young people who die in the United Kingdom have pre-existing life-limiting illness. Currently, most such deaths occur in hospital, most frequently within the intensive care environment. To explore the experiences of senior medical and nursing staff regarding the challenges associated with Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit environment and opportunities for improvement. Qualitative one-to-one, semi-structured interviews were conducted with Paediatric Intensive Care Unit consultants and senior nurses, to gain rich, contextual data. Thematic content analysis was carried out. UK tertiary referral centre Paediatric Intensive Care Unit. Eight Paediatric Intensive Care Unit consultants and six senior nurses participated. Four main themes emerged: recognition of an illness as 'life-limiting'; Advance Care Planning as a multi-disciplinary, structured process; the value of Advance Care Planning and adverse consequences of inadequate Advance Care Planning. Potential benefits of Advance Care Planning include providing the opportunity to make decisions regarding end-of-life care in a timely fashion and in partnership with patients, where possible, and their families. Barriers to the process include the recognition of the life-limiting nature of an illness and gaining consensus of medical opinion. Organisational improvements towards earlier recognition of life-limiting illness and subsequent Advance Care Planning were recommended, including education and training, as well as the need for wider societal debate. Advance Care Planning for children and young people with life-limiting conditions has the potential to improve care for patients and their families, providing the opportunity to make decisions based on clear information at an appropriate time, and avoid potentially harmful intensive clinical interventions at the end of life. © The Author(s) 2015.
Shawawra, Mousa; Khleif, Amal Dweib
Palliative care is a very new concept in Palestine. In fact, it is still not applicable or provided within the Palestinian health care system. However, Al-Sadeel Society had organized a one day workshop in Bethlehem on November 2008 for the health professionals from the governmental and non-governmental sectors to initiate and introduce the idea of palliative care for the first time in Palestine. The general population of Palestine is approximately 2.4 millions (2007), with a life expectancy of 74.3 years of age, the death rate is 3.7 per 1000 population, having 8,910 deaths a year. Deaths due to cancer were 2,305 in five years (1999-2003), where 5,542 new cases were newly diagnosed in the same period. Health services available for cancer patients are hospital units either in patient or day care units. According to the ministry of health (MOH) statistics there are 75 beds in oncology departments in MOH hospitals; represent 2.7% of the total number of beds available, and 60 beds in daily care departments with an occupancy rate at 231.8%. There is no hospice or bereavement follow up care available for patients or their families. Despite the fact that the Palestinian culture is one of the cultures that respect and care for the elderly, but at the end of life, when the load of symptoms is high, most of the patient are care for at hospitals, and usually dye there, because the families are not able to care for their patients, and as there is no system for home care available for the Palestinian patients, and if it is available it is available in limited places and on private bases that are expensive and not affordable to the majority of patients, gross domestic product (GPD) per capita= 1,100 as 2007 estimates). We conducted a needs assessment survey within the only four facilities that provide care for the oncology patients in the West Bank and were filled by the direct health care providers. The results were expressing the fact that there is no palliative care service
"Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts.
Beddard-Huber, Elizabeth; Jayaraman, Jyothi; White, Laura; Yeomans, Wendy
The aim of this study was to evaluate the utility of the Edmonton Symptom Assessment System (ESAS-r) Scale on a tertiary palliative care unit. There were 92 admitted patients who participated in the study; the scale was administered to those able to participate on day 1 (n = 35, 38 percent), on day 4 (n = 20, 21 percent), and weekly. Patient comfort level with the ESAS-r tool was assessed using a 5-point Likert scale (strongly disagree to strongly agree) on day 4. Nurses' and physicians' perceptions of clinical assessment pre- and postimplementation of the scale were surveyed using a 5-point Likert scale. Of the participating physicians, 75 percent (n = 3) found that the ESAS-r Scale did not enhance clinical assessment; the proportion of nurses with that response was 37.5 percent (n = 6). Among these care providers, 50 percent of the physicians (n = 2) and 62 percent of the nurses (n = 10) thought that the scale was burdensome to patients; but 60 percent of the patients who were able to complete the comfort-level survey (n = 12) indicated that they did not find the scale burdensome. Patient acuity, team expertise, perceived burden to patients, and time commitment all influenced staff's recommendation not to implement the ESAS-r tool on the palliative care unit.
1. Cervical cancer is the most frequent cancer in females and also the most frequent among female genital cancers. 2. Ever though the modality of diagnostic procedures for early detection has improved, in fact most of the patients present in the late stages, so the disease is already incurable, and palliative care is really needed. 3. Palliative care is needed not only for the terminally ill patients, but can be started at the time the cancer is diagnosed. 4. Palliative care is a multidisciplinary approach requiring teamwork. 5. Palliative care in Indonesia, especially in Dr. Soetomo Hospital, is a new modality in the fight against cancer, so we suffer many disadvantages, e.g., disability, limitation, lack of experience. However, such problems will stimulate the team to learn more.
Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory
Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.
Parpa, Efi; Galanopoulou, Natasa; Tsilika, Eleni; Galanos, Antonis; Mystakidou, Kyriaki
To investigate the psychometric properties of the Greek 13-item measure of patients' satisfaction (FAMCARE-P13) in palliative care setting. A hundred patients completed the FAMCARE-P13. Exploratory factor analysis and confirmatory factor analysis (CFA) have been conducted. Two factors' solution was revealed from CFA. The questionnaire was administered to an initial validation sample and then for test-retest in a sample of 40 patients 3 days later. The Rosenberg Self-Esteem Scale measuring global self-esteem has been also used as a gold standard for construct validity. Subscale and known groups validity have also been tested for FAMCARE-P13s' validity. A reduced 13-item version of our measure (FAMCARE-P13) possessed 2-factor structure with high reliability. Patient satisfaction was correlated with physical distress, communication and relationship with health-care providers, and caregiver satisfaction. We recommend the use of the Greek FAMCARE-P13 to assess care satisfaction of patients with advanced-stage cancer.
Feio, Madalena; Sapeta, Paula
Xerostomia is the subjective feeling of mouth dryness, caused or not by function lowering of salivary glands, with decrease of saliva quality or quantity. It's a frequent symptom in palliative care patients and its prevalence is referred to be 60% to 88% in advanced and progressive oncological disease patients. Xerostomia has physical, social and psychological consequences. Saliva plays an important role in maintaining the best physiological conditions of mouth. Besides humidifying the oral cavity tissues, its lubricating properties help swallowing, talking and prevents other damages caused by mechanical and noxious microbiological agents. Xerostomia is caused by three basic mechanisms: factors that compromise the salivary centre, factors related to the autonomic stimulation or factors related to salivary glands themselves. The diagnosis is mainly clinical. Mouth condition must be thoroughly evaluated. If justified, a quantitative evaluation of saliva secretion, in rest and under stimulation, might be done. The treatment must be oriented by aetiology and directed towards the disease effects in patient comfort and quality of life. During treatment, the use of xerogenic drugs should be controlled, hydration should be promoted and other symptom control measures improved. The symptomatic treatment has three pathways: the increasing of saliva production by mechanical, gustatory or pharmacological stimulation; the using of saliva substitutes and the improving of active mouth care. Mechanical stimulation is obtained by chewing gum and gustatory stimulation may be reached by sucking Vitamin C tablets. Pilocarpine is the available drug to improve salivation. A soft diet must be advised, hard and dry food, tobacco and alcoholic beverages should be avoided. It's important that health workers teach patients with xerostomia the best way to get relief and the measures to prevent its complications that could, even more, compromise their quality of life.
Klepstad, Pål; Kaasa, Stein; Cherny, Nathan; Hanks, Geoffrey; de Conno, Franco
The Research Network of the European Association for Palliative Care (EAPC) performed a survey of 3030 cancer patients from 143 palliative care centres in 21 European countries. The survey addressed pain intensity and the use of non-opioid analgesics, adjuvant analgesics and opioids. Patients were treated with analgesics corresponding to the WHO pain ladder step I (n = 855), step II (n = 509) and step III (n = 1589). The investigators assessed 32% of the patients as having moderate or severe pain. In general there were small differences between pain intensities across different countries. Cancer primary sites and the presence of metastasis had only minor influences on pain intensity. The most frequently used non-opioid analgesics were NSAIDs (26%) and paracetamol (23%). Adjuvant analgesics or co-analgesics used by >1% of the patients were corticosteroids (39%), tricylic antidepressants (11%), gabapentin (5%), bisphosphonates (4%), clonazepam (2%), carbamazepine (4%) and phenytoin (2%). The use of non-opioid analgesics and co-analgesics varied widely between countries. Opioids administered for mild to moderate pain were codeine (8%), tramadol (8%), dextropropoxyphene (5%) and dihydrocodeine (2%). Morphine was the most frequently used opioid for moderate to severe pain (oral normal release morphine: 21%; oral sustained-release morphine: 19%; i.v. or s.c. morphine: 10%). Other opioids for moderate to severe pain were transdermal fentanyl (14%), oxycodone (4%), methadone (2%), diamorphine (2%) and hydromorphone (1%). We observed large variations in the use of opioids across countries. Finally, we observed that only a minority of the patients who used morphine needed very high doses.
Koh, Kwee Choy; Gupta, Esha Das; Poovaneswaran, Sangeetha; Then, Siaw Ling; Teo, Michelle Jia Jui; Gan, Teik Yiap; Thing, Joanne Hwei Yean
Context: The Palliative Care Outcome Scale (POS) is an easy-to-use assessment tool to evaluate the effectiveness of palliative care. There is no published literature on the use of POS as an assessment tool in Malaysia. Aim: To define the concordance in the assessment of quality of life between patients with advanced cancers and their palliative care nurses using a Malay version of the POS. Settings and Design: This study was conducted in the palliative care unit of the Hospital Tuanku Ja'afar Seremban, Malaysia, from February 2014 to June 2014. Subjects and Methods: We adapted and validated the English version of the 3-day recall POS into Malay and used it to define the concordance in the assessment of quality of life between patients and palliative care nurses. Forty patients with advanced stage cancers and forty palliative care nurses completed the Malay POS questionnaire. Statistical Analysis Used: The kappa statistical test was used to assess the agreement between patients and their palliative care nurses. Results: Slight to fair concordance was found in all items, except for one item (family anxiety) where there was no agreement. Conclusions: The Malay version of the POS was well accepted and reliable as an assessment tool for evaluation of the effectiveness of palliative care in Malaysia. Slight to fair concordance was shown between the patients and their palliative care nurses, suggesting the needs for more training of the nurses. PMID:28216862
Whittall, Dawn; Lee, Susan; O'Connor, Margaret
To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment
Multiprofessional teams have become in recent years one of the distinguishing features of services, where professionals with different competences work together. The core of our interest is addressed to the équipe of a palliative care ward; in particular, to that series of working activities that consists of communicative acts, as équipe meetings, for instance. Our research focuses on the analysis of the process by which the development of knowledge in multiprofessional practice is built to establish more information on recurrent patterns in the interaction and connect them to the specific context that these are shaped by. In this sense we will underline how components of knowing are shared among team members in constructing medical prognosis and we will analyse the connection among language processes, cognitive activities and social structures. More specifically, we will study the role of language and the context in the definition of linguistic acts in cognitive activities and in hierarchies involved in decision-making processes by exploring and pointing out how it is organised and structured. In particular through the study of talk-in-interaction where interchange of information is realised, we will emphasise how, in the multiprofessional équipe meeting, the realisation of practices and the knowledge useful to collaborative management of ward working life are established. To reach this aim, we adopted an ethnographic approach connected to the analysis of the situated interaction.
Notes that role of psychologist on palliative care unit is to be there for terminally ill, their friends, and their families, both during the dying and the bereavement and for the caregiver team. Focuses on work of decoding ordinary words which for many patients hide painful past. Stresses necessity to remain open to unexpected. (Author/NB)
Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Berghe, Paul Vanden; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan
In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards.
Wang, Lin; Piet, Leslie; Kenworthy, Catherine M; Dy, Sydney M
Association between palliative case management (PCM) and the utilization of major health services during the last 30 days of life in Medicaid patients with cancer was assessed using retrospective cohort analysis. There were 132 PCM enrollees in the intervention group and 54 non-PCM enrollees in the comparison group. The intervention group had lower inpatient admission rate than that of the comparison group (56.8% vs 74.1%), lower ICU admission rate (12.9% vs 24.1%), longer mean hospice days (45.8 vs 31.1 days), and lower percentage of persons with death in hospital (24.2% vs 35.9%). No statistically significant differences were found in mean intensive care unit days (8.7 vs 9.7 days), treat-and-release emergency department visit rate (22.0% vs 16.7%), or hospice election rate (65.9% vs 70.4%). Palliative case management may reduce hospitalization and increase hospice use in patients nearing death.
Englert, M; Hanson, B; Lossignol, D
The Belgian law relative to euthanasia prescribes that a physician performing an euthanasia has to complete a registration document and to send it within 4 days to the federal commission for control and evaluation of euthanasia. The 259 first documents are described in the report of the commission referred to Parliament on September 17, 2004. The present paper analyses this report and compares its most important data with those published in the Netherlands: apart from the total number of euthanasia's, much smaller in Belgium, and apart from aspects which are specifically related to the Belgian law, the statistical data are very similar in both countries. The difference in the number of registration documents written in French and in Flemish is analyzed and discussed. A first evaluation of the application of the law in a supportive and palliative care unit is reported.
Tsai, Jaw-Shiun; Chen, Chao-Hsien; Wu, Chih-Hsun; Chiu, Tai-Yuan; Morita, Tatsuya; Chang, Chin-Hao; Hung, Shou-Hung; Lee, Ya-Ping; Chen, Ching-Yu
Consciousness is an important factor of survival prediction in advanced cancer patients. However, effects on survival of changes over time in consciousness in advanced cancer patients have not been fully explored. This study evaluated changes in consciousness after admission to a palliative care unit and their correlation with prognosis in terminal cancer patients. This is a prospective observational study. From a palliative care unit in Taiwan, 531 cancer patients (51.8% male) were recruited. Consciousness status was assessed at admission and one week afterwards and recorded as normal or impaired. The mean age was 65.28±13.59 years, and the average survival time was 23.41±37.69 days. Patients with normal consciousness at admission (n=317) had better survival than those with impaired consciousness at admission (n=214): (17.0 days versus 6.0 days, p<0.001). In the analysis on survival within one week after admission, those with normal consciousness at admission had a higher percentage of survival than the impaired (78.9% versus 44.3%, p<0.001). Patients were further classified into four groups according to consciousness levels: (1) normal at admission and one week afterwards, (2) impaired at admission but normal one week afterwards, (3) normal at admission but impaired one week afterwards, and (4) impaired both at admission and one week afterwards. The former two groups had significantly better survival than the latter two groups: (median survival counted from day 7 after admission), 25.5, 27.0, 7.0, and 7.0 days, respectively. Consciousness levels one week after admission should be integrated into survival prediction in advanced cancer patients.
Hermsen, M A; ten Have, H A
With the growth of palliative care services, interest in moral issues also seems to be growing. However, we need to know which moral issues are specific to palliative care. The first step in answering this is to consider the moral concerns raised and discussed by the palliative care community itself. This article presents a bibliographical analysis of moral problems, first by selecting the problems identified as moral problems in the leading palliative care journals, and then by classifying these into different types.
Lloyd-Williams, Mari; Field, David
Responses from 46 of 108 nurse educators in the United Kingdom indicated that diploma students received a mean of 7.8 hours and degree students 12.2 hours of palliative care training. Although 82% believed it should be a core component, 67% had difficulty finding qualified teachers. Palliative care knowledge was not formally assessed in most…
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This article discusses fatigue in patients receiving palliative care. The article initially considers the prevalence of fatigue in different groups of palliative care patients, then addresses how it manifests before reviewing how it can be assessed and managed. The focus of the article is on palliative care but it draws on, and has relevance for, chronic disease more widely.
Detroyer, Elke; Clement, Paul M; Baeten, Nele; Pennemans, Michèle; Decruyenaere, Marleen; Vandenberghe, Joris; Menten, Johan; Joosten, Etienne; Milisen, Koen
The Delirium Observation Screening Scale (DOS) is designed to detect delirium by nurses' observations and has shown good psychometric properties. Its use in palliative care unit patients has not been studied. To determine diagnostic and concurrent validity, internal consistency, and user-friendliness of the Delirium Observation Screening Scale administered by bedside nurses in palliative care unit patients. In this descriptive study, psychometric properties of the Delirium Observation Screening Scale were tested by comparing the performance on the Delirium Observation Screening Scale (bedside nurses) to the algorithm of the Confusion Assessment Method and the Delirium Index (DI) (researchers). Paired observations were collected on three time points. Afterward, the user-friendliness of the Delirium Observation Screening Scale was determined by bedside nurses using a questionnaire. In total, 48 patients were recruited from one palliative care unit (PCU) of a university hospital. Of the 14 eligible bedside nurses of the palliative care unit, 10 participated in the study. Delirium was present in 22.9% of patients. Diagnostic validity of the Delirium Observation Screening Scale was very good (area under the curve = 0.933), with 81.8% sensitivity, 96.1% specificity, 69.2% positive, and 98% negative predictive value. Concurrent validity of the Delirium Observation Screening Scale with the Delirium Index was moderate (rSpearman = 0.53, p = 0.001). The Cronbach's alpha for all Delirium Observation Screening Scale shift scores was 0.772. Generally, bedside nurses experienced the Delirium Observation Screening Scale as user-friendly. However, most Delirium Observation Screening Scale items (n = 11/13 items) need verbally active patients to perform the observations correctly. The Delirium Observation Screening Scale can be used for delirium screening in verbally active palliative care unit patients. The scale was rated as easy to use and relevant. Further validation studies in
Buxton, Katherine L; Stone, Robert A; Buckingham, Rhona J; Pursey, Nancy A; Roberts, Christopher M
Patients with chronic obstructive pulmonary disease report a symptom burden similar in magnitude to terminal cancer patients yet service provision and access has been reported as poor. In the absence of a specific national chronic obstructive pulmonary disease service framework the gold standards framework might support service developments. We surveyed 239 UK acute hospital units admitting chronic obstructive pulmonary disease patients, comprising 98% of all acute trusts, about their current and planned provision for palliative care services. Only 49% of units had a formal referral pathway for palliative care and only 13% had a policy of initiating end-of-life discussions with appropriate patients. Whilst 66% of units had plans to develop palliative care services, when mapped against the gold standards framework few were directly relevant and only three of the seven key standards were covered to any significant degree. We conclude that service provision remains poor and access is hindered by a lack of proactive initiation of discussion. Planned developments in chronic obstructive pulmonary disease palliative care services also lack a strategic framework that risks holistic design.
Poppel, David M; Cohen, Lewis M; Germain, Michael J
Despite ongoing technological advances, patients with end-stage renal disease (ESRD) have a mortality rate of approximately 23% per year, and comorbid cardiovascular, cerebrovascular, and peripheral vascular disorders often make life on dialysis an ordeal. This patient population needs an improved approach to symptom assessment and control, as well as advance care planning and high-quality palliative care. Families need support during the lifetime and after the death of their loved ones. To address these needs, the Renal Palliative Care Initiative (RPCI) was instituted at Baystate Medical Center, a large tertiary care hospital, and at eight dialysis clinics in the Connecticut River Valley. With the cooperation of a large nephrology practice, the Western New England Renal and Transplant Associates, a core group of physicians, nurses, and social workers were trained in palliative medicine, and charged with the goals of developing and implementing innovative interventions. The RPCI's programs include symptom management protocols, advance care planning, and bereavement services for families and staff. The Initiative is increasing completion of formal advance directives by the patient population, while staff and families are particularly pleased with annual renal memorial services. The RPCI experience has much to offer the practice of nephrology, and it is relevant to ongoing efforts to extend palliative medicine beyond the traditional focus on cancer and AIDS.
The Japan HOspice and Palliative Care Evaluation Study (J-HOPE Study): views about legalization of death with dignity and euthanasia among the bereaved whose family member died at palliative care units.
Okishiro, Nao; Miyashita, Mitsunori; Tsuneto, Satoru; Sato, Kazuki; Shima, Yasuo
There has been a debate in appropriateness of legalization of death with dignity and euthanasia in Japan. To clarify views about these issues, we conducted a large nationwide study of the bereaved whose family member died at palliative care units. The percentages of 429 bereaved family members (response rate 65%) who affirmed legal authorization were 52 for death with dignity and 45 for euthanasia and who affirmed assignment at the discretion of the physician involved were 37 for death with dignity and 38 for euthanasia. In conclusion, views about legalization of death with dignity and euthanasia among the bereaved are inconsistent. No consensus is reached as to legislation of these issues.
O'Connor, Moira; Pugh, Judith; Jiwa, Moyez; Hughes, Jeff; Fisher, Colleen
Palliative care emphasizes an interdisciplinary approach to care to improve quality of life and relieve symptoms. Palliative care is provided in many ways; in hospices, hospital units, and the community. However, the greatest proportion of palliative care is in the community. In hospice and palliative care units in hospitals, clinical pharmacists are part of the interdisciplinary team and work closely with other health care professionals. Their expertise in the therapeutic use of medications is highly regarded, particularly as many palliative care patients have complex medication regimens, involving off-label or off-license prescribing that increases their risk for drug-related problems. However, this active involvement in the palliative care team is not reflected in the community setting, despite the community pharmacist being one of the most accessible professionals in the community, and visiting a community pharmacist is convenient for most people, even those who have limited access to private or public transport. This may be due to a general lack of understanding of skills and knowledge that particular health professionals bring to the interdisciplinary team, a lack of rigorous research supporting the necessity for the community pharmacist's involvement in the team, or it could be due to professional tensions. If these barriers can be overcome, community pharmacists are well positioned to become active members of the community palliative care interdisciplinary team and respond to the palliative care needs of patients with whom they often have a primary relationship.
Jain, Nelia; Wallhagen, Margaret L.
Abstract Background: Age-related hearing loss is remarkably common, affecting more than 60% of adults over the age of 75. Moreover, hearing loss has detrimental effects on quality of life and communication, outcomes that are central to palliative care. Despite its high prevalence, there is remarkably little written on the impact of hearing loss in the palliative care literature. Objective: The objective was to emphasize its importance and the need for further study. We use a case as a springboard for discussing what is known and unknown about the epidemiology, presentation, screening methodologies, and treatment strategies for age-related hearing loss in palliative care. Discussion: The case describes a 65-year-old man with acute myelogenous leukemia (AML) that has progressed despite treatment. No concerns are raised about communication challenges during conversations between the palliative care team and the patient in his quiet room. However, in the midst of a family meeting, shortly after discussing prognosis, the patient reports that he cannot hear what anyone is saying. Conclusion: We describe simple methods of screening patients for hearing loss, and suggest that practical approaches should be used universally in patient encounters. These include facing the patient, pitching one's voice low, using a pocket talker, and creating a hearing-friendly environment when planning a family or group meeting. PMID:25867966
Best, Megan; Butow, Phyllis; Olver, Ian
A previous survey of the Multinational Association of Supportive Care in Cancer (MASCC) members found low frequency of spiritual care provision. We hypothesized that physicians with special training in palliative medicine would demonstrate an increased sense of responsibility for and higher self-reported adequacy to provide spiritual care to patients than health professionals with general training. We surveyed members of the Australian and New Zealand Palliative Medicine Society (ANZSPM) to ascertain their spiritual care practices. We sent 445 e-mails on four occasions, inviting members to complete the online survey. Tabulated results were analyzed to describe the results. One hundred and fifty-eight members (35.5 %) responded. Physicians working primarily in palliative care comprised the majority (95 %) of the sample. Significantly more of the ANZSPM than MASCC respondents had previously received training in spiritual care and had pursued training in the previous 2 years. There was a significant difference between the two groups with regard to interest in and self-reported ability to provide spiritual care. Those who believed it was their responsibility to provide spiritual care were more likely to have had training, feel they could adequately provide spiritual care, and were more likely to refer patients if they could not provide spiritual care themselves. Training in spiritual care was more common in healthcare workers who had received training in palliative care. ANZSPM members gave higher scores for both the importance of spiritual care and self-reported ability to provide it compared to MASCC members.
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Aziz, Noreen M.; Grady, Patricia A.; Curtis, J. Randall
There has been a dramatic increase in attention to the field of palliative care and end of life (PCEOL) research over the past 20 years. This increase is particularly notable in the development of palliative care clinical and educational programs. However, there remain important shortcomings in the evidence base to ensure access to and delivery of effective palliative care for patients with life-limiting illness and their families. Development of this evidence base will require that we train the next generation of researchers to focus on issues in PCEOL. The purpose of this article is to explore the current status of the recruitment, training, and retention of future investigators in PCEOL research in the U.S. and propose recommendations to move us forward. Some key contextual issues for developing and supporting this research workforce are articulated, along with timely and important research areas that will need to be addressed during research training and career development. We provide targeted key recommendations to facilitate the nurturing and support of the future research workforce that is needed to ensure the development and implementation of the science necessary for providing high-quality, evidence-based palliative care to all who need and desire it. PMID:23631858
Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R. Sean; von Gunten, Charles F.
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. PMID:19729681
Ransing, Viraj; Yennu, Sriram; Wu, Jimin; Liu, Diane; Reddy, Akhila; Delgado-Guay, Marvin; Bruera, Eduardo
Background. Delirium is a common neuropsychiatric condition seen in patients with severe illness, such as advanced cancer. Few published studies are available of the frequency, course, and outcomes of standardized management of delirium in advanced cancer patients admitted to acute palliative care unit (APCU). In this study, we examined the frequency, characteristics, and outcomes of delirium in patients with advanced cancer admitted to an APCU. Methods. Medical records of 609 consecutive patients admitted to the APCU from January 2011 through December 2011 were reviewed. Data on patients’ demographics; Memorial Delirium Assessment Scale (MDAS) score; palliative care specialist (PCS) diagnosis of delirium; delirium etiology, subtype, and reversibility; late development of delirium; and discharge outcome were collected. Delirium was diagnosed with MDAS score ≥7 and by a PCS using Diagnostic and Statistical Manual, 4th edition, Text Revision criteria. All patients admitted to the APCU received standardized assessments and management of delirium per best practice guidelines in delirium management. Results. Of 556 patients in the APCU, 323 (58%) had a diagnosis of delirium. Of these, 229 (71%) had a delirium diagnosis on admission and 94 (29%) developed delirium after admission to the APCU. Delirium reversed in 85 of 323 episodes (26%). Half of patients with delirium (n = 162) died. Patients with the diagnosis of delirium had a lower median overall survival than those without delirium. Patients who developed delirium after admission to the APCU had poorer survival (p ≤ .0001) and a lower rate of delirium reversal (p = .03) compared with those admitted with delirium. Conclusion. More than half of the patients admitted to the APCU had delirium. Reversibility occurred in almost one-third of cases. Diagnosis of delirium was associated with poorer survival. Implications for Practice: Delirium is the most common neuropsychiatric condition in patients with severe
Munro, S.; Mount, B.
Initial observations regarding the use of music therapy at one hospital in the palliative care of patients with advanced malignant disease are presented. In the hands of a trained music therapist, music has proven to be a potent tool for improving the quality of life. The diversity of its potential is particularly suited to the deversity of the challenges - physical, psychosocial and spiritual - that these patients present. Images FIG. 1 PMID:84704
Gulia, Ashish; Byregowda, Suman; Panda, Pankaj Kumar
Patients in advanced stages of illness trajectories with local and widespread musculoskeletal incurable malignancies, either treatment naive or having recurrence are referred to the palliative care clinic to relieve various disease-related symptoms and to improve the quality of life. Palliative care is a specialized medicine that offers treatment to the disease-specific symptoms, places emphasis on the psychosocial and spiritual aspects of life and help the patients and their family to cope with advance stage cancer in a stronger and reasonable way. The overall outcome of musculoskeletal malignancies has improved with the advent of multidisciplinary management. Even then these tumors do relapse and leads to organ failures and disease-specific deaths in children and young adults in productive age group thus requiring an integrated approach to improve the supportive/palliative care needs in end-stage disease. In this article, we would like to discuss the spectrum of presentation of advanced musculoskeletal malignancies, skeletal metastasis, and their management. PMID:27559251
Frković, Aleksandra; Bosković, Zvonimir
Palliative care is frequently discussed as an alternative or a counter-balance to euthanasia. In this paper, palliative care is considered as a response to dysthanasia or therapeutic persistence. First, the main features of dysthanasia are mentioned: the accent is put on different questions: until when to implement therapeutic persistence? When does the treatment become useless? What is a permanent vegetative condition? Then, palliative care, the scope of which is to achieve the best life quality for the patient and his family is discussed. The hospice and its care are emphasized, analyzing the international guidelines on the topics at the end of life. International palliative care recommendations are analyzed; special attention is paid on the codex of medical ethics and deontology and its regulations concerning palliative care. Conclusion summarizes some thoughts about dysthanasia and palliative care.
Despite significant advances in understanding the benefits of early integration of palliative care with disease management, many people living with a chronic life-threatening illness either do not receive any palliative care service or receive services only in the last phase of their illness. In this article, I explore some of the reasons for failure to provide palliative care services and recommend some strategies to overcome these barriers, emphasizing the importance of describing palliative care accurately. I provide language which I hope will help health care professionals of all disciplines explain what palliative care has to offer and ensure wider access to palliative care, early in the course of their illness. PMID:28469439
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.
Abstract 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. PMID:22925157
To review important issues that address respect for patient autonomy, beneficnce, non-maleficence, and justice, which are included in communication surrounding the determination of decision-making capacity, informed consent, breaking bad news, and creating shared goals of care. Review articles, and government and organizational reports. Palliative care and its proximity to end-of-life care issues frequently raises ethical issues for patients, their families, and the clinicians caring for them. Supporting the identification and honoring the patient's preferences for treatment are central components of ethical behavior. Advance care planning provides an important opportunity for respecting patient autonomy and may be helpful when discussing care options surrounding resuscitation, withholding or withdrawal of treatment, or the determination of medical futility.
Anderson, Wendy G; Puntillo, Kathleen; Cimino, Jenica; Noort, Janice; Pearson, Diana; Boyle, Deborah; Grywalski, Michelle; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Barbour, Susan; Turner, Kathleen; Moore, Eric; Liao, Solomon; Ferrell, Bruce; Mitchell, William; Edmonds, Kyle; Fairman, Nathan; Joseph, Denah; MacMillan, John; Milic, Michelle M; Miller, Monica; Nakagawa, Laura; O'Riordan, David L; Pietras, Christopher; Thornberry, Kathryn; Pantilat, Steven Z
Integrating palliative care into intensive care units (ICUs) requires involvement of bedside nurses, who report inadequate education in palliative care. To implement and evaluate a palliative care professional development program for ICU bedside nurses. From May 2013 to January 2015, palliative care advanced practice nurses and nurse educators in 5 academic medical centers completed a 3-day train-the-trainer program followed by 2 years of mentoring to implement the initiative. The program consisted of 8-hour communication workshops for bedside nurses and structured rounds in ICUs, where nurse leaders coached bedside nurses in identifying and addressing palliative care needs. Primary outcomes were nurses' ratings of their palliative care communication skills in surveys, and nurses' identification of palliative care needs during coaching rounds. Each center held at least 6 workshops, training 428 bedside nurses. Nurses rated their skill level higher after the workshop for 15 tasks (eg, responding to family distress, ensuring families understand information in family meetings, all P < .01 vs preworkshop). Coaching rounds in each ICU took a mean of 3 hours per month. For 82% of 1110 patients discussed in rounds, bedside nurses identified palliative care needs and created plans to address them. Communication skills training workshops increased nurses' ratings of their palliative care communication skills. Coaching rounds supported nurses in identifying and addressing palliative care needs. ©2017 American Association of Critical-Care Nurses.
de Paula Paz, Cássia Regina; Reis Pessalacia, Juliana Dias; Campos Pavone Zoboli, Elma Lourdes; Ludugério de Souza, Hieda; Ferreira Granja, Gabriela; Cabral Schveitzer, Mariana
Assess the need for incorporation of palliative care in primary health care (PHC) through the characterization of users eligible for this type of care, enrolled in a program for devices dispensing. Descriptive study of case series conducted in 14 health units in São Paulo (Brazil) in 2012. It was included medical records of those enrolled in a program for users with urinary and fecal incontinence, and it was applied Karnofsky Performance Scale Index (KPS) to identify the indication of palliative care. 141 of the 160 selected medical records had KPS information. Most cases (98.3%, 138/141) had performance below 70% and, therefore, patients were eligible for palliative care. The most frequent pathologies was related to chronic degenerative diseases (46.3%), followed by disorders related to quality of care during pregnancy and childbirth (24.38%). It is necessary to include palliative care in PHC in order to provide comprehensive, shared and humanized care to patients who need this.
Çeliker, Mahmut Yaşar; Pagnarith, Yos; Akao, Kazumi; Sophearin, Dim; Sorn, Sokchea
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives. PMID:28804708
Huffman, Joan L
Palliative care in itself has many challenges; these challenges are compounded exponentially when placed in the setting of a mass casualty event, such as the 2010 Haiti earthquake. Haiti itself was an austere environment with very little infrastructure before the disaster. US surgeons, intensivists, and nurses worked hand in hand with other international providers and Haitian volunteers to provide the best care for the many. Improvisation and teamwork as well as respect for the Haitian caregivers were crucial to their successes. Sisyphean trials lie ahead. Haiti and its people must not be forgotten.
... Answers Palliative Care Questions and Answers Question Palliative Care Hospice Care Who can receive this care? Anyone with a ... a package deal? No, there is no ‘palliative care’ benefit package Yes, hospice is a comprehensive benefit covered by Medicare and ...
Peirano, Gabriela P; Mammana, Guillermo P; Bertolino, Mariela S; Pastrana, Tania; Vega, Gloria F; Russo, Jorgelina; Varela, Gabriela; Vignaroli, Ernesto; Ruggiero, Raúl; Armesto, Arnaldo; Camerano, Gabriela; Dran, Graciela
The use of methadone for cancer pain is limited by the need of expertise and close titration due to variable half-life. Yet, it is a helpful palliative strategy in low-resources countries given its long-acting effect at low cost and worth additional study. Our aim was to describe the prescription and outcomes of methadone as a first-line treatment for cancer pain in a tertiary palliative care unit (PCU) in Argentina. Retrospective review of medical records of patients with moderate to severe cancer pain seen at the PCU in 1-year period, who initiated strong opioids at the first consultation. Data collected during the first month of treatment included disease and pain characteristics, initial and final opioid type and dose and need for opioid rotation. Methadone was the most frequent opioid both at the initial and last assessment (71 and 66 % of the prescriptions). In all, treatment with strong opioids provided considerable decrease in pain intensity (p < 0.001) with low and stable opioid dose. Median and interquartile range (IR) of oral morphine equivalent daily dose (OMEDD) was 26 (16-32) and 39 (32-55) mg for initial and final assessments, respectively (p = 0.3). In patients initiated with methadone, the median (IR) daily methadone dose was 5 (4-6) mg at first and 7.5 (6-10) mg at final assessment, and the median (IR) index of opioid escalation was 0 (0-4) mg; (p < 0.05). Patients on methadone underwent less percentage of opioid rotation (15 versus 50 %; p < 0.001) and longer time to rotation (20.6 ± 4.4 versus 9.0 ± 2.7 days; p < 0.001) than patients on other opioids. Results indicate the preference of methadone as first-line strong opioid treatment in a PCU, providing good pain relief at low doses with low need for rotation. Several considerations about the costs of strong opioids in the region are given.
Jayard, S Stephen; Irudayadason, Nishant A; Davis, J Charles
Death is inevitable, but that does not mean it can be planned or imposed. It is an ethical imperative that we attend to the unbearable pain and suffering of patients with incurable and terminal illnesses. This is where palliative care plays a vital role. Palliative care has been growing faster in the world of medicine since its emergence as a specialty in the last decade. Palliative care helps to reduce physical pain while affirming the aspect of human suffering and dying as a normal process. The goal of palliative care is to improve the quality of life both of the patient and the family.
Johannigman, Suzanne; Eschiti, Valerie
Marijuana has been documented to provide relief to patients in palliative care. However, healthcare providers should use caution when discussing medical marijuana use with patients. This article features a case study that reveals the complexity of medical marijuana use. For oncology nurses to offer high-quality care, examining the pros and cons of medical marijuana use in the palliative care setting is important.
Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J
Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p <0.001) and well-being (F = 6.41; p = 0.01). This effect was supported by a significantly greater increase in high-frequency oscillations of the heart rate (F = 8.13; p = 0.01). Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.
Murphy, Edel; Froggatt, Katherine; Connolly, Sheelah; O'Shea, Eamon; Sampson, Elizabeth L; Casey, Dympna; Devane, Declan
surrogate decision-makers of nursing home residents with advanced dementia. Data for 90 participants (35% of the original study) met the definition of advanced dementia for this review and were re-analysed for the purposes of the review. In this subset, intervention surrogates had lower scores for decisional conflict measured on the Decisional Conflict Scale (mean difference -0.30, 95% CI -0.61 to 0.01, reduction of 0.3 to 0.4 units considered meaningful) and were more likely than participants in the control group to discuss feeding options with a clinician (RR 1.57, 95% CI 0.93 to 2.64), but imprecision meant that there was significant uncertainty about both results. Very little high quality work has been completed exploring palliative care interventions in advanced dementia. There were only two included studies in this review, with variation in the interventions and in the settings that made it impossible to conduct a meta-analysis of data for any outcome. Thus, we conclude that there is insufficient evidence to assess the effect of palliative care interventions in advanced dementia. The fact that there are six ongoing studies at the time of this review indicates an increased interest in this area by researchers, which is welcome and needed.
Lee, Ya-Ping; Wu, Chih-Hsun; Chiu, Tai-Yuan; Chen, Ching-Yu; Morita, Tatsuya; Hung, Shou-Hung; Huang, Sin-Bao; Kuo, Chia-Sheng; Tsai, Jaw-Shiun
Although many cross-sectional studies have demonstrated the association between cancer pain and psychospiritual distress, the time-dependent relationship has not been fully explored. For that reason, this study aims to investigate the time-dependent relationship between psychospiritual distress and cancer pain management in advanced cancer patients. This is a prospective observational study. Two hundred thirty-seven advanced cancer patients were recruited from a palliative care unit in Taiwan. Demographic and clinical data were retrieved at admission. Pain and psychospiritual distress (i.e.: anxiety, depression, anger, level of family and social support, fear of death) were assessed upon admission and one week later, by using a "Symptom Reporting Form". Patients were divided into two groups according to the pain status one week post-admission (improved versus not improved groups). One hundred sixty-three (68.8 %) patients were assigned to the improved group, and 74 (31.2 %) patients were assigned to the not improved group. There were no differences in the psychospiritual variables between groups upon admission. In overall patients, all psychospiritual variables improved one week post-admission, but the improvement of depression and family/social support in the not improved group was not significant. Consistent with this, for depression scores, there was a statistically significant pain group x time interaction effect detected, meaning that the pain group effect on depression scores was dependent on time. We demonstrated a time-dependent relationship between depression and pain management in advanced cancer patients. Our results suggest that poor pain management may be associated with intractable depression. The inclusion of interventions that effectively improve psychospiritual distress may contribute to pain management strategies for advanced cancer patients.
Jankowski, Jane B
This article explores the hypothesis that when a child has a life-limiting illness, the interpersonal boundaries between the patient, the patient's parents, and the health care team members differ from traditional provider, patient, and parent boundaries because of the unique dynamics of palliative care in pediatrics. Providers from the Journey's Palliative Care Team at Albany Medical Center completed a brief survey about working in pediatric palliative care and what ethical challenges they have faced in trying to maintain professional boundaries as new palliative care providers. A retrospective review of survey responses and a review of relevant literature offer insight into the various concerns reported by the Journey's team. Conclusions about delivering comprehensive ethically sound palliative care services may serve as a pathway for future studies.
Mercadante, Sebastiano; Porzio, Giampiero; Caruselli, Amanda; Aielli, Federica; Adile, Claudio; Girelli, Nicola; Casuccio, Alessandra
Cancer patients with a history of alcoholism may be problematic. The frequency of alcoholism among patients with advanced cancer has never been reported in Italy or other European countries. The aim of this prospective study was to determine the frequency of alcoholism, assessed with a simple and validated instrument, among patients with advanced cancer who were referred to two different palliative care settings: an acute inpatient palliative care unit (PCU) of a comprehensive cancer center in a metropolitan area and a home care program (HCP) in a territorial district, localized in the mountains of Italy. A consecutive sample of patients admitted to an inpatient PCU and to an HCP was assessed for a period of eight months. Each patient who agreed to be interviewed completed the Cut down, Annoyed, Guilty, Eye-opener (CAGE) questionnaire. Patients were then interviewed informally to gather information about their history with alcohol. In total, 443 consecutive patients were surveyed; data from 249 to 194 patients were collected in the PCU and HCP, respectively, in the eight-month period. The mean age was 66.4 (SD 12.7) years, and 207 were males. The mean Karnofsky level was 54.2 (SD 14.6). Eighteen patients were CAGE positive (4.06%). Males (Pearson Chi-squared, P = 0.027) and younger patients (analysis of variance test, P = 0.009) were more likely to be CAGE positive. Informal interviews revealed that 17 patients (3.83%) were alcoholics or had a history of alcoholism, and that alcoholism was strongly correlated with CAGE (Pearson Chi-squared, P < 0.0001). Only a minority of patients were CAGE positive, with a similar frequency in the PCU and HCP settings. CAGE-positive patients were more likely to be male and younger, independent of diagnosis and performance status. CAGE was positively correlated with informal interviews for detecting alcoholism. As CAGE patients express more symptom distress, it is important to detect this problem with a simple tool that has a
Storme, Laurent; de Mézerac, Isabelle
Following antenatal diagnosis of a lethal disorder, some parents are so overwhelmed by grief that therapeutic abortion is seen as the least traumatic option. However, the impending death and anticipated mourning create a particularly complex emotional situation. When faced with such dramatic circumstances, some parents seek to restore meaning to their parenthood by accompanying their baby through to the end of its life. Methods derived from hospice care may be appropriate in such situations, considering the unborn child as "a living being among the living ", pregnancy as the first chapter of every life, and death as a natural process. This approach, which may be adopted in maternity wards and neonatal intensive care units, requires the medical team to provide consistent information to the parents and to ensure their close involvement. These new parental demands must be clearly understood if they are to be met as effectively as possible.
Monti, M; Castellani, L; Berlusconi, A; Cunietti, E
Anemia is often associated with neoplastic disorders. Blood transfusions are used to alleviate the discomfort of anemic cancer patients. Of 246 terminally ill cancer patients admitted to our palliative care unit from October 1991 to December 1993 (128 women and 118 men), 31 patients (12.6%) (17 men and 14 women; age, 69.5 +/- 12 years) received on average 2.8 units of packed red blood cells (PRBCs) (range, 2-7 units/patient) in 35 separate admissions. PRBCs were transfused in the presence of low hemoglobin (Hb) levels ( < or = 8 g/dL) and/or severe fatigue or dyspnea. Pre-transfusion performance status, cognitive function, dyspnea, and fatigue at rest (evaluated by a four-point scale), complete blood count, serum albumin, and C-reactive protein were determined. The day after transfusion, subjective well-being was recorded as "yes/no" improvement in comparison with the pre-transfusion day. Improved subjective well-being after blood transfusion was reported in 51.4%, without significant relationship to pre-transfusion Hb levels or performance status. The influence of blood transfusion on subjective well-being was not related to the severity of dyspnea or fatigue. Twenty-one patients (60%), including seven with subjective improvement, died during the same hospitalization, a median of 49 days after transfusion. Pre-transfusion Hb level did not differ significantly in patients who benefited and did not benefit from transfusion, whereas time before death was significantly (P < 0.001) shorter in patients who did not benefit. In the discharged patients (40%), the median interval between transfusion and discharge was 13 days and the frequency of subjective improvement in well-being was 78.6%. Our data suggest that two main areas should be investigated, namely the relation between low Hb levels and symptoms and signs in terminally ill cancer patients, and the correct timing for effective blood transfusion. A combination of criteria is needed for effective transfusion; they
Griffith, Jane; Lyman, Jason A; Blackhall, Leslie J
Palliative care that provides specialized attention to pain and symptom management is important for patients with cancer. Palliative care aims to reduce pain and other symptoms through an interdisciplinary approach involving physicians, nurses, social workers, and other members of the healthcare team. Families are included in care planning. Patients and families benefit from the availability of palliative care services early in the disease process, particularly when symptoms impact quality of life. One way to implement early palliative interventions is the establishment of an ambulatory care clinic dedicated to palliative care. This article describes the experience of an outpatient palliative care clinic at a large teaching hospital by using case studies to highlight the benefits of ambulatory palliative care and concluding with recommendations for research.
Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar
World Health Organization defines “palliative care” as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enlightens the importance of dentist role in palliative team. PMID:25121074
Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss Em
Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. To assess national models and methods for financing and reimbursing palliative care. Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.
Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss EM
Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest. PMID:28156188
Lilly, Evan J; Senderovich, Helen
Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development.
Feudtner, Chris; Blinman, Thane A
Palliative care is now a core component of pediatric care for children and families who are confronting serious illness with a low likelihood of survival. Pediatric surgeons, in partnership with pediatric palliative care teams, can play a pivotal role in assuring that these patients receive the highest possible quality of care. This article outlines a variety of definitions and conceptual frameworks, describes decision-making strategies and communication techniques, addresses issues of interdisciplinary collaboration and personal self-awareness, and illustrates these points through a series of case vignettes, all of which can help the pediatric surgeon perform the core tasks of pediatric palliative care. Copyright © 2013 Elsevier Inc. All rights reserved.
Waldman, Elisha; Wolfe, Joanne
Over the past two decades, paediatric palliative care has emerged as both a primary approach and as its own medical subspecialty, the overall aim of which is to ease suffering for children with life-threatening illness and their families through a concurrent model of care. However, most discussions have been focused on the transition to palliative care when no realistic hope for cure exists. We believe that, because the course of cancer is so unpredictable, this idea is misleading. Indeed, palliative care is increasingly being recognized as being about not just how to cope with the process of dying, but also about how to engage in living when faced with a life-threatening illness. This article will examine our current understanding of several areas of palliative care, with the ultimate message that palliative care is simply a novel term for the total care of a child and family, an approach that should be applied consistently and concurrently regardless of disease status. By improving familiarity with palliative care and building relationships with palliative care specialists, the paediatric oncology clinician will ensure that the best care possible for children and families is provided, regardless of outcome.
An article about the growth of palliative care, a medical subspecialty that has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care.
Sherman, Deborah Witt
Describes the role and responsibilities of advanced-practice nurses in palliative care and nursing's initiative in promoting high-quality care through the educational preparation of these nurses. (JOW)
Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo
The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities
Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran
Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options.
Billings, J Andrew; Dahlin, Constance; Dungan, Sheryn; Greenberg, Donna; Krakauer, Eric L; Lawless, Nan; Montgomery, Paul; Reid, Coleen
We present a description of a one-year palliative care fellowship training program for physicians at the Massachusetts General Hospital. We provide background information on the Palliative Care Service, and offer an overview of the educational content and methods for fellowship training, focusing especially on psychosocial aspects of care. The medical background and post-training positions of fellows are described. This document is meant to assist other palliative care fellowship programs in developing their curricula and possibly to serve as an initial template for creating educational standards and for identifying outcome measures for educational evaluation of such programs.
Pastrana, Tania; Eisenchlas, Jorge; Centeno, Carlos; De Lima, Liliana
Several studies have been published reporting the status of palliative care in different countries of Latin America, but no studies have been published on the status of the discipline across the whole region. This article provides a summary of the current situation as reported in the Atlas of Palliative Care recently completed by the Latin American Association for Palliative Care. The aim of this project was to collect information on the degree of palliative care development, help create a network, and influence the progress of palliative care across Latin America. The Atlas provides an overview of the status of palliative care in Latin America according to the World Health Organization public health strategy for palliative care: policies, drug availability, education, and implementation of services. The results indicate that there is significant variation among countries in the region and that strategies to support and develop palliative care require tailored approaches to meet the needs of each. The information in this review gives a broad notion of the current status of palliative care in Latin America. The Atlas is expected to help the progress of palliative care and serve as a driver of the field in Latin America and other regions.
Lux, Michael R; Protus, Bridget McCrate; Kimbrel, Jason; Grauer, Phyllis
Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. To determine the preferred medications physicians use when implementing palliative sedation. An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.
Hajjar, Ramzi R; Charalambous, Haris A; Baider, Lea; Silbermann, Michael
Care for elderly people with life-limiting illness cannot be delivered primarily by geriatricians or palliative care practitioners. The role of these clinicians is to help carers become adept in palliative care medicine. In a culture in which family ties run deep, the offer of palliative care from an outsider may be met with suspicion. The family bond in the Middle East is strong, but the emotional response to terminal illness may push families to request futile treatments, and physicians to comply. When palliative care is well developed and well understood, it provides a viable alternative to such extreme terminal measures. Copyright © 2015 Elsevier Inc. All rights reserved.
This article applies the anthropological concept of liminality to reconceptualize palliative care ethics. Liminality possesses both spatial and temporal dimensions. Both these aspects are analyzed to provide insight into the intersubjective relationship between patient and caregiver in the context of palliative care. Aristotelian practical wisdom, or phronesis, is considered to be the appropriate model for palliative care ethics, provided it is able to account for liminality. Moreover, this article argues for the importance of liminality for providing an ethical structure that grounds the doctrine of double effect and overcomes the impasse of phronesis in the treatment of the terminally ill.
Rocker, Graeme M; Simpson, A Catherine; Horton, Robert
The tendency toward "either/or" thinking (either cure or comfort) in traditional biomedical care paradigms does little to optimize care in advancing chronic illness. Calls for improved palliation in chronic lung disease mandate a review of related care gaps and current clinical practices. Although specialist palliative services have their advocates, adding yet another element to an already fragmented, often complex, care paradigm can be a challenge. Instead, we propose a more holistic, patient-centered approach based on elements fundamental to palliative and best care practices generally and integrated as needed across the entire illness trajectory. To support this approach, we review the concept of primary palliative care competencies, identify vulnerability specific to those living with advanced COPD (an exemplar of chronic lung disease), and describe the need for care plans shaped by patient-centered communication, timely palliative responsiveness, and effective advance care planning. A costly systemic issue in the management of chronic lung disease is patients' increasing dependency on episodic ED care to deal with preventable episodic crises and refractory dyspnea. We address this issue as part of a proposed model of care that provides proactive, collaborative case management and the appropriate and carefully monitored use of opioids. We encourage and support a renewed primary care resolve to integrate palliative approaches to care in advanced lung disease that, in concert with judicious referral to appropriate specialist palliative care services, is fundamental to what should be a more sustainable systematic improvement in palliative care delivery.
McKinley, Deb; Shearer, Janelle; Weng, Karla
Palliative care, which involves managing symptoms, controlling pain and addressing stress caused by a chronic or terminal illness, has been shown to keep patients out of the hospital and allow them to stay home and live more comfortably with their illness. Typically, it is provided by an interdisciplinary team led by a physician trained in palliative medicine. Rural areas have not always had access to such specialists. Yet, today, rural health care organizations are finding ways to create palliative care programs that meet the needs of their chronically ill and aging populations. This article describes a six-year initiative led by Stratis Health to advance palliative care in rural Minnesota. It highlights the work of FirstLight Health System in Mora and describes Stratis Health's Rural Palliative Care Measurement Pilot Project, an effort to develop and test measures for evaluating rural palliative care programs.
Gwyther, Liz; Brennan, Frank; Harding, Richard
The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as
Boss, Renee D
Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining goals of care and making decisions about life support. For both the extremely premature infant who dies soon after birth and the extremely premature infant who experiences multiple complications over weeks and months in the neonatal intensive care unit, palliative care can maintain a focus on infant comfort and family support. This article highlights the ways in which palliative care can be incorporated into intensive care for all critically ill infants.
Ward-Smith, Peggy; Linn, Jill Burris; Korphage, Rebecca M; Christenson, Kathy; Hutto, C J; Hubble, Christopher L
The American Academy of Pediatrics has provided clinical recommendations for palliative care needs of children. This article outlines the steps involved in implementing a pediatric palliative care program in a Midwest pediatric magnet health care facility. The development of a Pediatric Advanced Comfort Care Team was supported by hospital administration and funded through grants. Challenges included the development of collaborative relationships with health care professionals from specialty areas. Pediatric Advanced Comfort Care Team services, available from the time of diagnosis, are provided by a multidisciplinary team of health care professionals and individualized on the basis of needs expressed by each child and his or her family.
Scherer, Jennifer S; Wright, Rebecca; Blaum, Caroline S; Wall, Stephen P
A diagnosis of advanced chronic kidney disease (CKD), or end stage renal disease (ESRD) represents a significant life change for patients and families. Individuals often experience high symptom burden, decreased quality of life, increased health care utilization, and end-of-life care discordant with their preferences. Early integration of palliative care with standard nephrology practice in the outpatient setting has the potential to improve quality of life through provision of expert symptom management, emotional support, and facilitation of advance care planning that honors the individual's values and goals. This special report describes application of participatory action research (PAR) methods to develop an outpatient integrated nephrology and palliative care program. Stakeholder concerns were thematically analyzed to inform translation of a known successful model of outpatient kidney palliative care to a practice in a large, urban medical center in the United States. Stakeholder needs and challenges to meeting these needs were identified. We uncovered a shared understanding of the clinical need for palliative care services in nephrology practice, but apprehension towards practice change. Action steps to modify the base model were created in response to stakeholder feedback. The development of a model of care that provides a new approach to clinical practice requires attention to relevant stakeholder concerns. PAR is a useful methodological approach that engages stakeholders and builds partnerships. This creation of shared ownership can facilitate innovation and practice change. We synthesized stakeholder concerns to build a conceptual model for an integrated nephrology and palliative care clinical program. Copyright © 2017. Published by Elsevier Inc.
Hermsen, Maaike A; ten Have, Henk A M J
With the growth and development of palliative care, interest in pastoral care, spirituality, and religion also seems to be growing. The aim of this article is to review the topic of pastoral care, spirituality, and religion appearing in the journals of palliative care, between January 1984 and January 2002.
The basic principle of palliative care has evolved over time and is the historical origin of the modern hospice. WHO proposed the first definition of palliative care in 1989, and the definition was revised in 2002. These definitions have something in common. Both relieve the pain and suffering to improve QOL. Palliative care is also good for any kind of life-threatening disease, regardless of whether it requires short or long term recuperation. That also need to be able to accept equally all the people of the community. The provision of general palliative care is the responsibility of all medical, nursing, and health professionals for the welfare of all patients with life-threatening disease. Specialist palliative care is based on the basic principles of palliative care, intensive clinical training, and systematic acquisition of knowledge and skills training to support palliative care education, clinical research and training provided by the profession. It has been established by nursing and medical experts in palliative care that palliative care can provide expertise in interdisciplinary teams in different settings. It is necessary that the medical system.
da Silva, Marcelle M; Büscher, Andreas; Moreira, Marléa Chagas
Palliative care is a recent development in health worldwide. In Brazil, a growing number of people with cancer require palliative care, emphasizing the need for investment in this aspect of health to increase the quality of life of patients during the dying process. As a developing country, Brazil lacks knowledge regarding the themes, material and financial resources, and policies of palliative care. The aim of this study was to provide insights into the Brazilian palliative care system from the perspectives of nurses and physicians. This was a descriptive and qualitative study, conducted at the palliative care unit of the Instituto Nacional de Câncer in Brazil. Twelve professionals, among them 8 nurses and 4 physicians, were interviewed in November 2013. The data were analyzed using the thematic analysis method. Ethical aspects were respected. The perspectives of the participants were characterized by 3 themes regarding the initial phase of development of palliative cancer care in Brazil: (1) controversies about when palliative cancer care should be initiated, (2) the World Health Organization recommendations and current practices, and (3) the need to invest in palliative cancer care education in Brazil. The development of palliative care is in the initial stages, and there is a possibility for growth due to recent advances. Knowledge about these challenges to palliative care could contribute to the development of strategies, such as the establishment of service organizations and networks, as well as educational and political investments for the advancement of palliative care.
... cardiac disease, respiratory disease, kidney failure, Alzheimer’s, HIV/AIDS, amyotrophic lateral sclerosis (ALS), multiple sclerosis and more. Palliative care can be provided at any stage of ...
Palliative care and geriatrics share many ideas and concepts: both intend to imporve quality of life, both focus on more than the physical domain, and both work in a multiprofessional team. More and more the elderly person attracts notice by palliative care. In multimorbid geriatric patients intentions to cure and to care go alongside sometimes over years in a fragile equilibrium and with uncertain prognosis. Therefore principals of palliative care and geriatrics meet at its best in these patients: improving function plays a major role in any symptom management; how to deal with cognitively impaired patients can be learned from geriatrics; various approaches from curative, palliative and rehabilitative often go hand in hand; decision making is a permanent and sophisticated task in all patients due to prognosis and multimorbidity.
... gov/ency/patientinstructions/000531.htm Palliative care - fluid, food, and digestion To use the sharing features on ... When Your Body Has Problems Handling Fluids and Food It is normal for a person who has ...
Steinberg, Steven M
For most clinicians and patients, the discussion of palliative care is a difficult topic. It is complicated by both the clinician's and patient's belief systems, which are frequently heavily influenced by cultural and religious upbringing. This article discusses the impact of some of those differences on attitudes toward end of life decisions. Several different religions and cultures have been evaluated for their impact on perceptions of palliative care and the authors will share some examples.
Sandman, Lars; Molander, Ulla; Benkel, Inger
Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.
Mercadante, S; Genovese, G; Kargar, J A; Maddaloni, S; Roccella, S; Salvaggio, L; Simonetti, M T
Home care is greatly expanding because of the savings it offers by avoiding unnecessary hospitalization and also because patients benefit from being in their own home environments. Since 1988, Societa Assistenza Malato Oncologico Terminale (SAMOT) has organized a pain relief and home palliative care unit for terminal cancer patients. Objectives, difficulties, protocols, and achievements of 4 years of experience were examined, and the findings of the various years were compared. Our results suggest that considerable progress has been made in home palliative care. There are still social and cultural difficulties to overcome, however.
The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice.
Bétrémieux, P; Mannoni, C
The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. Copyright © 2013 Elsevier Masson SAS. All rights reserved.
Williams-Reade, Jackie; Lamson, Angela L; Knight, Sharon M; White, Mark B; Ballard, Sharon M; Desai, Priti P
Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center. In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families. Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support. The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.
Kaye, Erica C; Rubenstein, Jared; Levine, Deena; Baker, Justin N; Dabbs, Devon; Friebert, Sarah E
Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed.
Nelson, Judith E.; Cortez, Therese B.; Curtis, J. Randall; Lustbader, Dana R.; Mosenthal, Anne C.; Mulkerin, Colleen; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret L.; Weissman, David E.; Puntillo, Kathleen A.
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. PMID:21874122
Clark, Jennifer K; Fasciano, Karen
Young adulthood is a time of immense growth and possibilities. As a result, it is also a time when serious illness can have profound effects. This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. From the data, 2 primary themes emerged (1) ongoing young adult development not only generates unique biologic disease burdens and clinical treatment options but also requires frequent assessment and promotion and (2) binary health care systems often leave young adults without access to developmentally appropriate health care. Given its interdisciplinary approach, palliative care is uniquely poised to address the challenges known to caring for the seriously ill young adult.
Weissman, David E; Morrison, R Sean; Meier, Diane E
Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.
Pokropska, Wieslawa; Łuczak, Jacek; Kaptacz, Anna; Stachowiak, Andrzej; Hurich, Krystyna; Koszela, Monika
Introduction The main task of palliative care units is to provide a dignified life for people with advanced progressive chronic disease through appropriate symptom management, communication between medical specialists and the patient and his family, as well as the coordination of care. Many palliative care units struggle with low incomes from the National Health Fund (NHF), which causes serious economic problems. The aim of the study was to estimate of direct and administrative costs of care and the actual cost per patient per day in selected palliative care units and comparison of the results to the valuation of the NHF. Material and methods The study of the costs of hospitalization of 175 patients was conducted prospectively in five palliative care units (PCUs). The costs directly associated with care were recorded on the specially prepared forms in each unit and also personnel and administrative costs provided by the accounting departments. Results The total costs of analyzed units amounted to 209 002 EUR (898 712 PLN), while the payment for palliative care services from the NHF amounted to 126 010 EUR (541 844 PLN), which accounted for only 60% of the costs incurred by the units. The average cost per person per day of hospitalization, calculated according to the actual duration of hospitalization in the unit, was 83 EUR (357 PLN), and the average payment from the NHF was 52.8 EUR (227 PLN). Underpayment per person per day was approximately 29.2 EUR (125 PLN). Conclusions The study showed a significant difference between the actual cost of palliative care units and the level of refund from the NHF. Based on the analysis of costs, the application has been submitted to the NHF to change the reimbursement amount of palliative care services in 2013. PMID:27186194
Hui, David; Bruera, Eduardo
Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, illness understanding, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We also discuss how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available.
Hui, David; Bruera, Eduardo
Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We end by discussing how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available. PMID:26598947
Governmental policies recommend the palliative care at home for cancer patients. However, there are some barriers to discharge cancer patients from the hospital who want to receive end-of-life care at their homes. Anesthesiologists whose main job is to perform general anesthesia in the operating theater usually have little contact with general practitioners giving community palliative care. So it is important to communicate each other to make opportunities to discuss an organized system and care plan for these patients, and to improve information transfer.
Ronaldson, Susan; Hayes, Lillian; Aggar, Christina; Green, Jennifer; Carey, Michele
To investigate spiritual caring by palliative care nurses and to describe their interventions. Spirituality and spiritual caring are recognised as integral components of holistic nursing. Qualitative data captured on a questionnaire were analysed thematically ( Braun and Clarke, 2006 ). The study involved forty-two palliative care registered nurses working across seven palliative care services in Sydney, Australia. The research question was: 'What spiritual caring interventions do palliative care nurses use in their practice?' Nurses completed an open-ended questionnaire to identify and interpret their spiritual caring. Three sub-theme categories and four major concepts of spiritual caring. Categories identified are: humanistic, pragmatic and religious interventions; while concepts of spiritual caring are: 'being with', 'listening to', 'facilitation of' and 'engaging in'. A conceptual understanding of spiritual caring was identified.
Rassouli, Maryam; Sajjadi, Moosa
Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. © The Author(s) 2014.
Hudson, Peter; Quinn, Karen; O'Hanlon, Brendan; Aranda, Sanchia
Background Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. Methods The guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. Results The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. Conclusion Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined. PMID:18710576
Gray, Alan; Ezzat, Adnan
The increasing life expectancy in Saudi Arabia will be accompanied by an alteration of the patterns of disease similar to that in Western countries. One of these will be cancer, the second leading cause of death in the west at present, where 1:3 people develop cancer during their lifetime and 1:4 die of it. Cancer deaths are rarely easy. The distress particularly the pain it can cause is legendary. Palliative care is the care and study of patients with active progressive far advanced disease, where cure is impossible, the prognosis predictably short, and the focus of care is the patient's quality of life. A Palliative Care Program has been developed at KFSH&RC, since 1991. This has broadened the spectrum of health services available to cancer patients. Palliative care needs to be more widely available in the kingdom to relieve an important cause of human suffering. PMID:23008572
Robinson, Maisha T.; Holloway, Robert G.
Abstract Purpose of review: To present current knowledge and recommendations regarding communication tasks and practice approaches for neurologists as they practice primary palliative care, including discussing serious news, managing symptoms, aligning treatment with patient preferences, introducing hospice/terminal care, and using the multiprofessional approach. Recent findings: Neurologists receive little formal palliative care training yet often need to discuss prognosis in serious illness, manage intractable symptoms in chronic progressive disease, and alleviate suffering for patients and their families. Because patients with neurologic disorders often have major cognitive impairment, physical impairment, or both, with an uncertain prognosis, their palliative care needs are particularly challenging and they remain largely uncharacterized and often unmanaged. Summary: We provide an overview of neuropalliative care as a fundamental skill set for all neurologists. PMID:26918202
May, Peter; Hynes, Geralyn; McCallion, Philip; Payne, Sheila; Larkin, Philip; McCarron, Mary
Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the 'policy analysis triangle' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.
Ezer, Tamar; Marston, Joan
A fundamental and neglected part of the global response to HIV and AIDS, palliative care is also a critical entry-point for legal services. As Tamar Ezer and Joan Marston write, providing legal services to patients in palliative care can both protect human rights and improve health outcomes.
To explore an interdisciplinary team's perceptions of families' needs and experiences surrounding terminal restlessness. A qualitative exploratory design using two focus groups. Participants were members of an interdisciplinary palliative care team working in a palliative care unit in a university teaching hospital in Israel. The palliative care team confronted several challenging and stressful issues surrounding the management of terminal restlessness that influenced their treatment decisions and relationships with families. Four themes reflected the participants' perceptions and experiences: suffering, maintaining control, feelings of ambivalence and valuing communication to reduce conflict. Findings suggest the need for comprehensive treatment plans to meet the special supportive and information needs of these families, specific supportive strategies for the professional caregivers and further studies to develop ethical criteria and evidence-based guidelines for the use of sedation in the management of terminal restlessness.
Terui, Takeshi; Koike, Kazuhiko; Hirayama, Yasuo; Kusakabe, Toshiro; Ono, Kaoru; Mihara, Hiroyoshi; Kobayashi, Kenji; Takahashi, Yuji; Nakajima, Nobuhisa; Kato, Junji; Ishitani, Kunihiko
More than 30 years have passed since the introduction of the concept of palliative care in cancer care in Japan. However, the majority of the estimated three million cancer patients in Japan do not receive palliative care. Higashi Sapporo Hospital was established in 1983 as a hospital specialized in cancer care. The palliative care unit of our hospital currently consists of 58 beds. Our hospital is one of the largest hospitals in Japan in terms of the number of palliative care beds. On admission to our hospital, all patients are evaluated for palliative care by a multi-disciplinary team and some patients who undergo anticancer therapy receive palliative care when necessary. There are about 65 patients on average (28.3%) who are receiving only palliative care. In 2011, 793 patients died of cancer while admitted at our hospital. This number of cancer deaths accounted for 15% of the 5,324 cancer deaths in Sapporo City in the same year. Our hospital has played an active role according to the philosophy that "palliative cancer care is part of cancer medical care". We here report the current status of the contribution of our hospital to overcoming problems in palliative care and cancer care in Japan.
End-of-life care is an integral part of neurology practice, and neuropalliative medicine is an emerging neurology subspeciality. This begins with serious illness communication as a protocol-based process that depends on an evaluation of patient autonomy and accurate prognostication. Communication needs vary between chronic, life-limiting neurologic illnesses and acute brain injury. In an ideal situation, the patient's wishes are spelled out in advance care plans and living wills, and surrogates have only limited choices for implementation. Palliative care prepares for decline and death as an expected outcome and focuses on improving the quality of life for both the patients and their caregivers. In the Intensive Care Unit, this may require clarity on withholding and withdrawal of treatment. In all locations of care, the emphasis is on symptom control. Neurologists are the quintessential physicians, and our “dharma” is best served by empathetically bringing our technical knowledge and communication skills into easing this final transition for our patients and their families to the best of our ability. PMID:27891024
Saylor, Jennifer; Vernoony, Stephanie; Selekman, Janice; Cowperthwait, Amy
This quasi-experimental pretest-posttest study measured self-efficacy, attitudes toward physician-nurse collaboration, and interprofessional competencies as outcomes of a palliative care simulation. Based on experience level, teams of participants, 1 consisting of nursing/medical students and the other of nursing/medical health care professionals, completed a palliative care simulation as part of their education. Self-efficacy and attitudes toward physician-nurse collaboration were measured before and after simulation. Interprofessional competency was measured during the simulation. The results revealed a significant improvement in the previously mentioned measures, and interprofessional competency scores varied by profession and evaluator.
Vincent, I; D'Hérouville, D; Moulin, P; Bugler, C; Fraval, J; Mallet, D; Salamagne, M H; Vildé, J L; Jodelet, D; Leport, C
This prospective multidisciplinary survey started in October 1994. The survey assessed the modalities of care of hospitalized patients with advanced AIDS in an Infectious and Tropical Diseases Unit with regards to the practices of palliative care in a Palliative Care Unit. Seventy-eight (78) AIDS patients with CD4 < or = 30/mm3 who had 102 consecutive hospitalizations were recruited. Types (symptomatic or curative) and number of drugs administered to the patients, as well as biological and radiological investigations performed were recorded. Symptoms were concomitantly assessed on a weekly basis by self-evaluation of the patients themselves and by physicians. The results showed that the practices of care were different in the two units according to the specific goals and norms of each unit. A higher density of care was delivered at the Infectious and Tropical Diseases Unit. Symptoms assessed by both patients and physicians were underestimated by physicians in frequency and in intensity. In conclusion, an integrated approach including objective and subjective criteria should enable a better adjustment of the palliative and curative therapeutic strategies in advanced AIDS. These would concomitantly take into account the wishes of the patient and the goals regarding care in the unit where the patient is hospitalized.
Mantz, M; Crandall, J M
With the rising age of the population, hospital cutbacks, and increased attention to home-based care for the dying, the community can expect to experience more intense care situations and a greater potential for palliative care crises developing in the home setting. Whether the crisis is precipitated by hemorrhage, severe uncontrolled pain, or agitation, the demands placed on the family unit and careprovider can be phenomenal. Only with a greater awareness of the difficulties encountered in the home setting can the community begin to respond to the needs of the family in crisis. An open-question survey regarding palliative care crises in the community was conducted among community visiting RNs, home care case managers, and palliative outreach clinicians in southwestern Ontario, The objectives were: 1) to determine the pattern of events that precipitated a crisis; 2) to understand how crises were managed; 3) to identify barriers to effective crisis management; 4) to investigate the impact on the family unit and careprovider. Participants were also asked to list the essential resources they needed to deal effectively with a crisis situation. This paper highlights the results of the survey and suggests implications for the future direction of palliative care in the home.
Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith
Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.
Strauss, Gerald; Nelson, Barbara J.
Interviews with 6 of 10 Veterans' Affairs programs offering postdoctoral fellowships in geropsychology indicated that only 30% included palliative care or hospice training, despite the fact that the veteran population is likely to have an increasing need for terminal illness care. (SK)
Bégnon, Julie; Vigneron, Sylvie
A team has studied the impact of laughter in palliative care. For the majority of caregivers, laughter is perceived as a complementary tool for supporting patients, but many are reluctant to use it. Patients, for their part, are receptive to it. Used in the correct doses, laughter can enrich care.
Strauss, Gerald; Nelson, Barbara J.
Interviews with 6 of 10 Veterans' Affairs programs offering postdoctoral fellowships in geropsychology indicated that only 30% included palliative care or hospice training, despite the fact that the veteran population is likely to have an increasing need for terminal illness care. (SK)
The implementation of paediatric palliative care aims to fulfil objectives regarding the support provided for the child and his/her family in all aspects of care. It is guided by regulations and recommendations relating to pain relief, quality of life and support for families.
Morrison, R Sean; Meier, Diane E
families must know to request palliative care, medical professionals must have the knowledge and skills to provide palliative care, and hospitals and other healthcare institutions must be equipped to deliver and support palliative care services. The Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC) are accomplishing this three-part mission by working in partnership to: 1) Develop research to serve as the knowledge base for quality clinical care and the foundation on which to build palliative care programs and systems; 2) Disseminate this knowledge to patients, families, professionals, and institutions throughout the United States and ensure that it is integrated within mainstream healthcare; and 3) Influence and collaborate with policy makers , regulatory bodies, and federal funding agencies to ensure that the healthcare infrastructure supports the continued growth and development of palliative care.
Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Miyazaki, Tamana; Shoji, Ayaka; Chiba, Yurika; Tsuneto, Satoru; Shima, Yasuo
This study aimed to clarify perspectives of bereaved family members regarding opioids and compare perceptions before admission and after bereavement. A cross-sectional questionnaire survey for bereaved family members in 100 inpatient palliative care units was administered. Participants were 297 bereaved family members of patients who used opioids. Many bereaved family members had misconceptions of opioids before admission. There was improvement after bereavement, but understanding remained low. Respondents less than 65 years old showed significantly greater decreases in misconceptions regarding opioids compared to older generations, after bereavement. Bereaved family members who were misinformed about opioids by physicians were significantly more likely to have misconceptions about opioids. Educational interventions for physicians are needed to ensure that they offer correct information to the general population.
Jünger, S; Pestinger, M; Elsner, F; Krumm, N; Radbruch, L
Team work is considered a central component of palliative care. Within this comparatively young field of medicine, the emergence of new institutions (eg, palliative care units) highlights the challenge of establishing a completely new team. This study focuses on the factors, which enhance both the success and outcome criteria of good team work from the perception of team members in a palliative care unit. The palliative care team at the University Hospital of Aachen (n = 19) was interviewed 1 year after the unit's startup by the means of semistructured interviews. Interview texts were analysed using qualitative content analysis. Factors crucial to cooperation in the team members' views were close communication, team philosophy, good interpersonal relationships, high team commitment, autonomy and the ability to deal with death and dying. Moreover, close communication was by far the most frequently mentioned criteria for cooperation. Team performance, good coordination of workflow and mutual trust underpin the evaluation of efficient team work. Inefficient team work is associated with the absence of clear goals, tasks and role delegation, as well as a lack of team commitment. In a new team, close communication is particularly important for staff as they reorientate themselves to the dynamics of a new peer group. The results confirm the overwhelming importance of clarity, commitment and close, positive exchange among team members for successful team work.
Dickinson, George E.
Medical and nursing schools in the United States have traditionally had a limited emphasis on end-of-life care. The present study is a comparison of these 2 professional programs' current offerings on death education. Data were gathered via a mailed survey from the 122 medical schools in 2005 and the 580 baccalaureate nursing programs in 2006.…
Strand, Jacob J; Kamdar, Mihir M; Carey, Elise C
With a focus on improving quality of life for patients, palliative care is a rapidly growing medical subspecialty focusing on the care of patients with serious illness. Basic symptom management, discussions of prognostic understanding, and eliciting treatment goals are essential pieces in the practice of nearly all physicians. Nonetheless, many complex patients with a serious, life-threatening illness benefit from consultation with palliative care specialists, who are trained and experienced in complex symptom management and challenging communication interactions, including medical decision making and aligning goals of care. This article discusses the changing role of modern palliative care, addresses common misconceptions, and presents an argument for early integration of palliative care in the treatment of patients dealing with serious illness. Copyright © 2013 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.
Weaver, Meaghann S; Heinze, Katherine E; Kelly, Katherine P; Wiener, Lori; Casey, Robert L; Bell, Cynthia J; Wolfe, Joanne; Garee, Amy M; Watson, Anne; Hinds, Pamela S
The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members.
Weaver, Meaghann S.; Heinze, Katherine E.; Kelly, Katherine P.; Wiener, Lori; Casey, Robert L.; Bell, Cynthia J.; Wolfe, Joanne; Garee, Amy M.; Watson, Anne; Hinds, Pamela S.
The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members. PMID:26700928
Perri, Giulia-Anna; Yeung, Herman; Green, Yoel; Bezant, Abby; Lee, Carman; Berall, Anna; Karuza, Jurgis; Khosravani, Houman
Palliative care is often initiated late for patients with end stage liver disease (ESLD) with pain being a common morbidity that is under-treated throughout the disease trajectory. When admitted to a palliative care unit (PCU), nurses play a pivotal role and must be highly informed to ensure effective pain management. The aim of this study is to determine the baseline level of knowledge and attitudes of PCU nurses regarding pain management in patients with ESLD. A descriptive, cross-sectional self-administered survey design was used for this study. The sample comprised 35 PCU nurses working at a continuing chronic care facility in Toronto, Ontario, Canada. Data on the knowledge and attitudes of the nurses regarding pain management in patients with ESLD, was obtained using a modified version of the "Nurses Knowledge and Attitudes Survey Regarding Pain" (NKASRP) tool. Thirty-one PCU nurses were included for the analysis, giving a response rate of 89%. The mean total percentage score for the nurses on the modified version of the NKASRP was 72%. Only 26% of the nurse participants obtained a passing score of 80% or greater. There were no significant differences in mean total scores by age, gender, years of nursing experience or education level. The findings of this study provide important information about the inadequate knowledge and attitude in nurses regarding pain management for patients with ESLD. It is suggested that targeted educational programs and quality improvement initiatives in pain management for patients with ESLD could improve knowledge and attitudes for PCU nurses.
Gaskins, Jessica L
Palliative care is not a term solely used for humans when discussing health care; the term is also used when discussing veterinary patients. Pets are considered part of the family by pet owners, and they have a special relationship that only another pet owner can fully understand. This article discusses some of the healthcare problems that affect pets (and their owners), statistics on the most commonly used medications for veterinary patients, quality of life, and discussions on the veterinary pharmacist-owner-palliative pet relationship and how compounding pharmacists can prepare patient-specific medications.
Codeine is designated as one of the essential medicines of palliative care for symptoms such as pain and diarrhea. Essential drugs for palliative care are drugs that are effective for the treatment of common symptoms in palliative medicine, easily available, and are affordable. Codeine is recommended for the management of mild to moderate pain and is available as a combination product or as a stand-alone opioid. It is a prodrug and exhibits an affinity to micro-opioid receptors 200 times lower than morphine. Codeine is metabolized in the liver to inactive metabolites, which account for 90 percent of the transformed product, and morphine, which accounts for 10 percent of the transformed product and provides the main analgesic effect. The production of morphine is dependent on cytochrome oxidase 2D6 enzyme activity, which may not be fully active in some populations. The purpose of this review is to examine the efficacy of codeine for common symptoms encountered in palliative medicine, which has led to its designation as an essential medicine for palliative care.
Kettler, Dietrich; Nauck, Friedemann
To summarize various developments related to palliative care, especially related to ethical issues. To emphasize the involvement of anaesthesiology in palliative care. Euthanasia has been legalized in Belgium, the Netherlands and Luxemburg (BENELUX countries). A group from Belgium has now proposed using euthanasia in patients in whom palliative care has been deemed 'futile'. This practice of so-called 'integral palliative care' is strongly rejected in a study from Germany. Palliative sedation is an ethically different approach with no intention to kill the patient. The European Association of Palliative Care has proposed a framework for individual guidelines for palliative sedation. The important role of anaesthesiology in palliative care teams is emphasized. Palliative care is a powerful approach to patient care during terminal illness, emphasizing quality of life even if it may shorten the length of life. Traditionally, palliative care has been contrasted with active euthanasia, but a group from Belgium has challenged this concept recently, advocating the use of euthanasia in circumstances in which palliative care has become 'futile'. This new approach led to strong reactions by a group from Germany, stressing that killing on demand in palliative care should under no circumstances be justified. In contrast, palliative sedation is a common method in special cases to reduce intractable symptoms. A new framework for palliative sedation produced by the European Association of Palliative Care may encourage institutions to set up their own palliative sedation guidelines. Worldwide, anaesthesiologists have a significant role in palliative care due to their unique complex expertise mainly in pain therapy and including transient sedation of patients.
Lilley, Elizabeth J; Cooper, Zara; Schwarze, Margaret L; Mosenthal, Anne C
To describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field. Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care. The National Institutes of Health and the National Palliative Care Research Center convened researchers from several medical subspecialties to develop a national agenda for palliative care research. The surgeon work group reviewed the existing surgical literature to identify critical knowledge gaps. To date, evidence to support the role of palliative care in surgical practice is sparse and palliative care research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of palliative care. Priorities for future research on palliative care in surgery include: 1) measuring outcomes that matter to patients, 2) communication and decision making, and 3) delivery of palliative care to surgical patients. Surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients' physical, emotional, social and spiritual well-being and quality of life. We propose a research agenda to address major gaps in the literature and provide a road map for future investigation.
General Accounting Office, Washington, DC. Health, Education, and Human Services Div.
Currently, the extent of palliative care instruction varies considerably across and within the three major phases of the physician education and training process. This analysis of current educational efforts in palliative care is based on information obtained from a survey conducted of all United States medical schools, surveys conducted on United…
Viney, Linda L.; And Others
Compared palliative care staff with staff from burn and neonatal units and with mature age general nursing trainees at end of training. Found that palliative care staff expressed better quality of life, in terms of significantly less anxiety and depression, as well as more good feelings than other staff groups. (Author/NB)
Viney, Linda L.; And Others
Compared palliative care staff with staff from burn and neonatal units and with mature age general nursing trainees at end of training. Found that palliative care staff expressed better quality of life, in terms of significantly less anxiety and depression, as well as more good feelings than other staff groups. (Author/NB)
Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz
Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources. PMID:27226663
Rushton, Cynda Hylton
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges their limited life expectancy and severity of illness. Two case studies of children illustrate different approaches-one that aggressively applies all possible technologies to maximize chances of survival and another that focuses on the patient's overall quality of life and on healing rather than curing. The cases highlight characteristics of an integrated model of palliative care to address clinical, moral, and ethical uncertainties. This model integrates being with doing, provides for developing attunement and presence as capacities for being with children and their parents, and addresses challenges in the healthcare environment. Strategies for integrating palliative care into pediatric practice include listening, fostering respect for the child and parents across the organization, nurturing collaborative connections, managing uncertainty, tolerating ambiguity, making peace with conflict, and committing to self-care. Every pediatric nurse can play a role in making the vision of palliative care a reality integrated into the fabric of pediatric practice.
Alfaya Góngora, Maria Del Mar; Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz
To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.
Smith, Alexander K; Thai, Julie N; Bakitas, Marie A; Meier, Diane E; Spragens, Lynn H; Temel, Jennifer S; Weissman, David E; Rabow, Michael W
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
... HUMAN SERVICES National Institutes of Health Submission for OMB Review; Comment Request: Palliative Care... requested in writing. Proposed Collection: Palliative Care: Conversations Matter Evaluation, -0925-New... Information Collection: NINR developed Palliative Care: Conversations Matter, a pediatric palliative...
As a result of limited access to antiretroviral treatment, many South Africans die yearly of AIDS. It is important that the end-of-life needs of these people be met. This article examines the major challenges involved in providing quality end-of-life care to people with AIDS in South Africa. Published reports are reviewed, as is the author's experience living and working in KwaZulu-Natal, South Africa. The issues discussed include the nature of the South African health care system, with emphasis on the scarcity of palliative care resources for AIDS patients, ineffective control of pain, models of care such as the integrated community-based home care model that relies heavily on community caregivers to meet the needs of people dying of AIDS, the living conditions of AIDS patients and their families, and AIDS-related stigma. Broad recommendations are presented for improving palliative care services for people with AIDS in the South African context.
Skilbeck, Julie K; Payne, Sheila
The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.
Thai, Julie N.; Bakitas, Marie A.; Meier, Diane E.; Spragens, Lynn H.; Temel, Jennifer S.; Weissman, David E.; Rabow, Michael W.
Abstract Background 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. Objective Our objective was to obtain in-depth information about palliative care clinics. Methods 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. Results 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). Conclusions Once established, outpatient palliative care practices
Sandsdalen, Tuva; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Wilde-Larsson, Bodil
Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was
Henner, Natalia; Boss, Renee D
Neonatologists receive highly varied and largely inadequate training to acquire and maintain communication and palliative care skills. Neonatology fellows often need to give distressing news to families and frequently face unique communication challenges. While several approaches to teaching these skills exist, practice opportunities through simulation and role play will likely provide the most effective learning.
Cossío-Díaz, José Ramón; Franco González-Salas, José Fernando; Kershenobich-Stalnikowitz, David; Goslinga-Remírez, Lorena; Montes de Oca-Arboleya, Rodrigo; Torres-Morán, Laura Estela; Calderón-Vidal, Mariana
This article analyzes the Mexican regulation on palliative care and its relationship with the public debate on assisted death or suicide. This paper focuses on the rights that people with incurable diseases have, given the current contents of the General Health Statute and other applicable rules. Its main purpose is to activate the public debate on these matters.
... can care start? • Receive services, like art or music therapy • Find ways to relax and play Palliative ... Nurses • Child life specialists • Respite providers • Art and music therapists • Chaplains • Case managers • Counselors • Home health aides • ...
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
Government policy is a fundamental component of initiating change to improve the provision of palliative care at a national level. The World Health Organisation's recognition of palliative care as a basic human right has seen many countries worldwide develop national policy in palliative and end of life care. There is increasing debate about what form comprehensive palliative care services should take, particularly in relation to the balance between acute and community based services. It is therefore timely to review how national policy positions the current and future role of the acute hospital in palliative care provision. The aim of this exploratory review is to identify the role envisaged for the acute hospital in palliative and end of life care provision in five countries with an 'advanced' level of integration. Countries were identified using the Global Atlas of Palliative Care. Policies were accessed through internet searching of government websites between October and December 2014. Using a process of thematic analysis key themes related to palliative care in hospital were identified. Policies from Switzerland, England, Singapore, Australia and Ireland were analysed for recurring themes. Three themes were identified: preferences for place of care and place of death outside the hospital setting, unnecessary or avoidable hospital admissions, and quality of care in hospital. No policy focused upon exploring how palliative care could be improved in the hospital setting or indeed what role the hospital may have in the provision of palliative care. Palliative care policy in five countries with 'advanced' levels of palliative care integration focuses on solving the 'problems' associated with hospital as a place of palliative care and death. No positive role for hospitals in palliative care provision is envisaged. Given the rapidly increasing population of people requiring palliative care, and emerging evidence that patients themselves report benefits of hospital
Mizuno, Atsushi; Miyashita, Mitsunori; Hayashi, Akitoshi; Kawai, Fujimi; Niwa, Koichiro; Utsunomiya, Akemi; Kohsaka, Shun; Kohno, Takashi; Yamamoto, Takeshi; Takayama, Morimasa; Anzai, Toshihisa
In spite of the increasing interest in palliative care for heart disease, data on the detailed methods of palliative care and its efficacy specifically in heart disease are still lacking. A structured PubMed literature review revealed no quality indicators of palliative care in heart disease. Therefore, we performed a narrative overview of the potential quality indicators in heart disease by reviewing previous literature concerning quality indicators in cancer patients. We summarize seven potential categories of quality indicators in heart disease: (1) presence and availability of a palliative care unit, palliative care team, and outpatient palliative care; (2) human resources such as number of skilled staff; (3) infrastructure; (4) presence and frequency of documentation or family survey; (5) patient-reported outcome measure (PROM) data and disease-specific patient quality of life such as The Kansas City Cardiomyopathy Questionnaire (KCCQ); (6) questionnaires and interviews about the quality of palliative care after death, including bereaved family surveys; and (7) admission-related outcomes such as place of death and intensive care unit length of stay. Although detailed measurements of palliative care quality have not been validated in heart disease, many indicators developed in cancer patients might also be applicable to heart disease. This new categorization might be useful to determine quality indicators in heart disease patients. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.
Downing, Robin; Adams, Valarie Hajek; McClenaghan, Ann P
Hygiene, comfort, and safety during pet palliative care and hospice are usually straightforward. The veterinary health care team must coordinate care to ensure that the pet and the family are fully informed and engaged in the process. End-of-life issues, euthanasia, and death are typically not everyday concerns for the pet owner. Pet owners and veterinary patients rely on the veterinary health care team to help create the structure within which the pet will die. The veterinary team can give the family-pet unit the gift of structure and multifaceted comfort. The veterinary profession must take seriously this unique niche of care.
Dumanovsky, Tamara; Augustin, Rachel; Rogers, Maggie; Lettang, Katrina; Meier, Diane E.
Abstract Background: Palliative care is expanding rapidly in the United States. Objective: To examine variation in access to hospital palliative care. Methods: Data were obtained from the American Hospital Association (AHA) Annual Surveys™ for Fiscal Years 2012 and 2013, the National Palliative Care Registry™, the Dartmouth Atlas of Healthcare, the American Census Bureau's American Community Survey (ACS), web searches, and telephone interviews of hospital administrators and program directors. Multivariable logistic regression was used to examine predictors of hospital palliative care programs. Results: Sixty-seven percent of hospitals with 50 or more total facility beds reported a palliative care program. Institutional characteristics were strongly associated with the presence of a hospital palliative care program. Ninety percent of hospitals with 300 beds or more were found to have palliative care programs as compared to 56% of hospitals with fewer than 300 beds. Tax status was also a significant predictor. Not-for-profit hospitals and public hospitals were, respectively, 4.8 times and 7.1 times more likely to have a palliative care program as compared to for-profit hospitals. Palliative care penetration was highest in the New England (88% of hospitals), Pacific (77% of hospitals), and mid-Atlantic (77% of hospitals) states and lowest in the west south central (43% of hospitals) and east south central (42% of hospitals) states. Conclusions: This study demonstrates continued steady growth in the number of hospital palliative care programs in the United States, with almost universal access to services in large U.S. hospitals and academic medical centers. Nevertheless access to palliative care remains uneven and depends on accidents of geography and hospital ownership. PMID:26417923
Dumanovsky, Tamara; Augustin, Rachel; Rogers, Maggie; Lettang, Katrina; Meier, Diane E; Morrison, R Sean
Palliative care is expanding rapidly in the United States. To examine variation in access to hospital palliative care. Data were obtained from the American Hospital Association (AHA) Annual Surveys™ for Fiscal Years 2012 and 2013, the National Palliative Care Registry™, the Dartmouth Atlas of Healthcare, the American Census Bureau's American Community Survey (ACS), web searches, and telephone interviews of hospital administrators and program directors. Multivariable logistic regression was used to examine predictors of hospital palliative care programs. Sixty-seven percent of hospitals with 50 or more total facility beds reported a palliative care program. Institutional characteristics were strongly associated with the presence of a hospital palliative care program. Ninety percent of hospitals with 300 beds or more were found to have palliative care programs as compared to 56% of hospitals with fewer than 300 beds. Tax status was also a significant predictor. Not-for-profit hospitals and public hospitals were, respectively, 4.8 times and 7.1 times more likely to have a palliative care program as compared to for-profit hospitals. Palliative care penetration was highest in the New England (88% of hospitals), Pacific (77% of hospitals), and mid-Atlantic (77% of hospitals) states and lowest in the west south central (43% of hospitals) and east south central (42% of hospitals) states. This study demonstrates continued steady growth in the number of hospital palliative care programs in the United States, with almost universal access to services in large U.S. hospitals and academic medical centers. Nevertheless access to palliative care remains uneven and depends on accidents of geography and hospital ownership.
Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally
A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration. PMID:27930401
Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu
We conducted home care and home palliative care from the department of home care. We provided home care services to 190 patients(105 men, 85 women)in October 2013. Their average age was 78.7(range: 32-102)years old, and home care had been underway from 1 day to 8 years, 10 months. Among all participants, 168(88.4%)suffered from malignant diseases, 168 patients had died, and over half of deceased patients(88 out of 168)had died at home. We used opioids for control of cancer pain, carried out home parenteral nutrition(HPN), home enteral nutrition(HEN), percutaneous endoscopic gastrostomy( PEG), and removed pleural effusion and ascites during home care. In order to facilitate the practice of palliative care by the palliative care team, which consists of various medical staff in the hospital, we are giving high priority to education and enlightenment in the hospital. To provide enlightenment, education, and cooperation between regional home care and home palliative care, we are also conducting educational lectures in the regional party of the Iwaki city medical associate, and providing combined educational-medical training for home care and home palliative care by various medical staff.
Ladwig, Susan; Robb, Jessica; Kelly, Adam; Nielsen, Eric; Quill, Timothy E.
Abstract Objective To determine the pattern and characteristics of palliative care (PC) consultations in patients with stroke and compare them with the characteristics of nonstroke consultations. Methods The palliative care program at Strong Memorial Hospital (SMH) was established in October 2001. SMH is a 765-bed academic medical center with approximately 38,000 discharges. For each consult from 2005 to 2007, we collected demographic, clinical, and service-related information. We explored similarities and differences in patients with different types of stroke, including patients with ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, and subdural hematoma. In addition, we compared these data to the nonstroke patients who had a palliative care consultation during the same time period. Results Over the 3-year period from 2005 to 2007, there were a total of 101 consultations in patients with stroke (6.3% of all PC consultations). Of the 101 consultations, 31 were in patients with ischemic stroke, 26 in patients with intracerebral hemorrhage, 30 in patients with subarachnoid hemorrhage, and 14 in patients with subdural hematoma. Patients with stroke who had a PC consult were more functionally impaired, less likely to have capacity, more likely to die in the hospital, and to have fewer traditional symptom burdens than other common diagnoses seen on the PC consultation service. The most common trajectory to death was withdrawal of mechanical ventilation, but varied by type of stroke. Common treatments negotiated in these consultations included mechanical ventilation, artificial nutrition, tracheostomy, and less likely antibiobics, intravenous fluids, and various neurosurgical procedures. Conclusions Patients with stroke are a common diagnosis seen on an inpatient palliative care consult service. Each stroke type represents patients with potentially distinct palliative care needs. PMID:20384501
Kavalieratos, Dio; Corbelli, Jennifer; Zhang, Di; Dionne-Odom, J. Nicholas; Ernecoff, Natalie C.; Hanmer, Janel; Hoydich, Zachariah P.; Ikejiani, Dara Z.; Klein-Fedyshin, Michele; Zimmermann, Camilla; Morton, Sally C.; Arnold, Robert M.; Heller, Lucas; Schenker, Yael
IMPORTANCE The use of palliative care programs and the number of trials assessing their effectiveness have increased. OBJECTIVE To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. DATA SOURCES MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. STUDY SELECTION Randomized clinical trials of palliative care interventions in adults with life-limiting illness. DATA EXTRACTION AND SYNTHESIS Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy–palliative care scale (FACIT-Pal) instrument (range, 0–184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0–90 [best-worst]; MCID, 5.7 points). MAIN OUTCOMES AND MEASURES Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. RESULTS Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95%CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, −0.66; 95%CI, −1.25 to −0.07; ESAS mean difference, −10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated
Clark, D; Malson, H; Small, N; Daniel, T; Mallett, K
A key element within the programme of reform introduced into the UK National Health Service in the 1990s has been the concept of health needs assessment, which must be undertaken by health care purchasers as a guide to the planning process. As part of a wide-ranging study of the impact of the NHS reforms on hospices and specialist palliative care services, providers' perceptions of needs assessment for palliative care were examined, including the extent to which needs assessments had been carried out in local districts, together with the implications. The study comprised two key elements. In spring 1995 a postal survey was conducted among all UK hospices and specialist palliative care in-patient units (n = 203) eliciting factual information concerning needs assessment and contracting, together with perceptions and evaluations of the local impact of the NHS reforms. A total of 128 (63 per cent) questionnaires was completed and returned. In addition to the survey, 12 case studies were conducted with a stratified random sample of NHS, independent and large or small hospices and specialist palliative care units. Each of the 12 case study sites was visited by a member of the research team, who conducted interviews with senior staff and analysed financial, planning and management data. Thus the survey allowed a wide analysis of the impact of the NHS reforms, which was enhanced by the more in-depth qualitative data gathered from the case studies. In the survey 49 per cent of those responding reported that their main purchaser had conducted a needs assessment for palliative care in the last five years. Palliative care needs assessment was seen as valuable by providers: 73 per cent considered it very important and 28 per cent of hospices had gone so far as to request a needs assessment from their health authority. In an open-ended question seeking views on the impact of health needs assessment, 66 per cent of those responding (71/107) stated that the impact had been or
Ganzel, Barbara L
This review highlights the need to integrate trauma-informed practices into hospice and palliative care. The pervasiveness of psychological trauma exposure has been established in the general population and among the elderly adults. Moreover, there is emerging evidence for multiple additional opportunities for exposure to psychological trauma at or near the end of life. For example, many people experience intensive medical interventions prior to their admission to hospice and/or palliative care, and there is increasing recognition that these interventions may be traumatic. These and related opportunities for trauma exposure may combine synergistically at the end of life, particularly in the presence of pain, anxiety, delirium, dementia, or ordinary old age. This, in turn, can negatively affect patient mental health, well-being, behavior, and reported experience of pain. This review closes with suggestions for future research and a call for universal assessment of psychological trauma history and symptoms in hospice and palliative care patients, along with the development of palliative trauma intervention strategies appropriate to these populations. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: email@example.com.
Edwards, Asher; Nam, Samuel
As the baby boomer generation ages, the need for palliative care services will be paramount and yet training for palliative care physicians is currently inadequate to meet the current palliative care needs. Nonspecialty-trained physicians will need to supplement the gap between supply and demand. Yet, no uniform guidelines exist for the training of internal medicine residents in palliative care. To our knowledge, no systematic study has been performed to evaluate how internal medicine residencies currently integrate palliative care into their training. In this study, we surveyed 338 Accreditation Council for Graduate Medical Education-accredited internal medicine program directors. We queried how palliative care was integrated into their training programs. The vast majority of respondents felt that palliative care training was "very important" (87.5%) and 75.9% of respondents offered some kind of palliative care rotation, often with a multidisciplinary approach. Moving forward, we are hopeful that the data provided from our survey will act as a launching point for more formal investigations into palliative care education for internal medicine residents. Concurrently, policy makers should aid in palliative care instruction by formalizing required palliative care training for internal medicine residents.
Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R
While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.
Coulibaly, J Didi-Kouko; Datie, A-M; Binlin-Dadie, R; Kouame, I; N'guessan, Zc; Barouan, M-C; Koffi, E; Coulibaly, I; Mensah, J; Yenou, H Memain; Dedomey, E; Echimane, Ka; Plo, Kj; Kouassi, B
Ivory Coast adhered to the strategy of the primary cares of health whose leading principles served basis to the definition of the National politics of sanitary development, exposed in the National plan of sanitary development 1996-2005. The improvement of the quality of the cares is the main objective of this plan. The attack of this objective cannot make itself without the hold in account of the palliative cares that are a component of the cares for the patients affected by chronic and incurable affections, since the diagnosis until the death and even after the death. Conscious of the necessity to develop the palliative cares to improve the quality of life of the patients and their families, the ministry in charge of health, in collaboration with the partners to the development, initiated a project of development of the palliative care in Ivory Coast. It is about an innovating gait in Ivory Coast concerning politics of health. This work has for goal to present the big lines and the setting in which this politics has been put in place.
Cruz-Oliver, Dulce M; Bernacki, Rachelle; Cooper, Zara; Grudzen, Corita; Izumi, Seiko; Lafond, Deborah; Lam, Daniel; LeBlanc, Thomas W; Tjia, Jennifer; Walter, Jennifer
There is a pressing workforce shortage and leadership scarcity in palliative care to adequately meet the demands of individuals with serious illness and their families. To address this gap, the Cambia Health Foundation launched its Sojourns Scholars Leadership Program in 2014, an initiative designed to identify, cultivate, and advance the next generation of palliative care leaders. This report intends to summarize the second cohort of Sojourns Scholars' projects and their reflection on their leadership needs. This report summarizes the second cohort of sojourns scholars' project and their reflection on leadership needs. After providing a written reflection on their own projects, the second cohort participated in a group interview (fireside chat) to elicit their perspectives on barriers and facilitators in providing palliative care, issues facing leadership in palliative care in the United States, and lessons from personal and professional growth as leaders in palliative care. They analyzed the transcript of the group interview using qualitative content analysis methodology. Three themes emerged from descriptions of the scholars' project experience: challenges in palliative care practice, leadership strategies in palliative care, and three lessons learned to be a leader were identified. Challenges included perceptions of palliative care, payment and policy, and workforce development. Educating and collaborating with other clinicians and influencing policy change are important strategies used to advance palliative care. Time management, leading team effort, and inspiring others are important skills that promote effectiveness as a leader. Emerging leaders have a unique view of conceptualizing contemporary palliative care and shaping the future. Providing comprehensive, coordinated care that is high quality, patient and family centered, and readily available depends on strong leadership in palliative care. The Cambia Scholars Program represents a unique opportunity.
Palliative care has evolved from end-of-life care following exhaustion of curative therapy to care across the cancer-management continuum. Often initiated concurrently with curative care at the time of diagnosis, palliative care ensures both effective symptom management and the best possible quality of life in four key domains-physical, psychological, social, and spiritual. The significant growth and development of palliative care in the United States is evident in that one in four hospitals now has a palliative care program, palliative medicine is now recognized as an official medical subspecialty by the American Board of Medical Specialties, and national programs offer comprehensive continuing education in palliative care for nurses and physicians. The oncology nurse who provides palliative care does so as part of a multidisciplinary team that includes not only physicians but also can involve chaplains, massage therapists, pharmacists, nutritionists, and other specialists. This article provides resources and reviews and highlights pertinent palliative care issues to guide oncology nurses managing newly diagnosed cancer patients.
McCarthy, Mark; Brajovic, Mina
Introduction Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care. Description The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience. Discussion Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment. Conclusion Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management. PMID:19513178
Labson, Margherita C; Sacco, Michele M; Weissman, David E; Gornet, Betsy; Stuart, Brad
The focus of palliative care is to alleviate pain and suffering for patients, potentially while they concurrently pursue life-prolonging or curative therapy. The potential breadth of palliative care is recognized by the Medicare program, but the Medicare hospice benefit is narrowly defined and limited to care that is focused on comfort and not on cure. Any organization or setting that has been accredited or certified to provide health care may provide palliative care. Home health agencies are highly attuned to patients' need for palliative care, and often provide palliative care for patients who are ineligible for hospice or have chosen not to enroll in it. Two home health-based programs have reported improved patient satisfaction, better utilization of services, and significant cost savings with palliative care. Moving the focus of care from the hospital to the home and community can be achieved with integrated care and can be facilitated by changes in government policy.
Suvarnabhumi, Krishna; Sowanna, Non; Jiraniramai, Surin; Jaturapatporn, Darin; Kanitsap, Nonglak; Soorapanth, Chiroj; Thanaghumtorn, Kanate; Limratana, Napa; Akkayagorn, Lanchasak; Staworn, Dusit; Praditsuwan, Rungnirand; Uengarporn, Naporn; Sirithanawutichai, Teabaluck; Konchalard, Komwudh; Tangsangwornthamma, Chaturon; Vasinanukorn, Mayuree; Phungrassami, Temsak
The Thai Medical School Palliative Care Network conducted this study to establish the current state of palliative care education in Thai medical schools. A questionnaire survey was given to 2 groups that included final year medical students and instructors in 16 Thai medical schools. The questionnaire covered 4 areas related to palliative care education. An insufficient proportion of students (defined as fewer than 60%) learned nonpain symptoms control (50.0%), goal setting and care planning (39.0%), teamwork (38.7%), and pain management (32.7%). Both medical students and instructors reflected that palliative care education was important as it helps to improve quality of care and professional competence. The percentage of students confident to provide palliative care services under supervision of their senior, those able to provide services on their own, and those not confident to provide palliative care services were 57.3%, 33.3%, and 9.4%, respectively. The lack of knowledge in palliative care in students may lower their level of confidence to practice palliative care. In order to prepare students to achieve a basic level of competency in palliative care, each medical school has to carefully put palliative care content into the undergraduate curriculum.
Frontera, Jennifer A; Curtis, J Randall; Nelson, Judith E; Campbell, Margaret; Gabriel, Michelle; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Bassett, Rick; Boss, Renee D; Lustbader, Dana R; Brasel, Karen J; Weiss, Stefanie P; Weissman, David E
To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; to discuss key prognostic aids and their limitations for neurocritical illnesses; to review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; and to describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. A search of PubMed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term "palliative care," "supportive care," "end-of-life care," "withdrawal of life-sustaining therapy," "limitation of life support," "prognosis," or "goals of care" together with "neurocritical care," "neurointensive care," "neurological," "stroke," "subarachnoid hemorrhage," "intracerebral hemorrhage," or "brain injury." We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert advisory board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support will provide clinicians a framework to address decision making at a time of crisis that enhances patient/family autonomy and
Mikan, Fukiko; Wada, Makoto; Yamada, Michiko; Takahashi, Ayaka; Onishi, Hideki; Ishida, Mayumi; Sato, Kazuki; Shimizu, Sachiko; Matoba, Motohiro; Miyashita, Mitsunori
This study was designed to clarify the association between pain and quality of life (QOL) of Japanese patients with cancer using a cancer-specific QOL scale (European Organization for Research and Treatment of Cancer [EORTC] QLQ-C15-PAL) in 3 care settings (outpatient, inpatient, and palliative care units [PCUs]). We examined the above-mentioned purpose for the total of 404 patients. In outpatients, physical, emotional functioning (EF), and global health status/QOL (QL item) were significantly correlated with average pain, and their correlation coefficients were -0.37 to -0.46 (P < .0001). In inpatients, they were -0.33 (P = .006), -0.26 (P = .030), and -0.31 (P = .012). In the PCU patients, they were -0.12 (P = .316), -0.30 (P = .009), and -0.28 (P = .015). Patients' pain had an association with physical and emotional QOL, and the association was smaller in the PCU patients than the others. © The Author(s) 2016.
McCulloch, Renée; Comac, Maggie; Craig, Finella
Palliative care in children has been emerging as a clinical subspecialty of paediatrics for many years. It requires the knowledge and experience of a paediatrician, combined with the skills of a palliative care specialist. Both are essential, as a paediatrician may not have advanced knowledge of palliative care and a palliative care specialist is unlikely to be familiar with the complexity of working with families where the child is the patient. This paper reviews recent literature and discusses advances in the development of palliative care services for children and young people with incurable cancer. It highlights key areas where paediatric palliative care differs from that of adults and outlines the barriers to providing palliation and conducting evidence-based research in children and young people dying from cancer.
As the music therapy profession has developed internationally over the last 25 years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, song-writing and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.
As the spiritual care needs of patients and their loved ones have become an essential component of palliative care, clinicians are being challenged to develop new ways of addressing the spiritual issues that often arise in the palliative care setting. Recent research has given attention to the communication strategies that are effective with patients or their loved ones who report that they are seeking a miraculous physical healing. However, these strategies often assume a unilateral rather than collaborative view of divine intervention. Communication strategies that are effective with unilateral understandings of divine intervention may be contraindicated with those who hold to a collaborative view of divine intervention. Greater attention to language of human-divine interaction along with approaching faith healing as a third modality of treatment are explored as additional interventions.
Gleeson, Aoife; Larkin, Philip; Walsh, Cathal; O'Sullivan, Niamh
Little is known about the impact of methicillin-resistant Staphylococcus aureus in palliative care settings. To date, the clinical impact of methicillin-resistant Staphylococcus aureus in palliative care is unknown. To determine prevalence and incidence of methicillin-resistant Staphylococcus aureus colonisation in a specialist palliative care setting, to identify risk factors for methicillin-resistant Staphylococcus aureus colonisation, to determine the eradication success rate and to determine the impact of methicillin-resistant Staphylococcus aureus on survival. Prospective cohort study. Data were collected for consecutive admissions to an inpatient palliative care service. Patients were screened for methicillin-resistant Staphylococcus aureus colonisation on admission and 1 week post admission. Methicillin-resistant Staphylococcus aureus eradication was attempted in methicillin-resistant Staphylococcus aureus positive patients. Data were collected from 609 admissions for 466 individual patients. Admission screening data were available in 95.5%. Prevalence of methicillin-resistant Staphylococcus aureus colonisation was 11.59% (54 patients). One week incidence of methicillin-resistant Staphylococcus aureus colonisation was 1.2%. Risk factors for methicillin-resistant Staphylococcus aureus colonisation were determined using Chi-Squared test and included high Waterlow score (p < 0.01), high palliative performance scale score (p < 0.01), methicillin-resistant Staphylococcus aureus status prior to admission (p < 0.01), admission from hospital (p < 0.05), presence of urinary catheter or percutaneous endoscopic gastrostomy tube (p < 0.05) and poor dietary intake (p < 0.05). Regression analysis did not identify independent risk factors. Methicillin-resistant Staphylococcus aureus was eradicated in 8.1% of admissions, while 46 patients commenced on the protocol (62.2%) died before completing it. Methicillin-resistant Staphylococcus aureus did
Stjernswärd, Jan; Ferris, Frank D; Khleif, Samir N; Jamous, Walid; Treish, Imad M; Milhem, Mohammed; Bushnaq, Mohammed; Al Khateib, Ahmad; Al Shtiat, Mohammad Nayef; Wheeler, Mary S; Alwan, Ala
A model for pain relief and palliative care for the Middle East has been established in Jordan. King Hussein Cancer Centre (KHCC) in Amman is now a truly comprehensive cancer center as it includes palliative care for inpatients, outpatients, and patients at home. This is especially important in a country and a region where over 75% of the cancer patients are incurable when diagnosed. To support effective palliative care delivery, there have been many significant changes in Jordan between 2001 and 2006. Regulations governing opioid prescribing have been changed to facilitate effective pain management. The national opioid quota has been increased. Cost-effective, generic, immediate-release morphine tablets are being produced in Jordan. Intensive, interactive bedside training courses for doctors, nurses, and clinical pharmacologists have started to overcome opiophobia and motivate health care professionals to take up palliative care as a profession. "Champions" for palliative care have emerged who are leading the development of palliative care in Jordan's health care systems and starting to support neighboring countries to develop pain relief and palliative care. While before 2003, fewer than 250 patients per year received palliative care, by 2006 more than 800 patients per year were receiving pain relief and palliative care through the KHCC and Al Basheer Hospital. The achieved changes and the unusually rapid and effective institutionalization of palliative care serve as a model for other countries in the Middle East region as to what should be done and how.
Brown, J. B.; Sangster, M.; Swift, J.
OBJECTIVE: To examine factors that influence family physicians' decisions to practise palliative care. DESIGN: Qualitative method of in-depth interviews. SETTING: Southwestern Ontario. PARTICIPANTS: Family physicians who practise palliative care on a full-time basis, who practise on a part-time basis, or who have retired from active involvement in palliative care. METHOD: Eleven in-depth interviews were conducted to explore factors that influence family physicians' decisions to practise palliative care and factors that sustain their interest in palliative care. All interviews were audiotaped and transcribed verbatim. The analysis strategy used a phenomenological approach and occurred concurrently rather than sequentially. All interview transcriptions were read independently by the researchers, who then compared and combined their analyses. Final analysis involved examining all interviews collectively, thus permitting relationships between and among central themes to emerge. MAIN OUTCOME FINDINGS: The overriding theme was a common philosophy of palliative care focusing on acceptance of death, whole person care, compassion, communication, and teamwork. Participants' philosophies were shaped by their education and by professional and personal experiences. In addition, participants articulated personal and systemic factors currently affecting their practice of palliative care. CONCLUSIONS: Participants observed that primary care physicians should be responsible for their patients' palliative care within the context of interdisciplinary teams. For medical students to be knowledgeable and sensitive to the needs of dying patients, palliative care should be given higher priority in the curriculum. Finally, participants argued compellingly for transferring the philosophy of palliative care to the overall practice of medicine. PMID:9612588
Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R Sean; von Gunten, Charles F
Palliative and end-of-life care is changing in the United States. This dynamic field is improving 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. Methods of integrating 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. Although compilation of evidence for the importance of palliative care specialities is in its initial stages, national research grants have provided support to build the knowledge necessary for appropriate palliative care. Opportunities are available to clinicians for understanding and applying appropriate palliative and end-of-life care to patients with serious and life-threatening cancers.
Friedrichsdorf, Stefan J; Kohen, Daniel P
At least 8 million children would need specialized pediatric palliative care (PPC) services annually worldwide, and of the more than 42,000 children and teenagers dying annually in the United States, at least 15,000 children would require PPC. Unfortunately, even in resource-rich countries the majority of children dying from serious advanced illnesses are suffering from unrelieved, distressing symptoms such as pain, dyspnea, nausea, vomiting, and anxiety. State of the art treatment and prevention of those symptoms requires employing multi-modal therapies, commonly including pharmacology, rehabilitation, procedural intervention, psychology, and integrative modalities. This article describes the current practice of integrating hypnosis into advanced pain and symptom management of children with serious illness. Three case reports of children living with a life-limiting condition exemplify the effective use of this clinical modality to decrease distressing symptoms and suffering. Hypnosis for pediatric patients experiencing a life-limiting disease not only provides an integral part of advanced symptom management, but also supports children dealing with loss and anticipatory loss, sustains and enhances hope and helps children and adolescents live fully, making every moment count, until death.
Haun, Markus W; Estel, Stephanie; Rücker, Gerta; Friederich, Hans-Christoph; Villalobos, Matthias; Thomas, Michael; Hartmann, Mechthild
Evaluation) and created a 'Summary of findings' table. We included seven randomised and cluster-randomised controlled trials that together recruited 1614 participants. Four studies evaluated interventions delivered by specialised palliative care teams, and the remaining studies assessed models of co-ordinated care. Overall, risk of bias at the study level was mostly low, apart from possible selection bias in three studies and attrition bias in one study, along with insufficient information on blinding of participants and outcome assessment in six studies.Compared with usual/standard cancer care alone, early palliative care significantly improved health-related quality of life at a small effect size (SMD 0.27, 95% confidence interval (CI) 0.15 to 0.38; participants analysed at post treatment = 1028; evidence of low certainty). As re-expressed in natural units (absolute change in Functional Assessment of Cancer Therapy-General (FACT-G) score), health-related quality of life scores increased on average by 4.59 (95% CI 2.55 to 6.46) points more among participants given early palliative care than among control participants. Data on survival, available from four studies enrolling a total of 800 participants, did not indicate differences in efficacy (death hazard ratio 0.85, 95% CI 0.56 to 1.28; evidence of very low certainty). Levels of depressive symptoms among those receiving early palliative care did not differ significantly from levels among those receiving usual/standard cancer care (five studies; SMD -0.11, 95% CI -0.26 to 0.03; participants analysed at post treatment = 762; evidence of very low certainty). Results from seven studies that analysed 1054 participants post treatment suggest a small effect for significantly lower symptom intensity in early palliative care compared with the control condition (SMD -0.23, 95% CI -0.35 to -0.10; evidence of low certainty). The type of model used to provide early palliative care did not affect study results. One RCT reported
Kennedy Sheldon, Lisa; Dahlin, Constance; Maingi, Shail; Sanchez, Jose
Since 2011, oncology nurses and physicians in the United States have been volunteering in Honduras with the International Cancer Corps (ICC), organized by the American Society of Clinical Oncology (ASCO), in partnership with Health Volunteers Overseas (HVO). In this article, the authors will summarize the work of the ASCO/HVO ICC teams that developed educational programs with local partners to improve cancer and palliative care in Honduras.
Confronted with the complexities inherent in delivering palliative care, effective collaboration with referring staff becomes vital. Based on the evaluation of the physical and psychosocial concerns of patients, the goal of palliative care is to craft interventions that maintain quality of life in the face of increasing symptoms and deteriorating functional status. The project's goal was to increase the appropriateness of referrals to palliative care by the primary services in the hospital. The aim was to achieve this by developing a process to assess patient functioning in critical psychosocial and functional areas, and providing this data to referring medical staff to educate them on the contribution of palliative care to symptom control and patient quality of life. The findings show that referrals to palliative care have increased over 100% from a broader range of services since initiating this project. Assessment data has been collected on 165 patients and outcomes are discussed.
Allsop, Matthew J; Kite, Suzanne; McDermott, Sarah; Penn, Naomi; Millares-Martin, Pablo; Bennett, Michael I
The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths ( n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines
Shaw, Clare; Eldridge, Lucy
Many palliative care patients experience nutritional problems as their conditions progress. This includes those with progressive neurological conditions, chronic obstructive pulmonary disease (COPD) as well as advanced cancer. Nutritional issues not only impact patients physically but also psychologically and can also have an effect on those caring for them. It is important that patients are screened appropriately and that one identifies what symptoms are potentially affecting their intake. Decisions should always be patient-centred. Nutritional interventions range from food modification and nutritional supplements, to more intense methods such as enteral or parenteral nutrition, and these may have ethical and legal considerations. This article explores the nutritional issues faced by palliative patients, the ethical issues supporting decision-making and the methods of nutritional support available.
Pelant, Diane; McCaffrey, Terri; Beckel, Jean
Palliative care, long-used in the adult setting, is new to the pediatric setting. Research indicates that palliative care reduces length of stay and use of aggressive end-of-life interventions, improves quality of life, and provides hope. It balances provision of coordinated care with building of family memories and preparation for the child's death with celebration of the child's life. We advocate implementation of pediatric palliative care in any hospital that cares for children. This article provides a model outlining critical steps and considerations for establishing a successful pediatric palliative care program.
Background Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Results Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time. Conclusion Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its
Benyó, Gábor; Lukács, Miklós; Busa, Csilla; Mangel, László; Csikós, Ágnes
Modern palliative-hospice care has gained space in Europe for more than 50 years. Since the initial empirical work of Cicely Saunders, palliative medicine has gained its place in evidence-based medicine in more and more countries. However, development, as in many other medical fields, is not uniform, there are big differences between countries in the world. There are also significant differences in development of care and the level of services within the European Union amongst Western and Eastern European countries. These differences affect the professional approach, legislative mechanisms and social acceptance. Hungarian palliative-hospice care has developed significantly over the past 15 years. For further development thoughtful strategic steps and service development is needed. The integration of palliative care into standard oncology is an international requirement, which also appears in the form of professional guidelines. Hungary has also played a role in the development of the European model of integrated palliative care of which Hungarian implementation, the "Pécs model", is discussed in detail in our paper.
Schmiedebach, H-P; Woellert, K
Many of the judicial and ethical questions raised by euthanasia are still the subject of controversial discussions. In this context the article broaches the issues of the doctor- patient relationship, patient's right to autonomy, and advance directive. It deals with the present judicial possibilities of euthanasia in Germany with reference to the situation in the Netherlands. Finally, there is an outlook on the role of palliative care and of hospices.
Lagman, Ruth; Walsh, Declan; Heintz, Jessica; Legrand, Susan B; Davis, Mellar P
Palliative care in advanced disease is complex. Knowledge and experience of symptom control and management of multiple complications are essential. An interdisciplinary team is also required to meet the medical and psychosocial needs in life-limiting illness. Acute care palliative medicine is a new concept in the spectrum of palliative care services. Acute care palliative medicine, integrated into a tertiary academic medical center, provides expert medical management and specialized care as part of the spectrum of acute medical care services to this challenging patient population. The authors describe a case series to provide a snapshot of a typical day in an acute care inpatient palliative medicine unit. The cases illustrate the sophisticated medical care involved for each individual and the important skill sets of the palliative medicine specialist required to provide high-quality acute medical care for the very ill.
Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith
Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication
Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro
Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort.
de Boer, Dolf; Hofstede, Jolien M; de Veer, Anke J E; Raijmakers, Natasja J H; Francke, Anneke L
Dying in the preferred setting is an indicator of good palliative care quality. Most people prefer to die at home. But does the quality of care as perceived by their relatives vary depending on the care setting that is the place of death? The aim is to compare (from the relatives perspective) whether there are perceived differences in the quality of palliative care between the settings in which people die. Multivariate linear regression analyses have been carried out using an existing dataset containing information collected using the relatives' version of the Consumer Quality Index (CQ-index) Palliative Care. The dataset includes 1368 relatives of patients with a wide variety of conditions who died in various locations: at home, in hospital, in residential care for the elderly, a hospice, palliative care unit or in another institution (e.g. institutions for people with intellectual disabilities or mental healthcare institutions). The relatives were the first contacts (family members or other people close to the patient) and they received the survey between 6 weeks and 6 months after the bereavement. Based on the raw data, differences between locations in terms of the perceived quality of care initially appeared inconsistent. The multivariate regression analyses however showed that relatives of people who died at home were generally the most positive about the palliative care that the patient and they themselves received when the patient was dying. The care provided by hospices also received a relatively good rating. In hospitals and in residential settings for care of the elderly, the care was rated less highly by the relatives. The quality of palliative care as experienced from the relatives' perspective is highest when the patient dies at home or in a hospice. This is an argument for letting people die at home, if they so wish, as far as possible and feasible.
Aslakson, Rebecca A.; Curtis, J. Randall; Nelson, Judith E.
Objectives Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. Data Sources We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. Study Selection Selected studies included all English-language articles concerning adult patients using the search terms "intensive care" or "critical care" with "palliative care," "supportive care," "end-of-life care," or "ethics." Data Extraction After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. Data Synthesis Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and
Fuly, Patrícia Dos Santos Claro; Pires, Livia Márcia Vidal; Souza, Claudia Quinto Santos de; Oliveira, Beatriz Guitton Renaud Baptista de; Padilha, Katia Grillo
To verify the nursing workload required by cancer patients undergoing palliative care and possible associations between the demographic and clinical characteristics of the patients and the nursing workload. This is a quantitative, cross-sectional, prospective study developed in the Connective Bone Tissue (TOC) clinics of Unit II of the Brazilian National Cancer Institute José Alencar Gomes da Silva with patients undergoing palliative care. Analysis of 197 measures of the Nursing Activities Score (NAS) revealed a mean score of 43.09% and an association between the performance status of patients undergoing palliative care and the mean NAS scores. The results of the study point to the need to resize the team of the unit. The NAS has proven to be a useful tool in oncologic clinical units for patients undergoing palliative care. Verificar a carga de trabalho de enfermagem requerida por pacientes com câncer sob cuidados paliativos e possíveis associações entre as características demográficas e clínicas dos pacientes e a carga de trabalho de enfermagem. Trata-se de um estudo de abordagem quantitativa, transversal, prospectivo, desenvolvido na clínica de Tecido Ósseo Conectivo (TOC) da Unidade II do Instituto Nacional de Câncer José Alencar Gomes da Silva, com pacientes em cuidados paliativos. A análise de 197 medidas do Nursing Activities Score (NAS) revelou um escore médio de 43,09% e uma associação entre a performance status de pacientes em cuidados paliativos com os valores médios do NAS. Os resultados do estudo apontam para a necessidade de redimensionamento da equipe da Unidade. O NAS mostrou-se um instrumento passível de utilização em unidades clínicas oncológicas, com pacientes em cuidados paliativos.
Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana
Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques
... Families Take the Quiz Step 3: Meet the Palliative Care Team The palliative care team will spend a lot of time ... are some suggestions: What can I expect from palliative care? Where will my care be provided (e. ...
Chiu, T Y; Hu, W Y; Cheng, S Y; Chen, C Y
To investigate the incidence and solution of ethical dilemmas in a palliative care unit. Health care workers recorded daily all dilemmas in caring for each patient. Palliative care unit of National Taiwan University Hospital in Taiwan. Two hundred and forty-six consecutive patients with terminal cancer during 1997-8. Ethical dilemmas in the questionnaire were categorised as follows: telling the truth; place of care; therapeutic strategy; hydration and nutrition; blood transfusion; alternative treatment; terminal sedation; use of medication, and others. The type and frequency of ethical dilemmas encountered were: place of care (33.3%); truth-telling (32.1%); hydration and nutrition (25.2%); therapeutic strategy (24.8%), and use of medication (19.1%). Ethical problems relating to the place of care and to therapeutic strategy were unlikely to be solved with increased hospital stay and some ethical dilemmas remained unsolved even in the final week in hospital, including place of care (23.2%), truth-telling (17.1%) and therapeutic strategy (11.4%). Problems of truth-telling occurred in nearly half (42.6%) of patients over sixty-five-years-old. Conflicts about blood transfusion were experienced in all patients below 18-years-old, and the dilemmas concerning the place of care occurred most frequently with head and neck cancer patients (43.8%). The solution of ethical dilemmas required refocusing by medical professionals on the importance of continuing communication. Improved ethical training for professionals would contribute to solving the moral dilemmas of palliative care.
van Gurp, Jelle; van Selm, Martine; van Leeuwen, Evert; Vissers, Kris; Hasselaar, Jeroen
Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services. This study aims to describe (1) whether and how teleconsultation supports the integration of primary care, specialist palliative care, and patient perspectives and services and (2) how patients and (in)formal caregivers experience collaboration in a teleconsultation approach. This work consists of a qualitative study that utilizes long-term direct observations and in-depth interviews. A total of 18 home-based palliative care patients (16 with cancer, 2 with chronic obstructive pulmonary disease; age range 24-85 years old), 12 hospital-based specialist palliative care team clinicians, and 17 primary care physicians. Analysis showed that the introduction of specialist palliative care team-patient teleconsultation led to collaboration between primary care physicians and specialist palliative care team clinicians in all 18 cases. In 17/18 cases, interprofessional contact was restricted to backstage work after teleconsultation. In one deviant case, both the patient and the professionals were simultaneously connected through teleconsultation. Two themes characterized integrated palliative care at home as a consequence of teleconsultation: (1) professionals defining responsibility and (2) building interprofessional rapport. Specialist palliative care team teleconsultation with home-based patients leads to collaboration between primary care physicians and hospital-based palliative care specialists. Due to cultural reasons, most collaboration was of a multidisciplinary character, strongly relying on organized backstage work. Interdisciplinary teleconsultations with real-time contact between patient and both professionals were
Wentlandt, Kirsten; Weiss, Andrea; O'Connor, Erin; Kaya, Ebru
Palliative care is an interprofessional approach that focuses on quality of life of patients facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower health care utilization. Most transplant patients suffer from advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population is lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure, and transplant populations. A proposed model to provide palliative care in parallel with disease directed therapy in a transplant program has potential to improve symptom burden, quality of life, and health care utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research.
Webster, Ruth; Lacey, Judith; Quine, Susan
Palliative care is an emerging specialist discipline worldwide with the majority of services located in developed countries. Developing countries, however, have higher incidences of cancer and AIDS and most of these patients would benefit from palliative care. While there is prominent coverage of this issue in the palliative care literature, there is limited coverage in the specialist public health literature, which suggests that the challenges of palliative care may not yet have been generally recognized as a public health priority, particularly in developing countries. The aim of this article is to introduce the topic of "Palliative care in developing countries" into the specialist public health literature to raise awareness and stimulate debate on this issue among public health professionals and health policy makers, thereby potentially facilitating establishment of palliative care services in developing countries.
Khosla, Divya; Patel, Firuza D; Sharma, Suresh C
Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities. PMID:23439559
Dallara, Alexis; Meret, Anca; Saroyan, John
Objectives of this review were to examine definitions and background of palliative care, as well as address whether there is an increased need for palliative care education among neurologists. The review also explores what literature exists regarding palliative care within general neurology and child neurology. A literature review was conducted examining use of palliative care within child neurology. More than 100 articles and textbooks were retrieved and reviewed. Expert guidelines stress the importance of expertise in palliative care among neurologists. Subspecialties written about in child neurology include that of peripheral nervous system disorders, neurodegenerative diseases, and metabolic disorders. Adult and child neurology patients have a great need for improved palliative care services, as they frequently develop cumulative physical and cognitive disabilities over time and cope with decreasing quality of life before reaching the terminal stage of their illness.
Lung cancer accounts for 12% of all cancers and has the highest annual rate of mortality in men and women. The overall aim is cure or prolongation of life without evidence of disease. Almost 60% of patients at the moment of diagnosis are not eligible for radical treatment. Therefore soothing and supportive treatment is the only treatment of choice. Patients with lung cancer who have symptoms of dyspnea, chronic cough, severe pain, exhaustion and cachexia syndrome, fear and depression and significantly reduced physical and intellectual activities are qualified for inpatient or home palliative care. Knowledge about various methods used in palliative treatment allows one to alleviate symptoms that occur in an advanced stage of disease with an expected short survival period. Methods of oncological treatment that are often used in patients with advanced lung cancer include radiotherapy and chemotherapy. Drawing attention to the earlier implementation of palliative care is an objective of research carried out during recent years. Advances in surgical and conservative treatment of these patients have contributed to better outcomes and longer survival time. PMID:24596508
Mierendorf, Susanne M; Gidvani, Vinita
The Emergency Department (ED) is the place where people most frequently seek urgent care. For patients living with chronic disease or malignancy who may be in a crisis, this visit may be pivotal in determining the patients’ trajectory. There is a large movement in education of emergency medicine physicians, hospitalists, and intensivists from acute aggressive interventions to patient-goal assessment, recognizing last stages of life and prioritizing symptom management. Although the ED is not considered an ideal place to begin palliative care, hospital-based physicians may assist in eliciting the patient’s goals of care and discussing prognosis and disease trajectory. This may help shift to noncurative treatment. This article will summarize the following: identification of patients who may need palliation, discussing prognosis, eliciting goals of care and directives, symptom management in the ED, and making plans for further care. These efforts have been shown to improve outcomes and to decrease length of stay and cost. The focus of this article is relieving “patient” symptoms and family distress, honoring the patient’s goals of care, and assisting in transition to a noncurative approach and placement where this may be accomplished. PMID:24694318
Kelly, Len; Linkewich, Barb; Cromarty, Helen; St Pierre-Hansen, Natalie; Antone, Irwin; Gilles, Chris
ABSTRACT OBJECTIVE To understand cross-cultural hospital-based end-of-life care from the perspective of bereaved First Nations family members. DESIGN Phenomenologic approach using qualitative in-depth interviews. SETTING A rural town in northern Ontario with a catchment of 23 000 Ojibway and Cree aboriginal patients. PARTICIPANTS Ten recently bereaved aboriginal family members. METHODS Semi-structured interviews were conducted, audiotaped, and transcribed. Data were analyzed using crystallization and immersion techniques. Triangulation and member-checking methods were used to ensure trustworthiness. MAIN FINDINGS First Nations family members described palliative care as a community and extended family experience. They expressed the need for rooms and services that reflect this, including space to accommodate a larger number of visitors than is usual in Western society. Informants described the importance of communication strategies that involve respectful directness. They acknowledged that all hospital employees had roles in the care of their loved ones. Participants generally described their relatives’ relationships with nurses and the care the nurses provided as positive experiences. CONCLUSION Cross-cultural care at the time of death is always challenging. Service delivery and communication strategies must meet cultural and family needs. Respect, communication, appropriate environments, and caregiving were important to participants for culturally appropriate palliative care. PMID:19366951
Ridley, Julia; Dance, Derry; Pare, Daniel
Humor frequently occurs in palliative care environments; however, the acceptability of humor, particularly between patients and health care providers has not been previously examined. To explore the importance and acceptability of humor to participants who are patients in a palliative care context, the study determines if demographics are correlated with the degree of acceptability, and examines the acceptance of humor by patients with advanced illness when interacting with nurses or physicians. One hundred participants admitted to a palliative care unit or residential hospice were surveyed. Basic demographic data were collected, as well as responses on a five-point Likert scale to a variety of questions regarding the participants' attitudes about humor before and after their illness and the acceptability of humor in a palliative setting. Participants were also given the opportunity to comment freely on the topic of humor and the palliative experience. A large majority of participants valued humor highly both prior to (77%) and during (76%) their illness experience. Despite this valuation, the frequency of laughter in their daily lives diminished significantly as patients' illness progressed. Most participants remembered laughing with a nurse (87%) and a doctor (67%) in the week prior to the survey, and found humor with their doctors (75%) and nurses appropriate (88%). The vast majority of participants found humorous interactions with their health care providers acceptable and appropriate, and this may indicate a opportunity for enhanced and more effective end-of-life care in the future.
On World Hospice and Palliative Care Day-8 October 2011-the Worldwide Palliative Care Alliance (WPCA) launched a global update highlighting the progress that has been made in hospice and palliative care over the past 5 years (Lynch et al, 2011; WPCA 2011). Encouragingly, the study shows that there has been a marked increase in the number of countries providing one or more hospice and palliative care services-from 49% of countries in 2006 to 58% in 2011. Here we explore some of the key factors behind this progress, focusing particularly on advocacy and policy.
Berry, Mary Judith; Saito-Benz, Maria; Klein, Tisha; Bowkett, Brendon; Richardson, Vaughan F
Complete ectopia cordis in the newborn represents a significant management challenge. There are minimal data available to inform optimal clinical care for those infants with coexisting complex congenital heart disease who are therefore not candidates for surgical intervention. The exteriorisation of the heart and absence of the pericardial sac requires meticulous wound care to prevent desiccation of the myocardium and to minimise infection risk. Additionally, the technique selected must address the risk of occlusion of the cardiac vascular pedicle and abrasion between the mobile myocardium and dressing surface. We report a novel approach to wound management and integrated palliative care that enabled community-based care. Our patient, a full-term male infant with complete ectopia cordis was born in good condition by assisted vaginal delivery. He was discharged from hospital on day 8 and was cared for in the community until his demise from cardiac failure on day 15.
Zulman, Donna M.
Abstract With global aging and scientific advances extending survival, the number of adults experiencing multiple chronic conditions has grown substantially and is projected to increase by another third between 2000 and 2030. Among the many challenges posed by multimorbidity, some of the most pressing include how to characterize and measure comorbid conditions, understand symptoms and illness burden, and provide person-centered care in the context of competing health care priorities and increasing complexity. In this white paper emanating from a National Institute on Aging supported conference to discuss research gaps at the geriatrics–palliative care interface, the authors review common definitions of multimorbidity; describe the association between multimorbidity and quality of life, functional status, quality of care, and health care utilization; note content and methodological gaps in multimorbidity evidence; and make recommendations regarding research priorities in this area of expanding public health impact. PMID:23777331
Cooper, Rhonda S
The role of the professional chaplain on the palliative care team in the health care setting formalizes the concern for the emotional, spiritual and social well-being of the care recipients and their caregivers. The chaplain also has a peculiar role on the team, in that her most fundamental task is her intentional listening-and-hearing of the other person's story. One palliative chaplain introduces herself as a Story Catcher to care recipients, in an effort both to overcome the resistance some may have to her presence on the team and communicate her essential role and intent in providing spiritual care. This self-appointed sobriquet resonates with the author's embrace of the theory and practice of the late theologian, educator and civil rights activist Nelle Morton, who coined the phrase "hearing into speech" to describe the process by which another person, through being truly heard and entering into a relationship with the hearer, claims her/his own truth, hope and identity in the face of adversity. The chaplain as Story Catcher functions as the agent of healing and hope for those who choose to tell their stories and are heard, as they resist their illness and death rather than submit to its indignity. Copyright © 2017. Published by Elsevier Inc.
Michelson, Kelly Nicole; Steinhorn, David M.
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. PMID:18438449
Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert
To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.
Bekelman, David B; Rabin, Borsika A; Nowels, Carolyn T; Sahay, Anju; Heidenreich, Paul A; Fischer, Stacy M; Main, Deborah S
The Institute of Medicine recommends people with serious advanced illness have access to skilled palliative care. However, the predominant delivery model of nonhospice palliative care is inpatient, consultative care focused on the end of life, with a small specialist palliative care workforce. The study objective was to understand organizational factors that could influence the adoption and scale-up of outpatient palliative care in chronic advanced illness, using the example of heart failure. This was a cross-sectional qualitative study. Participants were 17 health care providers and local, regional, and national health system leaders from the Veterans Health Administration (VHA) who were considering whether and how to adopt and sustain outpatient palliative care. Individual interviews using semistructured questions assessed domains of the Consolidated Framework for Implementation Science. Most providers and leaders perceived outpatient palliative care as high priority in the VHA given its patient-centeredness and potential to decrease health care use and costs associated with conditions like heart failure. They also supported a collaborative care team model of outpatient palliative care delivery where a palliative care specialist collaborates with medical nurses and social workers. They reported lack of performance measures/incentives for patient-centered care processes and outcomes as a potential barrier to implementation. Features of outpatient palliative care viewed as important for successful adoption and scale-up included coordination and communication with other providers, ease of integration into existing programs, and evidence of improving quality of care while not substantially increasing overall health care costs. Incentives such as performance measures and collaboration with local VHA providers and leaders could improve adoption and scale-up of outpatient palliative care.
Evidence and information is an integral part of the processes enabling clinical and service delivery within health. It is used by health professionals in clinical practice and in developing their professional knowledge, by policy makers in decision making, and is sought by health consumers to help them manage their health needs and assess their options. Increasingly, this evidence and information is being disseminated and sought through online channels. The internet is fundamentally changing how health information is being distributed and accessed. Clinicians, patients, community members, and decision makers have an unprecedented capacity to find online information about palliative care and end-of-life care. However, it is clear that not all individuals have the skills to be able to find and assess the quality of the resources they need. There are also many issues in creating online resources that are current, relevant and authoritative for use by health professionals and by health consumers. This paper explores the processes and structures used in creating a major national palliative care knowledge resource, the CareSearch website, to meet the needs of health professionals and of patients and their families and carers. PMID:27983592
Robert, Rhonda; Zhukovsky, Donna S; Mauricio, Riza; Gilmore, Katherine; Morrison, Shirley; Palos, Guadalupe R
This study's goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their child's death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions.
Santos Salas, Anna; Cameron, Brenda L
Understanding how a nurse acts in a particular situation reveals how nurses enact their ethics in day-to-day nursing. Our ethical frameworks assist us when we experience serious ethical dilemmas. Yet how a nurse responds in situations of daily practice is contingent upon all the presenting cues that build the current moment. In this article, we look at how a home care nurse responds to the ethical opening that arises when the nurse enters a person's home. We discuss how the home presents the nurse with knowledge that informs the provision of ethical nursing care. The analysis is based on findings from an interpretive research study in palliative home care in Canada. Through interpretive analysis of a nursing situation we delineate how the nurse engages with the whole and acts inside the moment. The analysis shows how home care nurses are ethically determined to engage with whatever is going on in a patient's home.
Siles González, José; Solano Ruiz, Maria Del Carmen
The objective of this study is to describe the evolution of palliative care in order to reflect on the possibility of its origin in primitive cultures and their relationship with the beginnings of the cult of the dead. It describes the change in the symbolic structures and social interactions involved in palliative care during prehistory: functional unit, functional framework and functional element. The theoretical framework is based on cultural history, the dialectical structural model and symbolic interactionism. Categorization techniques, cultural history and dialectic structuralism analyses were performed. Palliative care existed in primitive societies, mostly associated with the rites of passage with a high symbolic content. The social structures - functional unit, functional framework and functional element - are the pillars that supported palliative care in prehistory societies.
O'Kelly, Julian; Koffman, Jonathan
Music therapy aims to provide holistic support to individuals through the sensitive use of music by trained clinicians. A recent growth in music therapy posts in UK palliative care units has occurred despite a paucity of rigorous research. To explore the role of music therapy within multidisciplinary palliative care teams, and guide the future development of the discipline. In-depth qualitative interviews with 20 multidisciplinary colleagues of music therapists, based in five UK hospices. Analysis of interview material revealed a number of themes relevant to the study aims. Music therapy was valued by most interviewees; however there exists some lack of understanding of the role of the music therapist, particularly amongst nurses. Emotional, physical, social, environmental, creative and spiritual benefits of music therapy were described, with some benefits perceived as synergistic, arising from collaborations with other disciplines. Interviewees found experiencing or witnessing music therapy is effective in developing an understanding of the discipline. Music therapy is an appropriate therapeutic intervention for meeting the holistic needs of palliative care service users. More understanding and integration of music therapy could be encouraged with collaborative work, educational workshops, and the utilization of environmentally focused techniques. The study merits further research to explore and develop these findings.
The value of palliative care in pediatrics has received significant attention over the past 10 years. The American Academy of Pediatrics and the Institute of Medicine published recommendations involving children who have a life-limiting diagnosis in a palliative care program early in their disease process. Palliative care is intended to assure an emphasis on quality of life in addition to the current medical treatment, which may be focused on cure, symptom management, and/or end-of-life care. This article describes one hospital's experience in planning, implementing, and managing a pediatric palliative care program. Implementing a hospital-based palliative care program in a children's hospital can be accomplished through careful planning and analysis of need. Writing an official business plan formalized the request for organizational support for this program, including the mission and vision, plans for how services would be provided, expected financial implications, and initial plans for evaluation of success.
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many
Smith, C B; Nelson, J E; Berman, A R; Powell, C A; Fleischman, J; Salazar-Schicchi, J; Wisnivesky, J P
Integration of palliative care with standard oncologic care improves quality of life and survival of lung cancer patients. We surveyed physicians to identify factors influencing their decisions for referral to palliative care. We provided a self-administered questionnaire to physicians caring for lung cancer patients at five medical centers. The questionnaire asked about practices and views with respect to palliative care referral. We used multiple regression analysis to identify predictors of low referral rates (<25%). Of 155 physicians who returned survey responses, 75 (48%) reported referring <25% of patients for palliative care consultation. Multivariate analysis, controlling for provider characteristics, found that low referral rates were associated with physicians' concerns that palliative care referral would alarm patients and families [odds ratio (OR) 0.45, 95% confidence interval (CI) 0.21-0.98], while the belief that palliative care specialists have more time to discuss complex issues (OR 3.07, 95% CI 1.56-6.02) was associated with higher rates of referral. Although palliative care consultation is increasingly available and recommended throughout the trajectory of lung cancer, our data indicate it is underutilized. Understanding factors influencing decisions to refer can be used to improve integration of palliative care as part of lung cancer management.
0802 TITLE: Racial Disparities in Palliative Care for Prostate Cancer PRINCIPAL INVESTIGATOR: Alfred I. Neugut, MD, PhD...Disparities in Palliative Care for Prostate Cancer 5b. GRANT NUMBER W81XWH-10-1-0802 5c. PROGRAM ELEMENT NUMBER 6. AUTHOR(S...increasingly available. There has been very little research on the use of palliative treatments. Our team has developed the tools/methods for
Liossi, Christina; Anderson, Anna-Karenia; Howard, Richard F
Priority setting for healthcare research is as important as conducting the research itself because rigorous and systematic processes of priority setting can make an important contribution to the quality of research. This project aimed to prioritise clinical therapeutic uncertainties in paediatric pain and palliative care in order to encourage and inform the future research agenda and raise the profile of paediatric pain and palliative care in the United Kingdom. Clinical therapeutic uncertainties were identified and transformed into patient, intervention, comparison and outcome (PICO) format and prioritised using a modified Nominal Group Technique. Members of the Clinical Studies Group in Pain and Palliative Care within National Institute for Health Research (NIHR) Clinical Research Network (CRN)-Children took part in the prioritisation exercise. There were 11 clinically active professionals spanning across a wide range of paediatric disciplines and one parent representative. The top three research priorities related to establishing the safety and efficacy of (1) gabapentin in the management of chronic pain with neuropathic characteristics, (2) intravenous non-steroidal anti-inflammatory drugs in the management of post-operative pain in pre-schoolers and (3) different opioid formulations in the management of acute pain in children while at home. Questions about the long-term effect of psychological interventions in the management of chronic pain and various pharmacological interventions to improve pain and symptom management in palliative care were among the ‘top 10’ priorities. The results of prioritisation were included in the UK Database of Uncertainties about the Effects of Treatments (DUETS) database. Increased awareness of priorities and priority-setting processes should encourage clinicians and other stakeholders to engage in such exercises in the future. PMID:28386399
Liossi, Christina; Anderson, Anna-Karenia; Howard, Richard F
Priority setting for healthcare research is as important as conducting the research itself because rigorous and systematic processes of priority setting can make an important contribution to the quality of research. This project aimed to prioritise clinical therapeutic uncertainties in paediatric pain and palliative care in order to encourage and inform the future research agenda and raise the profile of paediatric pain and palliative care in the United Kingdom. Clinical therapeutic uncertainties were identified and transformed into patient, intervention, comparison and outcome (PICO) format and prioritised using a modified Nominal Group Technique. Members of the Clinical Studies Group in Pain and Palliative Care within National Institute for Health Research (NIHR) Clinical Research Network (CRN)-Children took part in the prioritisation exercise. There were 11 clinically active professionals spanning across a wide range of paediatric disciplines and one parent representative. The top three research priorities related to establishing the safety and efficacy of (1) gabapentin in the management of chronic pain with neuropathic characteristics, (2) intravenous non-steroidal anti-inflammatory drugs in the management of post-operative pain in pre-schoolers and (3) different opioid formulations in the management of acute pain in children while at home. Questions about the long-term effect of psychological interventions in the management of chronic pain and various pharmacological interventions to improve pain and symptom management in palliative care were among the 'top 10' priorities. The results of prioritisation were included in the UK Database of Uncertainties about the Effects of Treatments (DUETS) database. Increased awareness of priorities and priority-setting processes should encourage clinicians and other stakeholders to engage in such exercises in the future.
Chisholm, Latarsha; Weech-Maldonado, Robert; Landry, Amy Yarbrough; Epané, Josué Patien
The presence of hospital-based palliative care programs has risen over time in the United States. Nevertheless, organizational and environmental factors that contribute to the presence of hospital-based palliative care programs are unclear. The aim of this study was to examine the role of organizational and environmental factors associated with the presence of hospital-based palliative care programs using resource dependence theory. Panel data from 2000 to 2009 American Hospital Association Annual Survey and the Area Resource File were used in this study. A random-effect logistic regression was used to analyze the relationship between organizational and environmental factors and the presence of hospital-based palliative care programs. Hospitals with higher Medicare inpatient days, located in counties with higher Medicare managed penetration, and larger hospitals had greater odds of having a hospital-based palliative care program. Although hospitals in counties that have a higher percentage of individuals 65 years and older, for-profit and government hospitals were less likely to have a hospital-based palliative care program. Hospitals will vary in the organizational resources available to them, as such, administrators' awareness of the relationship between resources and palliative care programs can help determine the relevance of a program in their hospital.
Ewing, Gail; Farquhar, Morag; Booth, Sara
There has been a steady expansion of hospital-based palliative care in the United Kingdom but limited published research on health professionals' views of hospital multidisciplinary specialist palliative care services (SPCS). The aim of the study was to describe referrer (SPCS user) and provider (SPCS staff) perspectives on delivery of specialist palliative care in hospital. Interviews were conducted with referrers, including five junior doctors, 13 consultants, and six clinical nurse specialists, to investigate the reasons for referral, beneficial aspects, and barriers to use. Focus groups were conducted with providers, six medical and five nursing, to identify their perspective on delivering the specialist service in hospital. Discussions were tape recorded and transcribed verbatim. Data were analyzed thematically using a framework analysis approach. The study found large areas of agreement between referrers and providers on what hospital palliative care teams should be providing for patients, that is, expertise in managing difficult symptoms and complex psychosocial problems, and this was being achieved locally. Access to the specialist team was also important: visibility on the wards, informal routes of access to advice and a timely response by specialists. However, discordance in views of providing palliative care was also identified; in particular, whether specialists should be providing generalist palliative care (such as basic psychological support) neglected by ward teams and implementation of specialist advice by referrers. Such perspectives on the interface of generalist and specialist provision provide insights into improving care for palliative patients in the acute hospital setting.
Bolognesi, Deborah; Brighi, Nicole; Muciarelli, Pier-Angelo; Biasco, Guido
Development of palliative care (PC) culture spur the need of proper and formal training. Palliative medicine is not fully recognized as an academic medical discipline due to its humanistic influences, and studies show that physicians declare to be not prepared to provide care and pain management to dying patients. Nowadays, despite leading countries in PC being considered more innovative than other countries,such as Italy, facts show that the achievement of acknowledged discipline went through a long process. In Italy,professionals from about 450 PC units and organizations need to receive a proper and homogeneous training. In Italy, palliative medicine official certification is an undergoing process advocated by a few organizations and in Bologna the Academy of the Sciences of Palliative Medicine operates since 2007 with the defined mission of developing PC culture, also within the University. In order to be as much effective in pursuing its mission, the Academy has strengthened several international cooperation programs and today is leader in PC professional training and research in Italy. The recent law and its feasibility is fastening the process of development of Palliative Care Culture in Italy even if training is not properly regulated and official certification for physician is under evaluation. In Europe, the European Association of Palliative Care is stressing the need for training programs in palliative medicine and the outcomes of the dedicated task force on official certification and specialty in Palliative Medicine will remarkably force policy makers and national councils to officially recognize the discipline. PMID:23766591
Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.
Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…
Minton, Mary E; Kerkvliet, Jennifer L; Mitchell, Amanda; Fahrenwald, Nancy L
Geographical disparities play a significant role in palliative and end-of-life care access. This study assessed availability of palliative and end of life (hospice) care in South Dakota. Grounded in a conceptual model of advance care planning, this assessment explored whether South Dakota health care facilities had contact persons for palliative care, hospice services, and advance directives; health care providers with specialized training in palliative and hospice care; and a process for advance directives and advance care planning. Trained research assistants conducted a brief telephone survey. Of 668 health care eligible facilities, 455 completed the survey for a response rate of 68 percent (455 out of 668). Over one-half of facilities had no specific contact person for palliative care, hospice services and advance directives. Nursing homes reported the highest percentage of contacts for palliative care, hospice services and advance directives. Despite a lack of a specific contact person, nearly 75 percent of facilities reported having a process in place for addressing advance directives with patients; slightly over one-half (53 percent) reported having a process in place for advance care planning. Of participating facilities, 80 percent had no staff members with palliative care training, and 73 percent identified lack of staff members with end-of-life care training. Palliative care training was most commonly reported among hospice/home health facilities (45 percent). The results of this study demonstrate a clear need for a health care and allied health care workforce with specialized training in palliative and end-of-life care.
Uwimana, J; Struthers, P
The rising number of people living with HIV/AIDS (PLWHA) worldwide has made health care professionals and policy makers search for accessible health care that will meet the needs of people who are suffering from the disease and enhance their quality of life (QoL). This study investigated met and unmet palliative care needs of PLWHA in selected areas in Rwanda. The study sample included 306 participants: PLWHA, health care professionals and coordinators of HIV/AIDS units. Quantitative and qualitative methodologies were used. The data were analysed separately and then triangulated. In the findings, over 50% of PLWHA had symptoms related to HIV/AIDS most of the time, with the most common symptom being pain. Participation in activities of daily living was significantly associated with the health status of PLWHA (p<0.001). The most common perceived palliative care needs of PLWHA were medical needs, psychosocial needs and the need for financial assistance (77%); home-based care (47%); nutritional support (44%); and pain relief and management of other symptoms (43%). Most PLWHA indicated these palliative care needs were unmet, in particular the need for pain relief, symptom management, financial assistance and nutritional support. Over 50% of health care professionals reported they were not trained in palliative care. They indicated that inadequate policy and resources were the main obstacles to the provision of optimal palliative care. Addressing unmet palliative care needs would enhance the QoL of PLWHA. In addition, developing policy related to the provision of palliative care and building the capacity of health care providers is essential for the provision of adequate palliative care services in Rwanda.
Harden, Karen; Price, Deborah; Duffy, Elizabeth; Galunas, Laura; Rodgers, Cheryl
Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care. . The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care. . This project had a pre-/post-test design to assess knowledge, attitudes, and behaviors at baseline and one month after implementation of an established education curriculum. The teaching strategy included one four-hour class for oncology RNs with topics about the definition of palliative care, pain and symptom management, and how to have palliative care conversations. . Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.
Lilley, Elizabeth J; Cooper, Zara; Schwarze, Margaret L; Mosenthal, Anne C
Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet, these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care. Surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients' physical, emotional, social, and spiritual well-being and quality of life. To date, evidence to support the role of palliative care in surgical practice is sparse and palliative care research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of palliative care. The objective of this article was to describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field. We propose a research agenda to address these gaps and provide a road map for future investigation.
Knapp, Caprice A; Madden, Vanessa; Wang, Hua; Kassing, Kristin; Curtis, Charlotte; Sloyer, Phyllis; Shenkman, Elizabeth A
Several studies have investigated nurses' attitudes toward hospice and palliative care for adults, yet little information exists about pediatrics. Assessing pediatric nurses' attitudes is especially important in Florida, where a publicly funded pediatric palliative care program operates in eight cities across the State. The aims of this study were 1) to assess the attitudes toward hospice and palliative care, and 2) to examine the associations between sociodemographic and nursing care factors and nurses' attitudes toward hospice and palliative care. A cross-sectional research design using online and mail-in survey data was used to address the study aims. Surveys were conducted with 279 pediatric nurses across Florida. Bivariate results showed there were significant differences between the attitudes of pediatric nurses employed in a city with a pediatric palliative care program versus those not employed in a program site (p = 0.05). Multivariate analyses also showed that being employed in a program site increased attitudinal scores toward hospice and pediatric palliative care by 0.6 points. Beyond being employed in an area city where a pediatric palliative care program operates, results also suggest that having prior training in palliative care could alter nurses' attitudes, which might subsequently lead to increased referrals and improved outcomes for children and families.
Downing, J; Marston, J; Muckaden, Ma; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P
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.
The purpose of this qualitative study, using a modified grounded theory approach, was to investigate how palliative care nurses care for people from cultural backgrounds other than their own. Ten palliative care nurses were interviewed. The semi-structured interviews were tape-recorded and transcribed verbatim. Analysis commenced as soon as data began to emerge. The findings show that palliative nursing across cultural boundaries is paradoxical. In endeavouring to treat everyone equally, nurses treated everyone as individuals. They made intense efforts to transcend both cultural and language barriers. The nurses gave of themselves when caring for the patients, but their endeavours were impeded by limited resources and a lack of education. The theory of cross-cultural endeavour in palliative nursing was developed to explain how palliative care nurses care for patients from cultures other than their own.
Spencer, L; Battye, L
In-depth interviews and discussions were held with 40 different professionals in South East England involved in managing palliative care for children with cancer in the community. Participants included paediatric oncologists and outreach nurse specialists in tertiary centres, paediatricians in shared care units, children's community nurses, general practitioners, social workers and child psychologists. The research examined palliative care services available in the region, exploring attitudes to both current provision and possible service improvements. Providing palliative care in the community involves multi-agency collaboration and the study highlighted a range of different approaches to case management with the diversity of resources available. Key improvements proposed by health-care professionals included: better communication and liaison between all the professionals involved; clearer allocation of roles and responsibilities; 24-hour availability of specialist advice on palliative care for children with cancer; faster access to social work and psychology services at the community level; continuity of nursing and respite care. The provision of specialist local palliative care services for children with cancer was generally rejected. The participants favoured improving community palliative care for all children with life-limiting or life-threatening conditions with community nursing teams providing continuity of care and outreach nurses providing specialist advice and support.
Lane, Heather; Philip, Jennifer
To explore the views and experiences of staff from RACFs and community palliative care services (CPCSs) on providing palliative and end-of-life care in RACFs. Qualitative exploratory interviews and focus groups were conducted with staff working in two RACFs and two CPCSs, and, following data saturation, a thematic analysis undertaken. 15 RACF and 15 CPCS staff participated. The overarching theme was of managing expectations in the provision of care. This included low expectations of the care available in RACFs, tensions in addressing complex decision-making and concurrent administrative expectations, and differences between views of RACF and CPCS staff regarding their respective roles. Improved understanding of the needs of RACF staff will improve the care of residents and, in turn, reduce hospitalisations. © 2013 ACOTA.
This essay is a reflection on the multidisciplinary team in palliative care, from the perspective of a final year MBBS student from the UK spending one month with an Indian pain and palliative care team at Institute Rotary Cancer Hospital (IRCH), AIIMS, New Delhi.
van Vliet, Liesbeth M; Gao, Wei; DiFrancesco, Daniel; Crosby, Vincent; Wilcock, Andrew; Byrne, Anthony; Al-Chalabi, Ammar; Chaudhuri, K Ray; Evans, Catherine; Silber, Eli; Young, Carolyn; Malik, Farida; Quibell, Rachel; Higginson, Irene J
Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson's Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9-88 MND, 3-25 Parkinsonism, and 0-5 MS). This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.
Daly, Donnelle; Matzel, Stephen Chavez
A transdisciplinary team is an essential component of palliative and end-of-life care. This article will demonstrate how to develop a transdisciplinary approach to palliative care, incorporating nursing, social work, spiritual care, and pharmacy in an acute care setting. Objectives included: identifying transdisciplinary roles contributing to care in the acute care setting; defining the palliative care model and mission; identifying patient/family and institutional needs; and developing palliative care tools. Methods included a needs assessment and the development of assessment tools, an education program, community resources, and a patient satisfaction survey. After 1 year of implementation, the transdisciplinary palliative care team consisted of seven palliative care physicians, two social workers, two chaplains, a pharmacist, and End-of-Life Nursing Consortium (ELNEC) trained nurses. Palomar Health now has a palliative care service with a consistent process for transdisciplinary communication and intervention for adult critical care patients with advanced, chronic illness.
Schmidt, Pia; Otto, Michael; Hechler, Tanja; Metzing, Sabine; Wolfe, Joanne; Zernikow, Boris
Awareness for pediatric palliative care in children with cancer increased in the last ten years in Germany. In this study we sought to determine whether this change in awareness led to improved palliative care outcomes in children dying due to cancer. In 2005 we interviewed a cohort of 48 bereaved parents who had a lost a child to cancer approximately five years earlier (2000 cohort), and in 2010 we interviewed another cohort of 48 parents who had lost a child due to cancer approximately five years before (2005 cohort). Children of the 2000 cohort were cared for by six specialized oncology departments in North-Rhine-Westphalia (NRW), Germany, and children of the 2005 cohort by 16 specialized pediatric oncology departments in NRW, Germany. Parents of both cohorts were interviewed using the Survey of Caring for Children with Cancer (SCCC). The children of both parental cohorts were similar in terms of disease characteristics and sociodemographic variables. Children suffered in a very similar manner from core symptoms such as pain and dyspnea. However, symptom treatment increased for all symptoms. In case of treatment of anxiety the increase was statistically significant (p=0.035). Location of care changed with almost three-quarters of the 2005 cohort receiving palliative home care, significantly more than in the 2000 cohort (p=0.007). Additionally, fewer children of the 2005 cohort died in the intensive care unit. While the location of care during the end-of-life period shifted (from hospital to home), there remains substantial work to ease the suffering in children with cancer at end of life.
Kampo medicines are currently manufactured under strict quality controls. The Ministry of Health, Labour and Welfare of Japan has approved 148 Kampo formulas. There is increasing evidence for the efficacy of Kampo medicines, and some are used clinically for palliative care in Japan. The specific aim of this review is to evaluate the clinical use of Kampo medicines in palliative care in the treatment of cancer. The conclusions are as follows: Juzentaihoto inhibits the progression of liver tumors in a dose-dependent manner and contributes to long-term survival. Hochuekkito has clinical effects on cachexia for genitourinary cancer and improves the QOL and immunological status of weak patients, such as postoperative patients. Daikenchuto increases intestinal motility and decreases the postoperative symptoms of patients with total gastrectomy with jejunal pouch interposition, suppresses postoperative inflammation following surgery for colorectal cancer, and controls radiation-induced enteritis. Rikkunshito contributes to the amelioration of anorectic conditions in cancer cachexia-anorexia syndrome. Goshajinkigan and Shakuyakukanzoto reduce the neurotoxicity of patients with colorectal cancer who undergo oxaliplatin and FOLFOX (5-fluorouracil/folinic acid plus oxaliplatin) therapy. Hangeshashinto has the effect of preventing and alleviating diarrhea induced by CPT-11(irinotecan) and combination therapy with S-1/CPT-11. O’rengedokuto significantly improves mucositis caused by anticancer agents. PMID:24447861
Hubble, Rosemary A; Ward-Smith, Peggy; Christenson, Kathy; Hutto, C J; Korphage, Rebecca M; Hubble, Christopher L
Recommendations for best practice from the American Academy of Pediatrics include the availability of palliative care for children with life-threatening or life-limiting health care conditions. The uniqueness of the both the pediatric population and a pediatric health care setting requires changing the culture that previously has provided only curative or hospice care to these individuals. Methods to provide palliative care alongside of treatment and coordination of these efforts must be multidisciplinary and include family members.
Kumar, Senthil P
Context: Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. Aims: This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. Settings and Design: This was a systematic review of palliative care journals. Materials and Methods: Twelve palliative care journals were searched for articles with “paediatric” or “children” in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles’ category was further classified according to study designs. Statistical Analysis Used: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. Results: The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care. PMID:22347775
Kumar, Senthil P
Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. This was a systematic review of palliative care journals. Twelve palliative care journals were searched for articles with "paediatric" or "children" in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles' category was further classified according to study designs. Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.
Bergman, Jonathan; Laviana, Aaron A
Palliative care involves aggressively addressing and treating psychosocial, spiritual, religious, and family concerns, as well as considering the overall psychosocial structures supporting a patient. The concept of integrated palliative care removes the either/or decision a patient needs to make: they need not decide if they want either aggressive chemotherapy from their oncologist or symptom-guided palliative care but rather they can be comanaged by several clinicians, including a palliative care clinician, to maximize the benefit to them. One common misconception about palliative care, and supportive care in general, is that it amounts to “doing nothing” or “giving up” on aggressive treatments for patients. Rather, palliative care involves very aggressive care, targeted at patient symptoms, quality-of-life, psychosocial needs, family needs, and others. Integrating palliative care into the care plan for individuals with advanced diseases does not necessarily imply that a patient must forego other treatment options, including those aimed at a cure, prolonging of life, or palliation. Implementing interventions to understand patient preferences and to ensure those preferences are addressed, including preferences related to palliative and supportive care, is vital in improving the patient-centeredness and value of surgical care. Given our aging population and the disproportionate cost of end-of-life care, this holds great hope in bending the cost curve of health care spending, ensuring patient-centeredness, and improving quality and value of care. Level 1 evidence supports this model, and it has been achieved in several settings; the next necessary step is to disseminate such models more broadly. PMID:27226721
Stienstra, Deborah; Chochinov, Harvey Max
Palliative care has paid exceedingly little attention to the needs of disabled people nearing the end of life. It is often assumed that these individuals, like all patients with little time left to live, arrive at palliative care with various needs and vulnerabilities that by and large, can be understood and accommodated within routine standards of practice. However, people with longstanding disabilities have lived with and continue to experience various forms of prejudice, bias, disenfranchisement, and devaluation. Each of these impose heightened vulnerability, requiring an honest, thoughtful, yet difficult revisiting of the standard model of palliative care. A proposed Vulnerability Model of Palliative Care attempts to incorporate the realities of life with disability and how a contextualized understanding of vulnerability can inform how we approach quality, compassionate palliative care for marginalized persons approaching death.
Alonso, Juan Pedro
This paper analyzes the palliative care of terminal patients, examining the tensions between the humanization of care and the progressive medicalization at the end-of-life situation. The research upon which the article is based adopts a qualitative methodological approach derived from interviews with professionals and patients and ethnographic observations in a palliative care unit in the City of Buenos Aires, Argentina. The article describes the configuration of personalized and comprehensive health care based on the core values of more humanized end-of-life care promoted by palliative care supporters. Similarly, the paper analyzes how these practices are assisted by progress in the medicalization process in which the dimension of care is considered less an unprofessional area of medical practice than an area of care in which specific technical skills and know-how are employed. The articles explores how instead of being divergent, the logic of care and medicalization work in a complementary fashion.
Anderson, Wendy G; Puntillo, Kathleen; Boyle, Deborah; Barbour, Susan; Turner, Kathleen; Cimino, Jenica; Moore, Eric; Noort, Janice; MacMillan, John; Pearson, Diana; Grywalski, Michelle; Liao, Solomon; Ferrell, Bruce; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Mitchell, William; Pantilat, Steven
Successful and sustained integration of palliative care into the intensive care unit (ICU) requires the active engagement of bedside nurses. To describe the perspectives of ICU bedside nurses on their involvement in palliative care communication. A survey was designed, based on prior work, to assess nurses' perspectives on palliative care communication, including the importance and frequency of their involvement, confidence, and barriers. The 46-item survey was distributed via e-mail in 2013 to bedside nurses working in ICUs across the five academic medical centers of the University of California, U.S. The survey was sent to 1791 nurses; 598 (33%) responded. Most participants (88%) reported that their engagement in discussions of prognosis, goals of care, and palliative care was very important to the quality of patient care. A minority reported often discussing palliative care consultations with physicians (31%) or families (33%); 45% reported rarely or never participating in family meeting discussions. Participating nurses most frequently cited the following barriers to their involvement in palliative care communication: need for more training (66%), physicians not asking their perspective (60%), and the emotional toll of discussions (43%). ICU bedside nurses see their involvement in discussions of prognosis, goals of care, and palliative care as a key element of overall quality of patient care. Based on the barriers participants identified regarding their engagement, interventions are needed to ensure that nurses have the education, opportunities, and support to actively participate in these discussions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Duggleby, Wendy; Raudonis, Barbara M
To explore the myths about palliative care and older adults with cancer. Research literature and review articles. Several myths about older adults exist: older adults are the same as younger adults, older adults are all the same, and optimizing function and quality of life are not important outcomes. Little research has focused on older adults receiving palliative care and their families. The Oncology Nursing Society and Geriatric Oncology Consortium published the Joint Position Statement on Cancer Care in Older Adults acknowledging the unique needs of older adults with cancer. Application of this statement may be helpful in guiding inquiry and practice in the care for older adults receiving palliative care.
Palliative care is expanding out of the hospice, and out of the narrow confines of its association with cancer. It should be a part of all care. District nurses are ideally placed to implement and coordinate palliative care in the community, making use of the talents of many other agencies and professionals. However, because of a lack of communication between these agencies, there is confusion about their roles, and many patients may not be receiving optimal care. This article argues that by promoting interagency and interprofessional communication and cooperation, district nurses can strengthen their role at the heart of palliative care provision in the community.
Ingleton, Christine; Gardiner, Clare; Seymour, Jane E; Richards, Naomi; Gott, Merryn
Education and training are seen as 'absolutely essential parts of providing palliative care'. As part of a larger study to explore the extent of palliative care need in two acute hospital settings, we report the perceptions of healthcare professionals regarding their training and educational needs. In Phase 1, we undertook eight focus groups and four individual interviews with 58 health professionals from general practice, specialist palliative care and acute hospitals, exploring perceived education and training priorities. Phase 2 of the study involved a survey of palliative care need at two hospitals in England. Hospital based doctors and nurses completed questionnaires to identify patients with palliative care needs and to respond to questions about their training and education needs. Various barriers exist to the provision and management of palliative care, not least a need for more education and training. Focus group participants felt they were not adequately trained to address prognosis and goals of care with patients and their families. In Phase 2 of the study, 171 nursing staff and 81 medical staff completed the questionnaire and two-thirds of our sample felt they required additional training in palliative care. Although important, the use of standardised care pathways alongside the provision of education and training for healthcare professionals alone will not improve quality of care. More work is needed to examine and clarify the interplay of: behaviour change, setting, the 'cure' orientation approach, type of health professional and nature of any educational intervention in order to effect sustained behavioural change.
In December 2015 two different laws were adopted. Both are of importance for palliative care. One of the laws criminalizes commercial, "business-like" assisted suicide (§ 217 German Criminal Code), the other one aims to improve hospice and palliative care in Germany. Through the latter far-reaching changes in Social Code Books V and XI, as well as of the Hospital Finance Act have been made. This new Act to Improve Hospice and Palliative Care (HPG) focuses, amongst others, on: (a) Better funding of hospice services, by raising the minimum grant for patients in inpatient hospices paid per day by the health insurance funds by about 28.5%, and for outpatient hospice services by about 18%; (b) further development of general outpatient nursing and medical palliative care, and the networking of different service providers; (c) introduction of an arbitration procedure for service provider agreements to be concluded between the health insurance funds and the teams providing specialized home palliative care (SAPV); (d) the right to individual advice and support by the health insurance funds; (e) care homes may offer their residents advance care planning programs to be funded by the statutory health insurers; (f) palliative care units in hospitals can be remunerated outside the DRG system by per diem rates; (g) separate funding and criteria for multi-professional palliative care services within a hospital.While little concrete impact on hospice and palliative care can be expected following the new § 217 German Criminal Code, the HPG provides a good basis to improve care. For this purpose, however, which complementary and more concrete agreements are made to put the new legal regulations into practice will be crucial.
Yoshida, Saran; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Ichikawa, Takayuki; Eguchi, Kenji
This study primarily aimed to identify future actions required to promote palliative care in Japan. The future actions regarded as effective by the general population were "improve physicians' skill in palliative care" (61%), "create a counseling center for cancer" (61%), and "improve nurses' skill in palliative care" (60%). In contrast, future actions regarded as effective by the health care professionals were "set up a Web site that provides information about cancer" (72%), "promote consultation with specialists in palliative care" (71%), and "open an outpatient department specializing in palliative care" (70%). The results suggest (1) development and maintenance of settings; (2) enhancement of palliative care education and training programs for health care providers; and (3) improvement in distributing information about cancer and regional palliative care resources to the general population.
von Plessen, Christian; Nielsen, Thyge L; Steffensen, Ida E; Larsen, Shuruk Al-Halwai; Taudorf, Ebbe
Terminal chronic obstructive pulmonary disease (COPD) and advanced cancer have similar prognosis and symptom burden. However, palliative care of patients with terminal COPD has been neglected in Denmark. We describe the symptoms of terminal COPD and suggest criteria for defining the palliative phase of the disease. Furthermore we discuss the prognostic and ethical challenges for patients, their families and their caregivers. Finally, we summarize the current evidence for palliative treatment of dyspnoea and ways to evaluate response to treatment.
Farber, Eugene W; Marconi, Vincent C
Advances in treatment are contributing to substantial increases in life expectancy for individuals living with HIV, prompting a need to develop care models for the effective management of HIV as a chronic illness. With many individuals continuing to experience symptoms and complications that add to the disease burden across the spectrum of HIV disease, the discussion herein explores the complementary role that early palliative care can play in HIV primary care as a strategy for enhancing long-term quality of life. After first defining the concept of early palliative care, its scope in the context of current clinical realities in HIV treatment and implications for HIV care models is described. After reviewing the emerging extant research literature on HIV palliative care outcomes, a program description is offered as an illustration of how palliative care integration with HIV primary care can be achieved.
Kwekkeboom, Kristine L; Vahl, Cheryl; Eland, Joann
Currently, major deficiencies exist in undergraduate nursing education for end-of-life care. Nursing students report feeling anxious and unprepared to be with patients who are dying. A Palliative Care Companion program that allows undergraduate nursing students to volunteer to spend time with patients at the end of life provides a unique educational opportunity to enhance students' knowledge and attitudes toward palliative care. In addition, the program offers a service to patients and families by providing a nonmedical, caring human presence to patients who may be alone, lonely, or bored. In accordance with tenets of Experiential Learning Theory, a Palliative Care Companion program was developed and revised using feedback from initial participants and facilitators. Data collected during the first two semesters indicated increased knowledge of palliative care, improved attitudes about care at the end of life, and fewer concerns about providing nursing care to dying patients, when participating students were compared to their undergraduate peers.
Morita, T; Chihara, S; Kashiwagi, T
Although satisfaction is an important outcome of medical care, there are no validated tools to quantify family satisfaction with hospital-based palliative care. In this nationwide postal survey, an instrument to measure informal carer satisfaction with an inpatient palliative care service was validated. A 60-item questionnaire was mailed to 1344 bereaved people who had lost their family members at 50 palliative care units in Japan, and 850 responses were analysed (response rate = 64%). The reliability, construct validity, and convergent validity of the scale were examined after the responses were randomly divided into two groups: a training set used in the development phase (n = 500) and a testing set used in the validation phase (n = 350). The number of scale items was reduced from 50 to 34 through psychometric techniques in the development phase. In the testing sample, the overall Cronbach's coefficient alpha for the final 34-item scale was 0.98. A factor analysis revealed that the scale consisted of seven subcategories: Nursing Care, Facility, Information, Availability, Family Care, Cost, and Symptom Palliation. The total score of the scale was significantly correlated with the degree of global satisfaction of the bereaved (Spearman's rho = 0.78). In conclusion, this 34-item scale, the Satisfaction Scale for Family Members Receiving Inpatient Palliative Care (Sat-Fam-IPC), has acceptable psychometric properties and would be a useful tool to measure carer satisfaction with an inpatient palliative care service.
Kahveci, Kadriye; Dinçer, Metin; Doger, Cihan; Yaricı, Ayse Karhan
Traumatic brain injury (TBI), which is seen more in young adults, affects both patients and their families. The need for palliative care in TBI and the limits of the care requirement are not clear. The aim of this study was to investigate the length of stay in the palliative care center (PCC), Turkey, the status of patients at discharge, and the need for palliative care in patients with TBI. The medical records of 49 patients with TBI receiving palliative care in PCC during 2013–2016 were retrospectively collected, including age and gender of patients, the length of stay in PCC, the cause of TBI, diagnosis, Glasgow Coma Scale score, Glasgow Outcome Scale score, Karnofsky Performance Status score, mobilization status, nutrition route (oral, percutaneous endoscopic gastrostomy), pressure ulcers, and discharge status. These patients were aged 45.4 ± 20.2 years. The median length of stay in the PCC was 34.0 days. These included TBI patients had a Glasgow Coma Scale score ≤ 8, were not mobilized, received tracheostomy and percutaneous endoscopic gastrostomy nutrition, and had pressure ulcers. No difference was found between those who were discharged to their home or other places (rehabilitation centre, intensive care unit and death) in respect of mobilization, percutaneous endoscopic gastrostomy, tracheostomy and pressure ulcers. TBI patients who were followed up in PCC were determined to be relatively young patients (45.4 ± 20.2 years) with mobilization and nutrition problems and pressure ulcer formation. As TBI patients have complex health conditions that require palliative care from the time of admittance to intensive care unit, provision of palliative care services should be integrated with clinical applications. PMID:28250751
Bassah, Nahyeni; Seymour, Jane; Cox, Karen
We undertook a modified systematic review of research regarding educational approaches to and effectiveness of pre-registration palliative care nursing, to inform the development of a short course in palliative care for pre-registration nursing students in Cameroon. The aim of this review was to examine educational approaches applied to pre-registration palliative care nursing education and their effectiveness, and to discuss implications for the development of palliative care curricula in resource-poor countries. A modified systematic review of research on palliative care educational interventions, conducted with pre-registration student nurses was undertaken. Relevant literature was gathered from CINAHL, EMBASE, MEDLINE and PsychINFO databases for the period 2000-2013. Inclusion was limited to studies of educational interventions evaluating the effectiveness and outcomes of palliative and end of life care education with pre-registration student nurses. 17 studies were found, all of which were conducted in resource-rich countries: United States of America, Canada, Australia, and United Kingdom. Palliative care nursing education at pre-registration level is either delivered as a discrete course within the curriculum or palliative care content is embedded into other nursing specialty courses throughout the wider curriculum. Palliative care education is delivered to students at a variety of stages in their nursing program, using a mix of both didactic and experiential educational strategies. Course facilitators span palliative care specialists, educators who have attended 'train-the-trainer' courses in palliative care, and nurses with hospice experience. Education is underpinned by transformative and experiential learning theories and reported as effective in improving students' attitudes towards care of the dying. The educational strategies identified in this review may be applicable to resource-poor countries. However, there are challenges in transferability
Humphrey, Lisa; Kang, Tammy I
Children with advanced cancer, including those with hematologic malignancies, can benefit from interdisciplinary palliative care services. Palliative care includes management of distressing symptoms, attention to psychosocial and spiritual needs, and assistance with navigating complex medical decisions with the ultimate goal of maximizing the quality-of-life of the child and family. Palliative care is distinct from hospice care and can assist with the care of patients throughout the cancer continuum, irrespective of prognosis. While key healthcare organizations, including the Institute of Medicine, the American Academy of Pediatrics and the American Society of Clinical Oncology among many others endorse palliative care for children with advanced illness, barriers to integration of palliative care into cancer care still exist. Providing assistance with advance care planning, guiding patients and families through prognostic uncertainty, and managing transitions of care are also included in goals of palliative care involvement. For patients with advanced malignancy, legislation, included in the Patient Protection and Affordable Health Care Act allows patients and families more options as they make the difficult transition from disease directed therapy to care focused on comfort and quality-of-life.
Ghandourh, Wsam A
Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of patients receiving palliative radiation or chemotherapy hold unrealistic hopes of their cancer being cured by such therapies, which can affect their ability to make well-informed decisions about treatment options. This review aimed to explore this discrepancy between patients' and physicians' expectations by investigating three primary issues: (1) the factors associated with patients developing unrealistic expectations; (2) the implications of having unrealistic hopes and the effects of raising patients' awareness about prognosis; and (3) patients' and caregivers' perspective on disclosure and their preferences for communication styles. Relevant studies were identified by searching electronic databases including Pubmed, EMBASE and ScienceDirect using multiple combinations of keywords, which yielded a total of 65 articles meeting the inclusion criteria. The discrepancy between patients' and doctors' expectations was associated with many factors including doctors' reluctance to disclose terminal prognoses and patients' ability to understand or accept such information. The majority of patients and caregivers expressed a desire for detailed prognostic information; however, varied responses have been reported on the preferred style of conveying such information. Communication styles have profound effects on patients' experience and treatment choices. Patients' views on disclosure are influenced by many cultural, psychological and illness-related factors, therefore individuals' needs must be considered when conveying prognostic information. More research is needed to identify communication barriers and the interventions that could be used to increase patients' satisfaction with palliative care.
Soebadi, R D; Tejawinata, S
Indonesia is a large archipelago with an estimated 203,000-365,400 new cancer cases a year. Most cases present in the advanced stage. Pain is the chief complaint in 89% of the patients of the palliative care unit at Dr. Soetomo hospital. The program is a community-based, family-oriented, and culturally adapted home care, widely applicable throughout the country. The service and medication should be affordable, simple, and available. The WHO three-step ladder has been adopted as the method of choice in cancer pain relief. Facilities supportive for the program are the existing health-care delivery system and non-formal support system (Indonesian Cancer Foundation and Organization for Family Welfare Promotion, PKK). The chief constraints for program implementation are the geographical and population problems, lack of resources and funding for the training of health-care workers, and limited availability of oral morphine.
Street, A; Blackford, J
This paper discusses the findings of a critical study that examined the communication patterns between nurses and general practitioners (GPs) providing palliative care in Australia. Interviews and focus groups involved 40 palliative care nurses who worked in the three settings of care: community, hospice and hospital. Issues that impeded effective communication strategies between palliative care nurses and GPs were networking, case management, multiple service providers, lack of standardized documentation and formal tracking of clients, along with difficulties in transmission of relevant practice knowledge. Supporting strategies for effective formal modes of communicating and reporting are described.
Sinclair, Shane; Pereira, Jose; Raffin, Shelley
Research related to spirituality and health has developed from relative obscurity to a thriving field of study over the last 20 years both within palliative care and within health care in general. This paper provides a descriptive review of the literature related to spirituality and health, with a special focus on spirituality within palliative and end-of-life care. CINAHL and MEDLINE were searched under the keywords "spirituality" and "palliative." The review revealed five overarching themes in the general spirituality and health literature: (1) conceptual difficulties related to the term spirituality and proposed solutions; (2) the relationship between spirituality and religion; (3) the effects of spirituality on health; (4) the subjects enrolled in spirituality-related research; and (5) the provision of spiritual care. While the spirituality literature within palliative care shared these overarching characteristics of the broader spirituality and health literature, six specific thematic areas transpired: (1) general discussions of spirituality in palliative care; (2) the spiritual needs of palliative care patients; (3) the nature of hope in palliative care; (4) tools and therapies related to spirituality; (5) effects of religion in palliative care; and (6) spirituality and palliative care professionals. The literature as it relates to these themes is summarized in this review. Spirituality is emerging largely as a concept void of religion, an instrument to be utilized in improving or maintaining health and quality of life, and focussed predominantly on the "self" largely in the form of the patient. While representing an important beginning, the authors suggest that a more integral approach needs to be developed that elicits the experiential nature of spirituality that is shared by patients, family members, and health care professionals alike.
McConnell, Tracey; Porter, Sam
Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation. Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.
Zwerdling, Theodore; Hamann, Kevin; Meyers, Frederick
Historically, the concept of palliative care has been limited to hospice and end-of-life services. Recently, palliative care has been expanded to emphasize its integration throughout an illness. We suggest that palliative care provides an opportunity to prevent illness. Palliative care providers can effectively reduce the risk of illness in families by employing methods and strategies of preventive medicine. We illustrate three such cases. Patients and survivors may benefit from appropriate recognition and referral to prevent potential medical, social, and psychological problems. For preventive medicine to become fully exploited by palliative care providers, curricula will need to be developed. Risk assessment indicators of heritable and acquired conditions will define core functions of this educational process. Relevant topics should encompass basic preventive medicine methods, methods to disseminate assigned risk to the palliative care team, and referral mechanisms to specialists with expertise in the identified area(s) of concern. Opportunities to integrate preventive care into end-of-life services will create a new dimension for comprehensive palliative care.
Wu, Hung-Lan; Volker, Deborah L
This article presents a discussion of the relevance of Humanistic Nursing Theory to hospice and palliative care nursing. The World Health Organization has characterized the need for expert, palliative and end-of-life care as a top priority for global health care. The specialty of hospice and palliative care nursing embraces a humanistic caring and holistic approach to patient care. As this resonates with Paterson and Zderad's Humanistic Nursing Theory, an understanding of hospice nurses' experiences can be investigated by application of relevant constructs in the theory. This article is based on Paterson and Zderad's publications and other theoretical and research articles and books focused on Humanistic Nursing Theory (1976-2009), and data from a phenomenological study of the lived experience of Taiwanese hospice nurses conducted in 2007. Theoretical concepts relevant to hospice and palliative nursing included moreness-choice, call-and-response, intersubjective transaction, uniqueness-otherness, being and doing and community. The philosophical perspectives of Humanistic Nursing Theory are relevant to the practice of hospice and palliative care nursing. By 'being with and doing with', hospice and palliative nurses can work with patients to achieve their final goals in the last phase of life. Use of core concepts from Humanistic Nursing Theory can provide a unifying language for planning care and describing interventions. Future research efforts in hospice and palliative nursing should define and evaluate these concepts for efficacy in practice settings. © 2011 Blackwell Publishing Ltd.
Isaacson, Mary; Karel, Beth; Varilek, Brandon M; Steenstra, Whitney J; Tanis-Heyenga, Jordan P; Wagner, Amanda
Palliative care options are limited for Native Americans (NA) in South Dakota (SD). This exploratory study offers the perspectives of Native and non-Native health care professionals regarding palliative care specific to NAs. Semi-structured interviews were conducted (N = 7) with participants representing NA (4) and non-Native (3) ethnicities. Non-Native participants were practicing health care professionals in palliative medicine, whereas the NA health care professionals had experience with palliative care. Concept analysis revealed two main themes and five subthemes: (a) barriers to palliative care, for example, insufficient funding, lack of infrastructure, and misconceptions; and (b) implementation strategies, for example, openness and listening and creating the right team. Genuine interest and concern exists for the provision of palliative care to NA communities using collaborative and innovative approaches. To address the health disparities of the NA population specific to palliative care, public health policy reform and education for health professionals are necessary. © The Author(s) 2014.
Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J
The International Children's Palliative Care Network held its second international conference on children's palliative care in Buenos Aires, Argentina, from the 18th-21st May 2016. The theme of the conference was 'Children's Palliative Care…. Now!' emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children's palliative care, and hidden aspects of children's palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children's palliative care, genetics, perinatal and neonatal palliative care, the impact of children's palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children's palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The 'Big Debate' explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children's palliative care and participants were continually challenged to ensure that children can access palliative care NOW.
Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J
The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’ emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children’s palliative care, and hidden aspects of children’s palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children’s palliative care, genetics, perinatal and neonatal palliative care, the impact of children’s palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children’s palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The ‘Big Debate’ explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children’s palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193
Wright, David Kenneth; Vanderspank-Wright, Brandi; Holmes, Dave; Skinner, Elise
A movement is underway to promote a palliative approach to care in all contexts where people age and live with life-limiting conditions, including psychiatric settings. Forensic psychiatry nursing-a subfield of mental health nursing- focuses on individuals who are in conflict with the criminal justice system. We know little about the values of nurses working in forensic psychiatry, and how these values might influence a palliative approach to care for frail and aging patients. Interviews with four nurses working on one of two forensic units of a university-affiliated mental health hospital in an urban area of eastern Canada. Three specific values were found to guide forensic nurses in their care of aging patients that are commensurate with a palliative approach: hope, inclusivity, and quality of life. When we started this project, we wondered whether the culture of forensic nursing practice was antithetical to the values of a palliative approach. Instead, we found several parallels between forensic nurses' moral identities and palliative philosophy. These findings have implications for how we think about the palliative approach in contexts not typically associated with palliative care, but in which patients will increasingly age and die.
McCaffrey, Nikki; Agar, Meera; Harlum, Janeane; Karnon, Jonathon; Currow, David; Eckermann, Simon
The aim of this study was to evaluate the cost-effectiveness of a home-based palliative care model relative to usual care in expediting discharge or enabling patients to remain at home. Economic evaluation of a pilot randomised controlled trial with 28 days follow-up. Mean costs and effectiveness were calculated for the Palliative Care Extended Packages at Home (PEACH) and usual care arms including: days at home; place of death; PEACH intervention costs; specialist palliative care service use; acute hospital and palliative care unit inpatient stays; and outpatient visits. PEACH mean intervention costs per patient ($3489) were largely offset by lower mean inpatient care costs ($2450) and in this arm, participants were at home for one additional day on average. Consequently, PEACH is cost-effective relative to usual care when the threshold value for one extra day at home exceeds $1068, or $2547 if only within-study days of hospital admission are costed. All estimates are high uncertainty. The results of this small pilot study point to the potential of PEACH as a cost-effective end-of-life care model relative to usual care. Findings support the feasibility of conducting a definitive, fully powered study with longer follow-up and comprehensive economic evaluation.
Stöckle, Helena S; Haarmann-Doetkotte, Sigrid; Bausewein, Claudia; Fegg, Martin J
Existential behavioural therapy (EBT) is a recently developed intervention to support informal caregivers of patients in a specialist palliative care unit and was initially established as a six-session group programme. This pilot study aimed to test the feasibility and acceptability of an adapted short-term, individual approach of EBT in preparation for a randomized controlled trial (RCT). The study was conducted in a prospective, mixed methods design including four quantitiative assessments with embedded qualitative interviews at one assessment. The intervention offered two one-hour therapeutic sessions focusing on (1) mindfulness and (2) existential meaning-in-life as a source of strength provided by a trained psychotherapist. To test the feasibility of the intervention, doubling of the participation rate, compared to the previous group study (13,6 %) as well as an attrition rate of less than 30 % were set as thresholds. To test the acceptability of the intervention, self-rated usefulness of individual aspects of the intervention and the frequency of implementing therapeutic elements by the carers were set as criteria. Acceptability testing also included the number of participants who completed both sessions, where we expected more than 75 % as a criterion for acceptability. Return rates of quantitative questionnaires were set as criteria for the feasibility of data collection (<33 % loss expected within the study period). Qualitative interviews were used to collect additional data on feasibililty and acceptability and to explore potential harms and benefits of the intervention. 44/102 (43,1 %) of eligible informal caregivers agreed to participate in the study. Due to attrition of 13 caregivers (attrition rate: 29,5 %), 31 caregivers were included in the trial. Self-rated usefulness showed sufficiant results for all but one individual aspect. Frequency of implementing therapeutic elements showed wide inter-item as well as inter-participant ranges and
Insomnia among patients with advanced disease during admission in a Palliative Care Unit: a prospective observational study on its frequency and association with psychological, physical and environmental factors
Background The aims of this study were: 1) to assess the frequency of insomnia among patients during admission in a Palliative Care Unit (PCU); 2) to study the association between emotional distress and insomnia, taking physical, environmental and other psychological factors into account. Methods Prospective observational study including patients consecutively admitted to a PCU during eight months, excluding those with severe cognitive problems or too low performance status. Insomnia was assessed by asking a single question and by using the Sleep Disturbance Scale (SDS), and emotional distress using the Hospital Anxiety and Depression Scale (HADS). Physical, environmental and other psychological factors potentially interfering with sleep quality were evaluated. Association between insomnia and the factors evaluated was studied using univariate and multivariate regression analyses. Results 61 patients were included (mean age 71.5 years; 95% with oncological disease); 38 (62%) answered “yes” to the insomnia single question and 29 (47%) showed moderate to severe insomnia according to the SDS. 65% showed clinically significant emotional distress and 79% had nocturnal rumination. The physical symptoms most often mentioned as interfering with sleep quality were pain (69%) and dyspnoea (36%). 77% reported at least one environmental disturbance. In the univariate analysis, answering “yes” to the insomnia single question was significantly associated with higher HADS score, anxiety, nocturnal rumination, clear knowledge of the diagnosis, higher performance status and dyspnoea; moderate to severe insomnia was significantly associated with nocturnal rumination, higher performance status, environmental disturbances and daytime sleepiness. In the multivariate regression analysis, answering “yes” to the single question was associated with dyspnoea (OR 7.2 [1.65-31.27]; p = 0.009), nocturnal rumination (OR 5.5 [1.05-28.49]; p = 0.04) and higher performance
Hatton, Ian; McDonald, Keith; Nancarrow, Lynette; Fletcher, Keith
In September 2000 the Commonwealth released, as part of its National Palliative Care Strategy under the Australian Health Care Agreements, a National Framework for Palliative Care Service Development. The new National Framework stressed an important set of values to guide models of palliative care delivery. It notes that the challenge is to secure the place of palliative care as an integral part of health care across Australia, routinely available within local communities to those people who need it. Care and support for people who are dying and their families need to be built not only into health care services, but also into the fabric of communities and their support networks. While few would disagree with this, little is known about how best to achieve it in rural Australia. The Griffith Area Palliative Care Service (GAPS) is a two-year pilot project delivering a palliative care service through a truly integrated approach to care for patients, their carers and families within the Griffith Local Government Area and Carrathool Shire areas. This paper describes how GAPS is successfully meeting the challenges of service provision to rural and remote areas.
Hudson, Peter; Street, Annette; Graham, Suzanne; Aranda, Sanchia; O'Connor, Margaret; Thomas, Kristina; Jackson, Kate; Spruyt, Odette; Ugalde, Anna; Philip, Jennifer
The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration. Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research. Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan. The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.
Itch/pruritus can be very distressing in palliative care population and often is difficult to treat. Conventional antihistamines lack efficacy. Cutaneous and central pathogenesis of itch is extremely complex and unclear, making its treatment challenging. Neuronal mechanisms have been identified in the pathophysiology of itch hence providing a myriad of therapeutic options. It has been established that pruritus and pain neuronal pathway interact with each other, hence neuropathic analgesics like gabapentin has shown to be efficacious antipruritic therapeutic option. Gabapentin impedes transmitting nociceptive sensations to brain, thus also suppressing pruritus. Gabapentin is safe and found to be effective in uremic pruritus, cancer/hematologic causes, opiod-induced itch, brachioradial pruritis, burns pruritus, and pruritus of unknown origin. Further research is required in this area to establish whether gabapentin is consistently effective.
Doré-Pautonnier, Delphine; Baussant-Crenn, Camille; Frattini, Marie-Odile; Mino, Jean-Christophe; Rennesson, Marina
The French National Palliative Care Resource Centre (CNDR) provides people impacted by the end of life, death and bereavement with a range of constantly evolving services. Spreading the palliative approach in order to enable everyone to benefit from it and appropriate it constitutes the main mission of the CNDR.
Civetta, J M
In the area of end-of-life bioethical issues, patients, families, and health care providers do not understand basic principles, often leading to anguish, guilt, and anger. Providers lack communication skills, concepts, and practical bedside information. Linking societal values of the sanctity of life and quality of life with medical goals of preservation of life and alleviation of suffering respectively provides an essential structure. Medical care focuses on cure when possible but when the patient is dying, the focus switches to caring for patients and their families. Clinicians need to learn how to balance the benefits and burdens of medications and treatments, control symptoms, and orchestrate withdrawal of treatment. Finally, all need to learn more about the dying process to benefit society, their own families, and themselves.
Krakauer, Eric L; Ngoc, Nguyen Thi Minh; Green, Kimberly; Van Kham, Le; Khue, Luong Ngoc
Vietnam is struggling to meet the growing need for both disease-modifying and palliative care for people with life-threatening chronic diseases such as HIV/AIDS and cancer. Recently, Vietnam initiated rapid development of a national palliative care program for HIV/AIDS and cancer patients that builds on existing palliative care programs and experience and integrates palliative care into standard HIV/AIDS and cancer care. National palliative care guidelines have been issued by the Ministry of Health based on a rapid situation analysis. Plans now call for review and revision of opioid laws and regulations to increase availability of opioids for medical use, training in palliative care for clinicians throughout the country, and development of palliative care programs both in the community and in inpatient referral centers.
McClement, Susan E; Care, Dean; Dean, Ruth; Cheang, Mary
Our study was an evaluation of a pilot course in palliative nursing care designed to improve practising nurses' knowledge regarding cancer pain management and attitudes toward care of the dying patient. The course involved 12 weeks (36 hours) of systematic classroom instruction for registered nurses, and a one-day observational experience on a designated palliative care unit. A total of 16 nurses participated in the study. A repeated measures design was used to evaluate the effectiveness of the course. Attitudes toward care of the dying patient and his/her family were also evaluated. Results showed that nurses' attitudes improved significantly from Time 1 (first day of course) to Time 2 (last day of course) (p=0.0007), and that this improvement was maintained at Time 3 (three months later) (p=0.064). The observational experience on a palliative care unit held in conjunction with the course was reported to be helpful to students in consolidating theoretical instruction.
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. PMID:9676548
Breen, Lauren J; Aoun, Samar M; O'Connor, Moira; Rumbold, Bruce
A review of palliative care policies and bereavement support practices in the United States, Canada, United Kingdom, Australia, and Japan demonstrated 4 challenges: questions over providing universal versus targeted support; a lack of clear evidence driving service delivery; informal or no risk assessment; and limited or no evaluation of services. Bridging the gaps between the policy and practice of palliative care bereavement support requires acknowledging the challenges of medical and public health models, improving bereavement need assessment processes, enhancing the role of primary care providers, and extending research to provide an evidence-base for interventions.
Floriani, Ciro Augusto; Schramm, Fermin Roland
Palliative care, a model in end-of-life care, is currently undergoing expansion in Brazil. This article emphasizes the need to implement palliative care in primary health care, with an important role in end-of-life care, especially in areas without specialized palliative-care teams. The article discusses key aspects in the organization of this treatment modality and analyzes how palliative care could and should be implemented within primary health care in Brazil. The article describes several challenges for health teams to provide such care, related to the primary caregiver, inherent ethical conflicts, and human resource allocation.
Martins Pereira, Sandra; Hernández-Marrero, Pablo
Making palliative care accessible to all citizens who are in need of this type of care requires effective policies and education. Moreover, healthcare professionals have an ethical and legal responsibility to ensure quality palliative care. Nevertheless, palliative care has had traditionally a limited emphasis in healthcare professionals' undergraduate education. To study the current status of palliative care education in nursing undergraduate curricula and compare 2005 and 2015 findings. An online survey was sent to all state schools providing nursing undergraduate education in Portugal (N = 21). The survey assessed if and how palliative care was included in the curricula, and whether or not national and international recommendations for palliative care nursing education were followed. Further analysis included the content of available curricula/syllabi. A total of 19 schools completed the survey (90% of response rate). These institutions are geographically dispersed and representative of state nursing educational institutions in Portugal. In 2015, all participant schools integrated palliative care in their curricula; nine schools had palliative care as an independent curricular unit (an 800% increase compared to 2005). While in 2005, only 14 out of 23 (61%) schools included palliative care explicitly in their curricula; in 2015, all 19 participant schools did so. National and international recommendations were followed. The inclusion of palliative care within nursing undergraduate curricula strongly increased from 2005 to 2015. Further research is needed to understand the contribution of education in the access, care provision, quality and development of palliative care in this country. © The Author(s) 2016.
Schiffman, Joshua D; Chamberlain, Lisa J; Palmer, Laura; Contro, Nancy; Sourkes, Barbara; Sectish, Theodore C
The Pediatric Palliative Care Curriculum (PPCC) was introduced as a pilot study in response to the published need for increased pediatric education in end-of-life (EOL) care. The PPCC was designed to better train residents in EOL issues so they could become more comfortable and knowledgeable in caring for children and adolescents with life-threatening illnesses. The PPCC consisted of six hour-long sessions run by a clinical psychologist, a licensed social worker, and faculty with experience in EOL care. The curriculum repeated every 6 weeks for 1 year. Residents in the training program at Stanford University rotating through oncology, pulmonology, and pediatric intensive care unit (PICU) were invited to attend. Session topics included: (1) personal coping skills, (2) being a caring professional, (3) recognizing cultural and familial differences, (4) pain management, (5) practical issues, and (6) meeting a bereaved parent. Pretest and posttest surveys with five-point Likert scale questions were used to measure curricular impact. Statistically significant improvement was found in resident self-report of: feeling prepared to initiate do-not-resuscitate discussions (p = 0.001), access to nonpharmacologic pain resources (p = 0.005), exposure to role models who balance medical professionalism and expression of grief (p = 0.005), ability to address dying patient anxiety (p = 0.01), administer pain medications (p = 0.01), initiate organ donation discussions (p = 0.05), and discuss transition from curative to palliative care (p = 0.05). Survey ratings for the following topics were unchanged: "expression of grief is unprofessional" and "residency stress prohibits the processing of and coping with grief." Pediatric residents who participated in this pilot study felt they learned important skills in pediatric EOL care and enhanced their confidence in their ability to care for dying patients and their families. Interventions like the PPCC may be useful at other
Chin, Loh Ee; Loong, Lam Chee; Ngen, Chin Cheuk; Beng, Tan Seng; Shireen, Chin; Kuan, Wong Sook; Shaw, Rosalie
Good communication is essential but sometimes challenging in pediatric palliative care. We describe 3 cases whereby miniature chairs made of various materials and colors were used successfully to encourage communication among pediatric patients, family, and health care professionals. This chair-inspired model may serve as a simple tool to facilitate complex discussions and to enable self-expression by children in the pediatric palliative care setting. © The Author(s) 2013.
Davison, Jennifer; Schenker, Yael; Donovan, Heidi; Rosenzweig, Margaret
Most cancer care occurs within infusion rooms at ambulatory cancer centers, which are staffed by RNs administering chemotherapies and other cancer care medications. Many patients receiving these therapies have basic palliative care needs that could be addressed by the RNs. However, the extent to which these RNs spend their time on basic, or "primary," palliative care is unknown. The aim of this project was to conduct a work sampling assessment of infusion room RNs' work activities and provision of primary palliative care. A single observer conducted direct observation work sampling at three academic cancer center infusion rooms. Nursing tasks were recorded via freehand text and later assigned an appropriate task code. Observed infusion room RNs spent about 1% of their time on direct care palliative care tasks, primarily symptom assessment. The remainder of their time was divided among direct (28%) and indirect (56%) nonpalliative care activities, unit-related activities (7%), and personal time (9%). Infusion room RNs spent less than a third of their time on administering direct patient care and very minimal time on performing palliative care activities.
García-Salido, Alberto; Santos-Herranz, Paula; Puertas-Martín, Verónica; García-Teresa, María Ángeles; Martino-Alba, Ricardo; Serrano-González, Ana
The creation of paediatric palliative care units (PPCU) could optimise the management of children with palliative focus after admission to a paediatric intensive care unit (PICU). This study describes the clinical and epidemiological characteristics of children referred from PICU to the UCPP of the Autonomous Community of Madrid (CAM). The overall treatment, relapses, re-admissions, and deaths, if occurred, are described. A retrospective review was performed using the medical records from children transferred from the CAM paediatric intensive care units to the paediatric palliative care unit (1 March 2008-31 January 2015). A total of 41 patients were included (26 male/15 female) with a median age of 33 months (range 1-228). In the follow by the UCPP follow-up, the main approaches were respiratory (invasive ventilation with tracheostomy tube 8/41), nutritional (gastrostomy in 20/41), and pharmacological (anti-epileptics in 29/41 and 34/41 on antibiotic treatment). Hospital re-admission was required by 11/41 patients, with no re-admissions to PICU. Of the 13/41 patients who died, 9/13 was at home, with all of them accompanied by the primary caregivers and family, and only 1/9 with the presence of the home team. The palliative approach at home is feasible in children, and the integration of UCPP could optimise the comprehensive care of previously critically ill children. It is necessary to achieve an optimal domiciliary care should be achieved, and not just because of patient death. More observational, multicentre and prospective studies are needed to confirm these findings. Copyright © 2016. Publicado por Elsevier España, S.L.U.
Legalisation of physician-assisted dying (PAD) remains a highly contested issue. In the Australasian context, the opinion and perspective of palliative care specialists have not been captured empirically, and are required to inform better the debate around this issue, moving forward. To identify current attitudes and experiences of palliative care specialists in Australasia regarding requests for physician-assisted suicide and voluntary euthanasia, and to capture the opinion of palliative care specialists on the legalisation of these practices in the Australasian context. An anonymous, cross-sectional, online survey of Australasian specialists in palliative care, addressing the following six areas: (i) demographics; (ii) frequency of requests, and response given; (iii) understanding of the term 'voluntary euthanasia'; (iv) opinion regarding legalisation of physician-assisted suicide and voluntary euthanasia in Australasia, and willingness to participate if legal; (v) identification of the most important values guiding this opinion; and (vi) anticipated impact that legalisation of assisted death would have on palliative care practice. Important findings include: (i) palliative care specialists are largely opposed to the legalisation of PAD; (ii) the proportional titration of opioids is not understood by any palliative care specialist studied to be 'voluntary euthanasia'; and (iii) there is a wide variation in frequency of requests, and one-third of palliative care specialists express discomfort in dealing with requests for assisted suicide or euthanasia. Key areas for future research at the interface between PAD and best practice end-of-life care are identified, including exploration into why palliative care specialists are largely opposed to PAD, and consideration of the impact 'the opioid misconception' may have on the literature informing this debate. © 2016 Royal Australasian College of Physicians.
Porstner, Dagmar; Masel, Eva K; Heck, Ursula
The main task of palliative care specialists is to focus on symptom control such as pain, nausea or fatigue. Thorough anamnesis, physical examination, laboratory examination, and differential diagnosis can ensure appropriate treatment. In an increasing number of cases psychiatric conditions like depression or anxiety increase also occur so palliative care physicians need to be more prepared to handle them. The question of this case report is, how a palliative care specialist can distinguish between a malignant disease or neurological disease progression and a presentation primarily psychiatric in etiology, as is the case in factitious disorders. We are also interested in the incidence rate of such factitious disorders. Our case study demonstrates that it is rare but not impossible that a doctor will encounter factitious symptoms in the palliative setting. This suggest being aware of evidence of psychiatric origins even in discharge letters and referrals that indicate palliative care needs, to ensure that palliative care really is the best treatment option for the patient. We do believe such cases to be rare in a palliative setting, however.
Richfield, Edward W; Jones, Edward J S; Alty, Jane E
Parkinson's disease is a common, life-limiting, neurodegenerative condition. Despite calls for improved access to palliative care for people with Parkinson's disease, services have been slow in developing. Obstacles include poor understanding and recognition of palliative care needs, the role for specialist palliative care services and an agreed structure for sustainable palliative care provision. To summarise the evidence base for palliative care in Parkinson's disease, linking current understanding with implications for clinical practice and identifying areas for future research. Convention recognises a final 'palliative phase' in Parkinson's disease, while qualitative studies suggest the presence of palliative care need in Parkinson's disease from diagnosis. Clinical tools to quantify palliative symptom burden exist and have helped to identify targets for intervention. Dementia is highly prevalent and influences many aspects of palliative care in Parkinson's disease, with particular implications for end-of-life care and advance care planning. The 'palliative phase' represents a poor entry point for consideration of palliative care need in Parkinson's disease. An alternative, integrated model of care, promoting collaboration between specialist palliative and neurological services, is discussed, along with some specific palliative interventions. WHAT IS UNKNOWN: Limited evidence exists regarding timing of palliative interventions, triggers for specialist referral and management of terminal care. Research examining access to palliative care and management of terminal symptoms will assist development of sustainable, integrated palliative care services for Parkinson's disease.
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
Introduction: EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. Context: This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. Aims: EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or
Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert
The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize
Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert
The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize
Thompson, Edward H.
Examined sociodemographic background, nursing unit, amount of experience caring for dying patients, death anxiety, and attitudes toward working with dying patients among 56 nurses in palliative, surgical, and pediatric services. Work setting was found to be a more significant force in shaping attitudes toward caring for the dying than was…
Jamwal, Nisha Rani; Kumar, Senthil P
Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps) in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers’ necessities and patients’ biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care. PMID:26962291
Intensive care medicine and palliative care medicine were considered for a long time to be contrasting concepts in therapy. While intensive care medicine is directed towards prolonging life and tries to stabilize disordered body functions, palliative care medicine is focused upon the relief of disturbances to help patients in the face of death. Today both views have become congruent. Palliative aspects are equally important in curative therapy. In the course of illness or in respect of the patient's will, the aim of therapy may change from curative to palliative. Two examples are presented to illustrate the ethical challenges in this process. They follow from the medical indication, attention to the patient's will, different opinions in the team, truth at the bedside and from what must be done in the process of withdrawing therapy.
Sakuyama, Toshikazu; Komatsu, Kazuhiro; Inoue, Daisuke; Fukushima, Osamu
In order to support the home palliative care learning, we made the eLearning service for home palliative care (beta version) and tried to teach the palliative care to the medical staffs in the community. The various learners (such as nurses, pharmacists and the like) accessed to the online learning and used this eLearning service. After the learners finished eLearning for home palliative care, some questionnaires were distributed to the learners and analyzed by us. The analysis of questionnaires revealed that almost all were satisfied with our eLearning services. Especially the learners were not only interested in using the skills of opioids and the management of pain control, but they had a good cognition for the usage of opioids.
Wilcox, Sarah K
Patients with Parkinson's disease have an illness which shortens their life and involves a heavy symptom burden for patient and carer. This article discusses some common palliative care issues pertinent to patients with Parkinson's disease.
Mol, Rani P
The palliative doctor gives the 'touch of God' as he/she takes care of the terminally ill patient. The oncologist encounters great difficulties in managing oral cavity problems of these patients. A trained dental doctor can help other doctors in dealing with these situations. But the general dental surgeon does not have enough idea about his part in these treatments. The community is also unaware of the role that a nearby dentist can play. Adequate training programs have to be conducted and awareness has to be created. A trained dentist will be a good team mate for the oncologist or radiotherapist or other doctors of the palliative care team. In this paper, a brief attempt is made to list a few areas in which a palliative care dentist can help other members of the palliative care team and also the patient in leading a better life.
Carter, Brian S
Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia.
This study reports data gathered via extensive interviews with some of the leading authorities on the euthanasia policy that were conducted in the Netherlands. They were asked: It has been argued that the policy and practice of euthanasia in the Netherlands is the result of undeveloped palliative care. What do you think? I also mentioned the fact that there are only a few hospices in the Netherlands. The responses were different and contradictory. Many interviewees agreed with the statement. Almost all of those agreeing with it said that only during the late 1990s were people beginning to admit that there was a need to improve palliative care. Some interviewees insisted that doctors first need to explore other options for helping the patient prior to choosing the course of euthanasia. Other interviewees thought that palliative care is well developed in the Netherlands and that euthanasia has actually paved the way for calling more attention to palliative care.
Patients receiving palliative care experience extreme vulnerability reminding them of the fragility of their human condition. How are they to trust nurses bearing bad news in these crucial moments? Trust is built on team coherence and rigorous support.
Glare, P A
The World Health Organisation estimates that over 1.5 million human immunodeficiency virus (HIV) infections have occurred to date in South and South East Asia. As most of these patients will develop acquired immunodeficiency syndrome (AIDS) in the coming decade, health services in the region face a major challenge in meeting their needs. While treatments are available which prolong the lives of patients with AIDS, most will eventually die of their disease, and attention needs to be given to controlling pain and other symptoms and improving quality of life. Providing palliative care for patients with AIDS raises complex issues not normally encountered in traditional palliative care practice. Based on the author's experience with the Central Sydney Area Palliative Care Service in Sydney, Australia, this paper discusses the problems and practicalities involved in palliative care for adult patients with advanced AIDS, such as clinical decision making, pain and other symptom control, psychosocial issues and terminal care. Representative case histories are described to illustrate how the palliative care physician can start to approach some of the dilemmas created by this demanding yet growing area of palliative care.
THE BIRTH OF THE DUTCH LAW: Euthanasia has been recently legalized in the Netherlands (since April 1, 2002). In this Article, we present the various cultural and historical factors that contributed to the law, the guidelines for the procedure and the resulting controversy. THE INTERVENING FACTORS: Internationally, the attitude concerning end of life care are heterogenic and also directly depend on religious and cultural factors. In the Netherlands, the health system promotes the maintenance at home of the terminally ill. However, the financial aspects (private health insurance) interact with the management of these patients. The rules for euthanasia are very strict and a declaration must be registered. Dedicated commissions are organised to control that the rules are applied. The current debate concerns the pertinence of the regulations, the attitude towards handicapped people and children, and the need to develop palliative care. The latter have only recently been developed in the country. The priority is focusing on old peoples' homes. The Netherlands is slow in this regard, but a new draft law is soon to be presented to the Authorities, and will most probably enable the gaps to be bridged.
Morita, Tatsuya; Fujimoto, Koji; Imura, Chizuru; Nanba, Miki; Fukumoto, Naoko; Itoh, Tomoko
Knowledge and skill deficits about palliative care in medical professionals are among the most common barriers to quality palliative care. This study in a Japanese regional cancer center was conducted to clarify nurses' self-reported practices, confidence, and knowledge, and the changes in these parameters after the 1-year educational and clinical activity of a palliative care team. Questionnaires were distributed to 134 nurses before and after a palliative care team conducted 6-topic educational programs and clinical consultation activity throughout the year. The nurses were asked to report their practices, confidence, and knowledge about palliative care in 5 fields (pain, dyspnea, delirium, communication, and dying-phase). In some areas of palliative care, hospital nurses did not adhere to recommended practices, had knowledge deficits, and were not generally confident with palliative care practices. However, daily palliative care team activities, including educational programs and clinical consultation service, could improve their practice and knowledge levels.
... quality of life. Palliative care is different from hospice care. Palliative care is available to you at any ... include: • Will I have to give up my primary health care provider? • What do I say if ...
Collaborations in palliative care have helped to create a framework and identify preferred practices so the field of palliative care can grow. Teamwork designed in a transdisciplinary style is desired and provides whole-person, sensitive, and comprehensive care. In applying the basic key concepts and evidenced-based knowledge of palliative care, this article details one palliative care department's effort to create change, enhance the delivery of care, and build their palliative care practice. Creating collaborations and building partnerships were fundamental outcomes to improve the palliative care practice, increase transdisciplinary teamwork activities, and enhance the delivery of care in this organization.
Gelfman, Laura P; Kavalieratos, Dio; Teuteberg, Winifred G; Lala, Anuradha; Goldstein, Nathan E
Heart failure (HF) is a chronic and progressive illness, which affects a growing number of adults, and is associated with a high morbidity and mortality, as well as significant physical and psychological symptom burden on both patients with HF and their families. Palliative care is the multidisciplinary specialty focused on optimizing quality of life and reducing suffering for patients and families facing serious illness, regardless of prognosis. Palliative care can be delivered as (1) specialist palliative care in which a palliative care specialist with subspecialty palliative care training consults or co-manages patients to address palliative needs alongside clinicians who manage the underlying illness or (2) as primary palliative care in which the primary clinician (such as the internist, cardiologist, cardiology nurse, or HF specialist) caring for the patient with HF provides the essential palliative domains. In this paper, we describe the key domains of primary palliative care for patients with HF and offer some specific ways in which primary palliative care and specialist palliative care can be offered in this population. Although there is little research on HF primary palliative care, primary palliative care in HF offers a key opportunity to ensure that this population receives high-quality palliative care in spite of the growing numbers of patients with HF as well as the limited number of specialist palliative care providers.
There has been much written to support music therapy as an adjunct in managing pain and anxiety in palliative care patients in Western societies, but little written on its use in developing countries. In light of increasing numbers of terminally ill patients in Tanzania owing to HIV/AIDS and cancer, limited access to opioids, and a growing interest in palliative care support, this study looks at the application of music in this context. The study reviews the history and principles of therapeutic music and outlines its role in palliative care. A qualitative study was conducted by questionnaire of 17 professionals involved in home-based palliative care in Tanzania. Findings include beliefs about the power of music, how music is being used to bring comfort to the dying patient, and the most important aspects of helpful music to many Tanzanian palliative care patients. Music can powerfully affect body, mind and spirit. It is vocal music, which is an accepted therapeutic music tool used to bring comfort to the palliative care patient and their family members. Finally, music is an active and participatory activity in Tanzanian culture, even for the dying.
van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Sommerbakk, Ragni; Moyle, Wendy; Hjermstad, Marianne J; Leppert, Wojciech; Vissers, Kris; Engels, Yvonne
The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care. Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy. From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies). This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care.
Ahsberg, Elizabeth; Carlsson, Maria
Despite increasing international interest in palliative care, little focus has been given to the role of nursing assistants, nor to research on existential issues. To investigate nursing assistants' experiences of existential issues in palliative care. An explorative study using focus group discussions as data. Seven nursing assistants working in a palliative care unit and a nursing home participated on three occasions. Data were analysed using a content analysis approach. Two overlapping domains were extracted: practical care, interpreted in themes as meeting others, the patient's body and organisational boundaries; and existential issues, interpreted as the difficult part, the valuable part and death and dying. Communication seemed to be a theme central to both domains. The results indicate that nursing assistants may give existential support in addition to practical aspects of care. The intimate interactions inherent in practical aspects of personal care create opportunities for meaningful conversations. Such conversations may constitute existential support for patients and a meaningful task for staff. © 2013 John Wiley & Sons Ltd.
Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil
Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team. PMID:22203878
Holden, J D
To document the delivery and outcome of palliative care in one practice. All appropriate deaths were documented over the period of the study. One general practice of four doctors caring for 8000 patients in the North-West of England. All patients dying of malignant disease which had included a palliative phase of at least one week. Place of death; continuity of care; general practitioners' assessment of symptom relief; follow-up of bereaved relatives. 118 deaths from terminal malignant disease were recorded over eight years in my practice. 75% were being cared for by us (GPs) at the time of death. More detailed information was recorded on 64 of these patients showing generally "satisfactory" care. A simple audit can help maintain high standards of palliative care. General practitioners are encouraged to maintain registers of the care received by terminally-ill patients as an aid to quality assurance in this area.
Barawid, Edward; Covarrubias, Natalia; Tribuzio, Bianca; Liao, Solomon
Palliative care requires an interdisciplinary team approach to provide the best care for patients with life-threatening illnesses. Like palliative medicine, rehabilitation also uses an interdisciplinary approach to treating patients with chronic illnesses. This review article focuses on rehabilitation interventions that can be beneficial in patients with late stage illnesses. Rehabilitation may be useful in improving the quality of life by palliating function, mobility, activities of daily living, pain relief, endurance, and the psyche of a patient while helping to maintain as much independence as possible, leading to a decrease in burden on caregivers and family. Rehabilitative services are underutilized in the palliative care setting, and more research is needed to address how patients may benefit as they approach the end of their lives.
Dwyer, Justin; Taylor, Keryn; Boughey, Mark
Patients who articulate their psychological distress primarily through physical symptoms (referred to as medically unexplained symptoms (MUS)) pose a challenge to the skills of most clinicians, including palliative care physicians. The philosophical underpinnings of palliative care with a stated focus on symptom management and care of the person in their psychosociospiritual context lend itself to the care of these patients. The aim of this study was to investigate the characteristics to improve identification of this patient group within palliative care. Here, we report a case series of 6 patients with severe MUS who were referred to palliative care. We use illustrative case vignettes, examine clinical and demographic characteristics and review the perspectives of the multidisciplinary team to identify the common threads. This case series highlights the complexities and challenges that are inherent in providing assessment and care for patients with MUS that present to palliative care. Characteristics that were identified included the clustering of 'trigger' symptoms, backgrounds of multiple chronic illnesses and relationship dysfunction. Patient outcomes in this group were universally poor, including the death of 2 patients. Knowledge of this patient group is vital given the likely increase in prevalence of MUS as palliative care broadens its focus earlier in the trajectory of illness. The strengths of palliative care, including psychosociospiritual assessment, multidisciplinary input and communication skills holds the potential to accurately identify patients with MUS and allow the opportunity for specialist psychiatric input with the hope of improving outcomes for patients and their families. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Yamaguchi, Takashi; Kuriya, Meiko; Morita, Tatsuya; Agar, Meera; Choi, Youn Seon; Goh, Cynthia; Lingegowda, K B; Lim, Richard; Liu, Rico K Y; MacLeod, Roderick; Ocampo, Rhodora; Cheng, Shao-Yi; Phungrassami, Temsak; Nguyen, Yen-Phi; Tsuneto, Satoru
Although palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated. This survey aimed to clarify the current status of palliative care in the Asia-Pacific region. Questionnaires were sent to a representative physician of each member country/region of the Asia Pacific Hospice Palliative Care Network (APHN). The questionnaire examined palliative care service provision, information regarding physician certification in palliative care, the availability of essential drugs for palliative care listed by the International Association for Hospice and Palliative Care (IAHPC) and the regulation of opioid-prescribing practice. Of the 14 member countries/regions of the APHN, 12 (86%) responded. Some form of specialist palliative care services had developed in all the responding countries/regions. Eight member countries/regions had physician certifications for palliative care. Most essential drugs for palliative care listed by the IAHPC were available, whereas hydromorphone, oxycodone and transmucosal fentanyl were unavailable in most countries/regions. Six member countries/regions required permission to prescribe and receive opioids. The development of palliative care is in different stages across the surveyed countries/regions in the Asia-Pacific region. Data from this survey can be used as baseline data for monitoring the development of palliative care in this region. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Fitch, Margaret I.; DasGupta, Tracey; Ford, Bill
Caring for individuals at the end of life in the hospital environment is a challenging proposition. Understanding the challenges to provide quality end of life care is an important first step in order to develop appropriate approaches to support and educate staff members and facilitate their capacity remaining “caring.” Four studies were undertaken at our facility to increase our understanding about the challenges health professionals experience in caring for patients at end of life and how staff members could be supported in providing care to patients and families: (1) In-depth interviews were used with cancer nurses (n = 30) to explore the challenges talking about death and dying with patients and families; (2) Surveys were used with nurses (n = 27) and radiation therapists (n = 30) to measure quality of work life; (3) and interprofessional focus groups were used to explore what it means “to care” (five groups held); and (4) interprofessional focus groups were held to understand what “support strategies for staff” ought to look like (six groups held). In all cases, staff members confirmed that interactions concerning death and dying are challenging. Lack of preparation (knowledge and skill in palliative care) and lack of support from managers and colleagues are significant barriers. Key strategies staff members thought would be helpful included: (1) Ensuring all team members were communicating and following the same plan of care, (2) providing skill-based education on palliative care, and (3) facilitating “debriefing” opportunities (either one-on-one or in a group). For staff to be able to continue caring for patients at the end of life with compassion and sensitivity, they need to be adequately prepared and supported appropriately. PMID:27981141
Liberman, D B; Song, E; Radbill, L M; Pham, P K; Derrington, S F
Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Initiating palliative care services in the outpatient primary care setting is
Frist, William H; Presley, Martha K
There is a common misperception that palliative care is just another term for hospice care. Although it includes hospice, palliative care is also the long-term coordinated care of the chronically ill, which is delivered at a cost savings. Why does it matter that the average American understand what palliative care means? Because the evidence shows that U.S. patients near the end of life are spending exorbitant amounts of money on health care they do not want and the country cannot afford. To better understand why palliative care is an important issue in the current debate about health care reform, the authors first briefly review landmark legal cases in the area of end-of-life care. They then discuss the role of palliative care in conversations in the current health care climate and conclude by emphasizing the importance of integrating palliative care into the standard medical curriculum. The authors predict that palliative care will be accepted in the United States as a much-needed and desirable field of medicine. Getting there, however, will require a multifaceted approach including payment reform, encouraging an open conversation among the U.S. public, and training physicians to offer the best possible care and guidance until a patient's last breath.
Mertnoff, Rosa; Vindrola-Padros, Cecilia; Jacobs, Mariana; Gómez-Batiste, Xavier
The Latin American Association for Palliative Care (ALCP) developed 10 indicators to monitor the development of palliative care. The indicators have been applied across Latin American countries but have not been used internally. The aims of this study were to document the development of palliative care in Argentina at the national and provincial levels by using a selection of the indicators developed by the ALCP and identify the difficulties and needs of healthcare professionals working in palliative care. This is the first study to apply the indicators intranationally. This was a cross-sectional pilot study based on two questionnaires with representatives from each province, one workshop, and telephone conversations to corroborate the collected data. These data were used to calculate a preselection of eight ALCP indicators covering four main areas of development: education, policy, service delivery, and medication. A total of 30 participants took part in the study. The application of the ALCP indicators at the province level led to the identification of inequalities in the development and distribution of services across the country. The provinces in the north-west were identified as the region with the greatest need for development. The main difficulties for healthcare professionals were lack of national service registries, certified palliative care specialties, and opportunities for continuous training. The ALCP indicators are useful tools for mapping palliative care development within countries. Further work needs to be carried out to increase their specificity and integrate them in policy design and service delivery.
Georges, Jean-Jacques; Onwuteaka-Philipsen, Bregje D; van der Heide, Agnes; van der Wal, Gerrit; van der Maas, Paul J
In recent decades significant developments in end-of-life care have taken place in The Netherlands. There has been more attention for palliative care and alongside the practice of euthanasia has been regulated. The aim of this paper is to describe the opinions of physicians with regard to the relationship between palliative care and euthanasia, and determinants of these opinions. Cross-sectional. Representative samples of physicians (n = 410), relatives of patients who died after euthanasia and physician-assisted suicide (EAS; n = 87), and members of the Euthanasia Review Committees (ERCs; n = 35). Structured interviews with physicians and relatives of patients, and a written questionnaire for the members of the ERCs. Approximately half of the physicians disagreed and one third agreed with statements describing the quality of palliative care in The Netherlands as suboptimal and describing the expertise of physicians with regard to palliative care as insufficient. Almost two thirds of the physicians disagreed with the suggestion that adequate treatment of pain and terminal care make euthanasia redundant. Having a religious belief, being a nursing home physician or a clinical specialist, never having performed euthanasia, and not wanting to perform euthanasia were related to the belief that adequate treatment of pain and terminal care could make euthanasia redundant. The study results indicate that most physicians in The Netherlands are not convinced that palliative care can always alleviate all suffering at the end of life and believe that euthanasia could be appropriate in some cases.
Gatrad, A R; Sheikh, A
National and European directives have now enshrined within European law the requirement that healthcare professionals provide their patients with culturally appropriate and sensitive care. Although well intentioned, many health professionals find it difficult to translate these directives into practice. Barriers to providing culturally competent care include racism, institutional discrimination and gaps in our understanding of the interface between culture and health--this latter factor reflecting the lack of training in transcultural health care. In this paper, we concentrate on issues relating to the provision of palliative care near death to Muslims of South Asian origin in the UK, although much of what is said will equally be applicable to Muslims from other parts of the world. This is the first of two articles giving insights into the palliative care of Muslims. The second article 'Palliative care of Muslims and issues after death' will appear in a later issue.
Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia; Yates, Patsy; Hardy, Janet
Nurses play a pivotal role in caring for patients during the transition from life-prolonging care to palliative care. This is an area of nursing prone to emotional difficulty, interpersonal complexity, and interprofessional conflict. It is situated within complex social dynamics, including those related to establishing and accepting futility and reconciling the desire to maintain hope. Here, drawing on interviews with 20 Australian nurses, we unpack their accounts of nursing the transition to palliative care, focusing on the purpose of nursing at the point of transition; accounts of communication and strategies for representing palliative care; emotional engagement and burden; and key interprofessional challenges. We argue that in caring for patients approaching the end of life, nurses occupy precarious interpersonal and interprofessional spaces that involve a negotiated order around sentimental work, providing them with both capital (privileged access) and burden (emotional suffering) within their day-to-day work.
Jubb, A M
Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly apportion finite resources. Nevertheless, the potential of palliative care is still held back by a paucity of good evidence. These circumstances are largely attributable to perceived ethical challenges that allegedly distinguish dying patients as a special client class. In addition, practical limitations compromise the quality of evidence that can be obtained from empirical research on terminally ill subjects. This critique aims to appraise the need for focused research, in order to develop clinical and policy decisions that will guide health care professionals in their care of dying patients. Weighted against this need are tenets that value the practical and ethical challenges of palliative care research as unique and insurmountable. The review concludes that, provided investigators compassionately apply ethical principles to their work, there is no justification for not endeavouring to improve the quality of palliative care through research.
Álvarez-Cordovés, M M; Mirpuri-Mirpuri, P G; Gonzalez-Losada, J; Chávez-Díaz, B
We present a case of a patient diagnosed with glioblastoma multiforme refractory to treatment. Glioblastoma multiforme is the most common primary brain tumour and unfortunately the most aggressive, with an estimated mortality of about 90% in the first year after diagnosis. In our case the patient had reached a stage of life where quality of life was importsnt, with palliative care being the only recourse. The family is the mainstay in the provision of care of terminally ill patients, and without their active participation it would be difficult to achieve the objectives in patient care. We must also consider the family of the terminally ill in our care aim, as its members will experience a series of changes that will affect multiple areas where we should take action. Copyright © 2012 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España. All rights reserved.
Weeks, Lori E; Macquarrie, Colleen; Bryanton, Olive
In this research, we endeavoured to gain a clearer understanding of what impact hospice palliative care (HPC) volunteers have on family caregivers and the underlying factors that contribute to this. We conducted ten face-to-face interviews with bereaved women who had previously provided care for their spouses and who used HPC volunteers. We checked our interpretation through a feedback focus group. Using a methodological hermeneutic approach, we came to understand the unique position HPC volunteers occupy within the formal health care system. Our constitutive organizing theme was manifest throughout the women's stories in seven thematic areas that explicate the dimensions of the overarching theme: the Unique Care Link. We identified seven themes that exemplify specific ways in which HPC volunteers have a positive impact on the lives of spousal caregivers. This knowledge can be incorporated into the further development of training and support programs for HPC volunteers, and to increase the quality of volunteer HPC services provided to family members.
On July 20, 2015, the federal Centers for Medicare & Medicaid Services (CMS) announced hospices that have been selected to participate in the Medicare Care Choices Model. Fewer than half of the Medicare beneficiaries use hospice care for which they are eligible. Current Medicare regulations preclude concurrent palliative and curative care. Under the Medicare Choices Model, dually eligible Medicare beneficiaries may elect to receive supportive care services typically provided by hospice while continuing to receive curative services. This report describes how CMS has expanded the model from an originally anticipated 30 Medicare-certified hospices to over 140 Medicare-certified hospices and extended the duration of the model from 3 to 5 years. Medicare-certified hospice programs that will participate in the model are listed.
Busolo, David S; Woodgate, Roberta L
Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement. The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework. Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care. Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer
Woitha, Kathrin; Hasselaar, Jeroen; van Beek, Karen; Ahmed, Nisar; Jaspers, Birgit; Hendriks, Jan C M; Radbruch, Lukas; Vissers, Kris; Engels, Yvonne
A well-organized palliative care service is a prerequisite for offering good palliative care. Reliable and feasible quality indicators are needed to monitor the quality of their organization. To test feasibility and reliability of a previously developed set of quality indicators in settings and services that provide palliative care across Europe. A total of 38 quality indicators, applicable in all types of settings, rated in a RAND Delphi process, and operationalized into 38 yes/no questions, were used. Descriptives statistics, factor and reliability analyses, analysis of variance, and chi-square analyses were used. Cross-sectional online survey. Questionnaires were sent to representatives of 217 palliative care settings in 25 countries. Included settings were hospices, inpatient dedicated palliative care beds, palliative care outpatient clinics, palliative care units, day care centers for palliative care, palliative care home support teams, inpatient palliative care support teams, care homes, and nursing homes. All invited 25 European Association of Palliative Care countries took part. In total, 107 out of 217 participants responded (57%). The quality indicators were reduced to four coherent sub-scales, being "equipment and continuity of care," "structured documentation of essential palliative care elements in the medical record," "training and appraisal of personnel," and "availability of controlled drugs." No significant differences in quality criteria between the different types of settings and services were identified. The set of quality indicators appeared to measure four reliable domains that assess the organization of different palliative care settings. It can be used as a starting point for quality improvement activities. © The Author(s) 2015.
Groenvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette; Neergaard, Mette Asbjoern; Nielsen, Jan Bjoern; Pedersen, Lise; Sjøgren, Per; Strömgren, Annette Sand; Vejlgaard, Tove Bahn; Gluud, Christian; Lindschou, Jane; Fayers, Peter; Higginson, Irene J; Johnsen, Anna Thit
Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient's primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0-100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (-4.9 points (95% confidence interval -11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.
Davidson, Patricia M; Introna, Kate; Cockburn, Jill; Daly, John; Dunford, Mary; Paull, Glenn; Dracup, Kathleen
Advances in the practice of medicine and nursing science have increased survival for patients with chronic cardiorespiratory disease. Parallel to this positive outcome is a societal expectation of longevity and cure of disease. Chronic disease and the inevitability of death creates a dilemma,