Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider “best” practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (=10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a “good” death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with =10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of “good” pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education
The purpose of this article is to synthesize the evidence on advance care planning (ACP), determine what is applicable to the home health (HH) setting, and find where gaps in knowledge may exist. An integrative review methodology was chosen. Although there is ample literature on the topic of ACP, most research has been conducted in the acute care, outpatient, and general community settings. There is limited literature regarding ACP with patients living with chronic cardiovascular and pulmonary illnesses, who comprise the majority of the HH population. Some literature has been published regarding the interprofessional team’s role in ACP in the HH setting. A gap in knowledge exists regarding ACP in HH, and recommendations for future research are provided.
Background: An interdisciplinary palliative care team began exploring evaluation tools used to assess changes in the knowledge, skills, and attitudes of learners participating in clinical learning experiences on an interdisciplinary palliative care consult service. This article will review existing evaluation tools, examine the themes that emerge, discuss their strengths and limitations, and make recommendations for continued development in the field.
Methods and Findings: A literature search was performed using the MEDLINE database. Search terms included combinations of the following: interdisciplinary education, assessment/evaluation, and palliative care or palliative care assessment/test. Four hundred eighty-seven articles were captured during the initial search. Articles that focused on student readiness for interdisciplinary education and team self-assessments of current interdisciplinary collaboration practices were excluded. Nine articles were included in the review. Evaluation tools varied in terms of learner type, assessment type, and frequency. No tool was comprehensive in the assessment of knowledge, skills, and attitudes or truly interdisciplinary.
Conclusions: There is a lack of comprehensive and interdisciplinary evaluation tools in the published literature. Further research should be conducted to develop a tool that meets the needs of learners in clinical experiences within an interdisciplinary service.
CONTEXT: Studies have shown that palliative care involvement delivers a multitude of benefits to patients and caregivers. The existing palliative care workforce is inadequate to meet growing demand. Innovative strategies to triage inpatient consults are necessary.
OBJECTIVES: To describe the implementation of a new palliative care triage process and to demonstrate its impact on efficiency, teamwork, and patient care.
METHODS: A quasi-experimental study design, comparing clinical consult data from a 6-month period before and a 6-month period after implementation of the novel consult triage model.
RESULTS: Across the 2 study periods, consult demand increased by 44% while the physician staffing (full time equivalent [FTE]) decreased by 38%. Penetration rate per clinical FTE increased (from 1.9%-2.4%; P = .004). Monthly physician work relative value units (RVUs) per FTE increased from 909 to 1678. Physician encounters with hospitalized patients increased from 284 to 353, and total team visits increased from 596 to 891 (P < .001). Average time to consult decreased by 2.4 hours (P = .54).
CONCLUSION: An efficient and streamlined consult triage process had a positive impact on our palliative care team's ability to reach patients. We were able to generate more physician visits and RVUs despite a decrease in physician clinical time, and our penetration rate per physician clinical FTE improved. Our findings highlight the importance of thoughtful and appropriate triage, not to mention teamwork, in helping to augment patient access to palliative care.
BACKGROUND: People living with chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD), and interstitial lung disease (ILD) suffer impaired quality of life due to burdensome symptoms and depression. The Advancing Symptom Alleviation with Palliative Treatment (ADAPT) trial aims to determine the effect of a multidisciplinary, team-based intervention on quality of life in people with these common diseases.
METHODS/DESIGN: The ADAPT trial is a two-site, patient-level randomized clinical trial that examines the effectiveness of the ADAPT intervention compared to usual care on patient-reported quality of life at 6 months in veterans with CHF, COPD or ILD with poor quality of life and increased risk for hospitalization or death. The ADAPT intervention involves a multidisciplinary team-a registered nurse, social worker, palliative care specialist, and primary care provider (with access to a pulmonologist and cardiologist)-who meet weekly to make recommendations and write orders for consideration by participants' individual primary care providers. The nurse and social worker interact with participants over six visits to identify and manage a primary bothersome symptom and complete a structured psychosocial intervention and advance care planning. The primary outcome is change in patient-reported quality of life at 6 months as measured by the Functional Assessment of Chronic Illness Therapy-General questionnaire. Secondary outcomes at 6 months include change in symptom distress, depression, anxiety, disease-specific quality of life hospitalizations, and advance care planning communication and documentation. Intervention implementation will be assessed using a mixed-methods approach including a qualitative assessment of participants' and intervention personnel experiences and a quantitative assessment of care delivery, resources, and cost.
DISCUSSION: The ADAPT trial studies an innovative intervention designed to improve quality of life for veterans with common, burdensome illnesses by targeting key underlying factors-symptoms and depression-that impair quality of life but persist despite disease-specific therapies. Leveraging the skills of affiliate health providers with physician supervision will extend the reach of palliative care and improve quality of life for those with advanced disease within routine outpatient care. The hybrid effectiveness/implementation design of the ADAPT trial will shorten the time to broader dissemination if effective and create avenues for future research.
TRIAL REGISTRATION: ClinicalTrials.gov, NCT02713347 . Registered March 19, 2016.
Qu'est-ce que l'interdisciplinarité ? Ce mode d'action vise un objectif commun, au bénéfice de la personne soignée et de ses proches, en faisant collaborer les différents professionnels du soin. Elle nécessite que ceux-ci, compétents dans leur champ disciplinaire, apprennent à se connaître, à s'écouter et à se faire confiance. La ritualisation des réunions, s'appuyant sur une méthodologie et une organisation formalisées, permettent de l'initier.
Ce livre s'adresse à tous les professionnels de santé, en formation ou en exercice, qui s'interrogent sur la dynamique du soin et sur leur rôle au sein d'une équipe soignante. Il a été pensé comme un guide qui permettra aux équipes de mettre en place des actions interdisciplinaires dans leur quotidien.
To assess perspectives of US community-based palliative care program leaders on staffing, recruitment, and training, a qualitative descriptive study was conducted. Leaders (n = 20) from academic medical centers, large integrated and community health systems, home health and hospice organizations, and the Veterans Administration were recruited. Three major categories emerged that influence community-based palliative care workforce team composition across settings: (1) staffing models and recruitment are influenced by setting and workforce experience, (2) training varies by setting, and (3) demand exceeds supply of trained workforce. Participants described a hybrid approach used in academic and community settings to complete an interdisciplinary team by leveraging social work and chaplaincy from inpatient departments and home health and hospice. Physician-led interdisciplinary teams in academic settings and teams more often led by nurse practitioners in community settings were reported. Community program leaders expressed the desire to recruit nurses with home health and hospice experience because of the ability to work independently. Training was described as more often on-the-job in community settings. Turnover related to the lack of a properly trained workforce was described as one of the biggest barriers to palliative care development.
PURPOSE: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach.
METHODS: We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration.
RESULTS: The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices.
CONCLUSIONS: The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.
Souvent éthiquement complexes, les situations de fin de vie peuvent confronter les équipes soignantes au refus de soins. Au travers d’une situation clinique représentative, un infirmier éclaire l’accompagnement déployé en équipe pluridisciplinaire, à domicile, pour entendre le souhait d’une personne en fin de vie, soutenir ses proches, anticiper les difficultés possibles et organiser une prise en charge adaptée et respectueuse de tous.
There is mounting evidence of the physical therapist’s role in hospice and palliative care (HPC) for optimizing quality of life and engagement in remaining life activities. The purpose of this clinical summary is to describe the variety of roles and clinical approaches that physical therapists are able to contribute to the care of patients with a life-threatening or terminal illness. In addition, culture, religion, and individual patient/family preferences tend to be contributing factors as they relate to physical therapy (PT) in HPC. Physical therapists have multiple practice patterns that they can use in HPC for a variety of clinical signs and symptoms, patient situations, and disease trajectories. Access to PT services is inconsistent and often depends on the understanding of the role of PT within HPC. In addition, providers must acknowledge varying levels of acceptance and integration of PT and HPC based on individual and contextual factors. In order to optimize remaining quality of life and optimize care and safety, PT and HPC should be integrated in a collaborative, prospective manner, and PT should be closely integrated with the entire interdisciplinary HPC care team.
OBJECTIVES: To describe the development, launch, implementation, and outcomes of a unique multisite collaborative (ie, IMPACT-ICU [Integrating Multidisciplinary Palliative Care into the ICU]) to teach ICU nurses communication skills specific to palliative care. To identify options for collaboration between oncology and critical care nurses when integrating palliation into nursing care planning.
DATA SOURCES: Published literature and collective experiences of the authors in the provision of onco-critical-palliative care.
CONCLUSION: While critical care nurses were the initial focus of education, oncology, telemetry, step-down, and medical-surgical nurses within five university medical centers subsequently participated in this learning collaborative. Participants reported enhanced confidence in communicating with patients, families, and physicians, offering emotional support and involvement in family meetings.
IMPLICATIONS FOR NURSING PRACTICE: Communication education is a vital yet missing element of undergraduate nursing education. Programs should be offered in the work setting to address this gap in needed nurse competency, particularly within the context of onco-critical-palliative care.
Health care chaplains participated in a multicenter trial to explore an implementation strategy for the Dutch multidisciplinary guideline for spiritual care. The intervention was concise spiritual care training for hospital staff of departments where patients in curative and palliative trajectories are treated. Data were collected in semistructured interviews with chaplains who acted as trainers, before and after the intervention. Results based on nine preintervention and eleven post-intervention interviews are presented. During preintervention interviews, chaplains describe the baseline situation of palliative care in Dutch hospitals, barriers, and opportunities for improving spiritual care. In the postintervention interviews, characteristics of the training, effects, and critical success factors were identified. Positive effects such as lowering barriers, increasing health care professionals' competences, and increasing health care chaplains' profile are possible. Chaplain-led, multidisciplinary spiritual care training is a feasible method to start implementation of spiritual care in hospitals, as described in the multidisciplinary guideline.
BACKGROUND: Advance care planning (ACP) is a critical component of quality end-of-life care. Little is known regarding the cultural influences on health professionals' attitudes toward the discussion of ACP in China.
OBJECTIVE: To better understand attitudes toward ACP among Chinese healthcare professionals in China and the influence of cultural factors such as filial piety, or xiào.
METHODS: A mixed methods study was used. This study reports the results of a descriptive cross-sectional survey of physicians, nurses and social workers with experience in palliative and end-of-life care.
RESULTS: Some 102 completed surveys were obtained. Most Chinese health professionals had an overall positive attitude toward ACP, acknowledging that these discussions should occur. However, there was a general lack of confidence and sense of reluctance among participants to engage in ACP discussions.
CONCLUSION: The lack of statistical difference between the various health professionals suggests that they all faced challenges in participating in ACP discussions. Future research should focus on the influences of cultural factors such as xiào on ACP discussion, and develop culturally sensitive strategies to facilitate these discussions in the Chinese community.
BACKGROUND AND OBJECTIVE: Untrained family caregivers struggle with complicated medical management regimens for hospice patients. An intervention was tested to improve caregiver's perception of pain management and patient's pain.
DESIGN, SETTING, AND PARTICIPANTS: The intervention was tested with a 2-group (usual care vs intervention) randomized controlled trial using parallel mixed-methods analysis of 446 caregivers in 3 Midwestern hospice programs representing rural and urban settings.
INTERVENTION: Web conferencing or telephones were used to connect caregivers with the hospice care team during care plan meetings.
MEASUREMENTS: Caregiver's perceptions of pain management were the primary outcome. Secondary outcomes included caregiver quality of life, patient's pain, and anxiety. Video recordings, field notes, and caregiver and staff interviews provided qualitative data.
RESULTS: The overall perception of pain management was not changed by the participation in hospice team meetings. Perceptions of fatalism improved for intervention participants, and the intervention participants perceived their patients' pain was better controlled than those in the control group. The intervention was found to be feasible to deliver in rural areas. Caregiver's anxiety and patient's pain were correlated ( r = .18; P = .003), and subanalysis indicated that caregivers of patients with cancer may benefit more from the intervention than other hospice caregivers. Qualitative analyses provided understanding of caregiver's perceptions of pain, cost, and facilitators and barriers to routine involvement of family in care plan meetings.
LIMITATIONS AND CONCLUSION: The hospice philosophy is supportive of caregiver involvement in care planning, and technology makes this feasible; the intervention needs modification to become translational as well as additional measurement to assess effectiveness. Caregiver education and emotional support should occur outside the meeting, and a strong leader should facilitate the meeting to control efficiency. Finally, the intervention may benefit caregivers of patients with cancer more than others.
OBJECTIVES: The primary objective of this quality improvement (QI) project was to determine if the Interdisciplinary Palliative Care Outpatient Clinic (IPCOC) at the West Palm Beach Veterans Affairs Medical Center offered improved symptom assessment and palliative care treatment outcomes. Secondary objectives were to identify, classify, and resolve medication problems and calculate the number of pharmacist recommendations accepted by prescribing providers.
METHODS: An IPCOC was created by selecting disciplines for a core group including a nurse practitioner, clinical pharmacist, social worker, chaplain, and physician. Consult referrals were recruited by providing educational sessions. The patient assessments were completed using the Edmonton Symptom Assessment System: (revised version; ESAS-R). The clinical pharmacist classified and resolved drug-related problems. The pharmacy resident telephoned veterans for completion of the "Patient Assessment: Overall Satisfaction with Outpatient Palliative Care Clinic."
RESULTS: Seventeen consults were received, 6 patients were excluded, and 11 were seen in clinic. One (9%) of 11 patients met the outcomes measure of system assessment documentation in the past year. At completion, 11 (100%) of 11 patients met the outcomes data measure. The Patient Satisfaction Assessment revealed veterans strongly agree to recommend the IPCOC. The clinical pharmacist identified 20 drug-related problems, made 16 recommendations, had a 93.7% implementation rate, and facilitated implementation of medication changes.
CONCLUSION: This QI project demonstrates that an IPCOC improved symptom assessment and palliative care outcomes in addition to resolution of medication prescribing issues in veterans with advanced cancer by integration of a clinical pharmacist into the core team.
Simulation has been shown to improve the preparedness of practitioners in acute care. In this review, the authors evaluate using simulation to prepare practitioners to deliver palliative care in multidisciplinary teams. The Joanna Briggs Institute approach was used and seventeen studies selected. The thematic analysis of the literature fitted well with Gabby, Le May, Connell, and Klein’s (2014) pyramid approach to health improvement suggesting that simulation can be used in teams to learn technical, soft and learning skills of delivering palliative care. The analysis does not indicate how learning each of these skills interacts nor if simulations in teams should be repeated, or how often.
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population.
OBJECTIVE: This case description reviews the role of PPC teams in the care of patients with complex CHD.
DESIGN: Case study and analysis of three pediatric patients with complex CHD who also received PPC services.
CONCLUSIONS: Involvement of PPC teams in patients with complex CHD can be beneficial for both families and caregivers. PPC teams can aid with advance care planning, goal setting, medical decision making, and bereavement support. Further research is needed to better quantify the benefits of PPC teams' involvement in this population.
OBJECTIVES: Evaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards the new SIPC service.
METHODS: Neurology and palliative care teams from six UK trial sites (London, Nottingham, Liverpool, Cardiff, Brighton and Chertsey) were approached via email to complete an online survey. The survey was launched in July 2015 and consisted of multiple choice or open comment questions with responses collected using online forms.
RESULTS: 33 neurology and 26 palliative care professionals responded. Collaborations between the two specialties were reported as being "good/excellent" by 36% of neurology and by 58% of palliative care professionals. However, nearly half (45%) of neurology compared with only 12% of palliative care professionals rated current levels as being "poor/none". Both professional groups felt that the new SIPC service would influence future collaborations for the better. However, they identified a number of barriers for the new SIPC service such as resources and clinician awareness.
CONCLUSIONS: Our results demonstrate the opportunity to increase collaboration between neurology and palliative care services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this.
BACKGROUND: Palliative care is associated with improved patient and family outcomes and lower cost of care, but studies estimate that <50% of hospitalized adults in the United States who are appropriate for palliative care receive it. Few studies have addressed demographic and clinical factors associated with receipt of palliative care. OBJECTIVE: Our aim was to identify characteristics of hospitalized advanced cancer patients that are associated with referral to an interdisciplinary hospital-based palliative care team. METHODS: The data are from a prospective observational study of hospitalized advanced cancer patients in five hospitals. We used multivariable logistic regression to estimate the relationship between patient characteristics and palliative care referral. RESULTS: The sample includes 3096 patients; 81% received usual care and 19% were referred to palliative care. Advanced cancer patients were twice as likely to receive palliative care referral if, at admission, they needed assistance with transfer from bed (p = 0.002) and about 1.5 times as likely if they were taking medication for pain (p = 0.002), nausea (p = 0.04), or constipation (p = 0.04). Patients with more comorbidities (p = 0.001) and higher symptom burden (p = 0.001) were more likely to be referred. CONCLUSION: Advanced cancer patients were more likely to be referred to the palliative care consultation team if they had high symptom burden at hospital admission. Overall a minority of advanced cancer patients were referred. Standardized screening for palliative care may be needed to ensure that advanced cancer patients receive the highest quality of evidence based care.
Les soins palliatifs renvoient à une somme de pratiques appuyées sur une démarche scientifique en constant dialogue avec l'expertise clinique des différents intervenants en santé : personnel médical, paramédical, psychologues, professionnels du social. Si ces équipes interdisciplinaires appréhendent différemment le réel des malades, elles convergent vers un objectif commun : la nécessité d'accompagner de façon expérimentée la période particulière de fin de vie et du mourir. Cet ouvrage présente les repères de base en soins palliatifs et expose les pratiques spécifiques développées par les équipes interdisciplinaires, en s'appuyant sur de nombreux cas cliniques. Les 50 fiches sont réparties en 10 grandes parties : 1-Que sont les soins palliatifs ? 2-Les principes éthiques des soins palliatifs 3-Les acteurs des soins palliatifs 4-Les temps du palliatif 5-Les "symptômes clefs" 6-Les moyens 7-Questionnements spécifiques (autodétermination de la personne, nutrition artificielle, sédation, euthanasie.) 8-L'expérience palliative pour le patient 8-L'expérience palliative pour les équipes 9-L'expérience palliative pour les familles 10-Dispositifs singuliers (périnatalité, gériatrie, domicile, réanimation).
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